Uniquely Blessed

Something a Little Different

2011-05-22T18:25:00.001-07:00

So this post isn't really going to be about my kids like usual. I will say that they are both doing pretty well. Izzy's last surgery has done great things for her and Wesley . . . well what can I say? he is busy, busy, busy, but oh what fun!

Anyway, back to the big news in my life right now. As I have stated before for those of you who don't know me that well, I am a teacher. This is my 10th year of teaching! Which is pretty unbelievable to me. Well, every year I think since my first year of teaching I have had either ducks or chickens hatch in my classroom. I always teach on the birds while they are in my class. This year I have a class that I have had for the past 3 years, so I felt like I needed to do a new bird.

With the help of my little sister and an acquaintance of hers I was able to obtain quail eggs for my classroom this year. The farmer who donated them to my class gave me a total of 120 eggs!!! Which is way more than I need for my class of 6, but I am always ready for a challenge so I accepted his gift.

We have had them in our classroom for the last 3 weeks, just waiting for "hatching day". Well it came a few days early and on Friday the hatching began. By the end of the day I had 12 baby quail. I went in to check on them today and I was up to 40! I think I am as excited as my students. They are so little and absolutely adorable. I can't wait for my students to see them tomorrow.

Being that they are so cute, I figured I would share some adorable pictures with you. Kind of like the bragging pictures that go in a brag book, but these are my bird bragging pictures.

These pictures are just to try to give you a little perspective as to how little they really are. . .

A little thank you to my good friend Marla. She knew my camera went kaputz and also knows our finances aren't the best, so she surprised me with a new camera! Thank you, thank you friend for the gift. The pictures look great!

Free at Last

2011-04-25T06:02:00.000-07:00

They finally let us come home. By last Tuesday, I was starting to think it was going to take us another week or more before they would let us come home. Then on Tuesday afternoon they started feeding Izzy. They were only giving her 5 mL an hour which is equivalent to about 1 tsp. each hour. They left her at that rate for 24 hours and I feared that if they were going to go up only 5 mL each day it was going to take us at least another good week as normally she is at a rate 75.

Well, after that first day they started increasing her by 5 mL every 6 hours. And by Thursday they were increasing her by 10 every 6 hours. So by Thursday afternoon they were up to 50 already. Which was great because 50 is what she had to be at in order to come off of the TPN and lipids they had her on. And then they told us, that if things stayed fine they would be discharging her on Friday! Man we went from extreme slow-motion to hold on to your hat cause here we go. Which I am not complaining about, I was just surprised.

So Friday morning I went and ran some errands and then was off to the hospital to go get my little princess. By the time I got there, Jeff had already signed all the papers and we were technically already discharged. So we cleaned up the room and were out the door.

The surgeons had given the okay to take her up to my parents for the weekend and even said we could take her straight from the hospital, so we did. We drove about half way to my parents and my dad came and got Isabelle and myself as Jeff was not coming up until Sunday. She did great on the car ride! Not a peep! Which I was not expecting, but it was great.

Overall, she has done really well. Nights are probably our hardest as I am still struggling with positions for her as her new J-tube is on her far left and her giant incision is on her right side, so when I try to put her in a position that isn't on her back I'm not always successful because I think it's all still a little tender. The best news is that the J-tube seems to be working. She has not had 1 formula spit-up since it was put in. Yeah! The only thing we are still having is some mucusy spit-ups. So in a few weeks we'll make an appointment with the saliva clinic (yeah, I didn't even know a clinic like that existed before we had Isabelle) to see if we can cut down on some of those kinds of spit-ups. It will be so nice to not have to carry a whole bag of spit-up clothes with us.

I'm looking forward to seeing where things lead on this new medical endeavor. Thank you again to all who have sent their prayers up to heaven. Your prayers mean so much to my family and me.

I've Decided

2011-04-16T20:07:00.000-07:00

So I have decided something after this stay in the hospital. I think all nurses and respiratory therapists should have to undergo all of the different procedures and things they do to patients during their schooling.

I have watched just during my visit today a nurse wiggle an IV around while trying to pull it out, suctioning Izzy's mouth all the way to the back of the throat, wrapping an ace bandage around a newly placed pic-line(I'm not sure that is how you spell it) that is obviously tender, more suctioning, trying to push a piece of gauze under the new feeding button which also is extremely tender, and more suctioning.

I've watched a respiratory therapist . . . push a mask onto her face to try to give her breathing treatments all the while pushing her nasal canula pieces up against her face between her eyes, suction Izzy way back in her mouth to try to make her cough so she can get the gunk they think is in her throat, suctioning with a tube that is being pushed back and forth down her nose till it bleeds a bit, and suctioning with a tube being pushed down her throat.

I hate watching them do all these things. I know some of them are necessary, but I wish the nurses and therapists had to experience all these things so they would understand why she is upset. Today the respiratory therapist kept saying, "I don't know why she is so upset, she wasn't that upset earlier today." Well of course she wasn't. How would you like a tube shoved down your throat over and over? How would you like to be poked and moved and prodded over and over when you can't even say how you are feeling?

At one point, I just wanted to scream "just leave her alone!" I hate watching her have to go through all of that. I just can't wait for it to be over, but we haven't even started feeding today. So I'm not sure how long our stay will be this time.

I just keep praying for quick healing, for her bowels to start working again, and for her to have understanding and gentle nurses.

Never What We Expect

2011-04-13T15:29:00.000-07:00

Well, yesterday was quite the long day. Izzy's surgery was scheduled for 12:30. We got to the hospital by 11 like they asked and were moved into what I call the pre-op holding area. They checked her in, took her vital signs, and drew some blood. Then we waited and waited and waited. First the nurse said it would be postponed about 40 minutes. After about an hour, she came in and said it would be another hour. Finally about 2:30 they moved us down to the pre-op area where you talk with all the doctors. After meeting with about 6 of them, we gave her a kiss and the wheeled her away.

They told us the surgery would last about an hour to an hour and a half. We waited in the waiting room for about 2 hours before they called the family waiting room. Jeff had left to go to choir, but asked that I call him as soon as I heard something. About 5:00 they called. I thought they would say they were all done and I'd meet with the surgeon shortly. Instead, they were calling to say that they hadn't even started putting the new feeding tube in because they had spent the last 2 hours trying to get through all the scar tissue her poor intestines had all over them because of all her prior intestinal surgeries.

So we waited some more. After about 45 minutes, the surgeon came in to meet with me. He said the surgery had gone well once he got through all the scar tissue. He compared it to a guy trying to work on pipes, but the pipes were all cemented together. He said in one part there was an adhesion that had actually adhered to the stomach wall that he had no choice, but to cut through the intestine to get it free and then once he was done he put it back together. Because of all of those problems with the scar tissue they actually had to make her incision much larger than originally expected. She now has and incision pretty much across her entire lower abdomin. I teased that now she will have a scar just like mommy.

Anyway, she was in recovery a very long time. I finally got to go see her just before 8. That waiting was almost harder than the waiting during the surgery. She looked pretty good though for what I expected.

Shortly after, they wheeled her up to her room. As the nurse on the floor started to take her vitals, Izzy started breathing really hard and her O2 levels were not very high. The nurse was a little concerned and wanted to give her a breathing treatment to help her breath a little better, but all of the residents and doctors were down in the ER for a trauma patient that had just come in and they were expecting it to take quite a while. The nurse worked really hard to try to find another way to get the breathing treatment approved so that we could get that going. So finally about 9:45 they were able to give it to her.

When we finally left just after 10 she was breathing a little better and was looking very sleepy. I knew Jeff was going to be back shortly, so we finally started the 45 minute drive home. I was so thankful my dad and mom were with me so that my dad could drive.

I tried to get to bed as soon as we got home, but for some reason Wesley was wired. So it took a bit to get him to finally give in and go to sleep. Craziness! I the adult was so ready to pass out and he acted as if the day was just starting.

As for today, I was up by 5:30 to get ready and go to work. I actually surprised myself with how well I did throughout the day. Once the school day was over, I packed up my stuff and headed back for the hospital which is where I am now. I had heard she had a rough night and morning so was not expecting my visit to be too quiet, but she has actually been really content which is why I am having a moment to post.

I just pray that each day will get a little easier and that hopefully in the next few days they will be able to begin feeding her again. Please pray for a quick recovery as this is a much bigger recovery than I had expected it to be. And pray that she will be able to rest so she can heal. Thank you to those of you who have been thinking of us and praying for her. I promised her this would be the last surgery hopefully for a long time.

Just Can't Get It Together

2011-04-10T09:07:00.000-07:00

I can't believe how much time has passed since I last posted. I used to be so good at posting and now the last 6 or so months I have just fallen behind. Maybe it's because I have never had a 2 year old to keep up with or maybe it's because life is just moving so fast or maybe it's because my blog hasn't been top priority these last months, but whatever the reason I am going to try my best to be better at this.
So here goes another short re-cap of my life over the last month and a half.
Isabelle did very well with her surgery. She was in and out of the hospital amazingly quick if you ask me. I can't believe how quickly they move you out after such a large surgery. I can't say I'm complaining because we have spent more than out share in a hospital so coming home early is good with me. She had a to wear a pretty hefty brace which went from her tummy to about her ankles. It didn't spread her legs out as far as the last brace, so she actually managed very well while she had to wear it.
After 4 weeks she was given the okay to take it off. We were excited about this however, she seemed to be in more discomfort after the brace came off. We had quite few sleepless nights of crying. Finally, after about 3 weeks of being brace free she seems to be having good nights of sleep and is smiling a lot more.
Now that we have that all taken care of she goes in this Tuesday for her next procedure. She is having a J-tube placed in her intestines to hopefully help with her reflux. We were told her reflux would be better by the time she was 2, but it didn't change a whole lot so now we are trying this. We are praying this will work for her and she will have less spit-ups and we won't have to travel around with so many burp clothes anymore.
As for Wesley, he is all 2! That boy never slows down. I tease he makes up for all the lack of movement Izzy doesn't do. He climbs everything, goes into anything that opens and moves constantly. But man is he fun! He brings much laughter to our house and shows such love and compassion for Isabelle. It warms my heart when I see him reach out to interact with her on his own. He loves his sister.
As for me, I have been busy still looking for a new job, taking a class to keep my teaching license up to date, taking care of the household stuff, and being a mommy. This could explain my lack of blogging. I look forward to spending time with Izzy and Wes each night even though some nights I haven't been able to spend as much time because of my class, but still have somehow managed.
Jeff has decided to go back to school this summer to renew his EMT license. He really seemed to enjoy working as an EMT when he did it last, so I am happy to see that he will be getting back into this. From there, he is hoping to go towards being a Paramedic at some point. He is still unemployed which has been quite a challenge income wise, but it has been nice to have him home to watch Wes, so we don't have to pay for that childcare.
That pretty much sums up the major things in this household over the last month and a half. I haven no pictures because our camera died and we can't afford to buy a new one right now, so the pictures will have to wait.
For those of you who follow my blog, thank you for your patience and for continuing to follow my wonderfully blessed life.

I'm Baaackk!

2011-02-15T17:22:00.000-08:00

Well, it's taken me what seems like forever to take the time to post on here again. Life just seems to be happening at such a quick pace. Christmas came and went. Our family gained to new beautiful nieces - both born right before Christmas. Noelle Elizabeth a dark haired, dark eyed baby and Adrionna Noelle a little blonde beauty. Both named with my middle name and both 2 new goddaughters to keep after and love.

Then came January and getting back into the schedule of school. On top of keeping up with school and the family stuff I am looking for what God's will for my life in the job world is right now. So I spent a lot of time this past January updating my resume and sending it out to as many Lutheran school as I could to try to find a new calling for my life.

This time went by quickly and next thing we knew for any of you who live in the midwest we were hit with one massive blizzard of snow. By the time it was all said and done we had about 24 inches in one day. It took us 2 days to shovel out. I honestly think I could have stayed tucked in, stuck staying away from the realities of life, but then the plows came through and it was back to work.

So now here we are . . . the middle of February already. Jeff and I took a weekend finally (our first one in 2 years) to get away and spend some time. We took a train to Chicago and stayed with a girlfriend from my childhood and her husband for the weekend. We had a great time getting away from it all and just spending time with another couple. Unfortunately once again we had to return to reality. I was ready to get back to my kids, but not the rest of the hustle and bustle of life.

Next Monday we go in for Izzy's second hip surgery. This surgery they will have to cut through the bone to try to correct her hip. I am hoping this will ease the pain she has been experiencing lately, but am concerned it's also going to be a longer recovery than the last one seems to be taking. Only time will tell I guess.

I guess to some it all up. I'm just feeling so tired. I'm stressed. I'm confused. I'm exhausted. And I just wish life would slow down a bit so I could try to catch up and so I could make some sense of the plans the Lord has for me.

Imagine

2010-11-07T07:11:00.000-08:00

I was giving Isabelle a bath the other night. She was sitting in her bath chair, which has really helped in the bath giving element of our day to day cares. The shampoo bottle was near empty so like I often do I added some extra water to the bottle and shook it up to get the absolute most use of that bottle as possible. You know as well as I know that when you do something like this the shampoo is obviously not anywhere close to the same consistency it originally was. It becomes very runny. Well as you probably could guess by now some of the shampoo ran down her forehead and into her eyes. My poor little angel squinted her eyes and moved her head around as I quickly grabbed a washcloth and tried to get all the soap out of her eyes. As I finished up the bath, feeling sorry that I had let this silly mistake happen, it made me think a little bit more about having a special little one in my life. I’d like to invite you to imagine a bit with me.

Imagine . . . getting soap in your eyes and not only not being able to wipe it out with your hands, but probably not even understand what is causing this horrible sting in your eyes.

Imagine . . .going to bed at night in one position and the only way you can move to a new position is by crying and letting someone else move you into some other way that is comfortable enough to sleep in. (If you are like me, I am a tosser and a turner so I can’t even begin to imagine having to rely that heavily each time I wanted to switch positions.)

Imagine . . . having a tummy ache and not only not being able to tell someone you just don’t feel well, but also not having the ability to take something to calm the stomach. Instead you just have to ride it out until it’s gone.

Imagine . . . having an itch somewhere and not being able to reach back or down and scratch it. You can’t ask someone to get it for you, you can’t even wiggle your body around to allow whatever you are sitting in or lying on to help the itch subside.

Imagine . . . not being able to hold your head up by yourself for longer than 7 seconds. Think of how difficult it might be to see most of the world sideways.

Now I’m going to switch things a bit.

Imagine . . .feeling love not through words, but always through actions whether it is cuddling late into the night or a quick little smile when being spoken to.

Imagine . . .watching a little brother show so much care and concern for his big sister, dropping whatever he is doing at the drop of a hat to run and get a burp cloth when his little sister is coughing or running to get you when she is fussing because he is concerned something is wrong.

Imagine . . . always feeling needed and wanted.

Imagine . . . being able to connect with other special parents as you understand their ups and downs because you have gone through so many of them yourself. You can completely relate to the feelings that they experience and the exhaustion they are feeling. And because of this all, they have become your friends and can often know just what to say to bring your spirits up because they have been there too.

Imagine . . . being so proud of such simple things - celebrating things that most people completely overlook. Thanking God for each new day you have with your little one because you never know what tomorrow will bring.

These are some of the feelings that happen in my house. You may have read the first set of “imagines” and thought “Oh that is so sad.” I’m not going to lie. It does hurt me for Isabelle sometimes that she is challenged in certain ways so much, but at that same exact time with those same exact trials she faces I have been given a gift. Having Isabelle in my life has given me gifts that I’m not sure I would have ever experienced without her. And even more important than that, I know she has a God who always has His loving arms wrapped around her giving her comfort when needed. Knowing this brings a calming comfort to my heart.

Halloween In All It's Glory

2010-10-31T18:00:00.000-07:00

I know there are plenty of people who are not fans of Halloween. I am not one of them. I'm not a die hard Halloween fan, but I do love the holiday and all the activities that go along with it. I think it comes from that fact that when I was a child we lived in a parsonage so we would average all of 1 or maybe 2 trick or treaters a year who were most likely related to us. To trick or treat we would get into the car and drive to a few of the church members' houses and then head home. As I grew older, I was allowed to trick or treat in friends' neighborhoods. I guess because of these experiences I can't help, but be excited that we live in a neighborhood. I love to see the creative costumes and the excitement on the faces as children go from house to house waiting to see what goodies they are going to get.

This year was especially exciting for me as this was the first year that we went all out trick or treating. Instead of doing a whole lot more typing I think I will just share some pictures from our week and the many activities we did as a family.

These first few are from carving pumpkins last Sunday. This was interesting as this is not so much a 2 year old sport. In fact, Wesley thought trying to eat the inside squishy stuff was much more fun that actually cutting the pumpkins.Here is Izzy on Thursday before going to her center. My mom made the dress and bought her the cute headband. She was all decked out.
Lastly, are some pictures from trick or treating tonight. Opa (Jeff's dad) came with us. My husband was the dashing old lady whom Opa told people was his mom as we went trick or treating. It took Wesley about 20 minutes before he would even go near Jeff, as the mask freaked him out. Granny (aka Daddy) went home early because he caught a chill. So we did a few more houses and we finished our trick or treating at home.

Just the Way It Is

2010-10-23T10:24:00.000-07:00

Isabelle's nurse called me twice during the school day yesterday to talk to me about how agitated Isabelle had been during the day and how they were having trouble calming her down. Both times I spoke to the nurse on the phone I could hear my poor baby girl screaming in the background. They had tried numerous attempts to calm her down by repositioning her and had given her ibuprofen, but nothing seemed to work. So on my second phone conversation I told the nurse I would leave school as soon as all my students were gone so I could go pick up Wes and be home in time for Izzy to get dropped off early.

Her driver arrived just minutes after I got home and she appeared to be fine, but shortly after I got her in the house the screaming began again. I tried her on the tummy, I tried sitting her up in her crib, I tried her bent over. Nothing seemed to work. I ended up giving her some diazepam to try to help her relax and then finally after it kicked in she was able to settle down a bit.

It is so hard with her sometimes as you never know what is causing the irritation. Does she have a tummy ache? Are her muscles in her legs hurting? Is she just tired? Is something else bothering her that I don't even know about? This is the part I hate - the guessing game. And in the end most of the time even after it has passed I still have no idea what was the matter.

Today we were suppose to go over the my brother in lawss to have an early dinner and then to go trick or treating with the businesses in their little downtown area. It sounded like a lot of fun, but after the day Izzy had yesterday and then the night of her waking up and crying for what seemed like no reason I was doubtful we would be joining in on the fun.

Thankfully Jeff's parents offered to take Wes with them so he wouldn't miss out, but poor Izzy. It is so hard to plan things with her. I am sure this is somewhat true for any parent, but with us the likelihood of our plans actually happening seem to be even less. It's so hard to plan not knowing if she is going to be having a good day or a bad day. Will she be content or cry? Will her reflux be worse or not so bad? I want so much for her to be able to experience as close as possible all the same experiences any kid should have. We try so hard, but it doesn't always work out that way. And as sad as that can make me feel, I just have to do my best to keep trying and to remember that is just the way it is. So we continue to plan and continue to try and continue to pray that God will wrap His arms around her and help her to have more and more better days.

Just For a Day

2010-10-06T17:45:00.000-07:00

My life lately has been more than crazy. Jeff is working insane hours right now which basically leaves me as a single mom who works full time. I have been feeling very emotional lately probably because I feel like I am being pulled so thin in so many different directions. I get up in the morning, get the kids ready for the day with some assistance from Jeff, leave for work, drop Wes off at the babysitters, work a full day, pick up Wesley, twice a week take Wesley to speech, get home just in time for Izzy's drop off, make dinner, give baths, play a bit with Wes, snuggle a bit with Izzy, get all of Izzy's things ready for the night and the next day, get the kids in bed, finish any school work I brought home for the night, and then crash into bed hoping Izzy will have a better night, knowing in a few hours the whole thing is going to start all over.

On top of it all, even with Jeff working crazy hours, we are still struggling financially probably due to trying to catch up for the months he was without a job and because I was given a pay cut this year. All of this has caused me to tell myself over and over "just get through today, God is going to work it out somehow, just be patient." And as much as I tell myself that, I can't help but worry. I have tried to figure out how I could get another job to help us get through. But how would that even be possible? Could I even squeeze something in if I wanted to? And the worst part of it all is that I already feel like I am stretching myself so thin that I am not being fair to my kids and I'm not spending near the amount of time I want to with them.

So times like the weekends are so important for me. And even though I still have all the household responsibilities to do I can sometimes put them aside for the day to just spend time with my kids. And that is exactly what I did this weekend. My sister Kim and I ventured out into the chilly day to pick some apples. I was a little apprehensive for Izzy being out in the cold, but decided to give it a try anyway. And in the end it was just what I needed.

For a day, I forgot about that crazy busy schedule I call my life. For a day, I forgot about how I was going to figure out how to pay all the bills on time. For a day, I spent some time outside in the beauty of God's creation at a nice easy pace. For a day, I got to do exactly what I wanted to do and was able to . . . just be a mom.

Belle Belle's Brigade

2010-09-28T04:47:00.000-07:00

My family and I were again able to participate in a special walk for cerebral palsy this past Saturday. It was a cold, slightly windy morning, but we bundled ourselves up and headed out to take part in the activities. We had 16 people participate in Joe's Walk, Run, and Roll in honor of Isabelle this year. Our team's name was Belle Belle's Brigade. It was exciting having so many family and friends with us to participate in this walk that has become pretty special to our family.
When we got there, I passed out everyone's bright red shirts. We talked and laughed as we got ready to walk. And then they started the opening festivities. Casey McGee, one of the Brewers players, talked about the importance of the walk as his son too has cerebral palsy. And then we were off!
And as the people started to walk, run, or roll I . . . started to cry. It was about at this same time that I cried last year. I walked as I looked at the sea of red all walking for cerebral palsy. And I wondered, "Why are you crying?" But then it came to me. I'm crying because all the people around me value people with cerebral palsy. All the people around me have given up money and some of their time because they feel people with cerebral palsy are worth helping.

I am very aware that there are people out there who don't value people who have cerebral palsy. I have been fortunate that I have never come across one of these people personally (and it is probably fortunate for them as well because I am not sure how I would react to their feelings), but I know that people in my family have. There are people out there who think that no micro preemie should have the right to live as all there life will be is troubles. There are people who believe that children with disabilities such as cerebral palsy are a waste of space and time.

We were somewhat faced with these thought processes when Isabelle was first diagnosed with her severe brain damage. We were sat down and asked if we wanted to continue cares for her or if we wanted to starve her so we could end it all, they put it in medical terms probably to make it not sound so cruel. I remember how shocked and hurt I was when we were asked this (and if I wasn't in the middle of the emotional whirlwind we were in I probably would have scolded each one of them). But I didn't, instead I cried and prayed for God to keep her safe in His loving arms.

She is my child. I don't care if she won't be able to do all the things people deem as "normal". She is my flesh and blood. She is my gift from God and when God is ready for her to not be with me anymore He will take her home to be with Him, but until that time He is giving me the opportunity to enjoy all that is Isabelle and to learn from her.

When I really think about it, people should open their eyes because children and people like Isabelle are the exact opposite of a waste of life. She should be an inspiration to people. She has had to work harder than most others to do such simple things. She has had to rely and trust others completely to help her. How many of us have that kind of trust? How many of us have had to work so hard to just do a simple thing such as hold up our heads? Our lives are easy. Her life is far from easy and yet she keeps working and trying and that is just one of the things that makes me so proud to be her mommy.
So thank you to everyone who values all the special little people in the world, like my Isabelle, who have had to work so hard to accomplish the things they can. And thank you to my family and friends who either participated in the walk or gave money towards it's cause. We have been touched and blessed by having each one of you in our lives and are honored to share this special day for Isabelle with you.

Something New in Our House

2010-09-12T16:54:00.000-07:00

Take a look closely at this picture and see if you can guess what is new in our house.
Have you guessed it yet?
I'm guessing for most people they would not guess that this is something new in a household of children, but in our house it is. Isabelle is not crossing her legs! I have not seen this from her since she was very, very little. So it is looking like the surgery was a success and it gives diaper changing a new meaning. This is the good news.
Then what is the bad news? Well, she still will need to have another surgery within the year to reshape the bone. And?!?! She is not done with things on her legs. She came home this week without her casts, but instead with something called a rhino splint. At first I thought, okay this is a good thing, we are one step closer to the end, but when she came home and I saw how far apart her legs were being spread (which actually I think is further than the casts spread them) I didn't feel as optimistic.
She cried practically the first entire night. Which worried me for the rest of the month she has to wear these, but things have been better than I expected. She is harder to position, but she is still pretty content. We go back the first of October to find out if she is all done for now or if she needs something on longer.

All in all, I am thankful that she has been as content as she has been. I'm also thankful that she can now lay and her legs aren't always crossed. And lastly, I'm thankful that I can change her diaper again without having to pry her legs open. :)

Pretty in Pink

2010-08-11T19:30:00.000-07:00

Here's my baby girl sportin' her pretty hot pink casts. She came home this afternoon and has actually surprised me with how well she seems to be doing. We'll see how tonight goes. Thanks to everyone who has lifted her up in their prayers. She is such a fighter!!

Quick Surgery Update

2010-08-11T08:14:00.000-07:00

Isabelle had her hip surgery yesterday. Before the surgery her pulmonary doctor did a bronchioscope (I have no idea if that is how you spell it). Things there seemed to be okay with that. She apparently has floppy tissue above her voice box which causes her to sound so raspy, but there is nothing be repositioning that you can do to get rid of that. That is bad news because the raspy sound is here to stay, but good news because that means no surgery for that.

As for the hip portion, the surgery went faster than expected, but that is because they could only do one part of the whole procedure. When the doctor went in, he released the tension by cutting the muscle. The right hip popped back into the socket fairly easily. The left on the other hand didn't budge. They cut more muscle and then with some extra help they finally got it back in. Due to the extreme tightness of those muscles they decided they needed to let them stretch before they can cut through the bone to do the second part of the procedure. So it looks like we will be going through a similar situation again sometime this year.

When we were finally able to see her, she was lying actually fairly calmly. As they pulled down the covers I was surprised to see bright fluorescent pink casts on both of her legs with a bar about 2 feet long positioned between her ankles to keep her legs apart and stretch those muscles. My poor baby. That does not look comfortable at all.

When I left last night, she was a little restless, but overall not too bad pain-wise. Right now it seems our biggest problem is that she is not peeing. So they had to put a catheter in to empty the bladder yesterday afternoon. Funny thing, I have watched my baby go through so much and yet out of everything yesterday the thing that bothered me the most was being in the room listening to her cry while they put the catheter in. Probably because I have experienced one myself, but man do I hate those things and I hated the fact that she had to have one put in too. They took it out, but from talking to Jeff this morning (he stayed with her last night) they had to do it again this morning.

So we will see what today brings. She was suppose to only be there for 24 hours because of them only doing the muscle cut part of the surgery, but she may be asking to stay a little longer. I'll try to update with some pics later.

To G or Not To G

2010-07-23T20:54:00.001-07:00

That is the question that has been on my mind a lot lately. I know about a week or so ago I wrote about my frustrations with the GJ tube. Well, those frustrations did not go away. Within a day of that post Izzy was spitting up formula again. In frustration, Jeff and I looked at one another and decided it was time to say good bye to the GJ tube. Instead of taking another long car trip to the radiology department we decided since we were just taking it out that we would save ourselves the trip and take it out ourselves.

We were asked a few times if that is something we should have done ourselves. I am not sure technically that is what her GI doctor would have suggested, but after watching them take the tube in and out at least 3 times and having had experience putting a G tube in ourselves before we opted for this option.

Part of me was feeling relieved to go back to the familiar G tube. But by the next morning I was already missing the GJ tube. I know, I know. I'm never happy. I guess it was just getting use to the GJ, but while she was on it she breathed better, had less spit ups, and slept through the night. Now we are back to having to carry a number of burp clothes with us just in case she can't handle her feeds, she sounds all raspy when she is just breathing, and we haven't had a full night of sleep since we switched.

So now I am stuck with this question of what is better? I can't see myself being able to do a 45 minutes to an hour drive per week when I'm back at work just to do the GJ, but I also miss the ease of her breathing and the nice full nights of sleep. I guess we are going to have to ask her GI doctor why the GJ button did not work with her and what other options we might have. But until then I guess I will continue to wonder "To G or Not to G" that is the question.

So Many Frustrations - So Little Time

2010-07-18T09:11:00.000-07:00

So for over the past year Isabelle's GI doctor has been talking to Jeff and I about having Izzy get a GJ tube. This means that instead of feeding her into her stomach it passes through there and goes to the intestines. The point of this is that there is a valve between the 2 that does not allow food to come back up so it could help with Isabelle's reflux issues. With this button, Isabelle should have no spit ups of formula whatsoever. Well I really fought doing this for 2 reasons. 1. We tried something similar to this before but it was a tube that stuck out of her stomach and it looks hideous and fell out within 24 hours of having it. 2. Apparently GJ tubes come out easier and can only be placed by a radiology team to ensure it is all the way to the intestines.

Well after a year of fighting it I finally gave in. At our last appointment in May the doctor showed me that the part we would see is only a button a little larger than what she currently had. So I said okay we would try it on a trial basis with the understanding if her reflux didn't get any better or if we had problems with it falling out we could go back to the G tube. So Jeff set up an appointment and we waited to see what would happen.

Our first appointment was suppose to be at the end of June, but the morning of someone from the radiology department called and said the appointment was made for the wrong part of radiology and that we would have to re-schedule - frustration number 1.

We set up another appointment for 2 Wednesdays ago. Jeff and I took her in. I went in with her and watched as they stuck this thin long wire through a thin tube into her button hole and then moved it around until it was in the intestine. The lady doing it was a Physician's Assistant and she had told me if she had problems getting it in she would call the doctor to come do it. We did it once - it wasn't in right. We did it again - still not right. We did it a third time and by now I think my little Isabelle was getting a little uncomfortable - yet it still wasn't right. In my head I'm thinking "for sure by now we will call the doctor." Nope. Frustration number 2. Finally on the fourth try she got it.

We were told a nurse was then going to come and talk to us about the button and how it worked. We were given instructions on care of the tube. However the 2 questions that I asked about using it the nurse didn't know what to say and said "I think you will need to call your doctor's office about that." I'm thinking, "Lady, these should be answers you should know. My daughter is already late to start her feeds for the day and now you can't tell me something that I need to know in order to do that." On top of the fact, that my doctor's office sees so many patients that sometimes it can take hours for them to call back. Great. Frustration number 3.

Fortunately, the daycare where Izzy goes has some great nurses and they were able to answer my questions so we could get Izzy on her feeds. At this point, I thought we were good to go to test this thing out. Boy was I wrong. A day later Isabelle came home from her daycare in her transport van. As I opened the door, I looked and she had formula all over her. I brought her in the house, cleaned her all up, and she spit up formula again. Frustration number 4.

So early the next morning I call our GI office and ask what this means or what I am suppose to do. My doctor's nurse instead of saying let me talk to the doctor and get back to you says, "You need to call radiology and see what they say." Great, the same people who couldn't answer my question about this button are going to help me know what to do. Well I called and they say that I need to bring her back in. Jeff took her in and sure enough it had come out of the intestine and was all coiled in her tummy. They had to re-do the whole procedure - frustration number 5.

She came home that night and I was excited to see no formula. We had a great weekend and start to the week with no spit-ups and I started to relax thinking it just must have been a fluke. Wrong! Wednesday night she comes home and again has spit up formula. So back on the phone I go to my GI office who in turn sends me to radiology again who states that yes again we need to come back in - frustration number 6. We could not make it in on Thursday, so I made an appointment for Friday.

Friday morning Izzy and I get back in the car for another 45 minute drive to the hospital. We go in and sure enough it's out again - frustration number 7. The radiologist asks if we want to do it again or try that long tube that hangs about 6 inches out of her stomach. I say we will try this one last time and if it comes out again we are going back to the G tube. She puts it in and sends us on our way informing me that we really shouldn't be turning the button at all unlike the G tube. Well that would have been good information to know the first time we were there - frustration number 8.

With this new knowledge I thought I think it's gonna work this time. And again I was so wrong! By the time she got home that night she had already spit up formula - frustration number 9. It's the weekend now so I am waiting to see if we have anymore spit ups, but I am pretty sure it is out again and that the G tube is in our near future.

I know that this button is used by many children who have feeding tubes. What I do not understand is why we are having such a tough time with it. I guess we will have to discuss this with our GI doctor when we see him next, but for now I have decided the GJ doesn't stand for Gastric-Jejenum, I think it stands for Giant Joke.

Let the Summer Fun Begin!

2010-06-24T06:47:00.000-07:00

We have had a fun filled week in our house this week. I wish more of it would have been all family, but I also know it is very important for Isabelle to attend her daycare so she can receive her therapies. But anywho . . .

On Monday, Jeff and I took little man Wesley to the zoo. We have this smaller sized zoo in our town that is right on Lake Michigan. It is a beautiful setting and on Mondays it is only $1 for residents of the county. It was a beautiful day so we decided to take advantage of it. So off we went to the zoo. Sometimes it was quite the challenge to get Wesley to see the animal cozied up somewhere in the cage, but we did our best anyway. As we were walking through the zoo we came to the giraffe exhibit. There were quite a few people around it and we weren't sure if there was a zoo chat going on or what. But as we got closer we realized that there were people feeding the giraffes! Well we definitely wanted to be a part of that so we moved closer and sure enough we got our turn. How amazing to be that close and to be able to touch an animal of that size. It was pretty incredible. I don't know who was more excited Jeff or me.

Then on Tuesday, Isabelle's daycare had a field trip to a park in Milwaukee. It was another beautiful day. We sat under a pavilion and made kites all together and then we got to fly them. They were very simple kites, but boy was it fun to watch some of the little guys from Isabelle's daycare run around and try to get them up. It was almost comical watching Jeff try to run while holding Izzy to try to get her kite up. And when Izzy was done flying her kite. It was Jeff's turn alone. I think Jeff was trying just as hard as some of the kids were. :)

This is one of the things I love most about Isabelle's daycare. A few times throughout the summer they try to take the kids to different places for field trips. I love the normalcy of it all even though from an outsider it probably doesn't look normal at all. To see all these kids, some in wheelchairs, some with trachs, many with feeding tubes, some with suction machines on hand, some who struggle to walk all outside making kites and then trying to fly them. It was beautiful! And the smiles on their faces were precious. I am so thankful to be a part of moments like these
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Caution: Pity Party in Progress

2010-06-11T11:04:00.000-07:00

Well, I took Isabelle to her first Orthopedic appointment today. I have decided I need to prep myself better for these new appointments. Last year about this time I took her to her first eye appointment and left there feeling sad for her and ready to cry. Well, today was no different. We went to the appointment and by the time the doctor left the room I was ready to break down in tears. We had this appointment because one of Izzy's doctors was concerned about her spine and it's curvature. I had thought we would go in, they would maybe do an x-ray, and then we would talk about possibly doing some kind of brace for her back. Boy was I wrong.

We did take a look at her back, but the doctor was actually more concerned about her hips. In the end after numerous x-rays and some physical evaluations, we sat back down in the room. From there the doctor informed me, that both of Izzy's hips are pretty much dislocated from her high muscle tone. AND . . . here it comes . . . the only way to fix it is . . . SURGERY! I was in shock. Not for one moment this morning had I considered surgery as an option.

And that leads me to my pity party. As I drove home, I thought of how different my life with my 3 year old is compared to other's lives with their 3 year olds.

Most people with 3 year olds are spending their summers playing in the water or outside, watching their 3 year old discover, run around, get hurt, and get into trouble. Their 3 year old can talk and sing and laugh. Their 3 year old is a bundle of energy just waiting to explode. And even when their 3 year old is naughty it still is somewhat incredible as their little personalities are starting to show.

Now for my 3 year old. My 3 year isn't spending her summer like other kids. She is spending a majority of her summer in a special needs daycare so that she can continue and keep up with her therapies. My 3 year old isn't running all around or getting into trouble, she is being repositioned from one position to another by someone else. My 3 year old doesn't have the opportunity to be naughty. And now instead of playing around outside and getting hurt from falling down my 3 year old will be having surgery!

I typically have prided myself in my strength when it comes to Isabelle. I have even surprised myself at times at how well I have been able to handle the situations that have faced us since having Isabelle. I know that this credit should not be given to myself, but to my God, but even so I am thankful for the person I have become and have been able to be because of having Isabelle in my life.

But even with all the strength there are times when I feel defeated. There are times when I think, "How much will this little warrior have to face in her life?" and "Why has she been given so much to deal with?" And to make matters worse I don't even know how she is feeling. Some days I spend so much time trying to figure out, is she content or hurting does she have a tummy ache or is she just having a down day? But there is one thing I do know and that is she has made it through much worse things than I have ever been faced with. Not to say facing it as the mother has been easy, but in the end I am not the one having all the therapies and surgeries and doctor's appointments and procedures done. And yet, she has made it through all of these things. AND she still smiles. So as strong as I think I am, she is even stronger than me.

She may not be the typical 3 year old. And there may be times that I hurt for her or maybe more for myself because she can't do the things other 3 year olds can do. But she is MY 3 year old. She is MY little warrior. And I know she will make it through yet one more large hurdle this summer because she has a mommy and daddy who love her with all their hearts and a God who never leaves her side.

Sometimes I Just Don't Get It

2010-06-05T05:28:00.000-07:00

So I haven't posted lately because it was the end of the school year. For those of you who don't know, this time of the school year is one of the craziest. Between finishing up the things you need to, cleaning rooms, making sure everything is graded and returned, and the numerous end of the year events a teacher is very busy at the end of the year. But now I am done and relieved to have some extra time now to spend with my family. I teased my sister the other day that I need a longer summer to get in everything I would like to do on my time off, but I guess I should just be thankful for the time I do have.

It has been a long school year for me this year. As I think I have posted before I was really trying to find a job at a new school, but was not successful. I think because of all the economy problems not many teachers are moving around for the fear if they leave one job there may not be any other openings elsewhere. Well this week just confirmed one more reason why I am praying so hard to understand what God's plans for my life are at this little school.

You see our secretary, who is one of the most wonderful people I have ever worked with, is retiring this year to help watch her new grandbaby that is on the way. And as sad as I am that she is leaving I am so very happy for her and this new excitement in her life, but back to my main reason for this post. The school board at my school has been interviewing people to fill her position. The preschool director and I have become pretty good friends, so we talk about all sorts of things. She has been filling me in as to where they are in the process.

Well this past week, they have finally narrowed it down 2 candidates, both who seem very qualified. One is a little older (in fact her youngest was one of my student teachers a few years ago), but really feels a calling to support the school in this way. The other candidate is younger and has 2 children. One of her children is 13 and one is 7. The 7 year old has down syndrome and attends the public school in our town because of his need for special education. She has expressed an interest in going into special education, but would like to do this in the mean time. This past week my friend told me as they were trying to lay out the pros and cons of the two women one of the board members apparently felt the need to state, "Do we really want to hire someone who has a special needs child?" WHAT?!?!? I was in shock when I heard this. My friend was quick to remind the board that they have a teacher with a child with special needs at which point I guess this particular member was quiet. But I couldn't help but obviously take offense to this comment.

First and foremost, what does have a special needs child have to do with whether this woman would fit our school? What exactly about having a child with special needs would keep her from doing her job? Why would having a child with special needs make someone else more qualified? I was appalled. The only thing that I could come up with was doctor's appointments, but as I thought about it I thought, "Isabelle has over 6 different doctors that she needs to keep up with on a regular basis." That may seem like a lot, but when I think about my school year Jeff and I were able to work it out enough that after the entire school year I still had 2 of my personal days left which I had been saving in case of a medical emergency. And I didn't need them, so the whole doctor's appointment thing can't be it either. So I am clueless as to what the issue would be.

And as I thought about it and as my steaming anger cooled I went from complete anger to a sad feeling. What is wrong with our world? Not only is a comment like that cruel, but it is uncalled for. To be honest, I have come to believe that parents of special needs children are a special kind. I know I don't know everyone, but I do know that the parents I have met are extraordinary. They are able to juggle work, doctor's appointments, feeding schedules, meds schedules, sibling activities, and daily life most of the time without a glitch. They have a compassion and patience like no other. They are understanding and devoted to making the best out of every situation. Now tell me this, why on earth would you not want someone like this working with or for you?

One of the things that I do learn from situations such as this is that I have this opportunity. I have an opportunity to teach those who are ignorant about the world of special needs what a gift it can be and how incredibly it can change one's life. My un-Christian side would love to go in and resign stating that I do not want to work for people who are so cruel, but then on the other hand I think I need to work harder next year to let the people at my school see what a blessing Isabelle is and how even with all of the things that go with having her as my child may be I am still the best teacher I can be just like I am sure that candidate would do the same.

Teacher by Day . . . Sumo Wrestler by Weekend

2010-05-20T18:02:00.000-07:00

So a few weeks ago my school had a Carnival to try to promote the school and bring families in to see the school with the hopes of increasing enrollment. Jeff and I decided this could be a fun way to spend the day together. Since volunteers were needed to run the different games we decided to volunteer to run the Sumo Wrestling station. Mainly because I wanted to try it myself, but also just because it seemed like it could be a fun station to work.

Well, I had a blast. I was by no means any good at the actual wrestling, but it was fun to try anyways. I also had a great time just watching other people hobble around in their giant sumo gear trying to maneuver their bodies to take down their opponent. It was a great way to support the school, help out, and have a little fun at the same time.

That's all I am writing tonight as I feel the pictures will say the rest. I had a video, but I just can't seem to get it to load up, so you'll just have to picture motion while looking at the pics.

My Happy Mother's Day

2010-05-11T19:25:00.000-07:00

I wasn't sure what to expect this Mother's Day weekend. Saturday began with a very cranky little girl. I'm not sure why it happens, but every once in a while Isabelle will have a day or a weekend where she is just CRABBY. I'm sure when you think of crabby you are thinking of just a whiny child who is grouchy. Well, when Isabelle has a cranky day it consists of constant crying. There may be 2 to 3 breaks in the day where she has cried so much that she falls asleep, but that lasts only about 20 minutes at a time and then she's back to screaming.

When we were getting ready to take Wesley home from the NICU almost 2 years ago they asked us to watch a video on what they called "Purple Crying". They told us it was the newer name for colicky babies. It talked all about dealing with kids that won't stop crying. When Jeff and I saw the video we laughed and said, we could have made the video because Isabelle can crying longer and louder than any baby I have seen.

Anyway, we have become accustom to these crying episodes which have become fewer as she has gotten older, but the last few weekends it has been bad. As she has gotten older it is obvious her lungs have gotten bigger because when she screams now it almost is too much to bear. Jeff and I took turns back and forth with her, but even when you don't have her, her screams pierce your eardrum across the room. Needless to say at one point she ended up going into her crib because nothing was working and a break was needed.

I panicked a little as I thought, "This is how my Mother's Day is going to be?" Well, God answered this prayer. Isabelle woke up Sunday smiling back and forth. Wesley had woken up in the early morning and I had just brought him in to cuddle with me. When he fully woke up, he woke me from my in and out sleep with a giant open mouthed (cause that's how he does it) kiss. What a sweet little blessing for me this day!

After church, we hung out for a bit. We all took a bit of a nap even though mine was the shortest because Wes woke up. After everyone was rested we picked up my younger sister and headed off to a new park to try out. It was a great way to spend the afternoon. It was a little chilly, but for a little man who loves stairs it was perfect. At one point, I told my sister "Man is he going to be tired tonight." And then about a minute later I said, "Actually am I going to be tired tonight." We played for a bit and then went to dinner. It ended up being a great day!

As I thought about the day, I thought about what the best parts of being a mom were and here were my top two answers. . .
And now just for some more fun pictures from our day.

Just a Little Off the Top

2010-05-01T17:42:00.000-07:00

With Jeff not having a job right now, we have decided for him to watch Wesley on the days he can to help with not having to pay for a babysitter. This has also been a good thing for him in being able to spend some more time with Wesley. On Friday, he had a full day planned for the two of them.

They chilled out in the morning after I left for work. Then Jeff decided to take Wesley for his first official haircut. Jeff said that they had to wait 45 minutes so they put their name in and then went to the pet shot where both Wesley and Jeff fell in love with the puppies they had there. Thankfully they had a hair appointment already made so Jeff didn't have time to convince himself to purchase a pup.Then it was off for the haircut. Jeff said at first Wesley was anything but happy. In fact, he screamed for a good portion of the start.And then . . . . Jeff brought out the camera. Wes was a little skeptical at first, but then was all about the camera.

What a handsome little fellow!
After the haircut they went home, had lunch, took a nap, and then were off to the park. Jeff said Wesley was more interested in playing with a stick in the dirt than playing on the playground. This didn't surprise me at all being that at home Wesley would rather play with the DVDs or the pots and pans than with the many fun, bright toys that have been given to him. Hey whatever makes you happy! By that night, both my boys were tuckered out from such a fun day. What a great way to spend a Friday!

Is This Normal?

2010-04-25T18:40:00.000-07:00

So this past week was a more than hectic week. I feel as if I am in a race and somehow I've fallen behind and I keep running, but I just can't seem to catch up. I think maybe I've taken too many things up, but I don't know what to give up as all the things I am doing are important.

You see, besides teaching full time I have taken on tutoring 2 past students who are now in high school who are struggling with Algebra. Not only do I love math, but since Jeff lost his job a few weeks ago any extra cash we can make we need. So twice a week I tutor 2 boys for up to an hour right after school. I also am in charge of the Student Council at school and of course this was a meeting week, so that kept me at school later as well. I also had an interview this week for a new job for myself as I am looking to leave my current position if it is God's will. It is a pretty big change from what I have done in the past, but has tweaked my interest a bit, so I figured why not interview for it. So that took up a majority of one evening. I had counseling another evening. And then of course there is just the norms of life like taking care of the kids and doing things like dinner and baths and the like.

Well, Tuesday night when I got home from my interview my sister who had watched the kids had to leave right away, so it was just me and the kids. Well Wesley was in major need of a bath and it was already after 7. I hadn't had dinner yet, but I was afraid if I had dinner and then went to give him a bath he'd already be asleep, so I fixed up my plate for dinner and together we headed into the bathroom. Our normal bath consists of doing all the work first and then having fun, so I washed him all up and then as he played I sat on the toilet and ate my dinner. I found myself laughing a bit to myself as I sat there thinking. Is this normal? Here I am eating my dinner, sitting on the toilet, being entertained by my 20 month old.

Ah, the joys of a busy life.

For a Reason

2010-04-16T19:29:00.000-07:00

I have always been a believer that everything God gives us is for a reason. I've seen it proven time and time again in my life. When Jeff and I had Isabelle, it was probably one of the first times I really struggled with this belief. I remember I kept thinking what would be God's reason for this? Why would He ever give someone a child with so many challenges? What good could come out of this giant obstacle in my life? What kind of value of life would she have with all of her struggles?

It took me some time, but somewhere in the few short years Isabelle has been in our lives it all started to become clearer to me. In those immediate moments, I was feeling sorry for my situation. I'm not sure I was ever really looking for the many things in my life that would change for the good by having Isabelle in my life.

This past weekend, while spending some time by my parents we were out to eat with both of the kids. My mom was holding Isabelle while I was getting a plate of food ready for Wesley. At one point, one of the waitresses at the restaurant started talking to my mom and was asking questions about Isabelle. My mom gave a short summary of Isabelle and the many challenges she has already faced. As she was finishing up, the waitress said, "Oh that is so sad. That is just too bad. I'm so sorry" I was about to interject as I was almost insulted by this comment when my mom told the waitress, "She actually has been very blessed and she has been a blessing in all of our lives as well." And with that I felt a calmness come over me.

This made me think a bit. I have watched and learned a lot over the passed few years. One of the things I have watched the most are different people's interactions with Isabelle. I have been a little hurt sometimes by the hesitancy people have with my baby girl, but in the same token I have also been touched more deeply than I ever thought possible. I have seen such tenderness, love, and gentleness sometimes from those I would least expect it from.

My niece Alexa who is 2 months younger than Isabelle has shown me more love and care than I ever would have imagined. She is so gentle. She may not know how to play with Isabelle, but caring for her and showing her love in the only way she knows how has been such a gift for me to watch. She has this tendency to, for lack of a better term, pet Isabelle on the cheek. She also is one of the first to walk over and wipe her chin if Isabelle has a little drool or spit on her chin. She is not afraid to give Isabelle a kiss on the cheek or forehead and she often will ask when she sees me where Isabelle is. I know it can't always be easy for my nieces and nephews as Isabelle doesn't interact back the way they are use to with little kids, but when they take the time out to show their love for her in the ways that make the most sense to them it gladdens my heart.

What is my point to all of this?

Well, I guess it would be this. I still may not know all the reasons God has given Jeff and I the privilege of being Isabelle's parents. It may take us many years maybe even our whole lives to fully see it all play out, but one thing I know for sure is that Isabelle is in my life for a reason. In fact she isn't just in my life, but she is in the lives of my family and friends for a reason. She has already taught Jeff and I and our whole family compassion. She has taught us patience, how to show love in different ways, the acceptance of being different, and so many other things. It excites me to know that she in such simple ways has done all of this already. My prayer is that she will continue to do this for each of the people she meets. I am already seeing some of these things with Wesley. I never would have guessed that someone with so few abilities could make so many powerful changes.

They say a picture can say it all and so to end this post I will include these pictures to show you everything I just said in two simple snapshots.

Lovin' My Inchworm

2010-04-06T13:27:00.000-07:00

Thanks Aunt Katie, Aunt Carolyn, and Uncle Larry!

The weather is finally nice enough for us to be playing outside so yesterday daddy helped Wes put his new inchworm together. And even though he isn't heavy enough to help push it down and he's a little too short to push himself around on it Wes is loving his new outside toy.

Thanks for the great birthday gift!

No Matter What They Say

2010-04-06T11:51:00.000-07:00

So Wesley had his 18 month check up last month. For those of you who have children you know that when you go in for these wellness checkup appointments they have you fill out this form saying what your child can and cannot do. I really don't like these forms as it can be so hard to recall if you have seen your child do some of these certain things. Anyway, I always just fill out the form the best and can and leave it at that. Well, this time I went into the room with Wes and as the doctor did the physical evaluation he told me that looking at the form I filled out he was becoming a little more concerned with Wesley's delay. He shared his thoughts and I told him I was fine with having Wes re-evaluated in regards to physical, occupational, and speech therapy.

Well this last week Wesley and I spent about 3 hours being evaluated and questioned. "Can he do puzzles? Can he pick up more than one block at a time? Can he draw a straight line? Can he run? Can he put a few words together to tell me what he wants? Can he imitate sounds and words that I say to him?" The questions went on and on. I was so proud when he could do things they asked and somewhat discouraged when certain things they asked I knew he wasn't even close to being able to do.

For so long we have just been so happy to see him progress in what seems to us as a normal rate. When I first went into each evaluation, each therapist asked me what my concerns were for him. I told them to be honest I wasn't sure what concerns I had because my "norm" in Izzy up until this point couldn't do any of the things Wesley is capable of already. After question upon question I found myself feeling a little discouraged. Here my little guy whom I have been so proud of in all that he has been able to accomplish in 18 short months and in the eyes of a therapist was lagging behind especially in the area of speech. And in my immediate thoughts I felt like "great now even the child of mine who is suppose to be developing normally is not doing what he is suppose to."

I left feeling a little saddened and set back, but as I looked at my little man walking out to the car, climbing up to his seat, and sitting in his car seat laughing I realized just how blessed we are. And even if he is not developing at a "normal" rate in the eyes of the therapists he is still improving day in and day out. And even with those delays he is still one amazing kid. He may not be able to put all the pieces into a simple puzzle, but he can bring laughter to my heart when I'm feeling down. He may not be able to pick up multiple blocks at a time, but he can pray with me to our loving Lord before we eat meals. And best of all he can love me.

So will we do the therapies they suggest? - yes of course we will, but never focusing so much on those lagging areas that we miss the blessings he already has been given.

We Are Still Alive

2010-04-02T10:45:00.000-07:00

It has been way too long since my last post. There really are no excuses as everyone has busy lives, I just chose to prioritize the "must dos" and the "want to dos" and it ended up that my blog was near the bottom of that list. So here I am, months later, ready to do some updating and attempting to keep it short.

In October, Jeff quit his job to go to school full-time for a semester. This was for sure a trying time for our family. Jeff was never home and when he was he was studying. He didn't get to spend much time with me or the kids or anyone for that matter. So I spent 3 months doing my best to keep up with the needs of our family, working full-time, and praying for Jeff's success in his class. In the end, he passed all his classes except one. This meant no LPN degree just yet.

Then began the search for a new job to help us get through till Jeff passed the class. This was an even bigger stress for our family. With an economy that is hurting there were not many jobs out there to be had. So in the midst of starting this class once again, there was the stress of trying to find a job, and the stress that all of that put on our lives as a family.

About the beginning of February, Jeff found a job at a heating and air conditioning place which has been flexible with his school schedule. The pay is okay and is helping us get by enough that we can at least pay our bills. As for his class, right now he is doing fairly well and is passing so we are praying that he can hold on for just a few more weeks and then he can focus on trying to get a job as an LPN.

Now onto the fun and happy stuff in my life. . . Izzy and Wes. They both are doing great. Izzy turned 3 in March. I can't believe she has been a part of our lives for 3 years already! She has taught me so much about the meaning of love. She has taught me that there are ways I never even knew that one can show love to others. She has taught me patience and has opened my eyes to so much that I never even knew existed. And best of all she is the best cuddler a mommy could want.

And then there is my non-cuddler - Little Wesley. Maybe somewhere deep down he is a cuddler, but the truth is he is too busy to be cuddled. He is walking anywhere his little feet will lead him and he is the true definition of a climber. He will and does climb anything his little arms will pull him up onto. Our kitchen consists of kitchen chairs lying on their sides because if they are standing up Wesley is either on them climbing on the table or pushing them to where he wants to go and then climbing on them.

They bring my life, even amidst all the chaos and stress, a little bit of heaven each and every day.

Does It Get Any Cuter?

2009-10-31T15:38:00.000-07:00

I love Halloween! I can't help it. I know there are plenty of people out there that don't think it is a good idea to celebrate, but I just love it. I love the idea that kids for one day all get to pick to dress up and be anything they want to be. I love being able to give treats to complete strangers and trying to tell what they have chosen to be - sometimes which can be very challenging. I just love it.

Growing up in a parsonage and not in a neighborhood my house rarely got trick or treaters when I was growing up. Now as an adult living in a neighborhood I think I'm more excited about trick or treating than the trick or treaters coming to my house. I get all excited when I see them coming down the street and Jeff knows he'd better let me answer the door.

Even though we knew it was going to be too cold to take our little people out to go trick or treating I still wanted them both to have costumes. At first Jeff kind of questioned me, but in the end he just went with it. It helped that Isabelle needed to be dressed in a costume for her daycare this past Friday, so that was all the more convincing Jeff needed.

So then came the fun yet challenging part - what did they get to be? You see, I am not for going out and buying costumes because I think it can be fun to make them and also especially with Jeff not having a job right now I thought to save money I would make the costumes. The challenging part came when trying to figure out what I was talented enough to make, what was going to be inexpensive, and also what would be good costumes for one who mainly lays on the floor all day and for one who crawls everywhere. So I searched the web and I came up with a cute little strawberry for Isabelle and a scuba diver for Wesley.

So here they are in their costumes. Isabelle's was taken yesterday because she had to wear it to daycare and she threw up all over it so she didn't get to wear it today. Wesley didn't last too long in his either because he kept yanking on his mask and tubing.

Say a Little Prayer

2009-10-29T05:02:00.000-07:00

Well it's Thursday morning. I wasn't sure we were going to make it to this day earlier this week. As I think I have mentioned before Jeff is going to school for nursing. Up until this point he has been going to school part time and working full time, but this semester after much discussion and prayer we decided that Jeff would quit his job and go to school full time. This would just be for this semester. After he passes these classes and takes one more test, he will graduate and have his LPN which is one step closer to his final goal and will also allow him to start working in either the hospital or a clinic. He has wanted this for so long I have been very excited myself that he is getting close.

When we decided this would take place this semester I was hesitant, but thought this is just for a few months so I think we can make it financially if we are just really careful with our spending. What I didn't take into account is Jeff possibly struggling with a class. Since he started pursuing this degree he has been an A/B student so I had no question at all that he would be just fine, pass the classes, and get the degree. Well, that is not so much how things are working. Right now he is in an internet course that is challenging him more than any class he has taken. He pretty much spends all his home time lately in the books studying. The last 2 quizzes he has taken he has not done so well.

Today he has his midterm. He has studied almost non-stop the last 2 days. Taking online quizzes to prep and reading. He is feeling very discouraged. He is very concerned with how this test will go. You see each quiz he takes is 10% of his grade. This midterm is 20%. In nursing classes, if you don't get at least an 80% you don't pass and you have only one more chance to pass it. This makes sense as a patient who has nurses take care of them you want nurses who know what's going on. But from the end of the wife who is watching her husband struggle so much it is a hard.

On top of all this, the plan was he would get another job as soon as the new year started and his class was over. The problem? If he doesn't do well on this midterm he probably won't pass the class and if he doesn't pass the class he won't be able to get a job in the medical field and if he doesn't get a job in the medical field I'm not sure he will be able to get a job that will pay enough to keep us a float as a Lutheran school teacher doesn't make very much.

So that is where you come in. I am asking every and anyone to please pray for him today. Pray that God will lead him to the right answers and that he will have confidence in those answers. He takes the test at 3 after his clinical is over for the day. We welcome and appreciate all prayers sent up for him and our family. I'll let you know how he does as soon as I know and get the chance. Thanks!

Then You Give Her a Bath

2009-10-27T11:46:00.000-07:00

If you have ever had to give a bath to someone who cannot sit up on their own and who cannot hold on to you, you will understand my frustration today. When Isabelle was small we just put her in the baby bathtub and gave her a bath. This was not too hard being that it was on an incline and all infants cannot sit up or hold on on their own. Well as Isabelle has gotten bigger she can no longer take baths in the infant tub because she is getting too big and too long. So now to give her a bath I have to get into the tub with her and wash her while holding her.

Back this past spring I found out that many people who have special needs have something called a bath chair to help them bath themselves. It looks somewhat similar to a reclining sun chair, but is obviously smaller and fits in the bathtub. I was very excited when I found out about this as it has been getting harder and harder to give Isabelle a bath while holding her and then standing up in the tub holding her to put her in a towel.

Well, we talked to our doctor about it and he was very willing to give us a prescription for it. So we called the company who makes the chairs and told them we had a prescription for a bath chair. They said they would get back to us. A month or so past and I still hadn't heard from them, so I called again. I spoke with a lady who looked up our file and said, "Oh, yeah we have the prescription here. We'll give you a call when it is done." Well, we just received a letter in the mail this past week that said our request for a bath chair was denied because there are more inexpensive ways to give her a bath! Really?!?! Like what? Her mom holding her? Yes that is cheaper, but at the same time it isn't doing such great stuff for my back and the older she gets the harder this is going to become.

Jeff was very calm about this and said we will appeal the decision. My response was okay, but if we get turned down again I will call the insurance company myself and tell them that they can come and give her a bath a few times each week and then they can reconsider our request. Grrrr!! It makes me so frustrated. I am not asking for this high tech thing. I am only asking for a chair that can help me bath my daughter. I don't think that is too much to ask.

Even The Pumpkins Were Cold

2009-10-11T17:42:00.000-07:00

My mom and dad came down for the weekend because my dad was preaching for the first time since his retirement at the church Jeff and I have been worshipping at. My mom had mentioned before they came that they would like to take the kids to a pumpkin farm to buy them each a pumpkin. I love pumpkin farms, so I was all for this idea.

When my parents got here on Saturday it was pretty sunny, but still seemed pretty chilly too. I wasn't sure what our Sunday was going to be like, so decided we had better go on Saturday. Knowing that it was going to be chilly we bundled the kids up and headed off to the farm. Well our visit was pretty short. I had not taken into account the fact that the pumpkin farm was in a very open field and so the wind had every chance to blow at us from every angle.

So our pumpkin farm visit was quick and short, but still enjoyable. We pet the goats, posed in some of the large wood cutouts for pictures, and picked our pumpkins all in record time. Poor Isabelle was so bundled up I'm pretty sure she had to have been feeling like what is going on and why are we doing this? Even so the kids were good sports and humored their mother and her wish to visit the pumpkin farm.

Joe's Run, Walk, and Roll

2009-09-27T16:40:00.000-07:00

On Saturday, our whole family took part in Joe's Run, Walk, and Roll. This is a special walk that is held every year to benefit the United Cerebral Palsy foundation. Jeff has done the walk before with a friend, but I never had. Being that this disorder is that much closer to our hearts now that we have been blessed with Isabelle, there was no question that we would be taking part in the walk this year.

We were pretty excited about it from the beginning. First we decided to invite our families to take part in this special day. We know how crazy busy people's lives can be so we weren't certain how many would be able to join us. In the end, my mom and dad, both of my sisters, my sister's daughter Faith, Jeff's brother, and his uncle all joined us. With this we formed our team - "Belle Belle's Brigade" named in honor of one of Isabelle's nurses at her daycare who calls her Belle Belle.

The next step was collecting donations. Jeff right away said he thought we could collect $1,000. I thought that was pretty high, so I just made a goal for myself of $250. In the end, with the help of everyone on the team and also Jeff's parents we raised $2,657!!! Wow were we touched! So many people, many who didn't even know us or Isabelle stepped up for the cause. God continually amazes us with blessing upon blessing.

Now on to the most fun part - the day of the walk. I was nervous because all week they were calling for rain, but in the end the weather was perfect. It was about 70 degrees and partly cloudy with no rain. That was perfect weather for a walk. There were so many people there. Each walker got a blue shirt with the walk's logo on it. It was pretty neat to look up and see the ocean of blue and know that they were all there supporting something that was so special to our family. The whole thing made me very emotional. Some of those people were there because they too had a connection to someone with cerebral palsy, but some people were there just because they wanted to support the cause. What an awesome thing to be a part of! I was so proud to be the mommy of Isabelle and to know how far she has already come in two short years.

Before the walk started they had many of the mascots of many of Milwaukee's sports teams walking around socializing with the people. I was very excited about this as the Milwaukee Brewer Sausages are just about my favorite thing about the Brewers. My younger sister was great and determined to help me get a picture of Isabelle with each of the 5 sausages. Casey McGehee who plays for the Brewers was also there as he also has a little person who has Cerebral Palsy. It was neat listening to him talk about how much Milwaukee has reached out to support him and his family.
Then the walk started. We had the option of walking 1, 2, or 3 miles. We weren't certain how far Isabelle would be able to go, but we thought we would go as far as we could. Well, our little lady did great. Not only did she make the whole 3 miles, but she did it with out any spit ups and even had smiles at the end. All in all it was a great day that will for sure become an annual thing for our family.

There are many times when I wonder what our life would have been like if Isabelle had not suffered from a severe brain bleed. On days like Saturday, I realize what we probably would have been missing out on if she wasn't who she was. Again, what an amazing gift God has given us!

Trying to Keep Up

2009-09-22T05:48:00.001-07:00

Wow! Has it really been over a month since I posted last? I can't believe how crazy and quickly life is passing by. For those of you who follow my blog I am sorry for my absence and am actually hoping (as strange as this may sound) that now that I am back to work I may have more time for keeping up my blog.

Life here has been nothing short of chaotic. In August, I spent quite a bit of time hanging out in hospital waiting rooms. First there was my dad. This spring his doctors found some suspicious looking lumps on his kidneys, so the first part of August we were off to the Mayo Clinic in Minnesota to patiently wait as they removed the lumps from his kidneys. We were pretty certain it was cancer, but still had a prayer that maybe just maybe it would be something else. Well, it was cancer, but just as God often surprises us, in the words of the surgeon it is a very non-aggressive cancer. So even though we were praying for no cancer, if dad was going to have it this was the kind to have.

About 5 days after my dad's surgery we were off to central Illinois to sit in a waiting room while my brother underwent surgery. He has been coughing up blood for the past year and after he finally went to the doctor about it he was told they needed to remove a wedge if not an entire upper lobe of his lungs. They were unsure if this could be an infection or cancer. Yikes! What is it with the men in this family? Again many prayers went out that day and God again answered. It turns out they only had to remove the small wedge and thankfully it was just an infection that had killed that portion of the lung. As horrible as that sounds we were very much relieved that that was the problem. Both my dad and my brother are doing well. Although my brother is still in quite a bit of pain and we've found out just how stubborn my dad can be. :)

As for me, I started school again which is always a whirlwind when you first go back. Being a small Lutheran school to begin with our school took quite a hit between the economy and just things that took place here last year. So our enrollment has dropped quite a bit. I have the biggest class this year with 9 first and second graders.

Jeff will be starting his clinical classes in about a month so we have started to have Isabelle be transported to and from her special needs daycare because Jeff's class schedule won't allow for him to drive her the hour to get her there and be to class on time. That was a hard thing for this mom to adjust to. Letting some stranger take your 2 year old in a car for an hour carride is not exactly the easiest thing to do, but it is what we need to do. So far I am not sure I can tell you this is going so smoothly. Isabelle gets picked up by 6 in the morning and is not dropped off again until about 7 at night. By 7:30 most nights she is ready to pass out, so my time with her during the week is very limited. We've also had a little problem as the young man that drives the van hasn't shown to be the most responsible so far. Last week he called after midnight and left a message on Jeff's phone saying he had been out too late playing ball and wouldn't be able to pick her up the next morning. Today he didn't even show up. When we finally called him, he said his alarm hadn't gone off by that time we had to buckle her carseat up in the truck and Jeff had to take her himself as otherwise he would have been late for work.

Sometimes it amazes me when I look at the fact that I have stepped back from some of my responsibilities to make more time for family and yet life seems just as crazy if not crazier without them. Between both of our jobs, Jeff going to school full time, Jeff joining our church choir, trying to workout to get back even a glimpse of my pre-baby body, taking kids to doctors appointments, doing all the other kid needed things, and trying to keep up with the house I'm not sure how we are making it through. I can honestly say that sometimes I do wish we had one more day in the week, but I fgure that would just fill up too, so maybe 7 is enough. And yet somehow each night we are able to go to bed to get refreshed to start the whole crazy cycle again.

Whew! I'm almost exhausted just writing this post. As chaotic as things get I do try to remind myself that my family has been blessed in so many areas. And even when things get rough or crazy or out of hand somehow God's hand leads us through. In the end, we may be tired and we might even be a little cranky at times, but at least we don't have to do this all alone and that's enough to keep me going.

Field Trip Time

2009-07-17T09:35:00.000-07:00

I know I have said this before, but the day care Isabelle attends has been such a blessing to our family. They have offered Isabelle so many different opportunities to grow and improve. This summer they are doing a program called "Kaleidoscope". In it every two weeks they are focusing on something new and different. With each theme they have also coordinated a field trip to coincide with it. The first week they went to a butterfly garden, the second theme led them to visit the circus downtown, and this last week they got to go to Discovery World which has all sorts of things to touch and see. They always invite parents to come and take part and be involved in the different field trips they do. I haven't been able to go on the last two trips because of work or doctors appointments for one of the two kids, but this last one I made sure to keep my day open so that I could go. After talking with the coordinator she even said I could bring Wesley too. I was excited about this, but also knew there was no way I could spend time with Isabelle and also manage the mover and the shaker that my son has become. So I called up Jeff's mom aka Oma and asked her to come along too.

We had such a nice time. Some of the things were hard for us to do with Isabelle because it is a very hands on museum, but she still was able to take in a lot of different sights and sounds. My favorite part was the aquarium. They had all different kinds of tanks.

There were giant tanks with large fish swimming right up to your face.

There were tanks filled with beautiful, gently moving jellyfish.

There were tanks underneath where you walk that Wesley got to crawl on and check out.

There was a domed hallway that you could walk through with fish all around you - on the sides, above, and below.

There were tanks that went from floor to ceiling. It was incredible.

Isabelle went through most of the aquarium with a smile on her face. I'm hoping this was her way of telling me she liked this place and not just a coincidence.

After the aquarium we made it to several different floors and sections of the museum. My other favorite part of the museum was the top floor. The called it the pilot house. It was this large circular room that was completely enclosed by floor to ceiling windows overlooking Lake Michigan and Milwaukee. There were doors leading out to a wrap around deck that let you see all over the place.

All in all, it was another wonderful way to spend the day with my munchkins.

Right in Our Backyard

2009-07-17T09:11:00.000-07:00

Last Saturday was a beautiful day in Wisconsin. We decided we would take advantage of the day and do something outside. After little discussion we decided we would try to take the whole family to the beach. We live only about 12 blocks from Lake Michigan. I think in our busy lives we often take that fact for granted. Yet each time we finally take the opportunity to go and spend sometime on or near the lake we are reminded of just how majestic our Lord is. The lake is such a breathtaking view and as we got out of the car with our loads of things I asked myself again why I don't try to take more time to come down here and enjoy this marvelous creation right in my backyard.

I figure the best way for me to share our day is to share pictures. I will say Isabelle did leaps and bounds better than I had expected. It was a windy day and often times the wind on her face scares her, but she did alright. I was also concerned with her getting overheated, but the wind helped with that. She didn't go in the water at all as anyone who knows about the Great Lakes knows the water in them is extremely cold, but that didn't stop little Wes. He wasn't really interested in going all the way in, but playing in it with his feet was just fine by him. His biggest struggle was the fact of how mobile he has become that it was hard to keep him on the towels and out of eating the sand. Bathtime was really interesting that night as they both had sand everywhere. All in all the day was near perfect. Spending the day at the beach with my whole family was not something I always pictured I would be able to do, but by God's grace it is one more thing I can add to my list of things we can do all together. God is good!

A Touching Visit

2009-07-17T08:48:00.000-07:00

I can't believe how quickly this summer if flying by. Because I have a few moments today I thought I would blog being that I haven't for quite some time. But as I sat down to type I realized I have a lot to update on so I guess I will have a few different posts today.

A few weeks ago I took Isabelle and Wesley on an ever so long car trip to Missouri to meet their great-grandma for the first time. The car trip was less than ideal, but better than I thought. I learned a lot while traveling with my two little people. First I learned that Isabelle does ok on the first day of travel, but breaking it into two days is not so much her idea of fun. I spent the second day in the car facing backwards a good portion of the trip trying to catch her throw ups. As for Wesley, my "I only will eat it if it is warmed to my liking" I learned a few different ways to warm a baby bottle when your resources are limited. First we warmed it in a cup of coffee bought at a rest area. The second bottle was warmed in the heat of the sun sitting on the dashboard. This may not have been the most sanitary way to do it as I'm not sure warming it that slowly is good for it, but didn't have too many other choices and just wanted to get to great-grandmas so we were inventive.

Other than the car ride, we had a really nice time visiting with my two aunts and their families and of course great-grandma. Because of the way things have gone Isabelle had not yet met my grandma. I was so excited at the thought I introducing them. My grandma stays in an assisted care facility. So the first day we were there we went to this lovely park right behind the center to wait for grandma. The kids played a little as we all waited excited to see her.

When grandma finally came down the hill, Susan's girls excitedly ran up the hill to meet her, "Yelling Granny, Granny!" I'm not sure she knew what she was in for. As she sat down the the bench I walked over to her and as a tear ran down my cheek I introduced great-grandma to Isabelle. I'm not sure what my grandma knows or remembers about Isabelle and I'm not sure what Isabelle took in from this first time meeting, but for me it meant so much. It touched my heart and will be a moment that stays with me forever.

We stayed in Missouri and visited for about a week. And each day we went back to that park and met with grandma. We talked with her, shared with her, and loved her. It was such a special and emotional week for us all.

A Special Place to Visit

2009-06-23T18:18:00.000-07:00

The day care Isabelle goes to called early this morning asking if we could drive her to the center today because they were short drivers. We only have her transported on Tuesdays and Thursdays because Jeff has class so early in the morning, but being I am now out of school I volunteered to bring her in. Jeff takes her every other day as it is on his way to work so I do not have the opportunity all too often to visit and take Isabelle in for the day.

It takes about an hour to get there from our house, so as quickly as I could I got myself, Isabelle, and Wesley ready for the day as I had planned to go in and work at school for a while this morning and then run errands. When we got there, I put Isabelle in the stroller, grabbed the diaper bag on one arm and Wesley in the other. As we entered the facility, we were welcomed by many of the little people who can walk at the center. One little guy was all ready to tilt Isabelle back in the stroller and take her for a spin, but he was just a little bigger than Isabelle so thankfully one of the nurses stopped him before he took off.

I talked some with many of the nurses whom I had not seen for quite some time as they oohed and aahhed over Wesley. One of my favorite things to do when I take Isabelle in is to take an opportunity to talk to some of the special little people at the center as I take Isabelle to her spot. Many of them can't talk back, some of them may not even understand me, while others will talk your ear off if you let them. There is something so special about these little people. And as crazy as it may sound, as you look around and see feeding tubes and oxygen tubing and trach supplies and suctioning machines and wheelchairs, there is something calming about the whole experience.

As I look at each of these little ones, instead of feeling sad for them as some people may, I am marveled by each one of them and what they can do. Today I thought about how years ago many of these children may not have even been here as medical science has come along such a far way to offer so much to so many. And then as you think about that, each of these children including my little Isabelle can be seen as such a miracle. Each one has their own story of how they came to be. If it weren't for HIPA violations I would love to sit down and hear each of their stories and learn from each one of them. Each one is unique and each one is loved so much by our Heavenly Father.

As you watch the children there interact with one another, it's just like a big, loving family. Each of the kids is so excepting of each others special needs. Not one of the children look at another child with that strange "what happened to you" look that we many times have already gotten when we take Isabelle out.

I'll never forget one time last year shortly after Jeff's back surgery we both went in to get Isabelle when the day was over. Jeff was wearing his back brace. As we walked in, without any hesitation, a little girl with a trach came over and said, "What's wrong with you?" to Jeff. I had to laugh a little as to her this was strange. All the other things all around her were completely normal and completely part of her world. One of the nurses within earshot gave out a chuckle too and told us we were pretty lucky because usually this little girl, who also has a colostomy bag, asks new people who come in where their colostomy bag was.

What an amazing opportunity this center is not only for our little girl, but also for all the little people there. It not only provides medical care to these children, but also teaches them such an acceptance and compassion for those who are different from themselves. And even though, from a quick glance this center can look to be overwhelming, it is because of all the wonderful children and nurses there that every time I leave there I have this feeling of peace and calmness that makes me feel so happy to have experienced.

What a great way to start my day!

Trying to Find the Positive

2009-06-22T12:13:00.001-07:00

I took Isabelle to the eye doctor today. She hasn't been since she was discharged from the NICU and so she was due. For a while I have questioned what she can see and what she understands that she sees. While in the NICU, we were told she was a little farsighted, but that was the most we were told.

I wasn't sure what to expect today. On the phone while making the appointment, I was told they would sedate Isabelle. That made me feel a little apprehensive, but I figured knowing Isabelle and how much she does not like things on her face a lot that this actually might be the easier thing for her. We were just going to make sure the doctor knew her history and the medications she was on before they did it.

Turns out they did not sedate her. After dialating her eyes, the doctor asked me if I would hold Isabelle in the chair while she finished her examination. This is when things got rough. Isabelle is very strong. In fact, I tease that I think she is stronger than me (which probably doesn't take much). Well she began arching back as the doctor tried to look into her eyes with a light shining in them. Isabelle pushed backwards, squirmed all around, squinted her eyes shut as best she could, and began to whimper. The doctor was as gentle as she could be, but still needed to see inside Isabelle's eyes and so she repeatedly try to pry Isabelle's eyes open. As I sat there holding my baby girl, watching her try with all her might to avoid this uncomfortable situation I thought about how much I wish I could take this from her. I wished there was some other way to check her eyesight without having to cause her so much distress.

When we were finally done, I sat holding her close trying to console her as the doctor began to tell me what she found. She told me in regards to Isabelle's eyes themselves she seemed to be doing pretty well. She was showing some signs of farsightedness, but not enough to require glasses at this point. I thought "That's good - I can take that for some good news." And then she went on.

She told me she thinks that there is a break or some weakness somewhere in the line between Isabelle's eyes and her brain because of her brain bleed. Because of this she thinks that what Isabelle sees is what she compared to a puzzle. She thinks that Isabelle has to scan over something numerous times because each time she does she picks up a new piece to the puzzle and then in her mind she has got to try to put the picture all together and then figure out what it means. How can a little person who already knows so little of the world and who already gets to experience so little of the good in the world develop having such an obstacle to overcome? As if that weren't enough for me to try to process the doctor went on to say that we can have a test done that can prove that this is what is happening, but she wouldn't recommend it just yet at Isabelle's age because even if that is the case there is nothing you can do to repair it. She told me it will make a difference in what therapies Isabelle gets (which was already running through my mind) because most of her therapies are focused towards visual and she may not be able to learn this way. So now not only is it difficult for her to even understand what she sees, but now the question of how do we try to help her move forward developmentally with this huge road block? And then my mind wandered to wondering if this is happening, could this be giving Isabelle a headache or nauseousness? I think about myself when things are not clear that I look at and I think about what that does to me and now I have this little girl who has no way to talk to me who might be experiencing the same things and I can't even know to help her. Ugh! I'm so frustrated.

Sometimes it is so hard to understand why things are they way they are in our lives. I especially feel this as I look at Isabelle and all that she has gone through and I just wonder can't she have even one break to help her advance even a little? I know I just have to trust my God knowing just as He has taken care of my family thus far He will continue to do so.

A Great Way to Spend Father's Day

2009-06-21T19:45:00.000-07:00

So to celebrate Father's Day today I told Jeff we could do whatever he wanted with the kids. It was a beautiful day - sun shining, light breeze off of Lake Michigan, balmy temps. We opted to go to the zoo in our town with Jeff's parents and his brother and kids. We had such a nice time. Instead of spending a lot of time talking about our trip, I thought I would share our day with some pictures and a few comments. I hope you enjoy my picture walk through our day. I have to tell you that most of the pictures won't have animals in them because I was more interested in catching moments of my kids than the animals.Jeff and Wesley spending some daddy and son time.

Daddy pushing Isabelle past the giraffes.

Wesley was trying to enjoy a cool and refreshing drink, but this is the most I let him have as we are still just learning to enjoy rice cereal so I figured the fruit punch drinks would have to wait a little longer.
Wesley - getting ready to take a little snooze. He figured he'd seen enough animals, enjoyed a small dribble of juice, and now it was time to take a nap in Opa's arms.

Don't you just love looking at sleeping babies?

Our zoo has a new exhibit where you can go into this enclosed areas and feed the birds with these seed sticks you can buy. We thought, why not let Isabelle try? And sure enough, with the help of daddy she was able to hold a bird right in front of her. Then the bird even moved up on her arm. It was pretty amazing!
Jeff- the "Snow White of the Aviary"
Still sleeping

We are so blessed - look at this little cutie saying "Mom?!? Another picture?!?"
Wesley - back in action. Trying to get some more of that tasty red juice.
This tiger was amazing. It was huge and if I would have been quicker with the camera you would have seen a picture of our two nephews standing right up against the glass when this beautiful beast came right up to the other side of the glass and rested its massive paws on the window pane which at the moment did not seem to be thick enough. You should have seen those little guys back up.

After a day full of fun, even Isabelle couldn't resist taking a little nap.

To all the dad's out there - Happy Father's Day!

To my dad - thank you for everything you have taught me. I know I am the person I am today because of you and mom. You have taught me the true meaning of love and that I have a God who loves me more than I will ever know. You are a true example to me of what I want to teach my own children as they grow.

To my husband, Happy Father's Day to the man who has been by my side through some of the toughest moments in my life. I thank God for the gift you have been to me and our two little miracles. We truly are uniquely blessed.

Constantly Learning

2009-06-19T09:56:00.000-07:00

So as I stated in an earlier post I am still visiting my parents and actually have been having a fairly relaxing time with my two little people. Yesterday started out just as nice. My mom and dad watch my sister's three ladies on Thursdays. So about mid-morning the whole crew came over. They are all in love with both Isabelle and Wesley. Faith, my sister's oldest, is at the point where she thinks she can pick up Wesley and tote him around. Because of this we had to make a deal that she could pick him up only after she asked me first. So about every 5 minutes she would ask, "Aunt Tiffany, can I pick up Wesley and move him again?" even if he maybe only moved a few inches from where she last moved him. The girls also had a good time helping him lounge on grandma's diet coke pillow as they danced around in front of him.
After lunch I promised the girls that we could go for another walk, so after buckling everyone into the appropriate stroller, assigning Faith and Dani to who they could push, and explaining to Dani that she couldn't go too far ahead of me because Isabelle was attached to me because she was on her feeds we were off. We made sure to stop and look at every little gypsy moth caterpillar and say how cute they were on our walk even though Grandma and Papa both would prefer that these destructive caterpillars didn't exist.
After my sister got off work, we headed off to do some errands. We had about 5 stops to make. This was going to be my first time really taking Isabelle out and about, in and out of stores. I again was a little apprehensive, but figured she has been so good this week that hopefully that would just continue.

After a quick stop for dinner, my sister Susan and I stopped headed off to Best Buy and then to Michael's. It was in Michael's that I should have realized my hopes for a smooth evening maybe were not going to be a reality. After a few false alarms coughs, Isabelle had a huge spit up of saliva. As I caught it in the cloth I had brought in with me I could see more was coming so I quickly dumped what I had caught on the tile flooring and repositioned for another bout of spitting up. Poor Isabelle, as if I don't feel bad enough for her already one little tear ran down her cheek as she tried to regroup. After cleaning up our wet mess on the floor we were off to the next store. Here she did fairly well. So we were off to our last stop. I found what I needed as quickly as I could and then pulled off to a bit of a corner to get Isabelle's feed ready for the night. So I sat there on the Target carpet pooring cans of formula and water into Isabelle's feeding bag and then running it through the line I realized "this isn't something you see everyday in Target". Then to top the trip she finished off our evening out with a repeat of the Michael's episode. This of course happening while I am tired and dealing with an exceptionally rude customer service girl.

When we finally reached home, all I wanted to do was get the kids in their jammies and hit the pillow. This off course was not on Isabelle's mind. I should have known better. All of that stimulation so late in the evening she was very unsettled to sleep. So with Grandma's help we spent the night up and down very jumpy.

Ah, I should have known better. I so often want my life to be similar to others and to be able to do the things others do. It's silly, but I get envious when I see whole families out on different excursions - whether it is a trip to the zoo or even a simple trip out running errands. I'm not saying we cannot do these things because if we have the energy and can be organized enough to plan around feedings and meds we can do just this, but not usually without any reprecusions ie. sleepless nights and throwing spit up on the floor in a store. :) I find that Jeff and I often try to schedule it so one can go while the other one stays home with the kids or more specifically Isabelle. I know that is the better way to do it, but it doesn't mean that I don't sometimes wish we could do more together as a family. So we try little by little and learn each new day just what we can and cannot do.

An Excursion to Grandma and Grandpa's

2009-06-17T06:30:00.000-07:00

I'm spending the week at my mom and dad's this week. My mom and dad wanted to spend some time with Isabelle and Wesley so Sunday night I loaded them into the car and off we went. I was a little apprehensive to do this. You see, for those of you who do not know this, Isabelle attends what I like to call a special needs daycare. All of the children who attend here have different special needs from oxygen to feeding tubes to trachs. It has been a true blessing for Jeff and I as at this facility there are licensed nurses who take care of her and she receives all of her therapies while there during the week. This has not only allowed Jeff and I to continue working fulltime (which is a must right now while Jeff is going through school), but it also gives us a little break from all the work it is to take care of Isabelle. I am so amazed by my friends that I have made who also have special needs kids who have them at home with them 24/7. It is such a large undertaking and there typically is no breaks. From giving meds to catching spit ups to scheduling appointments to starting feeds it is a neverending job. Needless to say and as sad as this may sound I was somewhat nervous about having Isabelle and Wesley all by myself to take care of for the week. I knew my mom and dad would want to help, but I really feel that the brunt of the responsibility needs to be mine because they are my kids.

Anyway, we got up here Sunday night hoping that the weather forecast was not really what they were saying it would be for the week as they were calling for rain almost every day except Monday. Because of this we decided Monday that we would try to take the kids along with my younger sister Kim and my older sister Susan and her 3 girls to the beach. Again I was a little nervous about taking Isabelle to the beach as I had no idea how she would tolerate this, but it has been my goal to stimulate her and expose her to as much as I can to try to help her brain development so I thought it was worth a try. The water was freezing as we have not had too many warm days in Wisconsin yet. Susan's girls had no problems splashing and playing in the water looking for rocks and shells.

I wasn't so sure how my two little adventurers would do. Well if I would have let him Wesley probably would have put a bucketful of sand in his mouth and would have loved to go into the water up to his neck like his cousins. He loved it! He splashed in the water and bounced up and down almost the entire time we were there. Isabelle actually did pretty well herself. I tried dipping her toes in the water. She did not like this as I think the cold water startled her. So she and I just chilled on the beach which gave my arms a break from the bouncing baby boy.

All in all things have gone very well having my two little ones with me this week. There have definately been times when I have needed help, but Isabelle has been a true gem this week. We have gone for walks in the strollers and even watched her cousins play in the water in the backyard. Yesterday we went for a walk and Susan's 5 year old, Faith pushed Wesley in a stroller while Dani, her 3 year old helped me push Isabelle.

It has been so nice to see my sister's little ones try to interact with Isabelle. It gladdens my heart each time they come up to her and kiss her on the head or wipe her chin from some drool or ask if they can do something for Isabelle. I know as hard as it is for me to know she won't most likely interact back that it may be hard for them too for that same reason and yet they still try every once in a while. They have already started to show a true compassion towards her. It has been my prayer that this will be one of the many blessings that will come out having Isabelle in our lives.

To end this post here are some pictures of my beach babes hanging out at the beach.

Oh What a Night

2009-06-08T11:39:00.000-07:00

Can you tell what kind of night we had in our house last night? If you haven't guessed yet I'll give you a clue . . .it was one of those nights where you wished it were 6 am instead of 4 just so the night will be over.

That's right, Isabelle had one of "those" nights last night. I should have known something was up as she seemed kind of clingy yesterday. As night time rolled in, I thought I had her to sleep and then with a blink of an eye there she was staring at me eyes wide open. She wasn't crabby for the most part, she just wanted to be held.

We finally got her to just relax and lay down on the floor. Around 10:30 she had put herself to sleep being that we could tell it wasn't going to be the best night we jsut left her on the floor and covered her up. Jeff said he would sleep on the couch next to her just in case she needed him. Around 1 I got up to feed Wesley, when I came in the living room both Isabelle and Jeff were asleep, but both were now on the couch which means something had to have happened between the time I went to bed and now for her to be on the couch now with Jeff. I finished feeding Wesley, turned off the living room lights and went to bed.

Then came 3 o'clock. I was awoken to the sound of Isabelle wretching and throwing up. I came out to find she had thrown up all over herself and Jeff. After cleaning her off and changing her shirt I laid her on the floor with a towel underneath her just in case she threw up again. She was content so I tucked her in, gave her a kiss, and discussed with Jeff that if it happened again I would switch spots with him. 3:30, another wretching and throwing up episode. I ran out to try to catch it before I had to change her clothes again. This time Jeff had stayed asleep so I cleaned her up stuck an extra towel next to her, tucked her in again, gave her another kiss and went back to bed. We did the same routine at 4:00 and then 4:30. By this time I was just wishing the night would be over. What's the point of going back to bed just to lay there and wait for the next episode? At 4:45, we did the same routine again. At this point I thought enough of this. I decided to turn her feed off. She was throwing most of it up anyways, so why not give her a break and let her actually rest a bit. I turned off her pump, gave her one more kiss. Finally at 6:00 I came out to check on her and she was sleeping. Hallelujah!

Poor little thing. Who knows how much sleep she actually got. I know how tired I was this morning and I got more than she did. She was tuckered out this morning when Jeff got her ready for daycare. Once again the thing that amazed me was that she wasn't crabby. In fact through all of that last night I don't think she made one peep. There I was moaning and groaning and I'm not even the one who was doing all the throwing up. What a trooper that little girl is! Hopefully tonight will be a better night for all of us.

Feelin' Like a First Time Mom

2009-06-07T19:46:00.000-07:00

If you've ever lived in or visited Wisconsin you know that the weather is an ever changing, ever confusing topic. One day it could be sunny and warm and that night they might be calling for frost with a very cold and windy day to follow. Because of this it is important to appreciate the good days when they are here because who knows what tomorrow might bring.

This Friday was a day just like that. I thought I had heard the day was suppose to be slightly cooler, but it also was suppose to be a beautifully sunny day. As I planned out my day, I decided today would be a great day for my first stroll around the neighborhood with Wesley. So after work and doing a few things around the house I waited for my sister Kim to arrive to go on our walk.

The first question I had was do I use our travel system which we barely used with Isabelle because she did not tolerate it or do I go for the umbrella stroller. Even though he is pretty small still I decided to go with the umbrella stroller. Then came the bigger question. I had Wesley dressed in a long sleeved shirt and pants. Was this too warm? The day was turning out to be nicer and warmer than I had expected so now I was wondering if I had dressed him too warm. And yet we live only blocks from Lake Michigan and so then came the thought even though he may be warm for the sun what about the cool breeze that we always get off of the lake. I'm sure I was driving Kim crazy as I was trying to figure out what was going to be best for my little guy.

I felt just like a first time mom. In fact, I feel that way often when it comes to things with Wesley. Even though Isabelle is two and we have experienced so much with Isabelle, there are quite a few things that are very different from what we are learning with Wesley. I have stated before that doing things like feeding Wesley with a bottle was actually a very nerve wrecking thing for me. For most people I would guess feeding a child with a feeding tube would be a difficult and nervous thing, but for Jeff and I that has become the norm. Feeding a child this way is a very comfortable thing for us. There is a set schedule and the doctors tell us when she needs more. Then came Wesley and a whole new learning experience for us. I was very nervous the first time I got to feed him with a bottle. And now trying to feed him rice cereal I am constantly questioning if I am doing it right. Boy is Wesley going to have to be patient with me as he grows older with his very indecisive mother.

So back to my original story here I was still trying to figure out how to dress the little guy when my sister finally said, "You know you could always just roll his pants up if we think he's getting too hot." What a smart girl! So off we finally went.

We had a great walk! And we did indeed roll those little pants up. I think Wesley really enjoyed his first ride through the neighborhood. In fact by the end with all that fresh air, Wesley had tuckered himself out. What a cutie!

A Little Room To Breathe

2009-06-02T16:35:00.000-07:00

Well hello! It has been a really long time. This spring has been a whirlwind for me. I will fill you in with as short of a recap as I can so that I can get to the good stuff. Shortly after my last blog posting, oh so long ago, we had some changing of positions at my school. In the end, I ended up taking over the adminstrator's role again for the remainder of the year. That meant not only was I teaching 1st and 2nd grade again fulltime, but I was also acting principal. The changing of positions at my school was not for a good reason and so because of it I had a lot of cleaning up to do. I have spent the last 3 months continually trying to straighten things out. On top of that, Lutheran schools all over the country are struggling right now because of the economy so I have also been spending a lot of time trying to help our enrollment. This has pretty much consumed my days. It has also led to many, many late nights at school. It's times like this that I really don't like the fact that I live about 30 minutes from my job. I have come home exhausted and just wanting to relax. I have still been able to enjoy so much at home with both Isabelle and Wesley, but have been very tired while doing it.

Now on to the good stuff. Where do I begin? Let's see, things with Isabelle have been fairly good for us. She has started having her smiley days more frequently. It's great on those days as she turns her head from side to side, kicking her legs up and down. It's amazing how seeing her like that can lift my own mood. I love seeing her looking so content as that is something from the day that we were told there was a severe bleed that both Jeff and I have prayed for. I know she most likely won't be able to do much in her life, but to know that she is content is such a gift. It makes me think a lot about my own life and about how much I constantly am asking for more and more. Then I look at little Isabelle and how simple her life is and yet she can be so content. It often makes me take a step back to appreciate the little and simple things in my own life.

And then there is Wesley. Wow, have there been a lot of changes in that little guy's life. The biggest and most exciting news would be that we went to his pulmonary appointment last week. I went with a list of questions like "How long do we have to continue to use his apnea monitor?" and "How do we do the whole swimming thing this summer with oxygen?" The response I was given . . . "You don't have to worry about it because we are taking it all away!" What?!? I was shocked. I even asked after more discussion what we should do if he starts turning colors (which is one of the first signs of an infant not oxyginating themselves enough). The doctor replied it won't happen, but I guess you could keep the oxygen around for a while just in case as he might need to use it again next winter during the cold and flu season again. Well yeah, of course we are going to keep the oxygen around. It has become my security blanket. In fact, I have travelled around the last week with it in my back seat just in case. I think Wesley misses it too as that was his always there, always convenient toy to chew on. I have teased Jeff this week that I think Wesley is going through "tube withdrawl". He has been rolling around chewing and sucking on every and anything he can find in our living room. This includes chewing and pulling on Isabelle's feeding tube, while attached, this past week. We have a lot to learn going from a child who lays in one position unless moved to a child who can go from one end of the living room to the other in less that 4 rolls.

Since it's been so long I figured I had better include some pictures to update everyone. Isabelle has started being transported to her daycare twice a week to help out with Jeff's school schedule. The picture of her was how she came in tonight. They carried her in the carseat right into the living room and there my little princess slept.

Wesley's pictures are also from today. We started some rice cereal with him for the first time today. After our first time trial, it is obvious that we are really going to have to work on this whole eating things that don't come out of a bottle.

The Hallmark Channel At Its Best

2009-02-21T18:54:00.000-08:00

So I'm not sure why I ever watch the movies they show on the Hallmark channel as they always seem to make me cry, but again today I decided to watch one of the shows they had on. It was called "Follow the Stars Home". The whole movie was about a woman who was pregnant and finds out that her baby has some developmental problems. The doctors tell her that her little girl will never walk or talk normally and will probably die by the age of 6. Her husband wants her to abort the baby. When she tells him no he says it is too much to handle and leaves her to raise their little girl alone. As I was watching it, I found myself relating a lot of what she was going through to our dealings with Isabelle - the sleepless nights, the numerous doctors appointments, the amazing love she had for this special little person. As the movie progresses, the woman gets into an accident and her ex shows back up. She thinks he is back because he wants to be back in her life, but finds out that he still feels the same and feels that she has wasted the last 6 years of her life when their little girl's life is so close to its completion so quickly.

Towards the end of the movie, the woman is sitting holding her daughter. Julia. She is talking to her telling her just how much she loves her. She tells her that she wouldn't trade one minute of their time together and is so happy to be her mother. She asks the little girl, knowing she can't answer back, if she knows that, just as she says that this older little girl who has befriended Julia comes up and answers that Julia knows and that Julia wants to tell her thank you. She tells the mom that Julia too wouldn't trade a minute she has had with her mom and that she is so thankful that she is her mom.

And as I sat their bawling my eyes out, I again thought of Isabelle. I often times hold her hoping that she can feel and understand my love for her. I hope and pray that she knows that I would not trade her for anything in the world. Even with all of the trials and sleepless nights and rollercoasters of emotions she has given me, she is my gift from God that I cherish. I just look forward to the day whether here on earth or up in heaven when I can hear my little girl say, "I love you too mom and wouldn't trade you for any other mom."

Where's the Mute Button?

2009-02-08T15:13:00.000-08:00

Weekends have not exactly been easy around our house lately. Isabelle seems to be getting at least one new tooth every weekend since Christmas. This means we have had crying episodes upon crying episodes with barely any break.
When we were getting ready to bring Wesley home from the hospital in November they had us watch all sorts of videos about getting ready to bring your baby home. One of the videos was called "Purple Crying". Supposedly this is the new term for colicky babies. At the time, Wesley was a little temperamental and cried at times. One of the nurses tried to tell us just how important it was to keep our cool when you have a child that cries all the time. Our response to this was that we probably could have made the video for Purple Crying. In our house, Isabelle is quite well known to be a crier. In fact, up until probably late this past fall that is mostly what she would do unless she was being held. Finally this past fall she started a new phase in which she became more content being on her own be it lying on the floor or sitting up supported on the couch. She still had her crying spouts, but they were much less frequent. Regardless, we were so thankful to finally be at this point.
Well, with the appearance of new teeth has come a reoccurence of a crabby baby. The difficult part is that right now it does not matter if she is held or not . . . she cries. I can't blame her for this as I'm sure they hurt. Her gums are super pink and swollen and with all of her gagging issues you really can't put anything in her mouth for her to chew on or bite down on to help ease the pain. So we sit with her and continually reposition her hoping to find the right spot.
And as good as we have become at dealing with her crying, at times it drains us emotionally. I know on weekends like these that both my own and Jeff's fuses tend to be shorter as we are constantly hearing crying, sometimes even screaming and the persistent arching from our little girl. There are times when I feel myself starting to tense up and get angry and frustrated sometimes to the point of tears. Jeff is so good at taking over before I get to this point most of the time. And then as I sit back and take a look at the situation I can't help but feel bad as while I have gotten myself so worked up poor Isabelle is the one that is hurting and most likely has no idea why.
So as I pray each night I ask God for patience and that the teething will soon be over and then I thank Him that little people only have to go through this once.

Handling It Like A Champ

2009-02-07T17:03:00.000-08:00

Wesley has been fighting a nasty cough for the last week that has progressively gotten worse. Because of his weak lungs we did not want to just sit on this. So after 1 visit to the ER and 2 trips to the doctor's office, he finally was diagnosed yesterday with having viral bronchitis. The poor little guy, his whole little body shakes as he coughs and there really is nothing we can give him for it. On top of it, his doctor said it can last up to 2 weeks before it starts getting better. Amazingly though he really is handling it well. He's been fairly pleasant still when he is awake and overall has been sleeping fairly well. The worse part is that he sometimes gets agitated after he has been coughing, which who can blame him. But when it comes down to it I'm pretty sure he is handling being sick better than most adults. I just pray it gets better sooner than later.

What a strong little guy!

Thankful for Today

2009-01-31T06:21:00.001-08:00

Today Jeff and I will be doing something I have never done before. We will be attending a funeral for a baby. One of the little boys at the special needs daycare Isabelle goes to passed away this past week. He was going to be 1 in April.

This has given me a lot to think about over the last few days. At times, I am saddened as I can't imagine what this little boy's family is going through right now. How hard it must be to let go of someone so young and little. Maybe they are feeling hurt and angry. Or maybe they are feeling joy as they are thankful for the time they have had with Caiden and they know now that their baby is not suffering anymore. Their baby is with Jesus right now, perfect and without any pain or troubles.

We have been told that Isabelle's life expectancy will most likely be shorter than normal due to all the brain injury she has endured. This means she could live to be 5, 20, 40, or maybe more. As sad as that makes me feel thinking we may not get to have her here with us as long as we may want, there can be a real gift in someone telling you this news as a parent.

You see by the doctors telling Jeff and I this, we have been able to make sure not to take any new day for granted that we have with both Isabelle and Wesley and actually the rest of our family. We have treasured each day - both the good and the bad (which isn't always easy to do). We have been able to wake up each morning and thank God for one more day to spend with our children, our siblings, and our parents. We have been able to appreciate the gift God gives us daily to tell the people in our lives that we love them yet one more time.

And when the time comes for Isabelle to join Jesus in heaven as sad as we will feel and as much as we will miss her we will rejoice with her as she will be perfect. All of the trials she faces each day will be gone. On that day, Isabelle will be made whole. What a day that will be!

As I end this posting for today, I want to tell all of my family and friends who read my blog how thankful I am for today and more importantly how thankful I am to have each and every one of you in our lives. God has certainly blessed our family with gifts beyond measure and one of those greatest gifts is YOU!

Never Just a Cold

2009-01-16T05:00:00.000-08:00

So Monday night Isabelle started coughing a little bit. I didn't think much about it at the time, but should have known better. I should have known that this was just the first indicator that she was coming down with a cold. Sure enough by Tuesday night she had a full fledged cold with clogged up nose and all. Now I'm sure that when any child gets sick with a cold it is not always that easy. I am guessing though, that compared to my little Isabelle's colds they are much more manageable.

You see when Isabelle gets a cold, she gets a cold. It is never just a little sniffling or coughing. It is always a nose fully plugged up, almost constant coughing, and it's a guessing game as to whether when she does cough if it will produce something or not. On top of that, when the cold is at its worst it never fails that during at least a few of her coughs during the day formula or thick mucus will come out of her nose as well which can't feel good. This means having to be by her side anytime you hear her cough because you never know what will happen. This also means having the suction machine handy no matter what room you are in just in case it is so thick she needs some help getting it out of her mouth or nose.

Now knowing all of this I have better pretty impressed with how she has handled her cold this time. Typically colds mean little sleep for those nights because of all of the coughing and a lot of holding her because she can't breath as well and this makes her crabby. (Can you blame her?) Well Tuesday and Wednesday she did exceptionally well. She really wasn't that crabby and was still sleeping fairly well. Our biggest struggle was that Wesley still had not had his RSV shot, so Jeff and I have been splitting kid responsibilities so the one taking care of Isabelle wouldn't have to have too much contact with Wesley. Jeff took Isabelle and I took Wesley.

The good news is that Wesley finally got his shot yesterday after I personally drove to UPS and picked it up myself. The bad news is Isabelle's cold was much worse last night. She was up by 3. Jeff took her to the couch, but her sleep still wasn't the best because of the difficulty to breath easily and the coughing. Hopefully this will only last a few more days, but only time will tell.

I hate it when Isabelle gets sick. It always hits her so hard. But one of the things she constantly teaches Jeff and I its that she is one tough little girl. She has been through so much and just keeps on truckin' forward. It's a valuable lesson for us as well as we need to remember that if someone as little as her has been able to conquer so much with God's help we too can do the same.

It's Make No Difference to Them

2009-01-12T20:08:00.000-08:00

For those of you who have a child who was born premature or know of a child who was born premature, I'm sure you are very aware of the risks these little ones have during the cold and flu season in regards to what they call RSV. While in the NICU, especially if your child will be coming home during the cold and flu season, they lecture you as a parent on how important it is to keep your child in to protect them from RSV.

For those of you who are not as familiar with RSV, the letters RSV stand for Respiratory Syncytial Virus. Pretty much this is a viral infection that effects the lungs. For children born prematurely, because they do not have immune systems that are as strong or developed as full term children they are at a much higher risk of not only contracting this virus, but it also can become fatal for some of them. The tough part is that this virus seems like the common cold or flu, so it is very hard to protect a baby from this during the winter season. One way a parent can do this is by having their child receive a "synagis" shot to help prevent the onset of RSV in their child.

Isabelle had this done and probably will until she is 3. As for Wesley, he had his first shot while he was in the hospital. Then in December he had his second shot. January 2nd he was due for his third shot. Notice I didn't say in January he had his third shot. We have been struggling with the company that supplies the shot. They have been nothing, but trouble. Since Isabelle gets Title 19 she gets her shots supplied by a different company. We tried to have Wesley switched to this other company, but they refuse to take him on. So back to struggling with this other company. They were suppose to send it 3 different times now and each time when it does not appear on our doorstep we talk to someone else at the company and they tell us something didn't go through and that they have not even sent it yet.

I tried to be patient with this company, but I am losing this patience. This is my child's life we are talking about. They appear to be in no hurry to correct their mistakes. It makes no difference to them. It is not their child being put at risk. Jeff tried explaining this to one of the last reps he had talked to and I thought we finally got through to someone to ensure things were going to happen, but yet once again no package.

They promise it will be here tomorrow, but only time will tell. Meanwhile, I am even more nervous than normal to take Wesley out. I just keep praying that the shot will be here soon and that in the meantime we are keeping Wesley away from as many germs as possible. It is so frustrating when you are trying your hardest for your children and yet you still feel like people are not trying to work with you. Hurumph!

Oh How I Love Sunday Afternoons

2009-01-11T19:41:00.000-08:00

When I was growing up especially in high school and college I found that I became especially fond of Sunday afternoons. Even though I knew Monday morning was creeping its way toward me, I loved the relaxed feeling of a Sunday afternoon. Maybe it was the fact that Sundays were my chance to just kind of veg while I watched TV and mom and dad read the paper or snoozed a little themselves. Or maybe it was the fact that while vegging I also took my weekly Sunday afternoon nap, but I remember just how much I would look forward to those times.

In the past year and a half, I have longed for days like that. When you have a child with special needs who doesn't always take a nap and who for the first year and some of her life would only sleep during the day if she was held, those Sunday afternoon moments seemed like only glimpses of the past.

Well, today Sunday afternoons were back. As I lay on the couch after waking up from a nap which was short, but so well worth it, I looked around my living room. Wesley was bundled up in his swing sleeping while he rocked away. Jeff was at the other end of the couch probably dreaming of more sleep. And Isabelle, well she wasn't sleeping, but was very content laying on the floor watching TV (her new favorite pass time). It was so wonderful, so peaceful, and so nice. Sure I had plenty to do today, but I figure I don't get chances like this all too often so I took advantage of it and just took it all in and boy did it feel good.

I pray that we all take advantage of those "Sunday afternoon" moments that God gives us to refresh and rejuvenate ourselves. Wishing all my blog readers a great start to this new week!

Happy New Year a Little Late

2009-01-10T12:58:00.000-08:00

I know I'm late in this posting, but I wanted to wish you all a Happy New Year!

I've been back to work now for a whole week. Boo Hoo Hoo! This past week has made me realize just how spoiled I was over Christmas break. I miss my babies! I was able to spend almost my whole break with both Isabelle and Wesley. This was unexpected as I thought Isabelle would be spending most of my break at her daycare. Instead, because of the weather and travelling she spent the break by my side. It was so nice. I got to go from Isabelle to Wesley, would take a break to play with all my nieces and nephews, and then back to Isabelle and then Wesley again all break. I loved it!

Probably one of the best parts was that we got to see Isabelle smile while she was awake for the first time ever. It was about 2:15 on the morning of my birthday. We were staying at Jeff's parents house. I was sleeping when all of the sudden I hear Jeff say "Tiff, Tiff, she's smiling." I awoke to see the best gift - Isabelle awake and looking around while smiling. So there in the middle of the night Jeff and I sat crying over something that may seem so small to so many, but to us was a huge blessing. We pray that this will just continue to become more and more of an occurrence as time goes by. We'll post a picture as soon as we are quick enough to take one.

Now, however, it's back to all the responsibilities - getting up early, kissing Isabelle goodbye, loading Wesley in the car, off the babysitter, kiss Wesley goodbye, spend the day with other people's little angels, back to get Wes, home to make dinner and any other household or school things that need to be done, spend some time with Wesley and Isabelle and then off to bed to start it all over the next day. Phew, I'm exhausted just thinking about it all. I am already looking forward to Spring Break!

I am so thankful for the 2 little blessings God has put into my busy life. Not only are they Jeff and my pride and joy, but they also are constant reminders to us of our God's amazing love and a great excuse to put the business of the day to the side to just sit and cuddle.

A Christmas Unlike Any Other

2008-12-26T19:40:00.001-08:00

So this Christmas has brought some new perspective to me this year. Christmas has always been one of my favorite times of the year. I love the beautiful church services and all the wonderful music. I love the feeling I get seeing a fresh blanket of snow on the ground on Christmas morning and how at peace it makes me feel. I love the opportunity to spend time with family. I love watching people open the gifts I have searched for and seeing the excitement on their faces. This year though brought something new for me to love.

Last year, Christmas was very hard for Jeff and me. We were so happy to have Isabelle home with us and yet as we struggled with her to find a position she would be content in and juggled her and her pump and the burp cloth that was being used very frequently for all of her spit ups, we also found ourselves looking at our siblings and their children and feeling discouraged. Here we too had a little one, but our little one may never be able to show excitement for a gift. Our little one may never be able to open her own gifts. Our little one may not even ever be able to comprehend the reason we celebrate Christmas. And as happy as we were to spend time with our family and rejoice with our nieces and nephews and their excitement we also had a feeling of sadness knowing the way we would celebrate Christmas with Isabelle would always be different.

Well, this year my perspective is very different. I'm not sure if it is because I am older and wiser :) or if it is because Isabelle has become more content or if it is because I am more comfortable with who Isabelle is or if it is a combination of all of these things, but it has made this Christmas very special for me. As I sat with Isabelle over the past few days, first in church in the pew on Christmas Eve, then again on Christmas Day, and then as we opened gifts as a family, I realized just how important Christmas is for her too. For on this day God sent down His Son not just for me, but for Isabelle. I've always known this and have always felt this was a special gift given to me, but this year it has really become so much more important. Because of this amazing act of love, my little girl who can't sit up on her own or even smile will someday be in heaven and she will be perfect. She will be able to play with her cousins, she will be able to call me mommy, and she will know that she has a Savior who has loved her just the way that she is. This has been my gift this year - to know that as hard as days are sometimes and as sad as I can get seeing what she cannot do, all of this will someday be gone. What a special Christmas this has been for me!

Wishing you and your families a Merry Christmas. I pray that this Christmas season has brought you happiness and peace as you remember the best Christmas present given for you and that you celebrate this all year long!

315 Days and Counting

2008-12-18T18:58:00.001-08:00

As of today, between everyone in our family and all their "issues", Jeff and I will have spent 315 days in the last year and a half in a hospital. Wow! That's a lot of time. The bigger thing is that the majority of it has been watching our children lying in a hospital bed being cared for by someone else.

Before we had Isabelle I had barely ever been in a hospital. I had my occasional mishaps as a child who was very klutzy, but that was really it for me. I remember how shocked I felt when I was admitted into the hospital the week before Isabelle was born. I cried as they told me that I was going to have to be admitted and stay. Even this time, when they told me I had to stay with Wesley I cried because I just did not want to spend all that time until he was born sitting in a hospital room.

Well, I must be getting use to it because last night the plan was going to be that Jeff was going to stay with Wesley overnight and I was going to stay at his parents' with Isabelle. As I was driving to their house, I realized how hard it was for me to not be there at the hospital with my little guy. So after talking it over with Jeff the plan switched and Jeff stayed home with Isabelle and I went and spent the night at the hospital. I never would have guessed I would have asked to be the one to sleep in a hospital chair for the night being woken up every few hours to have a nurse come in to do cares instead of sleeping in a nice cozy home in a comfy bed or couch without those interruptions. And yet last night I was almost in tears again wanting to do just that. Crazy how situations can change how we feel about things.

As for Wesley, he is doing very well. The surgery took about an hour. When he was in recovery and I was allowed to go and see him, I was really surprised at how good he looked. It's amazing how quickly little people recover after surgeries. In the case of an adult, we probably would have been real groggy and looking like we were in pain. Wesley was wide awake and was even smiling although the nurse did tell me that was from the block they gave him in his spine before the surgery, but it was still good to see him smile even if he was numb from the waist down.

Anywho, I just want to thank you all for praying for Wesley and for keeping us all in your prayers. It has been a long 2 years, but God has been with us every step of the way and we have grown so much both in our maturity and in our faith walk.

If It's Not One, It's the Other

2008-12-16T17:21:00.001-08:00

Just when we thought we had everything under control again at least for a little bit when it comes to our children, we were fooled once again. Isabelle has been doing fairly well since she came home from the hospital. In fact, the nurse who took care of her at daycare yesterday said she wanted to give her a gold star for how good she was all day long. As for our other little handful, I shared some concerns with Jeff yesterday morning as Wesley had not had a dirty diaper since Friday night. Now normally I don't think I would have been concerned, but with having the hernia he has had now for quite a while I was a little concerned.

Before we left the NICU, the doctors showed us how to check the hernia (Thank you again that I am married to Jeff, because it is not the most pleasant thing to do.). We have done that almost daily since he has been home and things have seemed fine, but with not having a ton of knowledge in the area I was a little nervous with him not having any dirty diapers. I asked the lady who takes care of Wesley during the day, who is also a nurse, if she would keep an eye on the situation. When I picked him up yesterday, he still had had no dirty diapers and appeared to be eating less. She suggested we get him in to see his pediatrician as soon as possible just to be on the safe side in case some strangulation of the intestines was starting to happen.

So there we were again on the phone with the nighttime triage nurse trying to find out what we should do. I'm pretty sure if this keeps up they are going to start calling us by name. At least if this happens, we won't have to explain our children's lengthy history anymore. Anyway, the triage nurse said if he had no dirty diapers by this morning we should call again. Well, I prayed very hard last night for a dirty diaper by the morning. When I think about it, the things I have ended up praying for between both Isabelle and Wesley I never would have guessed I would have ever prayed for.

Well, no dirty diaper this morning so again Jeff was on the phone trying to find out if we should take Wesley to his pediatrician or to just take him to the surgeon. We finally opted for the pediatrician. So in the car Jeff went to take Isabelle to daycare. Then back home to pick up Wesley and take him to the pediatrician. According to the pediatrician, he may just be a little plugged up, but otherwise fine. So yeah to no emergency surgeries this week. After their trip to the pediatrician Jeff took Wesley to the babysitter then headed off to work for a few hours only to turn around again by 3 to go get Isabelle so she could be fitted for her new leg braces. And to make the day just a little longer it has started snowing here and the roads are no good. So a drive that would normally take him 45 minutes to get home took him over 2 hours. Needless to say he is going to be very tired by the time he gets home.

Our children definitely keep us on our toes and trying to be as aware of what is happening with them medically as we can. Please keep Wesley in your prayers as he will be heading in for surgery this Thursday. I know it is not a big surgery, but I am still quite nervous about the whole thing. I will feel so much better when it is done and over.

My Littlest Night Owl

2008-12-13T10:46:00.000-08:00

Since we have been so preoccupied with everything with Isabelle this past week and things now are a little bit calmer, I thought I would post a recent picture of our littlest night owl. Wesley and I had a fairly calm week. Our only times of struggle would have been the 4 am times, when I had only an hour left to sleep before having to get up to get ready for work, and Wesley decided he was hungry and had to eat NOW! Then after eating he thought, "Well I might as well stay up for a while and check out what is happening in the darkness of the night."

I have also realized my little night owl also has a bit of a temper. Numerous times, especially when he is hungry, we try to put his pacifier in his mouth to calm him until the milk has been warmed, but if he is in one of his moods he will literally pull the pacifier right out of his mouth and throw it. The other morning I woke up to him crying and found that he had pulled his pacifier out of his mouth and had thrust it right out of the bassinet and onto the floor.

He's quite the little stinker, but I'm loving every minute of it even in the wee hours of the night.

Nursing 101

2008-12-13T09:45:00.001-08:00

So Isabelle was finally able to be discharged yesterday. Yeah! Jeff called me after work to tell me that they had planned to discharge her in the early afternoon, but by 3 pm she had thrown up again and this time it was a yellowish color which made Jeff wonder if something else was going on. The nurse on duty offered to clean it up while Jeff went for a walk and when he came back she had thrown it away without showing it to the doctor. (More frustration) Jeff was able to salvage a cloth that had some of the emesis on it. He showed it to the doctor. The doctor didn't seem to think it was something to worry about at this point and told Jeff that it was still okay to bring her home. So in the car he packed her and onward they came home.

I was so excited to see her. Jeff, knowing how I am, knew that one of the first things I was going to want to see was the new tube they inserted in her tummy. During her stay everytime they tried to feed her she started throwing up, so they opted to try a different type of feeding tube called a G-J Tube. This tube inserts in the same spot into her tummy, but is much longer. It goes through her tummy and ends up going into the second portion of her intestines. Their thought was by doing this that this would give her stomach a chance to heal while still being able to give her the nutrition she needs. This is great if that's what she needs right now to help her heal.

My struggle comes from the fact of what it looks like externally. She now has a tube that is probably about 8 inches long coming out of her tummy. At it's end is this bulky piece with 3 different ports. One port connects to the balloon under her skin that keeps the tube in. One port goes to her tummy so we can administer her medications. The last port is the one that goes all the way to her intestines. Hopefully she will only need this for a few weeks. Last night I received more nursing training (from Jeff) in how to use this new feeding tube.

If I sit down and think about it, it amazes me just how much I know medically speaking now compared to just under 2 years ago. From using a feeding tube to giving medications via syringes, from putting a nasal cannula on a child's face to changing the valves on an oxygen tank - these are just a few of the many things that have just become a daily part of my life. These are things that I don't even think twice about when doing and yet 2 years ago if you would have asked me about a feeding tube I wouldn't have even known what one looked like. I'm fairly certain if I liked science more I could go to school and become a nurse myself.

I also believe that this is just one more instance in which I can see how God has worked in my life. With all of this, I have seen what a blessing it has been to be married to Jeff as he has such an interest and love for the medical field. He has been able to explain things in better detail if I get lost with what the doctor says. He has been a huge advocate for both of our children when it has come to their hospital stays. And he has been my strength when I am feeling weak and feeling like I just can't handle it anymore.

It's amazing that through everything we have been through how we have been able to appreciate some of the smaller blessings in life we normally might have taken for granted.

Not What They Want

2008-12-08T18:26:00.000-08:00

Do you ever feel like when people ask how you are doing they really only are trying to be friendly and that they really only want to hear you say "Good" with a cheery look on your face?

I went back to work today after getting over my bout of flu. I spent most of the weekend at home trying to recuperate while Jeff spent the weekend staying with Isabelle at the hospital. Things there are not much different. The doctors continue to frustrate us by not really having a plan of action. We're still waiting for them to try to start feeding her again. It seems every time they have tried to start feeding her she ends up throwing up again. She at least has become a little more content during her stay. I'm hoping and praying only a few more days of this until our life can return to our kind of normal.

Anyway, today as I returned to school numerous people asked how Isabelle was doing. As I started to tell them that she is okay, but that she is still in the hospital and that they still are unsure of what is causing her all the problems I felt as if many of them started to turn off the moment I didn't say the typical fine or good. With everything that Jeff and I have endured over the past year and half, there are times when I feel like I am the bearer of bad news. I feel like more times than not I don't have the best news to share about my life. I feel as if when they ask me how things are going that I should lie because they really don't want to know how things are.

Of course I have had my share of days where I feel down in the dumps and down on my life, but overall I really feel that God has given both Jeff and I quite a bit of strength to get through all of this without being depressed. And yet when people ask how things are going and I try to share what is going on in my life in as honest of a response as I can without being a real pessimist I still feel like people don't want to hear it and don't want to be around me as if it is contagious or something.

How do you handle something like this? Do you just give the wanted answer of good, fine, or okay or do you tell it the best you can? OR do you pick and choose who you give which answer to? Doing this makes me feel like I am not being true to my life. I am not asking anyone to feel sorry for me or to pity me. I am just sharing what is happening in my life because in all honesty it IS my life and as unpleasant as it may seem at times I want to say to people, "You're just hearing what is happening in my life. I'm the one who is living it. And I'm doing okay, so please just try to be understanding and support me." Hmmm, maybe I should try that sometime.

Thanks again to everyone for all your prayers. I know Isabelle is strong. She has proven that time and time again. I know she will get through this too.

I Had No Idea

2008-12-06T09:09:00.000-08:00

When people told me parenting could be hard, I had no idea. This by far has not been the easiest week for our family. I started the week by going back to work. I had no idea how hard it would be to leave our little guy to be cared for by someone else for the day. I know we already do it with Isabelle and I remember feeling this same way when we finally decided to send her to the special needs daycare we send her to, because of this I thought it would be easier, but it really hasn't been. Besides this I feel like I have been extra tired at night and not able to spend nearly the amount of time I would like to with either Wesley or Isabelle.

I thought this would be enough to handle for the week adjusting to not being at home with Wesley, but honestly that was the least of my worries. Wednesday night I went to bed early as my mom and dad were here visiting and said they would help with the kids so I could get some sleep. When I woke up at midnight, my mom told me Isabelle was not having the best night. She had been having quite a few episodes of throwing up and seemed very restless. By 3am when I woke up, Jeff was on the phone with the ER. Isabelle was still throwing up and he was worried that either she was going to become dehydrated or worse that possibly suddenly (with all her past history) that she had attained a blockage in her intestines. We were advised to take her into Children's Hospital's ER. So we bundled her up, left Wesley with my mom and dad and headed off for the 45 minute drive to the hospital.

We told her history over and over to different nurses, doctors, and I don't even know who else as it was such a blur. Not knowing what to expect the doctors decided to run a variety of tests to try to find what the problem was. If you've read my blog before you know that I don't even like watching my children get their immunization shots. What I was about to be in for makes watching them get shots seem so simple now. I watched as they put an IV in her arm trying to calm her as this sudden pain had to have scared her. I brushed her hair as I watched them insert a tube into her bottom to push barium into her intestines to see if there was a blockage. I tried to comfort her as they pushed a tube about the width of a pencil down her nose to try to suction her tummy and when she continually gagged they pulled it out and my stomach dropped as blood came out with it and they said let's try it again. I felt so helpless as I watched my baby be poked and prodded repeatedly. And as gentle as they were trying to be I hated every minute of it.

Finally at about noon, the surgeon told me he had really thought they were going to have to operate, but that after the barium test it didn't look like there was any blockage at this point. So they were able to move her out of the ER and up into a room. She was so uncomfortable. I continually asked that they give her something to relax her, but the attending physician kept telling us they didn't want to do that at this point. We decided that Jeff would stay with Isabelle for the night and I would go home to take care of Wesley. When I called the next morning the nurse told me Isabelle had been very uncomfortable with a lot of crying and arching overnight and that the doctors had finally decided to give her some morphine. Apparently by this point though, it did nothing for her.

I went to work Friday morning not feeling too well myself, but planning to work the day and then go see Isabelle that night. I thought it was just my stomach being upset from everything the day before, but by 11 am I was in the car on my way home as I was feeling very ill. This at least told me that most likely Isabelle is just fighting a virus. I talked with my dad later that day and my mom too had come down with flu symptoms.

It is now Saturday morning and Isabelle is still in the hospital. We have no idea when they will let her come home. They finally started to feed her a little yesterday to see how she handled it. Jeff's dad stayed with her last night so Jeff could come home to take care of Wesley so he hopefully won't get what Isabelle and I have. His dad said she did not have a very good night at all. It is so hard being so far away from her when she is feeling so miserable. I just want to go get her bring her home and hold her. I have just had to tell myself that I need to trust the nurses and doctors that they will do a good job of taking care of my little girl.

To end this post, I know most of you already pray for my family daily, but please send out a special prayer for us these next couple of days. Pray that Jeff and especially Wesley don't catch this nasty bug. Pray that my body recovers quickly. And pray especially that God protect Isabelle and help her body fight this infection that she will be able to come home soon.

Happy Thanksgiving!

2008-11-26T18:52:00.000-08:00

When I sat down to try to write my Happy Thanksgiving to everyone who reads this blog I wasn't sure what I wanted to write. I have so many things in my life that I am thankful for this year that were there last year, but were hidden by my own sinfulness.

Last year at this time, I was too emotionally exhausted from everything we had just been through and still had to come with Isabelle to want to thank God for anything. Last year at this time, I was questioning God and why things were going the way they were. Last year at this time, I knew I should be thankful, but I had a very hard time searching for exactly what to be thankful for. Last year at this time, I was more envious of those around me and their healthy kids than being thankful for the child God had given me. Last year at this time, I was too busy trying to figure out how in the world I would ever be happy again. Last year at this time, I was too angry at God and hurt to even think about the wonderful things He had given me.

And now here we are a year later and my list overflows. This year, I am thankful for all of the family and friends near and far that have reached out and helped in so many ways, from watching Isabelle to give us a break, helping us overnight when Isabelle wasn't sleeping, helping us get the baby room ready for a new little person, praying for our family each day, or even just being the arms we have fallen into when we have felt discouraged. This year, I am thankful for the opportunity God has given to us and to Isabelle through MCFI (her daycare) where she is able to have so many therapies and is challenged in new and different ways daily. This year, I am thankful for the husband God has given me who has been my strength when I am feeling weak and overwhelmed by all the doctors appointments and struggles of having a child with special needs. This year, I am thankful for the new little boy God has given to our family and all the joy he has already brought to our lives. This year, I am thankful for all the little things God gives me as reminders of His love. This year, I am thankful I have a God who even when I questioned Him loved me and carried me in His arms through what was the hardest thing I have ever had to endure. This year, I am thankful for the gifts of laughter and for the feeling of contentment I feel in regards to my life. This year, I am thankful to God for all the steps as small as they are that Isabelle has been able to take. This year, I am thankful for the honor and opportunity that God has given me to be Isabelle's mommy.

God has truly blessed Jeff and my life with unique gifts - gifts that even a year ago I could not see. He has opened my eyes and I am amazed at all that He has done in my life in such a short amount of time. As you celebrate this Thanksgiving, it is my prayer that you too can see all the unique blessings that God has given to you.

Is It Enough?

2008-11-24T17:19:00.000-08:00

Being a parent of a special needs child has already taught me so many things in such a short amount of time. Often times though, the most difficult and/or frustrating part can be not knowing if what we are doing is the best for Isabelle. I know that any parent probably feels this way at times, but in most circumstances they can always ask someone who has raised a child before like their mom or a sister or a friend to get advice on what they might have done in that situation. We don't have that much of an opportunity as our resources are much more limited.

I often times find myself questioning if we are doing enough. I wonder if there are other things we could or should be doing to help Isabelle become the best she can be. Should we be doing therapies with her more throughout the evenings when she is home with us? Should we be practicing feedings with her more often? Are the toys we have for her the most developmentally appropriate? Should we be practicing different positions with her more often? The list goes on and on.

I feel I constantly worry if we are doing enough. I worry what if 10 years down the line we look at what she can do and say "If we would have done more practicing sitting her up or been even more consistent with her therapies could she have done more? If we would have done more practice letting her taste things maybe she could have actually eaten a few things by mouth." How do I know we are doing enough? This can be such an exhausting question.

And yet with all of this questioning within myself I always come back to the same two answers. I'm just going to have to trust that she is in God's hands and He will help us help her become the best she can be, as hard as that can be at times. And secondly, I have to trust that our love for her will be enough. It is my constant prayer that as much as Isabelle has been a blessing in our lives that we too will be a blessing in hers.

My Own Snuggle Bugs

2008-11-24T17:01:00.000-08:00

I was just checking out my sister Susan's blog and saw a post of her three little lovelies all snuggled together in bed. It made me think of a few pictures I just took the other day of my two little snuggle bugs. It is amazing the sense of peace one can feel when they watch a sleeping baby. Those moments are absolutely little gifts from God.

And Then There Were 9

2008-11-22T17:12:00.000-08:00

Jeff and I are excited to welcome the newest nephew to our family. My brother Shawn and his wife Julie had their third boy Thursday afternoon. Boy are their hands going to be full. From what I hear, proud brothers Zach and Josh are super excited to have one more boy in the house to goof around and wrestle with.

Jacob Bruce was born at 4:08 pm. He was 6 pounds 15 ounces and 20 inches long. Both he and mommy are doing very well. They were both able to come home today which is Julie's birthday. What a great birthday present for her! We all look forward to meeting the newest member of our family very soon.

Congrats Shawn and Julie and welcome to the world little Jacob.

Look How Big We Are

2008-11-18T16:04:00.001-08:00

Wesley wore his first outfit today that wasn't a sleeper. He just looked so cute I had to take a few pictures to share with you.
Thanks Aunt Susan and Uncle Todd for the great outfit! He finally got to wear it!

TGFM . . . Thank Goodness For Moms

2008-11-18T12:34:00.000-08:00

So yesterday was a big day for me. Wesley had his newborn check-up with our pediatrician and Isabelle was supposed to get her flu shot. This means that this was to be our very first big adventure of taking them both out at the same time. Jeff had talked about taking the day off, but to save money my mom volunteered to come with us. The trip to the doctor was actually not too bad. Wesley slept and Isabelle just rode along and looked out the window. I was really impressed with how smoothly it actually went.

The doctor’s appointment was good. Wesley is 6 lbs. already and our doctor felt everything was moving along in the right direction. Next was Isabelle’s turn. We had the option of laying her on the table or holding her for her shot. I hate watching her get shots as she has no idea what is going on and they can hurt so much. My brave mom volunteered once again to hold Isabelle while getting the shot (which I ended up having to look away during because I hate it so much- what a chicken).

Then it was time to head for our next stop. Shortly after we got in the car Isabelle’s feeding bag alarmed because the bag had tipped and it fed a ton of air into the line. In the process of trying to talk mom through fixing this problem, Wesley began to fuss. By the time we got to the hospital to pick up a copy of Wesley’s renal ultrasounds, Isabelle began coughing on all her secretions and Wesley was madder than mad. So there right in front of the hospital entrance my mom climbed between the seats to wedge herself down between the two car seats. An older lady walking passed peered strangely into the truck as I’m sure she was trying to understand what the lady in the middle of the truck was doing. I quickly ran in and picked up my Wesley’s films and headed back out. Our next challenge when we got home was to figure out how to get my mom out. So first I took Isabelle in, and then Wesley. Finally, my mom was able to pull herself out from the backseat.

From here my mom needed to go home, so mom #2 took over. Jeff’s mom had come to help watch Isabelle while I took Wesley to his urology appointment. This appointment too went pretty well. Wesley doesn’t need to take medicine for his hydronephrosis (aka swollen kidney) anymore. Hopefully tomorrow we will find out when he will have his surgery for his hernia.
Needless to say the day overall was a complete success thanks to our moms. They always come through when you need them even if it is to do things they have never done before or to help you find the comedy in stressful situations. So thanks mom and mom #2!

Bedtime . . .One of My Favorite Parts of the Day

2008-11-16T10:44:00.000-08:00

So yesterday was really Jeff and my first day taking care of Isabelle and Wesley by ourselves almost all day. After a week of having my mom here (which was such a wonderful gift for us) to help with the transition of having 2 infants in our house, we spent the day working with feeding, changing, napping, and medication schedules trying to allow both of us a good amount of time to spend with each of our special little treasures. I think we passed.

By about 8:00 though, we were all pretty tuckered out. Jeff and I finally had a chance to sit down on the couch together. We looked across our small living room and felt content as we saw both Isabelle and Wesley nestled underneath a blanket sleeping. It was so nice to finally be able to spend the day with our whole family at home.

We probably should have treasured this moment more as within minutes Isabelle was awake wanting to be held. Shortly thereafter, Wesley woke up wanting to be fed. I sat on the opposite end of the couch from Jeff and watched as Isabelle cozied up to her daddy, a rush of contentment swept over me. You see to me this is just one of the unique ways Isabelle shows us her love. She may never be able to call us mommy and daddy or tell us she loves us. She may never be able to reach up and give us a hug or even a simple kiss. She may never even know that we are her mommy and daddy. But each night she gives us this gift of showing us her love in a way I had never expected.

Thanks Hinton Family for the cute puppy!

God continues to give us little things of encouragement to show us his love for our family.

Prayers for Little Angels

2008-11-12T05:26:00.000-08:00

Through my short life as a blogger, my sister Susan introduced me to a blog she felt I might be interested in and might relate to. It is the blog of a family with incredible faith and their journey with the smallest miracle Abigail.

Although Abigail is not going through the same exact situation as Isabelle, she and Isabelle share many similarities developmentally as well as their needs. I have found myself coming to this blog not only to keep up with Abigail and her family, but also as a constant renewal of my faith as I see how others going through similar situations rely fully on God and His plans for their lives.

I am so thankful Susan came across this site and shared it with me. (Thanks Susan!) It is my hope that with continued contact with Abigail and her mommy (Tamara) we might become friends who will hold each other up when we are down and celebrate with each other when God grants us blessings in our lives big or small. If you would like to check out Tamara's amazing blog go to http://www.sweetlittlelamb.blogspot.com.

Anywho, on top of being an incredible mommy, Tamara has started a site called Prayers for Little Angels. This site includes many of the friends Tamara has met along her journey with Abigail who also have children with various special needs. My heart has been touched by many of their stories as well. Included on this site are both prayer requests and praise reports for these special little ones. God has really blessed each one of these unique little blessings with wonderful families whose love carries them through each day.

Please click on the link I have included on the right side of my blog. Check it out and become another prayer warrior for these families. I know that our family has been continually touched by the numerous prayers that have been sent up to heaven on our behalf. These prayers are what have gotten us through some of the hardest days in our lives and what have helped our faith stay strong in times when the devil has worked his hardest.

Prayer is such an amazing gift from God!

Welcome Home Wesley!

2008-11-09T14:51:00.000-08:00

After 84 days in the NICU, Wesley was finally discharged this past Saturday! Jeff and I were very excited for his homecoming. We felt like this day would never come. So with portable oxygen tank and apnea monitor in hand we left the hospital NICU hopefully for the last time except for visits back to see the nurses whom now seem like family.

Once we were settled in, Jeff went to go get Isabelle from the daycare she attends. Once home, we looked around our house. It almost looks as if we are a medical facility with all of our children's gear. From large oxygen tanks to IV trees holding Isabelle's G-Tube pump and bag, it was a little overwhelming as I sat and tried to think about how the next few months were going to work for our little family. As a tear ran down my cheek, Jeff and I talked about how it is as important as ever that we trust God's plan for our lives as we now will be dealing with two children with special needs. I continually pray that He will give us strength and patience as yet another challenge has been brought before us. I also thank God for the help He has given us in having so many family members so close who can come and help us so often.

We know God has great plans for our lives and we live each day knowing that He is there by our side, holding our hands, and carrying us when we are weak. He daily gives us little gifts throughout our day to remind us of just that. What an awesome God we have!

Welcome home Wesley!

Trick or Treat

2008-11-06T14:19:00.001-08:00

Take a look at our little "treat".

Isabelle dressed up as a lion for Halloween. We did a practice run at home the night before and she even let us keep the little mane for her head on. She didn't like it so much at school the next day, but at least she did good for mommy's pictures.

We were given two costumes for Isabelle to wear this year and since I am such a fan of dressing her up she had to bear with me and put on the second costume later that night at Grandma and Grandpa's. She made a pretty cute and cuddly ladybug.

Bath Time With Daddy

2008-11-06T13:44:00.001-08:00

Jeff gave Wesley a bath for the first time on October 30th. The nurse on duty for the night told me she was ready for the training with camera in hand. They decided to give him a sponge bath instead of a tub bath as this was Jeff's first time. Jeff was a little disappointed, but they told him he needed to start slowly. So with the washcloth in one hand and holding Wesley's hand in the other Jeff successfully gave Wesley his bath.

When all was done, Wesley looked pretty content. Jeff must have done a good job. I guess we know who will be giving the baths when Wesley comes home.

Thanks dad!

Meet the vans

2008-11-05T19:36:00.000-08:00

Hi, my name is Tiffany and I am one of the members of a family of 4. My husband Jeff and I were married in 2004. Jeff is an Assistant Warehouse Manager for a protective footwear company. He is also in school working towards a degree in nursing. He keeps himself busy studying, playing online poker, keeping up his fantasy football team, and being a great dad.

Our daughter Isabelle was born 12 weeks premature in March of 2007 due to my body having PIH or pregnancy induced hypertension. At a whopping 1 pound 14 ounces, Isabelle struggled for 6 months in the NICU as she was faced with numerous surgeries and what seemed like a constant uphill battle. She finally was allowed to come home last September. Isabelle is on a fairly strict schedule between her G-tube feedings and her medication times. This past Spring she was officially diagnosed with having cerebral palsy. She just now has started to sleep through an occasional night here and there which her dad and I are very excited about.

Our little man Wesley was born 9 weeks premature in August of 2008. I again was fighting PIH, but this time Wesley had the umbilical cord wrapped around his neck and had to be delivered early. He weighed 2 pounds 10 ounces. Wesley has spent the last 2 1/2 months in the NICU trying to gain some weight and strengthen his lungs. He hopefully will be joining the family at home sometime in the very near future.

Our family of 4 has definitely been dealt its share of difficulties and trials over the past few years. But with God as our strength we have persevered and have been able to see the many blessings He has also given to us - even as unique as they are.

Welcome

2008-11-05T15:18:00.000-08:00

My sister Susan has got me kind of hooked on this blogging thing. She thought it might be a good way to share with others how things are going in the crazy rollercoaster my husband Jeff and I like to call our life. So I thought I'd give it a try. I hope you enjoy!