A Message from Tyler!

Hey!  Would you support me as I walk beside my little red wagon this year when Mom and Dad take me to The Upper Valley March for Babies?  Just hit the purple sponsor me button over to the right.  
Thanks, 
Tyler

His favorite volume level these days is 11.  Yup really loud.

In a little over two weeks, we will all be heading to Lebanon for our annual March For Babies walk and to visit at the ICN Reunion.  Yes, the little red wagon will be going with us, but I'm excited this year.  Tyler may actually walk parts of the Walk.  He doesn't always want to sit in the wagon or the stroller for our neighborhood walks anymore.  He wants to get out and as he says "Tyler walks himself".  This will be a huge emotional achievement for me considering at the start we were told Tyler may have some real inhibiting disabilities due to the prematurity and the brain bleed.  This child is just amazing.  He's over come so many obstacles and probable outcomes.  He is constantly wowing the doctors with how well he's doing (right now the big wow is how well he talks!).  Today he floored the GI doctor when she came back in with a new prescription sheet by asking if he could hold his new prescription.  Clear as day he says as she comes back in, "Can I hold the prescription?".  When the Dr didn't respond to him quick enough, he holds his hand out and again asks "I hold the prescription".  She was just tickled and showing him off to another Dr.  Yes we still have our bumps and he does have a lot of extra needs that still take up a lot of my time, but WOW!  He walks, talks, thinks, and is just plain stinking cute!  Through all the hospitalizations, sicknesses, doctor appointments, not seeing well, he is the happiest, giggliest little boy.  What a strong character he is.  I hope nothing ever takes that a way from him. 

A rare moment of quiet sibling love yesterday.

We did see GI today because he is very slowly gaining the lost weight from the RSV.  So the prescription is hopefully going to stimulate his appetite and get him more interested in food.  We will have another weigh in in about a month to see how well that works.  We had today's visit because when he had his Neonatal's visit on Friday his weight curve was way off.  Other than his weight, both Dr's were very pleased with how well he's doing. 

Brain Matter

3/24/11
I started this post about a few days before Tyler got very sick.  I never finished it while he was sick.  So allow me to sneak this in now.


2/16/11
I've been a little busy over the last week or so.  I find it's easier for the kids to be a little more busier when Ben is gone so they don't dwell on the fact he's gone.  We have a couple more days before he comes home, but today will be a quiet day as the girl nurses a barking cough and a fever.  Poor thing has been curled up on the couch all morning.

Hey Pink flowers go great with Backhoes!

Last week was full of doctor appointments.  I believe the most exciting visit was with neurosurgery. He had his MRI, which he still quietly sits through and amazes the techs.    Monkey was even given some ear muffs this time.  Our visit with neuro was a very happy flirty one for Tyler.  He talks up a storm with her and smiles.  The MRI showed a lot of good news.  First his head has not grown very much over the last 4 months.  Which is great, we want the rest of his body to grown into his very large head.  More about that later.  The fluid pockets on the outside of the brain have decreased some and what's more have shifted in such a way to indicate that it's moving into areas to be absorbed.  His ventricle size has not changed since his last MRI.  This is great because that tells us the shunt is working at the right setting to keep a balance.  So if his head hasn't grown, the fluid on the outside is smaller, and the ventricles are the same size what fills the extra space that just has been made?  Why brain matter!  Tyler's brain has grown in size.  His brain is bigger and developing.  Getting a little bit of control of the ventricles has allowed the brain to grow and either push the fluid out or the fluid is getting absorb to make room for the brain.  So a major hurray!
We talked  a little more about his in ability to perceive depth well and how his vision still has a few weaknesses.  We wonder if the cyst that formed in the area of the brain where vision is processed disrupted Tyler's ability to processes how to see depth a bit.  Time will give us more information of how his sight develops.  For now we just continue what we are doing and enjoy his smiles and antics.

Back to 3/24/11
That was the huge great news I was trying to get out before Tyler got sick!  Yeah for Brain Matter!

A couple of smiles before the storm.

David's House Help

David's House is a wonderful place right on the campus of Dartmouth Hitchcock Medical Center in Lebanon, NH.  It's a place where parents with kiddos up at the hospital can come and stay the night, have a meal, sit for a bit, take a shower, and just plain leave the hospital for a short time knowing that they can literally walk back with in minutes if needed.  It's a safe, warm, welcoming place that Ben and I use when ever Tyler is in the hospital and sometimes even for clinic appointments.

"David's House is the dream of a young boy, David Cyr, who passed away at the age of five after almost three years of battling acute lymphocytic leukemia. Throughout his time in the hospital, David made friends with the other children receiving treatment for illness and injuries, and always begged his parents to take his new friends home with them to his house, his haven from the pain and uncertainty of his condition. David's parents met other parents and caregivers who slept in waiting rooms, cars, anywhere just to be next to their child, and when David passed away in 1984  the dream of taking all of these families home began to become a reality."     This is from David's House's main web page.

If you have a moment to help out David's House win $5000 with a Facebook page contest sponsored by Grappone Auto, please do.  Although the House is located on the hospital's grounds, it is not founded at all by the hospital and relys on donations and Grants to cover operating costs.  

If you have a facebook account, A link to bring you right to Gappone Auto FB page
From there,  
To VOTE: You must first become a "Grappone Fan" of our Facebook page by clicking "like" at the top of this page. Second, scroll down the LONG list of individual posts made by Grappone for each organization (Most are in alphabetical order). Once you find your organization's post made by Grappone, click "like" on that post. Each unique click is recorded by Facebook and = 1 VOTE.

Take only a moment of time and if David's House is in the lead, it could help the wonderful people at David's House bring a moment of peace and calm in a stressful period to a parent with a sick or injured child at the hospital. 

Rainy Spring Day

 

What to do on rainy spring days?  Make Banana Bread and then go and jump in puddles of course!  Things are going well here.  Tyler is so much better.  Thank you all for the well wishes! 

Jump in PUddleS Jump in PUddles.

Don't knock my hot pink pants.

"Look Mom, I'm making mud castles!"

March For Babies 2011

Well, life is starting to become it's normal pace again.  Tyler is much better and getting stronger every day.  Over the weekend he has gain approximately one pound back.  He already feels heavier and his little belly is starting to have the Buddha look again.  He is full of giggles and smiles and today we started his swimming lessons again.  Loves that diving board, could go without the rest of it. 

It's that time of year again.  We are walking for the third year now in the Upper Valley March for Babies walk.  It's early this year, May 7th.  Really it's a very fitting time for us since Tyler was born in May.  So please help us and our little red wagon raise a bit of money to help out the March of Dimes.  For without their help and research, Tyler's story may have been drastically different from the way it turned out.  Either click on the purple badge to the right or the link below.
Sponser us Please

I promise to take some pictures soon, Tyler really does look like himself again. 

We just got back from our pediatrician for a follow up to this whole 9 days in the hospital with RSV deal. 

He smiles!

His oxygen saturation is back up to 97%-98% again!!!  Hurray!!!  We left the hospital with a saturation of only 93%-94%.  His lungs sound very clear and he looks really good.  He has lost about 4 pounds and looks very skinny again.  He just finished his steroid medication this morning so his appetite should flood back and he should pick up the weight very quickly.  He is still really weak and I have had to help him to his feet once or twice today but he is already so much stronger than he was yesterday. We will take next week very easy and really allow him to completely recover.

He giggles.

Boy did I miss his giggles and smiles.  I'm so happy to have them back! 

Home

We are home.  It's been a long 9 day stay at the Emerald City.  And boy are we all happy to be home.  Tyler kept saying all the way home "I"m ready to go home!".  It was so nice to see Rachel.  Both Rachel and Tyler were so excited to see each other.  I'm exhausted and will update better tomorrow.