Saturday, September 17, 2011

Farewell to my little bitty itty bitty baby!

During my pregnancy, my OB told us to stock up on preemie clothes because baby was so small.  The first time I held up an outfit, I was amazed.  It looked soooo tiny! My baby is going to fit in this?!  I couldn't fathom something so small.  For those of you that don't know, we chose not to find out the sex of the baby.  Finding unisex preemie clothes=impossible.  We waited until after Tyler was born and thank goodness for friends and family who showered him with tiny outfits.  He was 4lbs 13 ounces at birth and yesterday, he weighed in at a whopping 11lbs 7 ounces!!! The weekend before last we boxed up his newborn clothes which he finally outgrew at 5 months :) It is funny that the same scenario occurs daily almost word for word
Stranger: Awww, what a cute baby. How old is he?
Me: {Insert age at the time}
Stranger: Oh my gosh, he is so tiny!
Me: Yeah, he is a little guy.
Stranger: How much did he weigh when he was born?
Me: 4.13
Exchange smiles, walk away.
This is funny to me because they hear his age and think he is little, but to me he is soooo big compared to this little lemonheaded boy we cuddled in the NICU:

In an earlier post, I mentioned I had asked my mother in-law to make a blanket with some of our favorite preemie outfits.  Mammaw Coffey is the craftiest woman I have ever met and this is what she did with those little bitty itty bitty baby clothes:

Tyler loves it, and so do I!!  Thanks Mammaw :)

Friday, September 16, 2011

Testing~Testing~ One, Two, Three.....

Since I last wrote on the subject of appointment updates, I have had the busiest kid on the block! We got the results back from the EEG=normal :) We took another short trip to Indy to see the neurosurgeon.  She gave us another opinion on the helmet issue.  She suggested that we do positional therapy super aggressive style.  Basically, put him on the opposite side and keep him there at all costs. She even suggested velcro, safety pinning and stapling to the I am NOT kidding! Another thing was I had to switch sides when feeding him.  He has to be fed sideline which means completely sideways.  I am right-handed so I has holding his head with my left hand therefore putting all the pressure on the left side of his head adding to the problem.  She worried that the added weight of the helmet would hinder his development and she added that most insurance carriers wouldn't cover the helmet. On the spine issue, she wants to do another MRI since the first one was done at 50 days old.  Fixing the spinal issue, could alleviate the kidney issues.  At the end of October, we will do the MRI and see her again.  At this time, she can revisit whether or not he needs a helmet and also decide if surgery to release his spinal cord is needed. 
Wednesday, we spent the night at the hospital in Evansville so a sleep study could be performed.  We will get the results back in about a week for those.
Thursday, we had another swallow study done.  We have recently started cereal and wanted to make sure their were no issues with him aspirating.  We also were questioning whether he had matured enough to feed in a "normal" position(no sideline) without aspirating.  We found out that he is fine eating cereal and he can now feed sitting up!!! Awesome news! 
He is also doing great with all his therapies.  He is getting better head control, reaching for things, and keeping his hands open more of the time.
Thanks for all the prayers, support, and encouragement! 
Tyler is a rockstar and he impresses us with new tricks daily :)

Monday, September 5, 2011

Kammy's Kause

Introducing the 4p- families

Kammy's Riders with the kids

  Kammy's Kause is the largest fundraiser for 4p- research and awareness in the U.S.  Tyler's syndrome is Wolf-Hirschhorn and is the main one included in this.  4p- means that there is a deletion (-) on the petite arm (p) of the 4th chromosome (4). Soooo, it goes like this: Jared has a daughter named Kamdyn who was diangnosed with 4p-.  Jared is also in a band called Breakdown Kings.  Years ago, he started a music festival and dubbed it Kammy's Kause that has grown bigger and better every year.  This festival lasts over 2 days and has many midwest bands who come and volunteer their talent and time.  He has since also added Kammys Ride.  This event was in Fortville, Indiana which worked out because we were up in Indy all week for appts and it was only 45 minutes away. 

This was such a great event and 11 other 4p- families from around the US had made the trip.  It was a great experience to meet other families and connect with people that "have been there".  We laughed, cried, and danced together.  Jared also did a balloon release and tribute song for all that 4p- kids that have passed away and there was not a dry eye in the place.  It was great to see such a diverse group of people coming together to support a cause so dear to us. 

Great music-Great fun and I can't wait until next year!!!!