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 :)

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 floor...no 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 :)

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!!!!

http://www.kammyskause.org/

Game Time

My sister-in law Nicole called and mentioned that she was working on getting us Colts tickets if we wanted them.  Of course we did! We ended up getting the tickets and this was an awesome night for many reasons.

1) This was such a stressful week and it was great way to finally relax and enjoy ourselves.

2) Tyler stayed with Brians parents and we got some great time with Peyton.

3) This was my first NFL game

4) Dallas Clark, need I say more?!

They were AWESOME seats and we had a blast.  Thank you, thank you, thank you to Michael and Nicole!!!!

Life's Tough~Get a Helmet

Neurologist appointment:
We shared our concerns about some of the behaviors we thought might be seizures.  The doctor ordered an EEG which we were able to get done that day.  We should get the results back in a week.  I hate waiting.  She also was concerned with the shape of Tyler's head.  He favors one side and we have working with the Physical Therapist to try to correct this since he started therapy.  Unfortunately, our little guy is very stubborn and has found ways around all our tricks to get his head the way HE wants it.  She recommended helmet therapy.  It would correct the shape of his head.  We were offered this option a month ago by our pediatrician but we wanted to wait it out to see if it would get any better.  Since it doesnt look like that is going to happen and we have a small window to do this we agreed. 
Helmet therapy is technically considered cosmetic and therefore sometimes not covered by insurance.  The shaping of his head won't affect brain development but will affect brain growth.  From the beginning, Brian and I agreed that if something was recommended for Tyler and it made sense we would do it.  We would never use cost as a determining factor.  This being said, I honestly laughed out loud when the receptionist explained that this tiny little helmet with foam inside would cost $2,000! What can you do but laugh?! There is a chance that insurance will cover it so we are keeping our fingers crossed.  So boo for the helmet but hooray that we will be getting this fixed.  We will just roll with it and try to make the best of the situation.  We are already brainstorming halloween costume ideas with the helmet in mind: colts player, q-tip........

Riley Hospital Take 2

Hooray for Tyler :)  Today, we made the trek downtown for the kidney function test.  Another catheter, an iv, and more pictures.  Tyler was taped to a table for 45 minutes while they did this test.  Our funny little guy actually fell asleep after the catheter and iv were in (he didnt cry a bit).  I will have to post pictures when I return home of him asleep super taped to this table...it was quite a site.  The results were that one kidney was functioning at 44% and the other 55%.  Both should be at 50% but the test has a 5% give-or take error so our urologist was very happy with the results.  She also explained that we should keep him on his daily dose of amoxicillin to prevent kidney infections.  The kidney reflux is not hurting him as long as there are no infections.  If he were to start getting infections, the reflux could be corrected with surgery.  The surgery is "easy" enough but we will just keep praying that Ty stays healthy and no surgery will be needed.  She did decide that we needed to be seen by the neurosurgeon for his spinal cord and made the referral for that and they should call us in the next week or so to set the appointment.  SOooo another ultrasound and appointment in 3 months to watch the kidneys and off we went :) 2 down and 1 to go= neurologist appointment tomorrow.  Go, Ty! Go!

Day 1: Riley appts

The day started off at 10:30am with an appointment with Doctor B.  He is a developmental pediatrician and I LOVE him.  The first time he saw us, he spent over 45 minutes with us.  This time, it was over an hour.  He listens to all our concerns and is so thorough.  In a day where sometimes you feel like just a number at a doctors office, this man acts as if you are his only patient all day.  Some of his worries are Tyler's weight gain.  Although he is gaining weight, he is not going up on the WH growth chart.  He has us upping his caloric intake to hopefully pack on the pounds. Tyler will be five months on Saturday and is 10 1/2 pounds.  He recommended doing another swallow study in a month to check and make sure that Tyler is still not aspirating while he eats.  He wants us to get a sleep study done because Tyler is gasping in his sleep and he wants to make sure he is getting enough oxygen. 
Next, were the tests.  Ty had a renal ultrasound done to check his kidneys which was uneventful except that he had just fallen asleep and the tech moving him around woke him up.  Next, we had urodynamics (bum, bum, bummmmmm in the scary voice).  This test requires Tyler to have a catheter inserted and they fill the bladder with contrast.  They are able to check how much his kidneys hold before voiding (peeing) and check his kidney reflux while taking xrays.  They also stick a thing up his bum to measure which muscles he uses while peeing.  I was dreading this test all day.  Mind you, it's 2:00 and Tyler still has not had a nap. So the scene goes like this:
Tyler is laying on a xray table.  They ask me to hold to his legs.  Brian is up by his head talking to him.  There are 3 nurses in the room.  Another women comes in and her job is to help relax the children.  She has an ipad and asks if Tyler likes music or movies.  He loves music and she goes up by his head and starts playing some tunes.  Tyler starts cooing and flirting with this pretty little lady.  The nurse is getting the test ready and I am holding his legs when I start to feel warm all over my shoulder and shirt.  The nurse screams ,"Ahhhh!" and covers my peeing son with her hand.  I am in shock but we all totally cracked up and it lightened the mood.  Tyler didnt cry but his eyes got as big as saucers when they started the testing.  He is such a trooper.  We saw the urologist after the testing and found out his kidney reflux went from Grade I to Grade III in 3 months....not good.  Kidney reflux occurs when the bladder empties and instead of urine leaving the body through the ureters, some of it refluxes back into the kidney.  This can cause kidney damage and eventually kidney failure.  Additionally testing has been scheduled for Wednesday to check kidney function.  Little buddy has to have another catheter put in for the testing and I pray it goes as smooth as this last one , minus me getting peed on.  She also wants to speak with neurosurgeon about his spinal cord.  I got an explanation about this also: a normal spinal cord ends at between L1 and L2.  Tyler's ends at L2.  A spinal cord below L2 is considered a "tethered cord".  This could cause problems with kidneys and leg function from what I understand.  Sooooo, Wednesday we will get the kidney function test done and then go back to the urologist office to go over the test and see what the neurosurgeon has said.  I will update after testing later in the week.  I feel as if this update is one huge paragraph with no organization but it was the easiest way for me to regurgitate all the information I could remember.  Please continue to keep Tyler in your prayers but also all the children at Riley.  It breaks my heart when I see some of the things these kids are going through.  My sweet baby has given me such a new perspective on life.  I am reminded daily of Gods blessings and thank him for allowing me to be a mom to such an awesome little dude.  I also want to give a shout-out to my fantabulous husband.  Many aspects of our marriage has changed and there is an element of stress that def. wasnt there before.  He is such a rock for our family and I am so grateful for such a supportive and loving husband.  I <3 you B!!!!!
Until next time~
Rock on.