3 month update

Father's Day nap

Hello all! Sorry it has been so long but you know how it goes; life happens.  I just put Tyler down for a nap and Brian is taking Peyton back from our visit so I am ignoring the dishes in the sink and sitting down with a cup of coffee to finally give an update.  It has been a busy week as we have had Peyton since last Saturday which makes never a dull moment!  He has become quite the daredevil and I thank the Lord at the end of each visit when he goes back to his mom without any new bruise, bump, or trip to the ER!   I can't believe he is about to start kindergarten.  It has always seemed so far away but now it's here. We will get him one more time for two weeks before school starts and we will have to start doing the every other weekend deal.  This will be an adjustment because we have gotten him for 9 consecutive days a month for some time now. We got to spend some good time together this week which included numerous games of Candyland, bike rides, and the Wii.  My mom even watched Tyler so Peyton and I were able to take some time in at the pool with family which was nice.  Brian's parents came down for a visit and they couldnt believe how much bigger Tyler is.  He is up to a whopping 8lbs 11 ounces.  He is out of his preemie clothes and into the newborns..woohoo!  I gave Pat (Brian's mom) some of my favorite preemie outfits and she is going to make a little blanket for Tyler with them. 

Playing candyland before bed; Tyler was not impressed.

Tyler finally got his swallow study done Monday.  Since birth, feeding has been rather inconsistent.  Sometimes(usually at night when he is really sleepy) he feeds smooth and easy.  Many of the times, it's like he thinks too much and breathing, sucking, and swallowing becomes crazy.  He was choking at least once per feeding and Brian and I have been pushing the issue of a swallow study for some time.  Finally, after some exaggeration and a tiny bit of manipulation on my part one was ordered.  This past Monday, we went to the hospital and they put barium in his bottle.  He was placed behind some sort of x-ray machine that showed a constant picture of his throat, mouth, etc.  He started feeding and pretty quickly the feeding therapist told me to stop.  He was aspirating and the milk was going into his lungs.  The feeding specialist told me that he has probably had treated pneumonia this whole time. Since he has been on amoxicillin for his kidneys, it had kept the infection at bay.  I felt sick to my stomach that this had been going on for so long.  This taught me several things.  1) Trust my insticts. Just because I don't have a medical degree doesn't mean I don't know when something isn't right with my child.  2) Be persistent and insistent when dealing with medical personnel.  We were able switch positions to what they call a "elevated sideline" to feed and ensure that none is going into his lungs. This position requires him to be completely on his side and slightly elevated.  Hopefully, as he matures and increases muscle tone this is something that will correct itself.  It could pose some issues in the future if it doesn't so we are crossing our fingers.
First Steps did their evaluation and we have put together our "plan of action" for the next three months.  This included a list of goals we wanted for Ty and then how we were going to accomplish them.  The team they have assembled to aid us in this will look like this:
Physical therapy- 1x a week for 45 minutes
Occupational therapy- 1x a week for 45 minutes
Speech therapy- 2x a month for an hour
Developmental therapy- 2x a month for an hour
Audiologist visit- 1x a month for 90 minutes
The process for getting his hearing aids is done and he will get his magic ears July 5th.  FINALLY!

Tyler is doing great.  He is doing more talking, smiling, and developing quite the flirt personality :)  We are excited to get the therapies started and see him grow and progress in his development. 
Love to you all!
Autumn

Everything's Gonna Be Alright

When reading about WH, it said that some children don't make eye contact or smile.    Some children never talk.  I am trying to take what I read with a grain of salt but it is sometimes difficult and depresssing.  This week, Tyler has taught me that he is not WH.  He is not to be labeled.  He doesnt have boundaries and he is AWESOME!!!! While doing tummy time, he rolled over to his back.  I couldn't believe it and thought maybe it was a fluke.  Since then, he has shown off his new trick to Brian and my dad on two separate occasions.  He has also started making eye contact and smiling AND "talking".  This all prettty much happened on the same day. The whole talking thing is also impressive considering he still doesn't have his hearing aids. I couldnt help but allow the tears of joy to fall as I fed him his bottle after all this occurred.  I looked down at my perfect son and realized it will all be okay.

PS Attached above is a video and if you are accessing from a mobile device, you may not be able to see it so check out http://www.youtube.com/watch?v=8OjMjYdAEl4

2 Month Update

Tyler had his 2 month check-up Friday and got his first round of shots.  He is up to 7 lbs 9 ounces and 20 3/4 inches long.  On the regular growth chart, he is in less than the 1st percentile.  Fortunately, there has been a growth chart made for Wolf Hirschhorn children and Tyler is almost exactly "normal" in height, weight, and head circumference for his age.  He has been a busy little fellow with all his doctor appointments and we are trying to see all the different specialists to either fix or elimate any problems he may be having.  Here is where we are at....
Ears: Tyler had originally failed the newborn hearing screen and was referred to Easter Seals to see an audiologist and do a more in depth test.  After the test, it was discovered he has severe hearing loss in both ears.  He doesn't hear below 75 decibals.  A normal conversation is about 50.  We were then referred to an ear, nose, and throat doctor to make sure there was nothing structurally that could be fixed to improve his hearing.  The ENT didn't find anything and gave the audiologist the go-ahead to start process for hearing aids.  He has been fitted for ear molds and those will come in about 3 weeks.
Kidneys: In the NICU they found fluid on his kidneys.  They put him on daily dose of amoxicillin to prevent any infections.  Follow up ultrasound was done 3 weeks ago where they still found a small amount of fluid.  They also did a test where they put a catheter into his "business" and shot dye to check for kidney reflux that could lead to kidney failure.  There was a small amount on one side but nothing too concerning.  Follow-up ultrasound scheduled in 3 months.
GI- He is on Zantac for reflux and will be seeing a GI doctor in about a week.
Spinal Cord-  An ultrasound was done a couple weeks ago and was found to be abnormal.  While at Riley, they did an MRI and the cord was found to be low-lying and abnormal.  I am supposed to hear back from neurosurgeon tomorrow on what his course of action will be.
Eyes- We see the eye doctor in a week.
Heart- He has no known heart problems as the echocardiogram in the NICU showed normal results :)
Brain- Cysts in the frontal lobe believed to be associated with the Wolf-Hirschhorn.  No course of action to be taken.
First Steps- He has his intitial evaluation on June 15th.  A physical and occupational therapist will be coming to the house to check him out.  The next day, his case worker will be coming to put together a plan of action that could include many different therapies that include speech, physical, and occupational.  Due to his hearing loss he will most likely start speech therapy as soon as 3 months old!  First Steps is also paying for his ear molds, hearing aids, and batteries.

Tyler  is growing and eating well.  He is a happy baby who only cries when he is hungry.  His favorite thing to do is play in his baby gym and bat at the dangling elephant.  He is such a blessing and we are so lucky to have him.  I am so excited to see his progress and watch him grow.  Even though the medical bills have made it above $10,000 and at times all of this can be overwhelming, we have faith that God has everything under control.  Please continue to pray for not only Tylers health, but that Brian and I can maintain that faith and be guided in the many decisions we will be facing regarding finances, treatments, and advocating for our son. 

Here is a website that has more information about Ty's syndrome and his story along with other families of children with WH.
http://www.wolfhirschhorn.org/about-wolf-hirschhorn-syndrome/