Monday, May 30, 2011

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.


  1. I am praying for all of you. Not a day goes by I don't think about you, Brian and Tyler. Peyton too!
    Tyler is lucky he and God picked you and Brian to be his Mommy and Daddy.
    Thanks for keeping us posted on his progress and informing us all about WH. Love you All, S

  2. Tyler is such a beautiful boy! It can be very disheartening in the beginning, as it sometimes seems like the doctors visits never end and there is always something new added to the list of things to be concerned about. So far, it looks and sounds like he is beating the odds; a 2-month old with WHS who is well over 7 lbs is something to celebrate! May the days continue to get better and may Tyler continue to show you that he will not be defined by his syndrome. In fact, may he rewrite the book on it altogether! xo