Tuesday, November 29, 2011


We had appts at Riley on Monday.  Tyler had an ultrasound and the urologist said there were no changes.  Then, we met with the developmental pediatrician, Dr. B.  I love this man more every time we see him.  He is my favorite doctor.  We told him about the changes in Tyler we saw while he was on the steroids.  He was doing things he had never been able to do before.  Prior to the steroids, Tyler didn't have the muscle strength to reach out and grab an object.  He was doing this and more much to our amazement considering he had lost weight in the hospital.  Dr. B agreed that the high dose of steroid was what had caused this.  It isn't an option for Ty to be on these but we questioned if there was any other options that we could consider that would have the same effect.  He told us he would do some blood work up on Tyler's hormones, thyroid, etc. If it came back that he had deficiencies in any certain area, we could look at replacing those hormones such as growth hormone therapy or some other options.  He is going to do research on growth hormone therapy on children with Wolf Hirschhorn Syndrome.  We would consider options not based on the fact that we want Tyler to be taller or bigger (because we don't) but if it would be beneficial in helping with muscle tone.  We will get the results of the blood work early next week.  We also discussed Ty's weight gain. He continues to trend downward on growth charts in the area of weight.  We already boost his formula to add calories but are now boosting it even more.  He basically told us that if this didn't work then we would have to start considering other options which is codeword for feeding tube.  We will revisit this when we see him in April so we have about 4 months to beef this kid up! Please pray that Tyler will gain some weight.
In other news, we were able to get the appt in Louisville with the neurosurgeon moved up.  We now go December 7th. 

PS Can you believe Tyler is now 8 months old?!


We spent this Thanksgiving at my Aunt Susie's house.  There were about 30 people and it was great seeing everyone.  Tyler got passed around and loved being the center of attention.  Then, we headed to Indy to do Coffey Thanksgiving.  I could continue this post by getting really deep and sappy about all the things I am thankful for this year-but I won't.  I will leave you with one thing I am thankful for ........

All the little things in life

especially this one.

Sick Bug

2 weeks ago we had an appointment with the pediatrician to get a flu booster.  Tyler had a cough and had not been eating right for the 2 days prior.  When we went to the appt, the doctor became worried about his oxygen levels and sound of his lungs.  Her recommendation was to go be admitted to the hospital.  Tyler was put on iv fluids and breathing treatments.  All tests came back negative for RSV, flu, pneumonia.  Wednesday morning he spiked a fever.  They started him on iv antibiotics and steroids.  Thursday morning he was so pale and still not eating.  I was starting to get really worried.  He finally turned a corner late Thursday night and started eating.  His lungs began sounding better and we were discharged Friday afternoon.  Tyler was a bear for the next week while being on the steroids, breathing treatments, and steroids.  Poor guy couldn't sleep and his stomach hurt because of the antibiotics.  He is finally getting back into the swing of the things.  Unfortunately, he lost weight that had taken about a month to gain.  A big thanks to everyone who called, visited, and brought us food-we appreciate YOU!!!
Happy boy-ready to go home!

Monday, November 7, 2011

Go, Ty! Go!

We got an appt to see Dr. M, but it's not until Dec. 21st.  We are praying that we can get in earlier and get the surgery scheduled before the end of the year.  We have met our out of pocket max for the year with insurance and wouldn't have to pay for the surgery.  It would be GREAT to get it done and not have to wait until next year and start it out with a huge medical bill.  The dr. only sees pediatric patients on Wednesday so my job is to call every Tuesday to see if their is a cancellation and we can get in earlier.
On a happy note. Tyler is in a halloween costume contest to win an IPAD.  The website is doing this contest to raise awareness about Wolf-Hirchhorn and our wonderful children.  The Ipad is a great therapy tool and Tyler could really use it.  So go vote for Tyler the little green monster at the site below and meet some really awesome kids on the site.
 Go, Ty! Go!