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?!


  1. Wow, Happy 8 months! Isn't crazy how fast it goes?! It's so awesome that you have a doc you love and trust. Hoping for weight gain!

  2. Brodie took a real dip in weight at age 8 months that lasted til 11 mo. He weighed 11 lbs for what seemed like forever. Then at 19 mo. Til 2 yrs old he gained and lost and stagnated and stayed at 15 lbs for such a long time. Now he weighs 18 lbs almost nineteen, never tube fed. I was even interested at one point and his doctors insisted the only reason wolf-hirschhorn children should be tube fed is if they have weak swallow or aspirated, but if they can eat a decent amount of food or formula they told me tube-feeding would only beef them up if it really helped them gain at all, you can even predispose them for obesity at some point by just shoveling calories in, their bodies r only going to use the calories how they will use them after all. We have definitely found this with Brodie, he has followed his own path and none of his doctors, geneticist, pediatrician, were ever concerned with his weight or size. Hope Tyler swings out of his downward trend soon because I know it is so worrisome to us parents. It was hard to watch Brodie not make gains while eating enormous amounts of food and pediasure. But I'm starting to get more comfortable with it as Brodie has progressed well developmentally. Thinking of you guys as you move toward April...I bet he can turn it around before that.

  3. Hello, I'm sorry for posting so late.

    I have a daughter with WHS and I was wondering what happened with Riley treatment. I'm looking for alternatives for feeding her and for improving her muscle tone. It is good to know Brodie had some improvements.

    Domenica's father