Children's Check-Up

Thumbs up for a good check-up!

Ella had her four month check-up at Boston Children's hospital last Friday. This visit marks 18 months since we switched to Dr. Holm. We have made a lot of adjustments on medications and doses and we are finally seeing the benefits of those changes. Dr. Holm has been very deliberate and diligent with Ella's medication. When we first met with her in January 2012, she explained to us how small changes can make a big difference. We have seen the results of rapid medication changes to her health. It is not good. At times it seems like we have been on a slow pace and little change, TIME to adjust to the proper dose has proven to be the most effective approach.

We were excited to learn that for the first time, Ella's levels are perfectly normal. Her T4 and TSH (both thyroid hormone) as well as her growth factor all register right in the middle of the normal range. She gained 4lbs and grew more than an inch since January. So as we approach her 4th birthday she is 34 lbs and 36 inches and finally wearing 4T clothes. This would certainly explain her recent need for a whole new wardrobe!

Ella is still on a pretty high dose of growth hormone, but the plan is to let her continue to grow into this dose. She is responding very well and catching up. She jumped from the 11% on the growth charts to the 18%....all of this since January! When Ella was first diagnosed with hypopituitarism, she was not on the growth chart. That initial diagnosis also came with disheartening news at the time that there was "nothing we could do" to help her grow and that growth hormone "probably wouldn't help" (quotes from our endocrinologist at the time). It is gratifying to know that sticking with my intuition and remaining dedicated to finding help for Ella has paid off.

We return to Dr. Holm in September. We will have her annual bone age x-ray and a complete lab work up. If all goes well, we may be able to bump her visits to every 6 months!

Stand Up TALL!

Look Mom, I can stand up!

Sometimes it seems like Ella is under a microscope because of all the therapy and doctors visits. So when she makes strides, it's always a celebration. Tonight we are celebrating! Ella can now get herself up to standing without having to pull up on something. It seems like such a natural thing that most kids manage to accomplish with little fanfare. However, for us, this is a goal we have had for a while. In true Ella fashion, she decided tonight was the night and she stood up and walked away like she has been doing it for years. Although I do think she may have even been just a little impressed with herself, since she practiced her new skill in front of the mirror for quite some time.

I love the excitement that I feel EVERY time Ella surprises us. It's almost like she knows when we need a little pick-me-up. While we are by no means sad or upset, there is always a worry. This morning it was the phone call telling us last week's blood work shows her growth factor is low again. Her levels dropped to 36 (normal is over 100). It's an easy fix. We just have to increase her growth hormone dose. In fact, Dr. Gleason says this just shows she is growing quickly and her body needs more of the medicine to continue her great progress. This is something we'll have to deal with and monitor for many years. The hope is that as Ella gets older, she'll be able to recognize when she's not feeling 100% and we can make adjustments accordingly.

So tonight we will boost her shot up a bit...and who knows, standing up on her own today....running tomorrow?!