The Highs and Lows...

The first blog I ever wrote was titled The Ride of Our Lives. It was very clear, very early on in Ella's life that she was going to keep us on our toes. I am happy (and I admit, a little frustrated too) to report that she is doing just that.

There are so many emotions we go through. It's the elation over a new word, a glowing review from a teacher, and a clean bill of health that give Jason and me great joy. The highs of life! Then...it's the unknowns that come with chromosome 18, or the constant worry over medications and doses that send us back down. Jason and I have learned to deal with the roller coaster of emotions, for the most part.

We are being tested once again. After a great visit at Children's last week, Ella's lab results tell a bit of a different story. She is still doing great and appears on all fronts to be healthy and happy. I think this is why hearing news that her thyroid and growth hormone levels are very low is so upsetting. The email from the doctor began, "Her labs are a little confusing..." The instant response from Jason and I began, "here we go again..."

It's been almost two years since Ella was diagnosed with hypopituitarism. I would like to think that we have become pretty in-tune to Ella's needs. We can usually tell when she is low. She tends to be tired, irritable, her skin is dry and her appetite wanes. We haven't seen any of these behaviors at all. In fact, Ella has been energetic, growing quickly and very happy. So I guess Dr. Holm's "confusing" is appropriate.

I returned to Children's Saturday morning with Ella to have another round of labs drawn. Fortunately I had made the trip to my parents house for the weekend and just had a short drive to Boston. This means we should have results within a day or two. We have been through this before. Last year, we switched Ella's medication a number of times. The difference this time is the approach Dr. Holm is taking. She is far more reserved when it comes to changes. This is why she ordered more blood work before deciding anything. We are hoping that the latest growth spurt is what's throwing everything off balance. Results to follow....

No Wonder!

To say that I am frustrated with Ella's endocrinologist is an UNDERSTATEMENT! I have been questioning whether her thyroid hormone levels are correct for several months now (actually since June!) I have taken her for at least three blood draws to check and every time, the doctor seemingly brushed me off and said her levels were fine. I called again last week for another blood draw because Ella just seems to be a little off. She is sleeping lots, her skin is super dry (more than just winter dry), and she had a few other signs that I noticed a year ago before she was even diagnosed. At first I was told the results of the latest draw showed her thyroid levels to be borderline...and that they wanted to re-test. 24 hours later I got another phone call from the nurse who was backtracking big time. She said after "thorough review", the doctor decided to increase Ella's synthroid, without doing another blood draw. The history showed a decline in levels and she needs to go to one and a half pills a day...WHAT!! No wonder she hasn't seemed like herself. In one day she went from being borderline low to a significant increase in meds. I am thankful that I was at least persistent in having her tested multiple times. I hate to put her through so many needle sticks, but clearly it is best for her health at this point.

This was the final straw, solidifying my reasoning for heading to Boston for a second opinion. We have another check-up in Albany January 3rd. I am not expecting much from it. We head to Boston Children's hospital January 23rd where I am confident we will get more answers. In the meantime, I am optimistic that the new dose of synthroid will boost Ella's energy. She will hopefully be feeling good just in time for Santa's arrival.