BIG Jump!

Nine months ago, I am not sure I thought I would be writing this....two years ago, I know I didn't think I would write this....Ella is GROWING, and at light speed!

Stand up TALL!

After struggling with a correct diagnosis and then wrangling with doctors and doses, it seems we have finally found a combination that works great. A combination of not only medicine, but doctors too. Ella had another check-up at Boston's Children's hospital on Friday. The results are still unbelievable to me. Our little Pnut is now 30lbs and 36 inches!!!! This not only bumps her up on the growth curve, it puts her in a much closer range to her peers.

I was not surprised that she has grown. I figured that out when all of her pants were too short, her shirts were creeping up her belly and she jumped from a size 6 shoe to an 8. I just didn't realize how much she has grown. Since her well visit in June, Ella has gained three pounds and two inches. She has put on 10 lbs since January! We celebrated her jump ONTO the growth charts in June when she landed in the 2%. Now she is in the 8.7%....still tiny, but catching up quickly. Jason and I don't care all that much about the numbers and percentages, but it certainly puts it all in perspective.

We had a great visit at Children's. Along with the good news on her growth, it seems we have finally stabilized her thyroid medication. Her doses were changed so often at the end of last year, she went from being too low (hypothyroid) to way, way too high (hyperthyroid). This wreaks havoc on everything (growth, appetite, mood, immune system). Now that Dr. Holm has followed Ella for 9 months and had several consistent blood draws, she feels confident turning her attention more to her growth hormone dose. Ella is getting the highest dose possible for her age and size. The challenge with growth hormone therapy is finding a dose that replaces what the body is not making. We don't want her to grow too fast. The good news is, we may be able to lower her current dose. However, like the thyroid medication, it will have to be done gradually. We will know for sure once the lab results are back. Dr. Holm also ordered a bone age x-ray. Here's another bit of perspective...when Ella had her first bone age x-ray when she was diagnosed (at 18 months), the results showed her bones were the age of a newborn! We should have all the results back later this week.

Perhaps the best news of our visit was to hear the Doctor say Ella is healthy. She is very pleased with her progress, not only her growth, but overall development. As long as all the labs come back normal, we don't have to go back until January.

Cousins! Ella is the "big" girl in every sense now :-)

Tall and Skinny

It's been a busy week getting back into our routine after the holiday's. We had a check-up with Endocrinology on top of everything yesterday. I have been anxiously anticipating this visit for a few weeks now, but not because I was so curious about Ella's gains. I have been going back and forth with the doctor since before Christmas about changes to Ella's meds and some other issues I feel they have overlooked. I need her records to take to Children's Hospital in a few weeks and it seems all of a sudden the doctors here in Albany want to be extra vigilant. I appreciate the efforts, however this is the way I feel we should have been treated from the beginning. I am constantly calling for lab results and expressing my concerns about every little issue. I understand they see several patients, but I also think they are not doing their job well when I can't even get a phone call to let me know that my daughter's blood work shows her levels are low and her medicine doses need to be adjusted significantly!

Okay rant over (for now) -- As for yesterday's appointment, it was overall positive. I have seen some improvements in Ella since we increased her Synthroid and growth hormone doses. She has more energy, her skin is getting better, and she is coping with things more appropriately. She now stands at 32.5 inches tall....a jump of 2 inches in just three months! We are all very happy to see such gains. I knew she grew. She certainly looks much taller and she can get into more trouble (like pulling plates off the counter and opening doors on her own!) Her weight is another issue. We affectionately refer to her as our little rack of ribs these days. She weighs 23 lbs...a gain of only 3 ounces in three months. This too was an expected outcome. She is a skinny kid. It's not for lack of trying. She eats pretty well and we are constantly feeding her snacks throughout the day. Part of the issue may be from the fact that her meds were off for a bit. The other issue is the jump in height. She is growing so quickly that it is hard to pack on the pounds (I wish I had that problem these days, haha!) Dr. Gleason was not concerned. Ella is finally sneaking on to the growth charts in the 1% range these days.

We head to Boston in a few weeks for a consultation with Dr. Holm and Dr. Hirschorn. Hopefully we'll get some more answers. In the meantime, ice cream sundaes for everyone to celebrate progress (and maybe fatten Pnut up!)