Monday, September 24, 2012

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 :-)

Friday, September 14, 2012

Lessons learned....

Ella's first day of preschool
September 5, 2012
School, swimming, and now ballet! Ella has a busy schedule for a three year old. Preschool is going very well. She gets great reports from her teachers and therapists. She is enrolled in a full day preschool program. She also gets all of her therapies at school...PT, speech, OT, and even music therapy. It's been an adjustment for me more than her! I am so used to having the therapists in my home and being an active participant in each session, so to not see her doing PT or hear her practicing with the speech therapist is hard. I have been getting lots of reports from everyone and so far so good. Just yesterday her occupational therapist told me that she sees a big change in Ella's confidence in only a week. I was so happy to hear that she holds her own in the classroom and is very involved with every activity.

While Ella is doing a lot of learning and growing, I am learning (or being reminded at least) of some important lessons myself. I learned once again this week to NEVER underestimate my daughter.
I learned that a few extra/missing/mixed up chromosomes do not define Ella.
First ballet class!
September 13, 2012

I was so excited to bring Ella to her first dance class. She looked so cute marching right into the studio to sit with all the other little girls dressed in pink. I was also a nervous wreck....worried that she wouldn't be able to keep up or that the other kids/parents might question Ella. It's an insecurity that I have every so often. This was the first time I was putting her in a group with "typical" kids. Most of her activities until now have been through early intervention and the toddler group special ed program. I know that she is not as coordinated as many kids her age and her speech is not as good yet, but I also know how far she has come. I am so proud to even be able to take her to this class. The smile on her face when she was with the other kids was very reassuring. Ella has no idea that she can't run as fast or doesn't have the strength to jump as high as these other kids. She has no idea what "low tone" is, but it was clear to me when she was in the group that she fit right in.

That's Ella standing up...getting ready for her turn
to tumble!
I still cried though. I cried enough to send me to the bathroom so that the other parents wouldn't see me. I am even a bit embarrassed to admit it. I wasn't crying because I was upset. I think they were a mixed bag of tears. I was proud to watch my daughter at her very first dance class and sad at the same time that I would ever doubt that she would be able to handle it. The trigger was when the teacher asked her what her name was, she spoke up and said Ella. The teacher didn't quite understand her though and thought she said Anna. Ella said her name a second time and the teacher looked up at me. I quietly corrected her and said Ella. It is such a silly thing to get upset about.

There were other little girls that were shy and didn't want to say their name. Some even left the room crying. Not Ella. She made it through the entire 45 minute class....she tumbled, twirled and tapped. She followed along with the teachers and seemed to have a great time. I couldn't help but be emotional. I think the tears were my way of relief from all the built up anxiety I had. Clearly it was a lot of worry for nothing! I don't care that the teacher didn't understand her. She said her name (and pretty clearly too, I thought!) All I want for my daughter is absolute happiness and to never be looked at as different.

On this day, Ella didn't look different at all. She looked beautiful, confident and happy!