Monday, January 30, 2012

When It Rains, It Pours....

Ella and Auntie of my favorite pictures :-)
January shaped up to be a rough month in our house. It was made up of a lot of sadness and sickness. We lost a dear family member, Jason's sister Jessica. This has been a difficult time for all of us, as she was not only a beloved sister, but a wonderful friend, a fantastic auntie, and someone who always knew how to make you laugh. I will write a blog for Jessica soon, but right now the emotions are too raw. It is so important for me though to let Ella know how much Jessica loved her and how special she was.

As we were dealing with our loss, I traveled to Kelowna, British Columbia (Jason's hometown) to be with Jason and his family for the services. Jason arrived a week earlier. It is a long flight and last minute tickets meant we were flying what seemed like around the world to get there. Ella had been fighting a nasty cold since Christmas, so she didn't make the trip. We figured it would have been just too much for her.

A hug after a long ordeal meant so much
to Ella and Jason.
 It's a good thing she did not travel because a day after I arrived in Kelowna, Ella arrived at the hospital to be treated for pneumonia. She was admitted to Winchester hospital (near my mom's house where she was staying) and later transferred to Boston Children's hospital. She spent nearly a week in the hospital on antibiotics to fight the infection. It was so scary and sad to be far away and have a child in the hospital. Jason and I are very thankful to our extended family who dropped EVERYTHING to help. My mom, sister, aunts, and friends all stepped in to make sure our little Pnut was getting the best care possible. While modern day travel dealt us delay after delay and even a few cancelled flights trying to get back to Boston, modern day technology kept us somewhat sane. We were able to facetime with Ella on my iphone a few times...we even got to speak to the nurse at Children's!

I am happy to say that Ella is finally much better. She is out of the hospital and getting back to herself! She is back to school and will get back to all her regular activities this week.

Ironically, the stay at Children's coincided with our long scheduled visit with the genetic endocrinologist there. We were discharged just in time to make it to our appointment and because Ella was already a patient, Dr. Holm was pretty familiar with Ella and her case. Jason and I were very impressed with her. She had lots of good information for us and seems to be very comfortable treating Ella's hypopituitarism. She drew some blood and is running extensive lab work to determine exactly the right dose and combination of medication for Ella. Some of her levels have been out of whack lately because of inconsistent blood work. We left her office feeling confident that switching to her care would be the best situation for Ella. We have another visit in four months, but we actually should know more about the latest round of labs this week. Score one for mom intuition (and a little luck getting an appointment)!

Wednesday, January 4, 2012

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!)

Tuesday, January 3, 2012

The Most Wonderful Time Of Year

Ella and Lucy enjoying Christmas Eve!
We had a wonderful Christmas this year. We have so much to be thankful for and so much to look forward to. It truly is the most wonderful time of year! Ella was a very good girl this year and it sure showed when Santa arrived. She got lots of fun stuff. This girl was spoiled with gifts! There were so many presents, it will take a few car loads back to New York to get everything home. She was definitely more into Christmas this year too and helped opening her presents (though she still doesn't like to tear into that paper!)
Auntie Joan helping Ella tear into some gifts.

Jason and I bought ourselves a nice camera this year as a Christmas gift. We have wanted to invest in a good camera for a while, and now seemed like the perfect time. We got to break it in on Christmas with lots of shots of Pnut.

Our big surprise this year was for our whole family. I secretly had an ultrasound to find out the new baby's gender. Jason had no idea I was doing this. I managed to pull off the surprise...and even kept it a secret for myself too. Through lots of will power, I asked the ultrasound tech to wrap up the results for us to open together. It's a girl! Ella will have a sister in June. We are all very excited and looking forward to the future and the excitement that comes with a growing family!

Here's to a happy and healthy new year for everyone. I know that life is about to get even more exciting in 2012 :-)