Friday, December 23, 2011

Big Girl, Big Night, Big Week!

It's been a week of firsts for Miss Ella! After weeks of waiting, and breaking in her new skates, she finally got to hit the ice. It was such a nice afternoon having the entire rink to ourselves. Jason and I were able to share something we love with the person we love the most. She did really well. It was awesome to see her huge smile as she marched across the ice holding Jason's hands.
We spent about 25 minutes on the ice and she was so happy the entire time. She kept looking at her feet....determined how to make those skates work like Mommy and Daddy. I am sure we will have plenty of more fun days on the ice.

I got this skating thing Dad!
Our little Pnut moved up the ranks to big girl this week too. She spent her first night in her new bed last night. We got her a toddler bed to make the transition from her crib. I really wanted this to happen now before her sister/brother arrives, so she doesn't feel like her crib has been snatched from under her when the baby is home.
All smiles trying out her new bed!
It was a pretty good first night. She fell right asleep, with only a few little disturbances overnight (she fell off the bed!) She was one proud girl when she realized she didn't have to wait to be rescued from a crib and could walk in to wake up Daddy in the morning! Things could get interesting now :-)

Wednesday, December 21, 2011

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.

Monday, December 12, 2011

Loving Lake Placid!

Ella and Jason taking in the view of Lake Placid
from the lobby of the 1932 rink.
If we weren't already feeling the holiday spirit, we do now after a wonderful weekend in Lake Placid. A Union hockey game was a good excuse for us to load up the car and head north for a little get-away. 

Pa and Ella enjoying some fun in front
of the hotel fireplace.
My parents joined us, making the weekend extra special. I have such wonderful memories of summers in Lake Placid at skating competitions. It was a blast to be back after nearly 20 years to share the magic of this beautiful little town with Ella.

Ella thought "hiding" behind the curtain in
the hotel room was hilarious!
 It was chilly, but the scenery was beautiful. There was just enough snow on the ground to look festive and not be a nuisance. There were all kinds of holiday events happening all around town. We saw Santa, there was Christmas music everywhere, and lots of good shopping! Our stay at the Golden Arrow Inn was Ella's first hotel experience. Who knew that one room could provide sooo much entertainment!

We packed a lot into our short stay. Ella wasn't a huge fan of being all bundled up in the stroller, but we did manage to make it a little fun for her too. She thought the bobsleds that were outside of many of the shops on Main St. were pretty cool!

Posing in one of the bobsleds on Main Street.

 By the time we got to the hockey game, she was loving that stroller. My mom was able to do laps around the 1980 rink and keep her away from the dreaded noise of the Union fans cheering on the team to a 5-2 victory (she is still not a fan of hockey games :-/)

Our big goal of the weekend though was to be able to take Ella skating for the first time. Unfortunately we missed the public skating session and a youth hockey tournament was consuming all the ice. It isn't quite cold enough for many of the outdoor skating areas in Lake Placid, so it looks like Ella's skating experience will have to wait a little longer. She is ready though. We finally found some little skates and of course she has a brand new skating dress! She has been practicing just walking on our carpet and has done surprisingly well. Hopefully we'll be able to try the real deal soon!
All ready for the rink!

Wednesday, December 7, 2011

Going With My Gut...

Ella and Jason just after she was born.
Love at first sight!
Since the day Ella was born, Jason and I have vowed to give her everything she needs to have the best life. It was actually a promise we made to each other long before we had children. I think we have done pretty well so far...especially given the many issues we have dealt with over the past few years. Ella is growing and thriving. It is a wonderful thing to experience. It's not enough for us though. I have had this gut feeling for a while now (call it mother's instinct, I guess). I feel like there is still a missing piece of the puzzle or something more that we could be doing for Ella to make sure she reaches her full potential. She sees her doctors regularly and we seem to have her medications sorted out. It bothers me that I have to feed her five different doses of drugs every day though. I constantly wonder if we are doing the right thing. The specialists we see here in Albany are good, but they are not the best. I am not always confident they can handle the complexity of Ella's situation. When it comes to your child and medical care, confidence is very important.

 We want a second opinion and that is exactly what we are going to get! The process is underway now (insurance approvals, referral letters, etc) to get Ella into Boston's Children's hospital. I have done some research and found a specialist at children's. Dr. Joel Hirschhorn is a pediatric endocrinologist specializing in genetics. He works with a team of doctors in Children's endocrinology department which treats children with some of the rarest conditions. It seems like it would be a good fit considering Ella's genetic diagnosis and her hypopituitarism. Dr. Pelnik, our phenomenal pediatrician supports us 100% We have had many conversations over the past year about pursuing this opportunity. I had a long conversation with her yesterday and she assured me that this is the BEST thing that we could do for Ella. While she knows the doctors here in Albany are very qualified, they do not have the experience or resources that the doctors in Boston have.

Hopefully we will have all the necessary paperwork and appointments set up within the next week. I am anxious and nervous about the entire process. It opens us up to another round of difficult visits, but Ella will have the best doctors following her. I know in my heart we are making the right decision!

Monday, December 5, 2011

'Tis The Season

I am soo excited about Christmas this year. The holiday seems to get better and better the older Ella gets. I must admit, Christmas has not always been my favorite holiday. In fact, for years I actually seemed to dread December 25th. You quickly learn when you choose a career in news that there is no such thing as a "holiday" and for many years that meant my Christmas was spent in a newsroom with my co-workers. It's just not the same when you are away from family! We are fortunate this year for a more flexible Christmas falls on a weekend (my days off!) I am embracing the season and really enjoying every special minute.

Ella and Santa 2011!
I took Ella to see Santa this weekend. I have taken her every year, but this was the first year I was actually a little nervous about how she would react. She is certainly old enough now to realize stranger danger. Plus, an old chubby man with a big beard and a bright red suit can be a little intimidating. We waited in line and surprisingly she seemed unaware of the screams and tears from some of the children ahead of us (phew). She was a little more clingy than normal though! When it was her turn, the look on her face was priceless. She was very serious and a little unsure about why this Santa guy knew her name and was asking if she was a good girl. I wish I could have captured the whole thing on video but there are strict rules about personal pics and video in Santa land!

We managed to get a pretty cute picture thanks to the efforts of Santa's elf who wasn't going to stop until Ella smiled. We made it through another year without the screaming kid on Santa's lap picture. I have added Ella's two previous pictures with Santa. It is amazing how much she has changed. My baby is looking more like a big girl these days!
Ella's 1st Christmas!
Smiling with Santa in 2010!