Happy March!

Happy March!

Wow! March is already here...this year is flying by. Only a few more months until our family gets a little bigger. We have been as busy as ever with the end of hockey season, a move into a bigger town house, and getting ready for baby, on top of all of our regular activities.

March for Babies 2012 Kick-Off breakfast.

This morning I had the privilege of being the MC at the annual March for Babies kick-off breakfast. This is the second year I have been invited to the breakfast. This year's walk is in April and the goal is to raise $515,000 regionally. Jason and I haven't walked yet, but hope to be out there this year! Project: Cameron's story has put together a team of walkers and since we have become involved with the annual book drive...it just seems appropriate to walk with their team!

Oh and speaking of the book drive....the totals are in and we surpassed the goal of 2400 books. This year Project: Cameron's story will donate 2,456 books to local NICU's. Yay!

Covered in stickers...and loving it!

Finally, I am so happy to report that Ella is doing great. She has just grown leaps and bounds since she is feeling better. She is definitely growing out of all her clothes and shoes. Her vocabulary...and personality is growing too. She is a pretty funny little girl. I love hearing her talk and TELL me what she wants now. The challenge is just working on having a little patience (for both of us!).

As I continue to be amazed every day by the accomplishments Ella has made, I have also found myself thinking just as much about what her sister will be like....who she will look like, what her personality will be, how will Ella react?? Will I celebrate the new babies every moment as much as I have all of Ella's "firsts"? Just three months left until the big day! We can't wait....now if we could just agree on a name ;-)

Books For Babies

For the second year in a row, Jason and I have helped a local organization collect books for babies. We learned about Project: Cameron's Story two years ago after a news story I had done. A local mom started the foundation in memory of her son who was born very premature. Cameron spent more than 200 days in the NICU and at times his parents couldn't hold him. They turned to reading as a way to bond. After Cameron passed away, the family wanted a way to help other families in similar situations. Now they collect more than 2400 books every year to donate to our local hospitals. The goal is to make sure that EVERY baby admitted to the Neonatal Intensive Care Unit (NICU) has a brand new book.


Here's a shot of some of the books
we collected at the game.


I felt a bond with this mom as soon as I heard her story and knew instantly that Project: Cameron's Story was something I had to get involved with. Cameron and Ella were in the NICU at the same time. Although we never met during that time, there is connection that every parent that goes through this experience can relate too. It is a scary time and a situation no one ever expects or wants to be in. I know how important reading was for us while Ella was in the NICU. Jason would sit for hours next to Ella's isolate, reading her stories. They still share this special connection!


Jason reading to Ella in the Nicu...June 2009

 Every February, Cameron's story holds a book drive for one week...collecting new children's books at businesses and offices around the area. This year, Union's hockey team was kind enough to help us promote a big book drive at a game. We ran promos on News 10, the team emailed season ticket holders, blasted the event on the radio and hopefully really helped bring a lot of attention to the cause.

Sara Quartiers, the founder of PCS being
interviewed by News 10.

We collected lots of books (more than 2 big boxes). The Quartiers family (founders of Project: Cameron's Story) came out to the game to watch Union beat Princeton. It was a great night. Jason and I are so happy to be able to take part in this year after year and I look forward to a time when Ella is old enough to understand and be more involved herself.

I'll have an update soon on the total numbers for this year's bookraiser!

Time Flies

It is so hard to believe that Ella is almost finished with her early intervention services. She has been receiving services since she was just three months old. This week, we had what is likely the final team meeting. She transitions to the preschool program August 31st...and really that process has already begun.

Our meeting was really good. I would say probably one of the best we've had in terms of progress for Ella. She made huge gains in her motor skills. At our last meeting in August, Ella had literally just started walking. Today she is walking, jumping, and climbing. Jen and Linda have worked so hard, pushing Ella to reach her potential (even under great protest at times!) She reached all of the goals we set for her six months ago. This is the first time in nearly three years that she was able to check everything off the list as accomplishments. Her speech is coming along as well. This is where we are still seeing the greatest delay, but she is slowly making gains and we are confident she'll continue to improve. Michelle is constantly looking for new ways to help Ella communicate and her hard work is paying off. We have been using sign language for quite some time and now we are adding a picture system to our day as well to help Ella pick up more speech. She is a very visual learner and although we have just implemented the pictures, she is already showing us how much it will help her. Ella is also doing great in Toddler group and loving the routine that school gives her. She is a star student!

Getting ready for the pool!

Next up is the move to preschool where she will likely continue to have services. The biggest difference is that her physical therapy, special education and speech services will happen at school rather than in our home. We have a meeting soon with the school district to discuss how often she will have each service and how it all works out. The goal is to have Ella in a position physically, socially and academically to start Kindergarten in a few years at the same level as her peers.

This is a bittersweet time for us. We have some of the best therapists who have devoted so much time to Ella's development and success. They have calmed Jason and me down in times of insecurity and taught us to be better parents and really better people. It will be sad to not see them every week and be able to share every new accomplishment Ella makes. I can honestly say that our precocious two and a half year old would NOT be where she is today without the support of Jen, Linda, Michelle, Jess and Jamie.

I remember that first phone call in August of 2009 from Jamie, our service coordinator, telling us that Ella qualified for an EI evaluation. It was hard to hear, but thankfully I was aware of how beneficial this could be(thanks to Kristin who does this for a living!) and was able to keep an open mind and follow through with service. It is so easy as a parent to be in denial....to think your child doesn't need these services. At times it has been a tough pill to swallow, but the positive aspects of EI are amazing. We started off slowly...with just one visit a week. Now we have a packed schedule that at times seems crazy and exhausting, but I would never trade it. The benefits far out weigh any day that I am tired or frustrated with the lack of extra hours in the day. I will continue to advocate for these services for all babies who qualify. It's a true testament to how a little extra can go a long way!

Sesame Street Fun

All eyes on the show...Sesame Street Live 2012

Ella is feeling much better and it was time to have some fun this past weekend. Erin and Lucy came for a visit and we went to see Sesame Street Live. They got all dressed up in their pretty dresses and hit the theater like the two sassy girls they are!

This was the second time we have taken Ella to a live show. She enjoyed it last year...but LOVED it this year. I don't think she blinked the entire time. She was totally engrossed in the singing and dancing and of course all of her favorite characters. Lucy was pretty happy too, but sitting still is not that fun for Lucy. She would have much rather been up on the stage dancing along side Elmo :-)




Getting ready to dig into her ice cream sundae.

  After the show, we treated the girls to dinner at Friendly's. Not the fanciest of places, but perfect for our two little monkeys. They chowed down on chicken fingers and finished off a really fun day with some ice cream sundaes. We need to fatten Ella up. She lost about four pounds (four more than she could afford to lose) while she was in the hospital. She is literally a rack of bones now, so it was great to see her dig into her sundae and finish every last bite!


 I think Ella smiled almost all day long. She was so happy to be out and about doing something fun, spending time with family, and of course enjoying a sweet treat. It put a smile on my face too and warmed my heart. I have spent so much time worrying about her and keeping such a close eye on her that you forget to enjoy the little moments. Time goes by so quickly. I need to remind myself of that constantly and take that extra moment to enjoy her precious laugh and beaming smile.

mmmm...the cone is the best part!

When It Rains, It Pours....

Ella and Auntie Jess...one 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)!

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!)

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 :-)