Thursday, October 27, 2011

Crazy Busy!

I think this is the longest I have gone with a gap in my blogging. We have been crazy busy! The days are just flying by. It's hard to believe that we are nearing the end of October. In just the past week alone, we've had a trip to the pediatrician, a visit to the ER, meet the teacher night, and a check-up with the developmental pediatrician!

Ella is doing great and proved once again that she is amazing. The developmental pediatrician sees her every six months. He was very impressed with how much strength she has gained and how much more active she is. The last time Dr. Malone saw Ella was February. She wasn't walking or crawling then. She had really just gotten used to the Synthroid (thyroid meds) and hadn't even started the growth hormone. Dr. Malone was the one who really urged us to consider growth hormone. He has seen tremendous results and really felt this would help in Ella's situation. I am soooo glad we took his advice.

Dr. Malone did suggest that we increase Ella's time at school. He thinks she would really benefit from a consistent schedule. We decided to add another day of Toddler group. Ella will love this. At meet the teacher night, she was so excited to show me all the fun things in her classroom. Her teachers were great. They say Ella is a rule follower and doesn't really like when the other kids step out of line! She is also warming up to the other kids a little more too. They say she doesn't like when others invade her space! This will be great practice for pre-school next year. We already registered her in the Rensselaer School District. Time is flying!
Happy Girl! This is the day we registered with
the Rensselaer School District.
Now you're probably wondering about our trip to the ER! Last week, I noticed a rash on Ella and was immediately concerned about MRSA. She contracted MRSA (a staph infection that is resistant to many medications) when she was just a few days old in the NICU. At the time, my little newborn looked like she had chicken pocks all over her body. She was treated with IV antibiotics and the rash eventually cleared up. We had another bout with the "super bug" (as it is commonly known) when she was six months old and we discovered her belly button wasn't healing because of another MRSA infection. This is something she will likely always test positive for and it's hard to understand how she even gets the infection in the first place. The good news is we have found a medication that works to clear up the infection. This time, she had a pretty big sore and the pediatrician wasted no time prescribing the strong meds to clear it up quickly. For some reason, the sore got much worse and by Saturday morning it was almost the size of a nickel and very clearly infected. I took her to the ER, where they drained it. It was a painful procedure since they only used a little numbing cream. Ella was great through the entire thing. A few M+M's right after they were done also seemed to help wash away her tears. Here we are almost a week later and the MRSA seems to be just about gone. Her cut where the soar was is healing nicely. The whole event was much harder on me than Ella I think. She bounced back immediately!

We are getting ready for Halloween now. Ella LOVES her costume! She was so excited to try it on. We probably won't do much trick-or-treating on Monday, but she will get to wear her costume to the big Halloween parade in Woburn. We're going once again this year with many of our cousins. I can't wait to see the kiddos all dressed up!

Saturday, October 15, 2011

Go Union!

Another hockey season is upon us. This is Ella's "3rd" season and last night was Union's home opener (Jason is the assistant coach). She has a brand new Union jersey and we painted U's on her cheeks to celebrate the night. I may be a little biased, but she was the cutest little cheerleader at the rink.
Pre-game....all smiles in Daddy's office.

 You may recall that I have written in the past about Ella's love-hate relationship with hockey games...more specifically the national anthem. She has a history of crying, freaking out actually as soon as the anthem starts. I went into Friday's game with a new attitude....renewed optimism that this season will be different. Ella is an independent toddler. She's walking and starting to talk. She is ready to take on the games!
Another hockey season, same result: TEARS!

HA HA HA...I may have over-estimated things a bit. The meltdown started with the introductions, reached a fever pitch by the national anthem, and by the time the first puck dropped, the U's on her cheeks were partly washed away by tears. The crying (freaking out) lasted pretty much the entire first period. We regrouped in the coach's office and I thought we could redeem ourselves for the second period.....NOPE! More tears, and complete misery ensued. We didn't even make it ten minutes into the second period when I raised the white flag. Less than halfway through game 1 and we were done!

There's another game tonight. Call me crazy, but we are going to try again. Since hockey games will likely be a part of Ella's life for a very long time, I have to TRY to at least get her to cope. Wish me luck!

Tuesday, October 11, 2011

Stand Up TALL!

Look Mom, I can stand up!
Sometimes it seems like Ella is under a microscope because of all the therapy and doctors visits. So when she makes strides, it's always a celebration. Tonight we are celebrating! Ella can now get herself up to standing without having to pull up on something. It seems like such a natural thing that most kids manage to accomplish with little fanfare. However, for us, this is a goal we have had for a while. In true Ella fashion, she decided tonight was the night and she stood up and walked away like she has been doing it for years. Although I do think she may have even been just a little impressed with herself, since she practiced her new skill in front of the mirror for quite some time.

I love the excitement that I feel EVERY time Ella surprises us. It's almost like she knows when we need a little pick-me-up. While we are by no means sad or upset, there is always a worry. This morning it was the phone call telling us last week's blood work shows her growth factor is low again. Her levels dropped to 36 (normal is over 100). It's an easy fix. We just have to increase her growth hormone dose. In fact, Dr. Gleason says this just shows she is growing quickly and her body needs more of the medicine to continue her great progress. This is something we'll have to deal with and monitor for many years. The hope is that as Ella gets older, she'll be able to recognize when she's not feeling 100% and we can make adjustments accordingly.

So tonight we will boost her shot up a bit...and who knows, standing up on her own today....running tomorrow?!

Thursday, October 6, 2011

Giddie Up!

Today was Ella's fall carnival at school. It has been postponed twice because of rain, so everyone at Unity Sunshine was very happy the sun was shining today. The annual event is so much fun for the kids. They have face painting, a hay maze, bounce houses, a petting zoo and pony rides. I knew Ella would enjoy the day, but I never expected she would be as excited as she really was. She LOVED the goats at the petting zoo. I think she would have stayed there and pet the babies and fed them grass all day. In fact, when I arrived to pick Ella up her teachers couldn't wait for me to see her with her new "friends". They said today was one of Ella's best days and the animals seemed to bring out a lot of personality (and new conversation)!
Ella feeding the goats!
The pony rides were also a big hit. She took two turns around when I was there and kept asking for "more, more". I was amazed at how comfortable she was on Jellybean the horse. She held on to the saddle and rode around with so much confidence....and kept the pony working, kicking her legs when Jellybean slowed down.
A very confident Ella taking a ride with Jellybean.

This was such a great experience for Ella, my little animal lover. Now if we can just keep her from saddling up on Tucker, We'll be all set!

Tuesday, October 4, 2011

And The Results Are.....

Six months....5.7 lbs....4 inches....these are Ella's stats from her Endocrinology visit today!

Weighing in October 4, 2011...22.7 lbs
Ella now tips the scales at 22.7 lbs and stands 30.5 inches tall. AMAZING! Today's visit went very well. Ella was happy to show off how much she has grown and developed. Since her last check up in July, Ella has gained 1.7 lbs and grown 1.5 inches. Her growth is still going very well and the growth hormone therapy is working. Dr. Gleason admitted she would have liked to have seen a little more of a weight gain with this visit, but attributes this to all of the activity and walking, etc that Ella is doing now. She's not too concerned about our little skinny minnie. Dr. Gleason did however change her dose a little. She bumped up the shots to keep up with Ella's growth. We also had routine blood work done to check her other hormone levels. Her thyroid medication may actually have to be adjusted as well. Of course, Ella was a trooper in the blood lab. We should have the results back in about a week.
30.5 inches!
Thank you to everyone who wished us well with today's visit. I can't say enough how much the incredible love and support from family and friends means to all of us!