Monday, August 29, 2011

Monkey See, Monkey Do

I just finished filling out a stack of paper work for Ella to start SCHOOL! As of next Thursday, Ella will officially be enrolled in Toddler Group. It's a 2 1/2 hour morning preschool program offered through Early Intervention. The program provides kids an introduction to the school setting, while including services such as physical therapy, occupational therapy, and speech therapy. It also gives children the chance to be in a social setting which is exactly what Ella is lacking. We don't have any family here in New York and most of our friends have older children, so Ella's chance to play with someone her age is limited.
Ella reading to Lucy
I got a preview of how beneficial toddler group is going to be. We were visiting Woburn this past weekend and Ella had lots of time to play with Lucy (my niece) as well as some of her cousins, Sydney and Caylee. It was wonderful to see her so motivated by her peers. Ella could be considered a copy cat and that's just fine with us. She wanted to crawl just like Lucy...if you know Ella, this was huge. She never cared about crawling and still rarely gets down on all fours. She also wanted to use the "big girl" sippy cup just like her cousin Sydney. Sydney was nice enough to even let us borrow the Dora cup for our walk home! If we can just get her talking like her cousin Caylee, we'll be making big progress. Caylee has a very good vocabulary for an almost 2 year old!!!
Hopefully once school starts Ella will be copying more than Tucker!

These small glimpses of Ella's monkey see, monkey do attitude combined with her determination and an incredible group of family and friends is what makes all the difference. She is going to do so well at school. Stay tuned for the first of many "first day of school" pictures :-)

Tuesday, August 23, 2011

The Gift of Gab

Ella's new trick is to use the box of wipes to
climb her way up on to the couch.

It is hard to believe that Ella has already been in the New York State Early Intervention program for two years! We had our IFSP (individualized family service plan) meeting this week. We meet with our team of therapists and our service coordinator every six months. It's a good time for everyone to catch up on Ella and make sure we have a plan. Each therapist provides a written report and we talk about any adjustments to her schedule that we would like to see. I remember being so nervous for our first meeting. I am a lot more comfortable now. There are no surprises for us at these meetings. Jason and I are pretty involved in Ella's EI program. One of us is always home when our therapists are here. We try and ask lots of questions and follow through with what they work on with Ella.

This meeting was especially exciting because of the tremendous progress Ella has made in the last six months. Some of our goals in February were to have Ella moving independently (crawling or walking), feeding herself, pulling up on furniture, exploring her environment. This was the first time we were able to check multiple items off that list as accomplishments. She is still a little behind her peers in motor skills, but she is literally doing something new and getting stronger every day. We are relieved and excited....and now even more focused on her talking. Speech is the area where Ella is still struggling. This is where the biggest delay remains. Ella did not get my genes when it comes to gift of gab! She has recently started using more words and communicating better, but we have a lot of work still to get her caught up. The ear tubes have helped a lot and we are seeing really promising qualitative changes. Hopefully it's just a matter of time before we start to hear more words.
Baby Ella "practicing" her PT in August 2009.

Ella has come such a long way since that first visit for her evaluation in August of 2009. She was so tiny and Jason and I were so clueless. We have always an open mind though and I truly feel that has helped us navigate the world of EI and get the best possible services for Ella. We started off with PT every other week and speech therapy every other has that schedule changed! Ella currently has One hour of land PT, two half hour pool therapy sessions a week, and three speech therapy visits. We are also adding toddler group (a two year old preschool program) in September. It keeps us busy, but the services work and have helped Ella reach her best potential. With any luck I will have a blog post titled "Chatty Cathy" in the near future. :-)

Sunday, August 21, 2011

Good, Good, Good!'s the word of the week at our house! Ella has lots of new words, like "good job" and "good girl". She loves to hear you tell her how good she is doing. She will even remind us nicely if we forget once or twice to tell her.

We also got some very good news from the endocrinologist. The results of the Cortisol (nightmare) test that we had done a few weeks ago came back perfect. Ella's numbers were normal. Dr. Ridick and Dr. Gleason were very happy to see this, but not happier than Jason and me. After a summer of lots of changes/medicines/procedures for Ella, it was wonderful to hear that her cortisol is fine. She will not have to repeat the test any time soon. The plan moving forward now will be to monitor Ella's cortisol levels every three months and this can be done with the blood work that she has done routinely. Yay!
Ella enjoying breakfast track side at Saratoga.
We celebrated the good news with a day at the Saratoga race track. My parents came to visit for the weekend and we decided to spend the day at the track. We have been going to the track just about every summer that Jason and I have lived in New York. We even took Ella when she was just 6 weeks old (looking back, we were nuts!) It was a beautiful morning to sit right at the edge of the track and enjoy breakfast and watching the horses warm up. We walked off breakfast with a trip to downtown Saratoga and a ride on some pretty pony's in the carousel. 
Taking a spin on the carousel
We have all been so busy, and then on vacation, so this was the first time Nan and Pa had the chance to see the progress Ella has made. She was a show-off...strutting her stuff. They were amazed with her new strength and especially her confidence. Our little pnut even brought a little good luck with her this year...both my parents won at the track!

Ella strolling around Saratoga with Pa.
I have so many good feelings...proud to see Ella gaining so much independence, happy to spend time with my parents, and love that they enjoy these special moments with their grand daughter. My mom has always told me to think positive. I guess this weekend is just living proof that once again mom is always right :-)

Tuesday, August 16, 2011

Behind Bars

Ella loves to shake the gate in protest!
We are now living in a "gated community"....nope, we haven't moved to some ritzy suburban subdivision, our townhouse has been transformed into a holding tank of sorts! We have a lot of stairs (too many to count) and it was time to put up the gates to hopefully avoid a major tumble. We have a gate at the top of our stairs from the entrance way, a gate at the bottom of the stairs up to our bedrooms on the second floor...and soon a third gate will be installed at the top of that staircase. Needless to say the gates are an adjustment for everyone. Ella seems to be wondering why she can no longer freely climb the stairs. Tucker gets trapped upstairs, downstairs and in the living room. For Jason and I, it's the mechanics of the gates (they lock shut) that seem to slow us down!

Like every adjustment it will take time to get used to. Looking at the bigger picture though, we really managed to live gate free for longer than we thought. The gates are also another sign of improvement when it comes to Ella's milestones. She is a full fledged walker now and is really enjoying exploring her new territory. So as I stumble down the stairs and fumble with the gate at 3am (to get to work)...I have to remember to thank by blessings for the opportunity to even have to worry about the gates in the first place :-)

Friday, August 12, 2011

Where's Ella?!

Ella acting and looking cool in her shades.
What a busy week it has been for Ella. There is no resting on vacation for this little two year old. We have spent the last week visiting friends and family in Michigan. It's been quite the tour of the great lakes state...first stop was Muskegon to catch up with our good friends the Taylor's and then a stop in Petersburg to visit with Grandma (Jason's mom). It is amazing how many new things Ella is doing and saying. A little change of scenery goes a long way.

I think the biggest difference has certainly been walking...Ella is walking EVERYWHERE now. She had lots of kids to keep up with in Muskegon and she held her own rather well. Jason and I are amazed at how active she has become. You literally can not take your eyes off her for a minute (unless you want to find her climbing her way to the top of the nearest staircase!)
Playing with all her new friends in Muskegon.
The running joke for our time at the Taylor's became "Peek-a-boo, Where is Ella?"....Samantha (the most adorable almost four year old I know) thought this was a fun game to play with Ella and it was quite literal too. She would repeat the game over and over and over, much to Ella's amusement (and our laughter). There were many moments I had to stop and ask "Where is Ella?" We could usually find her right in the mix with the kids, playing with the toys, or exploring a new room in their house.
Ella and Samantha hanging out!

Ella has also developed quite an appetite while on vacation. In fact, Jason's mom wanted to know what we were talking about when we said she eats like a bird. This girl has packed in the food this week all while making her mom and dad look absolutely foolish for ever mentioning that she was not a big eater. You name the food, she eats it. It was a nice break to not constantly be worried about whether or not she had enough to eat. Ella certainly won her spot in the "clean plate club" this week. :-)

Posing with the gorilla statue at the Toledo Zoo
There were lots of other firsts to mention too....first boat ride, first dip in Lake Michigan, and her first trip to the Toledo Zoo. Ella LOVES animals.

She has had a blast playing with the dogs and enjoying the horses at Grandma's house and the zoo trip was the icing on the cake. She was fascinated by the apes and monkey's, giggling at the baby Elephant, and fast asleep by the end of the day.

It's never fun to see vacation come to an end, but it was a really nice week. We hit the road tomorrow night for the long trek back to New York (10-11 hours, yuck)...and then it's back to the grind for all 3 of us on Monday!

Wednesday, August 3, 2011

A Lot To Learn

I am usually a pretty strong person when it comes to Ella's doctor appointments. I have grown a thick skin when it comes to seeing her go through blood draws and uncomfortable tests. It has not always been easy and those first weeks in the NICU were very emotional. I have grown in two years and try very hard to be strong for Ella, but yesterday I cried.

Ella and Jason reading the Poky Puppy while waiting for
her test to be over!
I lost it.

I broke down in tears.

I couldn't handle the nurse moving the IV all around her bruised arm while Ella screamed. She was hungry, tired, and I am sure the needle jabbing her little vein did NOT feel good. She had every reason to cry and that just broke my heart. I am not as tough or as brave as Ella...I never well be!

Tuesday we had the ACTH stimulation test done to check her cortisol levels. It was a test we knew was going to be a tough involved having an IV and multiple blood draws. It was scheduled to take at least two hours and Ella was not allowed any food or drink. This is tough to explain to a two year old who is used to waking up and promptly being served breakfast. Needless to say, it took much longer and the nurse administering the test was CLEARLY not used to dealing with pediatric patients.  I knew as soon as we were taken into the lab that she was uncertain about what needed to be done. There were multiple calls to the Endocrinologist and too many questions to make Jason and I overly comfortable or confident.  As the nurse tried to take the second blood draw (more than 2 hours behind schedule), she did something to the IV to make Ella's vein collapse. No blood would come out and rather than remove the IV and start again, she felt as though she could "save it". Despite my pleas to just call the pediatric stat nurse, she could only respond by asking me to just worry about calming down my daughter. I was furious!  We managed to salvage most of the test (they were able to finally draw one vial, rather than the two the doctor called for). The labs will be sent to California and we will have results in one to two weeks.

I think my tears were a combination of compassion for Pnut and anger for this nurse who was clearly not capable of handling the situation. I also think a person can only handle so much before they reach that emotional cliff. I slipped over the cliff....but today is a new day. I dust myself off and realize that I am stronger than yesterday. 

"Being a mother is learning about strengths you didn't know you had, and dealing with fears you didn't know existed."
  ~Linda Wooten

Monday, August 1, 2011

The List

We have been on a roll, with one thing after another for several months now. We started synthroid, growth hormone, ear tubes, endless doctors's exhausting! Everything we are doing for Pnut is working and all the stress leading up to each test, appointment or procedure pays off ten-fold. However, the other day Jason said to me he feels like we are constantly checking things off "the list" and our list seems never ending. 
Ella checking things off her grocery list!

Once the ear tube surgery was scheduled, the hope and expectation (for me anyway) was that things were finally slowing down. Then we got the call from our endocrinologist just before her surgery. The blood work that Ella had done in early July shows that her cortisol levels are low. Cortisol is commonly known as "the fight or flight" hormone. It helps our bodies fight stress....everything from a common cold to a traumatic injury. Ella's levels came back at 2.5 (normal range is above 4). For this reason, she had to have a hydrocortisone shot prior to surgery. This ensures that her body has enough cortisol. It was a crucial precaution because a person can not live without enough cortisol. Ella's apparent deficiency is due to the hypopituitarism.

A synthetic form of cortisol is available. It comes in a pill form and would go along with the hormone replacement therapy that Ella is already on. The issue with cortisol replacement is that once you start this therapy, it can not be stopped. As soon as you give the body the synthetic version, the body stops producing the hormone all together. We have known since Ella's initial diagnosis that we would constantly be monitoring all of her hormone levels and cortisol has always been on the radar for our doctors, however even Dr. Gleason (pediatric endocrinologist) felt we wouldn't be going down this road just yet. It's not a bad thing, just one of the unknowns we will continuously battle.

On Tuesday morning, we will head to Albany Med (again) for an ACTH stimulation test. It takes about two hours and requires several blood draws. This will help us determine if Ella's cortisol is low or if the first results were a circumstance of when the blood was drawn. Cortisol levels fluctuate throughout the day. We have checked cortisol several times when Ella has had a nasty virus, etc and everything has been fine. Jason and I are hopeful that things will be fine this time as well. The longer we can hold off on cortisol replacement, the better.

We are confident that the doctors will help us make the best decision possible for Ella. We'll check another thing off the list....and stay optimistic that the list takes a break for a while! I hope that Ella has little memory of any of these tests and doctors visits. She is such a happy kid and takes everything so well. We are so lucky and learn new strength from her every day!
Who needs toys when you can have fun with pot holders!