Good, Good, Good!

Good...it'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 :-)



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 one....it 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

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 visits...it'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!