Never a Dull Moment

~Update Time~

Today is Isabell's 3rd week of 1st Grade! She is doing very great, and is just the best little student. As many of you Leon Family Fans know- Isabell has overall developmental delays, has vision loss, and mild/moderate hearing loss. She wears glasses to treat her slight near-sightedness and we patch her right eye daily for 1-2 hours. Her left eye is weak and out of focus- we place the patch over her strong eye to force her brain to use her weak left eye to strengthen it. So far, Isabell's weakened, out of focus left eye has gotten a little stronger thanks to the patch. (We do the patching at home, it is easiest that way) At school, Isabell is too delayed for mainstream 1st grade, and is in a specialized program called the PALS Program. Isabell is in the Kindergarten-1st grade PALS Class.

A little about Pals:
PALS Program: Pupils with Alternative Learning Styles"The PALS Program is designed for students who function considerably below their peers in intellectual ability and adaptive behaviors that adversely affects a child’s performance in a regular classroom setting. Instruction is significantly modified and based on the needs identified in the student’s IEP. The purpose of the program is to provide appropriate instruction to enable students to function as independently as possible throughout their school years and transition to adult life."

I got this definition from http://www.tempeschools.org/Parents.cfm?subpage=134

This school year has been great in my perspective thus far- 2 weeks in, starting our 3rd week. Isabell has a teacher this year who I have connected with and I like. She did tell me that Isabell was the easiest kiddo in her class! (These kiddos all have special needs, and are a HaNdFuLl!!!) Made me so proud of my sweet girl.


Now William. The Wild Man. He is doing so great, and I am so pleased with how well he is doing. We have lots going on with our Wild Man- but nothing too crazy. Last May William got sick and was admitted to PCH for 18 days. During that particular hospitalization, we found that William's body was having trouble with stress. His adrenal glands were suppressed and not responding to stress. The cause of this (For William) was the pro-longed use of Prednisone which is an oral lung steroid. William has had alot of trouble with respiratory distress and in early 2011 we were giving William multiple Lung Steroid Boosts which eventually suppressed his adrenals. In order to help William's body respond to stress, he was started on a couple of different steroids. Hydrocortisone, and Fludrocortisone. In the event that the adrenal glands are suppressed from prolonged usage of Prednisone, it is possible that once the adrenals have in a sense "rested" that the doses of Hydrocortisone and Fludrocortisone can be weened. In November 2011, we weened off of the Fludrocortisone, and had labs drawn to check electrolytes. Labs were normal. So William has remained on his twice daily regulated low dose of hydrocortisone. SInce he has been doing so great- we have been seeing Endocrinology frequently so our specialist can help us ween off the Hydrocortisone. On 7-26 we started weening the HC. On 8-2 we seen Endocrinology. On 8-16 we had labs drawn to check electrolytes. Labs were Normal! So we have continued to ween more and more of of the HC and tomorrow will be William's last dose. We will have labs drawn again next week and if all is well we are going to schedule a special procedure. This procedure is called a Stress Test on the Adrenals. This will determine if William's adrenals are truly suppressed.

We had a follow up with GI last week, and out Prince harming has lost weight. Not a ton, and he has grown a bit. So we increased the volume of formula he gets per day to add some more meat to his little bones!

Then today we seen an Audiologist for William for the first time. He failed his newborn BAER back in December 2009 at PCH NICU. After all of the health issues William has had, following up with audiology was at the bottom of our priority list- knowing that William would need to be sedated for a specialized hearing test. It has been too big of a risk in the past to sedate William just for a specialized hearing test. So again, since William is doing so well- I thought this would be a good time to connect with audiology. Today was that day, and our audiologist did a specialized mechanical hearing evaluation on William. Fail. He Failed. It appears that there is something blocking the eardrum, possibly fluid making the test inconclusive. Audiology recommends that we now go see our ENT specialist where ENT further investigates to determine if there is fluid on the eardrum. If there is fluid on William's eardrum, the next step from there is to get ear tubes placed and have the specialized hearing test done while he is sedated to determine if there is any hearing loss. If there is hearing loss determined, William would be a candidate for hearing aids or even a cochlear implant depending on which type of hearing loss he may have. Being that sister has Mild/Moderate hearing loss, I am hoping that William will be in that same range. I feel bummed that he isn't hearing properly, and probably never has heard properly. However, I am not surprised that he did not pass his hearing eval.

We are missing daddy, and counting down the days 'til he comes home. 11 more sleeps! He will be home for Labor Day weekend. Richie say's it's like being on vacation when he comes home- hanging with the kids in the backyard, swimming, grilling and having fun times. That's why we love it when he comes home.