Thursday, April 22, 2010

Pre-K Easter Party, April 1

I got to host Alex's Pre-K Easter party this year! Alex's class is truly a special group of amazingly gifted kids. They are all very respectful and kind and play well together. I was so excited to host the party! I was the photographer too, so not many pictures-- we were too busy crafting and playing. I felt honored to be a part of the Easter experience. 5 year olds are really able to grasp the sacrifice and miracle of the resurrection. As Alex would say, "He is noooot here. He is not here. He is risen indeed!"

Alex with her boyfriend, Mau
Jackson and Jia
Ben and Alex (so cute!)
My girl is working away on her crafts
Olivia hiding behind her accomplishments
Jackson is so proud!
Alex loved the cross project
The craft
Alex made 6 crosses! She loved it.
We had such a great day. Alex loved having mommy at class without Carson...and I had fun being there!

Wednesday, April 21, 2010

Disney on Ice

Disney on Ice = heaven on Earth for Alex Darby.
For her birthday, we surprised her with tickets. She still thinks it was Disney world :)
Alex dressed up as Snow White for the big event and was just the cutest ever. She was so happy and precious and animated (shocking, I know) through the show. She got up and sang the songs and it was a perfect experience for our family. The Worley family was there as well and we were sitting close, so Kaitlyn & Alex got to share some of the fun together. Here are pics:

Alex shows off her freshly painted nails. She was decked.
How cute is this? They were both Snow White!

Beautiful girls

Alex with Mommy

Alex with Daddy

Belle & The Beast

Trey had his lap full of cuteness

Alex dancing to "Under the Sea"

She is hysterical!

It's safe to say she had a blast! What a fun day for our fam.


Awesome, awesome news!
I called United Healthcare and spoke to them about the HLA DQ 2 testing (Celiac genetic testing)....the testing that costs $750.

Or not!

100% covered. Really. Thank you, God!
We are set up for testing at 10:00 on Monday. Boo for blood work but praise God for the opportunity. I have no doubt that I just got a hug from the big man upstairs.

Have a blessed day!

Tuesday, April 20, 2010

Carson update

We've had two big meetings for Carson this week (whew, and it's only Tuesday).
1. ECI came for the formal evaluation. There were two therapists: a speech therapist and a developmental therapist. Based on the evaluation (3.5 hours!) they've decided that Carson will receive developmental therapy once a week and speech therapy twice a month. Additionally, they have requested for an occupational therapist to come and do an evaluation because they believe he has Sensory Integration Disorder (Alex had this as well). As a mom, I have very mixed feelings. I am so incredibly thankful and blessed to have an agency that is willing to come and help us! They are coming to our home (so I don't have to expose Carson in childcare environments) and for the first six months, we will not pay for anything. WOW! The hard part for me was answering 350 questions about my son, and not liking my answers. Ultimately, the fact that he is receiving so much help shows just how much help he needs. Of course, that is a hard pill to swallow. It's scary to hear "delays and disorders"...but again, I am just grateful for the help. Bring it on!

2. Carson went back to the Gonino clinic today to review the test results from four weeks ago. An exciting report: he is absorbing almost all of the essential vitamins needed for proper development! The first time we tested him (prior to the diet change and adding the supplements), he was not absorbing ANY vitamins at all. This time his scores were outstanding. There were only two vitamin deficiencies and we are able to add those to our regime (after giving eight rounds of meds in the morning...what is two more, really?!) So that is good news!
The frustrating news....his IgE tests results left us with more questions and no answers. Basically, we learned that Carson doesn't have TRUE food allergies (he reacts poorly to so many foods b/c he has leaky gut-- which is a food intolerance) but his overall allergy score was "reactive." So the doctor said we know he is allergic to something, but just don't know what that is or why he is yet. So that means more testing. AHHH! They want to do a full environmental blood test on him next. That's fine, I just wanted an answer today. Grr.
He also wants to run a blood test to see if he has the gene that is linked to Celiac disease. It is $750 and not covered by insurance! I really want to have this test done because it would tell us a lot for his future....if he does have the gene, we know that we can never expose him to gluten. We aren't doing that now, and will continue to keep him off gluten. But, we are healing his gut, and the hope is that he will "outgrow" the food intolerance. If he has Celiac and it goes undiagnosed, it will undo all of the healing we are working so hard to achieve. He also said it is highly genetic and we could assume Alex has it too and we would know to eliminate gluten for all of us. Easier said than done :)
Just say a prayer that we are able to have this test conducted at some point. It would give me peace to know either way.

He said Carson's pancreas and A1C levels (indicators of diabetes) look great. Yeah! So not a whole lot is changing. This is the current plan:
1. Kill the fungus and mold (check)
2. Cleanse (we are starting him on a vitamin C cleanse)
3. Starve the bacteria (we've done this by cleaning out his diet entirely)
4. Recede (using probiotics)
5. Restore (using digestive enzymes to heal the gut)

We are on track to healing our little's just going to take longer and more blood tests than I had hoped. But again, my PLAN has nothing to do with God's big picture. I do hope and believe that between the therapy sessions and diet change and supplements, we will have a "healthy and normal" child....someday!
Thank you to all who are reading this, praying for us and care so much about our family. I love you all!