Thursday, June 9, 2011


1. We finally got the call letting us know that Elles was approved by our insurance to have the blood test. We hopped in the car that day as soon as Scout was out of school and headed to Primary Children's Medical Center and got the blood drawn. Poor little little. That is a tiny little arm housing a teeny little vein and it was painful and slow drawing one vial. Mommy did not cry though. The test should take 2-3 weeks.

2. We had the appointment with the Neurologist this week. Seemed a bit pointless. He said an MRI would probably be helpful, but not really if she has Angelman's, so we didn't schedule one. He did a pretty comprehensive neurological exam, but didn't share any findings really. He did concur with Dr. Carey, telling us that things look good seizure wise if she hasn't had any yet. He seemed less sure that she had Angelman's then Dr. Carey, but only one of those doctors is one of the world's leading geneticists (as Dr. Filloux referred to him as). He gave us some useful information on the types of seizures we should be looking for, so I can recognize one if I saw it. I have felt reassured that I have definitely not seen anything like he showed us (he mimed them for us), he also witnessed the one behavior that I thought could possibly be a seizure and he said it wasn't (what I am referring to is her tendency to tilt her head back and roll her eyes), which she does over and over sometimes. He says it is just one of her little mannerisms like what she does with her fingers. This was a relief to hear that from someone that really would know. So, all in all, it did seem pretty pointless, but we did learn a few things and we also realized how glad we are that our genetic appointment was moved up. We were supposed to meet with neurology first and the genetic appointment was a few weeks later, but I got a call telling me that they had a space open up a few months early and I nabbed it. If we would have seen the neurologist first, we would be really discouraged right now and have an MRI scheduled that would most likely give us no answers.

3. Scout is falling in love with Primary Children's excellent waiting rooms that take "kid friendly" to new heights.

Rob and I went to the temple for the first time since all the Elle stuff went down. I honestly feel like Elle is my ticket to really getting closer to God. Elle is everything good, calm, and spiritual. To look into that precious face, is to know peace and love and what eternal life is. What an unbelievable blessing it is to have her beautiful spirit dwelling in our home.

5. Elinor has made some pretty amazing break throughs the last few weeks. A) while in 4 point (crawling position) and in front of her PT, we put a bunny cracker by one of her hands and waited. After assessing her options, she clutched the cracker and put it to her mouth. This was major cause she wasn't being touched at all, so she did it without any support. This move is crucial, because it demonstrated that she accomplished "weight shift", that is an important thing for her to learn for many reasons, one being she is an important step closer to crawling. Mommy wonders why it took her so long to figure out that food is the ultimate motivator. B) I have really seen great progress on her rolling. Yes, simple rolling that 3 month olds start doing is a milestone for Elles. She CAN do it, she doesn't want to do it. I have been able to accomplish some good rolling by motivating her with back scratches (if I start scratching her back, she will roll so there is more back exposed for mommy to scratch). Again: know your baby's motivators mom! Sheesh, it's about time you used that noggin. The scratching usually only gets little half rolls, but a couple days ago during tummy time she was PISSED to be on her belly and finally had enough and flipped herself over onto her back quite handily. I rewarded her by letting her stay there (and shouts of jubilation and many kisses).

6.I attended my first support group yesterday for moms with children with special needs. It was good. I think I will like it and I learned some things. One thing I learned is that there is always someone that has it worse then you. In fact, I think I have it pretty darn good.

7. I have started working on making Elle her own blog. I think I will copy and paste all her "Elle on the Move" posts and then update her progress there instead of on the family blog. My blog is getting busier and I figure that there are people out there that may be only interested in Elle progress reports and if she does have Angelmans I think it could attract people only interested in Angelman stuff and they might find my other posts tedious. It just is making more sense, so watch for that in the near future...... Life in a Glass House will still have plenty of Elinor shenanigans and the like of course, so no fear. Sorry if this is inconvenient to anyone.


Cat said...

That's a great idea to set up a blog just for Elinor. You could help a lot of people with your experience, I think.

Long Island Girl said...

Can I just say how impressed I am with you Em! You constantly amaze me. Your attitude, your fortitude, and your spiritual strength are a great example. Thanks for that.


Eliza said...

Just got all caught up on your blog. Wow! That's a lot going on in the past couple of months. You are a good mom- Elinor is lucky to have you.


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