Neurology

Our Appointment for Monday was cancelled, the Dr. was needed in the hospital. It is re-scheduled for Friday.

What's in a name?

Yesterday the endocrinologist told us that are sweet little girl’s MRI on her brain came back abnormal, though that is all she said and would not disclose any further info. Appollo called the neurologist and despite the nurse’s determination to not reveal the results, Appollo was able to pry out the gist of the results. Basically what we know is that our girl had a brain hemorrhage during or shortly after birth (not uncommon for premature or small babies). This led to a condition known as Periventricular leukomalacia (aka... PVL if you can’t pronounce the long medical words). From all that we read she has a decent chance of developing cerebral palsy or epilepsy. We of course wept together at this news, but it was not what you might think. There was a touch of remorse, but it was not all or even mainly remorse. You see, we have a hunch that Aggie is going to teach us more about life than we are going to teach her. Appollo told me a story about a young lady she saw at the hospital after Aggie had failed another hearing test. This young lady, probably in her 20's, appeared to have a disability and was wearing a hearing aid. She was also a volunteer at the hospital and had a cheerful pleasant spirit. Appollo had the thought "Is this what Aggie is going to be like when she gets older?" It wasn't a disappointing thought to her. The Bible says “God chose what is foolish in the world to shame the wise; God chose what is weak in the world to shame the strong”. We live in a culture that values the powerful, intellectual, beautiful, and popular. We idolize celebrities and athletes. In fact, I read that 30 years ago a doctor would recommend a child with cerebral palsy be put in an asylum and forgotten. But who reflects more of our Father’s glory... the rich athlete or the 20-year-old girl whose life has been full of trials who joyfully serves in a hospital? I’m not trying to spiritualize disabilities as if they are sanctifying in and of themselves. They are not. Everyone needs Christ. We’ve already started to see some of Aggie’s feistiness to assure us of her need of a Savior. But there does seem to be a naivety and childlikeness in some of the folks I’ve met with disabilities. And I think God can use them to shame the rest of us “normal” people. Time will tell if and how much Aggie is disabled. But our hope and prayer, whether her body and mind is strong or weak in the world’s eyes, is that she would glorify God. What’s in a name? I’m not sure but I think it’s fitting that Aggie means “kind, good, pure, and chaste”. May God make her a reflection of those attributes!

Developmental Evaluation

Aggie was referred to the "First Steps" program, which is a program funded by grants that helps families with "special needs" adjust to life with a special needs family member and comes along side with all sorts of resources. one example. So Aggie had her "Evaluation" with them today. It went well, I wasn't sure what to expect. There was a Dr. of psychology, a physical therapist and 2 case workers. I forget the name of the test they filled out for her, but the Dr. asked a series of questions, the physical therapist did a little evaluation and the other two were taking notes. After about an hour, they formulated their answer. There were 6 categories, I can't remember them all..... gross motor skills, fine motor skills, communication???? Any way, Aggie's lowest score was in communication, not to shocking given the hearing loss. All her scores were high enough that if she did not already have the diagnosis of "hearing loss" the she would not qualify for the program. This was great news! I'm not certain of all the things they are going to be able to do for us to help Aggie. Things that were generally discussed were, having physical therapy evaluations closer to home, assistance getting good hearing aids, though I think the Audiologist and our insurance will be key players in that, these people coordinate with all of Aggies Dr's to make sure she is getting a high level of care, and nothing is being overlooked, some extra teaching on hearing loss and what life-style changes need to be made to accommodate to that. That's all I can think of right now, it was a lot of information, all good. I have a 3 ring binder full of stuff that they gave me to check out, so i'll need to do some reading soon. Now I need to go get some chores done before ballet.

Happy Valentines!

I have really been trying to make Valentines Day a day that I focus more on loving Mike and the kids in an exceptional way, than I do on receiving love. Sadly this has only been true for a few years, I use to be more concerned with how well Mike could love me, so sad! Praise the Lord for sanctification! Anyway, it has been so fun for me to be creative in this way. One year I did something really corny and awoke early b/c Mike had to work, and served heart shape pancakes, and bought heart shape mugs, and a few other cheap items and romanced my man for breakfast. Since Aggie had her MRI this morning, I needed to think of something new and different. Since I recently read some chapters in "Treasuring God in our Traditions" by Noel Piper, I read about a good idea for Christmas, but I was a bit late for that, so I decided to implement it for Valentines Day. I was especially urged to go forward with it when my good friend CS, was doing the same good thing only with no holiday attached. Which I think we will do also. So for Valentines Day the Kids and I memorized Psalm 23 and they preformed it for Mike, there were other sweet things like a card and candy, but I think this was the best part! Never mind Hosea's performance skills, he gets it from His mom.

This was also a humbling experience, as I have never been good at memorizing things, it's right up there with my spelling and gammer skills. My sweet Shiloh had it memorized before I did, and had to help me at times when we would be practicing with out our notes, usually in the van. I hope to have this experience again in the very near future, it's sooo good for us. What scripture to do next? Hummm???

MRI

Aggie survived her second round of sedation. The short version is this; I don't know the results.

We have to wait for a radiologist to read the MRI and send the report to Aggies Neurologist, the gentleman that ordered the test. We will meet with him next Monday to know the results of the MRI and several Labs he had ordered, that were drawn while she was sedated last time.

The Line Up

Monday 14th-MRI of brain (more sedation) Happy Valentines!

Tuesday 15th-Developmental Evaluation

Wednesday 16th-Endocrinology and Audiology

Thursday 17th- Termite Man, O wait I'm off topic. :)

Monday 21st- Neurology

Tuesday 22nd- Well Check, these seem so silly at this point, but I'll comply.

Who Knew?

A few of our articles of clothing or blankets have fallen victim to the washed and dried sticker adhesive. Our kids are the perfect age for this sort of thing. I'm always so bummed b/c I've never been able to get it off. I usually end up throwing the article away, as it seems to be mocking me every-time I look upon it. But Last week, we took one of Aggies softest/nicest blankets to the hearing test, for a variety reasons, all of which were sleep related. Anyway, the blanket fell victim to a hospital sticker that I didn't realized until I was folding and putting it away. After a google search and many good thoughts, this is what worked. It is a pretty fuzzy blanket, one of the softest ( just so the know the material i was working with). Hears what I did: 1. warmed the sticker with a paper towel over it, pressed it with a warm iron. I had to do it several times b/c once the adhesive would cool, it got hard again. 2. scraped the warm adhesive off with my finger nails, I suppose a knife probably would have worked. 3. Once it appeared it was all gone, and I just felt a little bit of residue, I sprayed it with "goo-gone" and used a tooth brush to brush out the rest of the ick. I just got it out of the dryer, from the "re-wash" and I can't even tell what corner the sticker was on! I'm thrilled! Up until now I didn't think there was hope for victims of the washed and dried sticker.