Hip Dysplasia

Aggie's pelvic/hip x-ray revealed that she has hip dysplasia.  We will need to see an orthopedist for this.

Rehab Doctor

We saw a Rehab Dr. yesterday. The main purpose was to get idea's of things medically and otherwise that we can do to encourage Aggie to walk. It was her physical therapists' idea.  He suggested serial casting and took an x-ray of her hips (she's at risk for dislocation). We need to research if there is anyone in our area that does serial casting so we don't have to drive to B-ham for it. Any who.... it is usually a little stressful seeing a new Dr. b/c we have to re-hash Aggies medical history, which is fairly extensive, give the list of her existing diagnosis, how we came to them, and the things that she is currently being tested for. But it was actually different yesterday. I was so thankful to have Mike with me, his strong arms wrangling that little girl, holding her for labs and x-ray. I was reminded very much of God's mercy toward Aggie, his kindness in answering our prayers about her. The re-hab Dr. was discussing some treatment options with us and said "usually people with her muscle disorder are on a ventilator or diagnosed with cerebral palsy", so he's not use to trying to help these people walk, they are generally stagnate in development or deteriorating. Praise God for Aggies' health and progress! I honestly spent most of the day so thankful she was alive. And this is just people with her muscle disorder, this does not include the other issues (brian damage/gene mutation......) she is really a little walking (well really crawling) miracle, and I am just so thankful for her little life right now as long as we get to enjoy it, even if that means 5 hour drives to a doctors office, a long wait, a short appointment and lab work, and a 5 hour drive back home with some added screaming for flare. 

Grins

See how she grows....

We've been getting some new faces.......

Some Sad

Still some concern in her brow

Some happy

 She's our little snuggle bug

Hosea

This little man has been cracking us up lately.  Perfect role for the only brother, keeping things light hearted.  People often ask how does he like being the only boy. Shiloh would say "what about daddy, he's a boy".  I would say; as far as I can tell, he loves it!

He's All or Nothing. 

He and Shiloh have opened a store.  They glue beads together and sale them to us for a cent, "so it will be a good deal".  They love to tell us the "store is open for business". 

We had a family night and did a fire and hot dogs and mallows out back, they love this! 

 Hosea's been brushing up on his culinary skills. He loves making scrambled eggs.

When i put Salem on her play mat, he exclaims "yeah I get to snuggle". Here he is snuggling.

He likes to play shoot guns with Aggie. No I do not let him shoot Aggie. He pushes her around on her horse while she says "neigh, neigh, neigh........" then he stops and throws his velcro bullets at her "gently".  I guess it's sort of a cowboy and indian variation? They both really like it.

He ran his eye into the corner of the kitchen chair while walking with a shirt over his head. I asked if he was ok and if he needed anything and he replied "my pirate eye" and ran off to fetch it. 

I love my little dude!

Muscle Biopsy

Aggie had a muscle biopsy today.  They called last Thursday and decided it would be better done sooner rather than later.  We met the surgeon Monday, had surgery this morning.  We won't know the results for several months.  God is good and has provided for us in many little detailed ways.  We are thankful, and a little tired. Makes me long for the rest that will never end in the life to come, where my heart should be longing for.

Aggie-Genetics/School

We've heard back from the genetics Dr. this week. The good news is Mike and I are not carriers, which is fortunate for the other children. The location of aggies gene mutation is so rare that there is only one other person reported with the same mutation in that location, but even then the mutation it's self is different. The Dr. wants to do another muscle biopsy so they can test the effect of the mutation on protein, allowing them to possibly project the effect the mutation will have on Aggie at a cellular level. We have an apt. with the surgeon in March. This news is two fold for me, as it is nice to know what is causing Aggies difficulties, but having to put her through additional testing/trauma makes my heart sink. As she grows older and stronger these things become more difficult, as her understanding is minimal. 

She is loving school. We like it too.  I am told that she is very popular, as teachers pop in to play with her.  The only other little girl in the class has become jealous, I'm told. Aggie has no clue. She has started doing a swim class every friday at school. It is an 8 week program where they do therapy in the pool. A neat opportunity for her. It is a perfect amount of time allowing me to get most, if not all of school done with the other children before she returns home.