Tuesday - Much to Do!

Gracie had a horrendously restless night where she never stopped tossing and turning, until 3:30 a.m. that is, when she totally woke up and try as she might, couldn't fall back to sleep. It took her an hour of walking, snuggling, getting a drink of water, etc., until she fell back asleep. Then when it was time to wake her up, she was so peaceful and didn't want to get up.

We had an appointment at the clinic bright and early this morning. This was to meet with an allergist regarding Gracie's allergy/intollerance to milk. We know that milk and milk products cause Gracie much misery if consumed, but we wanted to have her tested to see if it is a true allergy and to see how careful we need to be regarding milk products. Since she can't tell us when she is not feeling well, we rely on signs, grumpiness, etc. We just felt it would be beneficial to all of us to know. Jeff and I were both very disappointed with our appointment. First we saw the resident who didn't connect with Gracie at all, didn't even acknowledge her until it was time to do an exam. No surprise that she wanted NOTHING to do with him. Then he came back in the room and told us he forgot to look in her mouth and nose. Next we met with the staff doctor who gave us a lot of allergy jargen (good thing I've done a bit of research on this myself or I wouldn't have had a clue what she was talking about). Without any testing she informed us it wasn't an allergy that it was an intollerance specific to her. I would have felt much better had we been given scientific proof of this...such as an allergy test.

So when I asked about how careful we needed to be, she just said we can try to introduce things over time and see what her reaction is. I reiterated that she can't always tell us when she doesn't feel well and she told us we could read the signs. At this point, Gracie bumped her head on the desk and went to Jeff for some comfort. The physician indicated that we could tell much as we could tell she wanted comfort for her bumped head. It's not that simple and most of the time Gracie doesn't want comfort when she bumps her head...I think she wanted comfort because she didn't want to be there. I also asked about behavioral issues that accompany the ingestion of milk products and she said there was no scientific info to back that up, but many parents of autistic children (she quite abruptly told us she had never heard of Sotos Syndrome and made it seem like a bother to have even brought it up) indicate behavioral differences with gluten and dairy elimination from the diet. She told us to do what we felt was best.

I have so many good things to say about the medical care we've experienced and the medical professionals that give such great care to Gracie. Jeff and I were both thoroughly unimpressed with our experience today and felt it was a great waste of time.

After this appointment, we had an appointment to get Gracie's wheelchair adjusted...she's grown! Gracie's physical therapist saw her running and told us how impressed she was with how good she was doing. The wheelchair people were awesome as always too. They commented on how much Gracie's face had thinned out since they last saw her and how awesome she is doing.

Then off to wait while I got my license renewed. We dropped daddy off to go golfing and we headed to school to meet with the school nurses. They were AWESOME. I really feel so confident that they have Gracie's best interests at heart and are there to make sure she is safe and well cared for.

Then home to have some lunch and a nap. Gracie took a 2-1/2 hour nap. She awoke in a great mood and was a happy girl all night. After supper we took a walk to the school playground and played for awhile before coming back home, reading books, and heading to bed.

Jeff and I were sharing a giggle tonight. Today when Gracie and I were out and about on our own, I was asked if she was adopted. This never happens when all three of us are together, but when it is just Gracie and I, this question comes up occasionally and my first thought is why would they even think this. It takes me a while to come back to the realization that our coloring is very different. I forget that my little girl looks like her daddy and nothing like me. I'm totally fine with that as she takes after her mom in loving all things "girly"!!!! :) We love ruffles and lace.

Love,
Lisa, Jeff, and Gracie