The P.T. evaluation today went well. I really like the therapist we were assigned to. She is around my age with 3 young kids, the youngest one is 6 and a half months old (just about Alexandria's adjusted age). This mom is also nursing so we had lots to talk about right off the bat. She talks in a way that I process information which is a big plus right there. The P.T. worked with Alex very diligently while staying positive and upbeat the whole time. Alex seems to really like her so that's a positive right there. At the end of the evaluation it was decided that Alex needs P.T. right now and we can drop her O.T. visits. We will going for P.T. appointments every Wednesday at 1:00 p.m. Alex does have a very mild case of torticollis and as we all know she has low muscle tone in her upper body. The P.T. showed me a stretch for torticollis to do at home and had me do it before I left. I have to do this stretch with Alex 5 times during every diaper change. Alex hates it and cries the whole time...I have to hold each stretch for 30 seconds. Next week the P.T. will show me another stretch to do at home. So now I am once again on the phone with the pediatrician and CHOP and the insurance company to try and make all the changes go through in time for our next appointment.
Alex has an appointment with the nutritionist at CHOP in Philadelphia on the 6th of May. I have not heard from the Feeding Team yet about an appointment. Like I said, it can take up to 2 weeks after the intake before they contact you to schedule your first appointment with the Feeding Team. We will see who Alex end up seeing - the nutritionist or the Feeding Team. It's all in the Lord's hands...and HE knows best what she needs. Keep on praying!
Alex has been getting some random rashes and hives over the past few weeks. They do not seem to bother her...but the cause is unknown. The pediatrician said it is an allergic reaction to something she touched and good luck trying to figure out what it might have been or is...We are to be very careful about what touches Alexandria's skin - this includes other peoples clothing, couches, perfumes, lotions, etc. I may make Alex an appointment with an allergyst via CHOP. The P.T. I saw today said that two of her kids see an allergyst there because they both broke out in hives when there were small - one of her kids has food allergies and the other is allergic to pennicilin, the baby has been fine so far. She said it takes 3 months or longer to get an initial appointment with this guy so if I call now Alex will be one by the time her first visit rolls around and that is a perfect time for her to see an allergyst. If she does not end up needing to see an allergist that is fine, unless we are in if she does. Better safe then sorry. And with Steve's allergies and my skin sensitivities this little girl may be doomed to have something or other allergy related...
So that's the scoop for now. Alex is doing great! She won't take a nap when we are out because she is too busy taking everything in and then she is exhausted and overtired. I will have to make it a point to be home for Alexandria's nap time (if I can help it) so this little girl can get her rest. Alex has been sleeping through the night for a couple of weeks now - praise the Lord! It's been a long road...She is such a good little happy girl now...A completely different kid then she had been for most of the time we've known her. As she grows and as her body heals she gets more and more settled in. It is so neat to watch her grow! Thank you for being such a vital part of her growth and healing through prayer. I can not belive she is so big already! I sort of feel like I'm losing my little baby as she grows and it makes me a bit sad. I want to take each moment in and treasure it - each moment seems to melt away into the next so quickly...I feel like before I know it Alex will be packing her bags for collage...Anyway, thank you again for your prayers and care.
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