We have done a pretty good job of carrying on with normal life while also knowing that the unknown is still looming near us. I finally talked with our pedi. on Monday morning who by today {Wed.} still hasn’t heard back from our neurologist to consult and then explain things to us. Needless to say, we have the gears in motion to see a different neurologist. Turns out our pedi. found an old friend she did residency with who is on the neurology team, and has offered to see us. We are so thankful for this news and are now waiting for her call.
I did get the ball rolling on a full developmental assessment as we now feel she may have some speech delays too, as well as her physical delays. We are waiting 4-6 days for the coordinator to call us to schedule the evaluation.
In the meantime Ladybug will begin physical therapy, I will call tomorrow to set that up at our children’s hospital. We are excited about this not only for the therapy, but also so someone else, who is trained, will see her on a regular basis and be able to offer opinions also.
We will get the labs done on Monday, and also schedule her abdominal ultrasound for next week. We are holding off on the ENT and Ophthalmology appts. until we consult with the new neurologist.
We are anxious to get copies of her lab work and her MRI report so we can study the results ourselves. Both my husband and I are feeling very proactive about this and want to understand every detail about the situation that we are able to.
We have spoken a lot about this together and once again it seems a medical situation is drawing us closer together. Back when he had cancer, we were united in a way I could never describe to anyone else. The same thing is happening now. I am SO thankful for our unity in things like this, as I am very aware that medical situations often drive a wedge into marriages. I just pray that the unity grows.
Ladybug continues to be a joy and has even taken a few random steps this week. She did this right before her MRI also, but within a few steps she goes right back to refusing to even try, drawing her legs up under her and screaming. Even when she does take steps, they are so unbalanced and off.
Her development in other areas continues to grow by leaps and bounds. She continues to amaze us with her sign language {we own and watch 1, 2, and 3}, and has a wide “vocabulary” when asking her to point to certain things. She just can’t actual say any of it! It makes us very happy to know how much she actually understands.
Speaking of her development, I am SO thankful for this blog and the weekly “What I Love About You” posts I did. I was able to go back through and document almost all of her major milestones because of those posts. I now have my list all ready when we meet with the next doctor, and anyone else.
One developmental milestone she has certainly hit, and hit it awhile ago ~ the lovely temper tantrum…
The girl can definitely scream! She’s even cute when she does that. I think she was mad that I was taking her picture and not picking her up ;-).
No comments:
Post a Comment