It's been a few days since I have written..been a busy few days. We now have a ONE year old toddling around our house..Zackary's birthday was June 30th and we are getting ready for his birthday celebration tomorrow! Bella has been enjoying the festivities and I know she will be all smiles tomorrow with all her family and friends around her. We are so looking forward to being surrounded by those we love and who have been so supportive. It will be a welcome distraction from our tough days and worry.
Now an update on our Angel... Bella had a session with her Early Intervention therapist, Ann. As soon as Ann walked in the door Bella looked at me with apprehension and began to cry. It amazes me how she only met Ann once or twice before but knows that she is not simply a visitor there to hang out but that she is there to make Miss Bella work! I started to worry this would be much like her PT sessions where she screams in protest the whole time. Fortunately Ann had some fun books which caught Bella's attention. She settled down and began to interact nicely with Ann. Ann is working with Bella on communication and spent the session trying to get her to mimic sounds, and physical movements such as patting and even worked on some sign language for "more" "all done" and "thank you". Bella responded well and sounded out "pa" for pat and did the sign for "more".
We will continue to work on those between sessions as it will ease some of our mutual frustration. I am hopeful about these sessions and pray for more ways to learn to help our baby girl.
It's been a tough week for Bella and sleep which comes with Rett Syndrome territory. Each night this week it seems Bella has been incredibly irritable and inconsolable around bedtime. So we go off to bed which seems to make her happy...but very shortly thereafter she is up...first crying, then screaming, then playing. Last night this went on from 7pm to 1:30am. I have tried everything...milk, music, letting her work it out...nothing helps and now I somewhat dread bedtime. I just know how she needs her rest to be strong and I fear she isn't getting enough. She wouldn't even nap today after that late night. I have read many similar stories with other Retts Angels and I am afraid we may be in for this for a while. Something to discuss for sure next doctor visit.
Other than that we are plugging along, taking one day at a time, loving our daughter and son more than life itself and praying.
Hadn't had a chance to check your blog for a couple of delays but thanks for the update! Reading your blog almost makes me think that my sister has a 'breeze' with my oldest nephew..although that is far from the case. Let me know if you/Jeff want to grab a coffee sometime soon. Keep thinking positive and I will keep both of you in my daily thoughts and prayers.
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