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Thursday, April 1, 2010
Oh if only this picture could talk! I think what this picture would say is " Yes, I have Trisomy 18. But I am not blind, deaf and severely mentally retarded!" Yes, I do have some developmental delays and I am non-verbal. At this point I don't walk, YET! At one point I didn't sit up either, but now I do. And recently I have begun going to Kindergarten for 30 minutes for storytime. I can sit on my own and listen and watch as the teacher read my class a story! My mommy came today to take pictures so everyone out there could see my new accomplishment. Can I just say that my mommy is so incredibly proud of me!!!!
Ok well that is Annabel's take on this story! Or maybe that is what her mommy would like so many to know about Trisomy 18. She really is so normal basically. She loves being read to and she loves other children. She can sit and mind the rules also. I am so blessed that in our last ARD that they listened when I asked could she spend sometime in a regular class with other children. They did the necessary paperwork and than began this right away. One thing is for certain is that I do not want Annabel moved out of her SPH class at anytime. We love her teachers and her class, it is just fun to see her experience a different environment.
Thank you all for your continue prayers. I have had some good suggestions concerning Annabel and her UTI's. Annabel has already done the prophalactic (sp) dose (smaller doses taken each day continously) of antibiotic twice now for long periods of time. She has had infections basically since she was 4 months old. She has become resistant to both of these antibiotics over period of time. She can now urinate on her own but they are wanting us still to cath her. These bacterias grow in all of our bodies (gut) but in Annabel's everything seems to overgrow. Antibiotics are a concern to us for all the normal reasons but especially because of her three bouts with c-diff.
My mind has gone blank of what the others were but we have done everything so far except a surgical procedure, one call vesicostomy and the other called mitranoff(sp). We are going back to Houston on April 13th to discuss what will need to be done further.
Our friend Mallorie still continues to struggle. She is more stable at this point but not really responding like need be. Their family for many reasons needs our prayers and support. If you are new here is her link: www.malmalrose.blogspot.com
Sunday, March 28, 2010
Well I don't have a lot to say. Annabel did well through her birthday week. This past week we noticed the gagging/wretching increasing. It was good that she was on spring break so we could monitor and just let her rest. But Wednesday night we knew she was becoming infected again with another UTI. She has been off the antibiotic for 4 days. I am beyond frustrated. Whereas before she could urinate and was having such high residuals. Now she urinates frequently and her residuals are almost nothing most of the time. Sometimes I really wonder is she ever really clear of these infections or does the antibiotic work to reduce the bacteria then when she is off it is right back again. But her gagging has become almost constant and makes it very hard for her to get through the day comfortably. So instead of gripping/moaning and not just being grateful I thought I would just post some pictures.
I have mentioned a sweet, precious little girl named Mallorie Rose. She and her family are in desperate need of our prayers. Mallorie has been struggling for a couple months in and out of the hospital and things are not getting better at all. They are having to endure some serious conversations that they don't want to be having. Please do visit her link and let them know they are in your prayers. malmalrose.blogspot.com They are at the children's hospital and in PICU. Her biggest issue right now are seizures and she is aspirating from the reflux. They can't seem to get it under control. Please pray for the doctors caring for Mallorie will treat Mallorie for the sweet little girl she is and not for labels that could be associated with her. Also, Connie, her mother was diagnosed with cancer right before Mallorie became so sick. Pray that Connie will be healed and that she will continue to find the strength to care and speak on Mallorie's behalf.