Annabel Is Home

Annabel was able to come home last night after her last dose of vancomycin at 4:00. She's doing well, eating some solids for breakfast and drinking her liquids well. She doesn't seem to be in a lot of pain, we are using tylenol to just take the edge off for her. Mady was quite cute this morning, cheering when I brought Annabel downstairs and Hershey has been quite motherly as she always is when someone has a cut, wanting to "heal" it for her, so we have to watch her - it is quite sweet though! Annabel is limited with physical activity (including therapy) for about a
month but we have a follow-up appointment with her surgeon Dr. Maher on the 29th to evaluate the incisions and discuss the spinal fluid results (I do believe they said they will call if anything grows in the meantime) so I will ask about therapy then. So far no growth from the culture yet, only 12 more days to go until we're in the clear! My ultimate prayer is that the failure was truly mechanical and not due to any bacterial growth. She has not run a temp yesterday or today so far so that is a great sign that she's not developing any infections (staph) with the new shunt system but we technically have 3 months again of the higher risk time period.

Annabel was such a strong fighter thru all of this (I received that comment from many people in the hospital and I told them she always has been), I just feel so bad for all the pain she went thru (headaches, tummy ache, etc.) and especially feel bad that maybe it could have been discovered sooner. I am just thankful that it doesn't appear to have harmed her long-term as far as any further brain damage, thank goodness we caught it when we did! It is almost scary to me how right on my motherly instinct has been, I will not doubt it ever again.

Annabel was supposed to get her monthly synagis shot with her siblings this Monday but because of her immune system already fighting with the new shunt placed, we pushed it out to 2 weeks from her surgery to give her body time to recoup. Thursday we have a follow-up with Dr. Gessner to discuss our continued plan for her since the miralax and zantac were started in the midst of all this (possibly because of it) so hopefully she won't need it anymore, we'll see.

In the midst of things I forgot to update about our first appointment at the aqua therapy facility. It went great and I can't wait to get Annabel started, although it will be delayed a few weeks now. The therapist evaluated and feels strongly that Annabel's legs, arms (besides the affected left arm), and head control are in great shape and that it's actually her trunk that needs strengthening, specifically her obliques. The therapist called her one of her "brick babies". She said that once we get started on working her trunk that we will see improvements quickly and she should be sitting before not too long! It makes complete sense and obviously impacts both her sitting and walking. She also reiterated what we've been hearing that her CP is mild and she should be able to do most things in life. It was a very encouraging appointment! I can't wait to get started in a few weeks, the therapist may even want to do another evaluation given that she probably already was starting to not feel great then and I'm sure was having tummy issues which probably affected what she did/didn't do with her trunk.

Thank you all for your thoughts and prayers over the last few days, hopefully by continuing these we can get thru the next month or so and not need any additional surgeries!