Well, I decided I might as well start this report now since Sarah got admitted this afternoon and I am doing nothing but waiting for her MRI tonight! She is sleeping right now, so I have time to at least get started!
Not sure where to begin...Sarah is going to be 8 in May. She has quite a few different medical diagnoses, so I will list the big ones. She has 1p36 chromosome deletion syndrome, epilepsy, eosinphilic esophagitis, scoliosis, syringomyelia, hypothyroidism...and the list goes on! Sarah has a twin sister, Sophie, who is an awesome sister and helps take such great care of Sarah! Sarah has had numerous surgeries and way too many hospital stays. We are currently inpatient as she has had an increase in seizure activity and some other little weird things going on. She just had an eeg done and we are waiting for an MRI of her brain a little later tonight.
During one of our hospital stays, one of Sarah's therapists talked to me about MAW. I had never thought much about it and really didn't think Sarah would qualify. She pulled up the website on her laptop and told me to fill out the online portion while she was working with Sarah just to see what would happen! That was in November, and we found out about three weeks ago that she was approved for a wish. I filled out that paperwork and returned it, and we got a phone call this week from our wish granter! After reading some reports on here, I didn't expect things to move so quickly! So, hopefully we will be home by Tuesday as that is when our wish granters are supposed to come meet us!
I have spent so much time reading other people's reports to ideas for planning, and I am excited to start planning for us!
I need to go back and read the instructions for posting photos...so those will have to follow!
Kylee
wife to Andy and mom to Sarah (wish kid) and twin sister, Sophie
Not sure where to begin...Sarah is going to be 8 in May. She has quite a few different medical diagnoses, so I will list the big ones. She has 1p36 chromosome deletion syndrome, epilepsy, eosinphilic esophagitis, scoliosis, syringomyelia, hypothyroidism...and the list goes on! Sarah has a twin sister, Sophie, who is an awesome sister and helps take such great care of Sarah! Sarah has had numerous surgeries and way too many hospital stays. We are currently inpatient as she has had an increase in seizure activity and some other little weird things going on. She just had an eeg done and we are waiting for an MRI of her brain a little later tonight.
During one of our hospital stays, one of Sarah's therapists talked to me about MAW. I had never thought much about it and really didn't think Sarah would qualify. She pulled up the website on her laptop and told me to fill out the online portion while she was working with Sarah just to see what would happen! That was in November, and we found out about three weeks ago that she was approved for a wish. I filled out that paperwork and returned it, and we got a phone call this week from our wish granter! After reading some reports on here, I didn't expect things to move so quickly! So, hopefully we will be home by Tuesday as that is when our wish granters are supposed to come meet us!
I have spent so much time reading other people's reports to ideas for planning, and I am excited to start planning for us!
I need to go back and read the instructions for posting photos...so those will have to follow!
Kylee
wife to Andy and mom to Sarah (wish kid) and twin sister, Sophie
Sarah is doing pretty well, had a good visit at the endocrin this week to finally hear that her thyroid levels are where they should be...we have been adjusting synthroid doses for almost a year! This Monday we go to pick up her back brace for scoliosis...not looking forward to that. It is a providence back brace, she will not even be able to sit up when wearing it. For a girl who has struggled with sleep issues for years, I can't imagine her resting very peacefully in this
=) Poor kid, hopefully she will get adjusted to it and get some sleep. We'll keep our fingers crossed for no surgery also! 
