Wow I am so behind on the blog and I am determined to finish this entry no matter what! So since my last post Emma got her cast off and two days later her foot swelled up and got super hot and was all signs of a break...well to make a long story short I FIRED HER last doctor so to speak. I am just so done with him so we took her to a new doctor to find out she did have a fracture and so Yep she got yet another cast but dont worry she already got it off after Thanksgiving. Last week she got casted for her AFOS finally "YAY"!
We go next week to pick them up, and last week we also had her IFSP for the state which is an assessment of what she has accomplished and what new goals we should be making and if their are any other concerns we might have for her. So we have added Speech therapy to the mix she barely qualified. She says about 7 or 8 words consistently and knows 3 signs so she isnt completely behind but I think she will get there in her own time. Speech therapy will just help her get there faster which will be good.
Unfortunately Emma has been experiencing some really weird things and at first I didn't want to think to much about it but it is starting to worry me. So I want to say it started a week ago when she did it the first time where she threw up at night and I had no idea until I came into get her in the morning. When it first happened Nick put Emma down for bed with a bottle of milk (which I never do) so I just thought that was the cause of it because she's not used to it.
Well about 4 days go by and we put her down for bed and she got so upset because she didnt want to go to bed she threw up again. So this time we thought ok she just got her self so upset she made she self puke. Then again 3 days later last Friday afternoon Emma woke up screaming from her nap and I go in there and she threw up and continued to throw up. So now I am thinking ok maybe the milk? But very weird because just out of no where the milk is now bothering her?? So Friday I dont give her any more milk and try to give her light things on the stomach but she is still acting fine like nothing is going on with her, but Friday night she woke up again crying and was sick all night so then I thought it must just be a bug because she was better later Saturday afternoon. So she is totally fine again nothing going on then Sunday night she throws up again. and then last night she woke up 3 times crying like she didnt feel good. Well back tracking a couple of days we where all siting on the bed and noticed her itching her neck. It was was red from her itching it and it was where her shunt tube is, so I tired not to over react and just watch her she did it twice and havent noticed it since.
So last night I was sitting in bed and started thinking well this could just be acid reflex or something along those lines but then I realized last time we thought it was acid reflex it had to do with her shunt and when we fixed that it went away and she had no more tummy problems. So I am calling her neuro surgeon today to see what they think and if he can see her. For one thing I am sure of is she is not sick this is NO STOMACH BUG.. so now we just have to figure out what could be causing her to get sick.
Hi Lexi,
ReplyDeleteI stumbled upon your blog, and reading few of the entries has given me a very meaningful inside perspective about having a child affected by spina bifida. I am inspired by your courage and touched by the pictures of your family that I had to reach out. My name is Courtney Beyer, and I am the new Study Coordinator at VitaPath Genetics. Earlier this year, we successfully completed the first phase of our landmark study looking at the genetic factors contributing to spina bifida. In conjunction with our academic collaborators at Children’s Hospital Oakland Research Institute (CHORI), Stanford, UC Berkeley and UCSF, we recruited over 1,000 women and their child affected by spina bifida to participate.
Our first phase produced promising results but, we believe that it is appropriate for us to replicate this study in a second, independent group of mothers. We are beginning our second study in early January and are reaching out to more mothers to participate. In order to reach as many women as possible, I would very much appreciate if you could include news about the study in your blog. I also have banners and buttons if you would like to post something on your site. In addition it would be great to connect with you via facebook (search SB Genetics) and twitter @sbgenetics.
I would like to get in contact with you to share more information and answer any questions that you may have. Please email me at CBeyer@vpgenetics.com and visit www.sbgenetics.org. This website gives an in depth explanation of the study as well as a link if you are interested in enrolling. Thank you for taking the time to read my note and I am greatly looking forward to being in contact.
Warmest regards and happy holidays,
Courtney