Thursday, September 6, 2012

                                            Revisions

      So, this re-covers some of the last post, but my precious lil dude had his first MRI, he was sedated for it. It was looong though. We arrived at 11:30 am and did not leave until 4:30 pm. After the MRI we had to book it to our second appointment with our neurosurgeon to go over the MRI results. This was all very nerve racking considering we have never seen what Elijah's brain looks like before. Usually it's not something parents would worry about. You go to your 20 week ultrasound they look at all your baby's body and your usually fine. But, since we have never seen it we had to clue what to expect. Anyways, our neurologist is known to be one of the best ones around and he is really good, but he is NOT the best at bedside manner. He is very quick. You need to know your questions when he comes in and ask em quickly before he leaves. He said Elijah has something called schizencephaly. Google it if you want a detailed explanation. But it doesn't really mean much. Babies can be anywhere from perfectly fine to..not perfectly fine. Elijah is doing really well right now. He also has something called Chiari Malformation II which is when the cerebellum basically gets pulled down into spinal cord. 80% of children born with Spina Bifida have it. Not all are symptomatic. If they have not had any symptoms by a year and half you are usually not going to have any. Praise the Lord we have not had any yet. Hopefully we won't either. One problem that we have had with Elijah's shunt is that it has been puffy around it. The Dr recommended a revision to see if we could fix that because well, it shouldn't be doing that. The revision went well he told us to place a sweat band on his head to try and get the rest of the puffyness down. It hasn't worked yet but then again we have not consistently been able to do it. The whole thing makes me nervous in general. Having to wear something like that around your head and then having it slide down. We tried it with a hat which seemed to be working but it's just so darn warm right now!






 I had just finished telling Brad that it has been nice because since his vesicostomy surgery he has had no UTI's..2 days later literally he got a UTI. So now we are battling one of those which is not usually too big of a deal but we are having a really hard time getting him to take the medicine. He gags, throws it up, pushes our hands away when we try. I have tried putting it in while I am BF him I have tried putting it in a bottle with juice or formula. Nothing works. So I will have to call the pedi tomorrow if I can't get anything in him. Other then those two things he is doing SO well. Our infant specialist that comes over once a week says she is amazed at how well he is doing. Due to his low tone he is pretty weak but he has been almost rolling, reaching for toys, and lifting his big ol' cute head up to look at us with his big blue eyes! 

Lilly has started Kindergarten and she is loving being around the kids and so far it's been a great experience for her. She got to take home "Ms. Honey Bear" a stuffed bear with her own outfits and she had to help MS. Bear write in her journal about her experiences at our house. Journaling is like blog posts before the internet for all the kiddies out there :-) She's such a smart girl and is picking up on the spelling and other activities they have been doing. 

Grace is enjoying the quiet time at home, and I think it's giving her a chance to express her creativity as well. She loves holding and talking to her baby brother and hearing all of Lilly's Kindergarten stories as well. She is our little sweetheart, but also a three year old, with all of the fun that that entails!

We love all of our gifts from God!

3 comments:

  1. As always I love reading updates about the family. Thanks for the details on how Elijah is doing. It is helpful to know how to pray, and to know what is going on with his life. So excited for Lilly starting school. I can only imagine how Grace must feel. If Harrison is gone for a while Evelyn feels a little lost. :) Talk to you soon!

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  2. Aww, thanks Courtney! Yes she has walked around a couple times looking for her. We are so excited to see you guys!

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  3. Hello, thanks for your post. Could I put our website about gifts here? Many thanks! Anw, very happy to be your newest follower

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