We did the sleep study and the MRI which both went pretty well. Anais was a trooper through it all. We won't have the results from the sleep study for about 2 weeks. The MRI itself went pretty well, she did really good with her anesthesia. Jeff and I were pretty nervous about it but we knew that she was being taken care of by a really great medical team.
Anyway, fast forward to when we get the MRI results...
The neurosurgeon said that her foramen magnum (the opening to her spinal cord which is located at the base of the skull) was too small. As some of you already know, it is very common for people with achondroplasia to have a small foramen magnum in the first place. However, he said that hers was smaller than expected and that she should get surgery to open it up...sounds scary, I know! He said that the risks of not doing anything would be greater than the risks involved with the surgery. The main risk associated with such a small foramen magnum is sleep apnea which could potentially be fatal. So this is not something we want to mess with! It is such a major surgery though, and she is so tiny! I feel horrible putting her through this but we have no other choice...We have to be strong for her. When I look at her, love is all I see. She looks at me with her big eyes and I just see how much joy and love she has in her. I must trust that she will be strong and be ok...she HAS to be ok.
The surgeon wants to do the surgery when she's 3 months old which would be in September. I talked to his nurse today and the surgery is scheduled for Wednesday September 10th, which happens to be my birthday...not really how I wanted to spend my birthday! The surgery will take place at Primary's children's Hospital in Salt Lake City and will be performed by Dr Walker, a pediatric neurosurgeon. Please keep us in your thoughts.
Now...here are some pictures of our 2 weeks in Salt Lake
The kids found a little garden snake in my mother in law's backyard and loved it!
I tried to take a picture of Sam and I but she would not stop making silly faces...this is the best I got! LOL
Little Anais being mellow
After a whole day of playing, this is how Sam fell asleep...you can imagine how tired she must have been!
Anais' sleep study
Anais in her hospital gown right before getting her general anesthesia for her MRI
and then waking up from her anesthesia
We got home yesterday and I think today they both enjoyed being home. Anais was happy to sleep in her crib again and Sam was excited to wear her princess dress again!
8 comments:
You have a beautiful family! You all will be in my prayers on the 10th that Anais' surgery goes smoothly and that she has a speedy recovery. It is amazing how much strength our little ones have (my son has an undiagnosed form of bent bone dysplasia).
-Jenn
She is so cute in all of her photos!! I'm sorry the doctor is saying she needs surgery. Just my 2 cents...but you may want to consider a second opinion with a doctor familiar with achons (yours may be I'm just saying putting this out there). My doctor who is familiar with achons has yet to say Cole needs surgery, but if he does I will surely be getting a second opinion. You can do it through the mail and not acutally see the doctor. I'm not saying that your doctor is wrong, but I've always heard it's best to get a second opintion when dealing with such a scary procedure.
You have such a beautiful daughter or two for that matter! :)
You don't know me, but I found your blog through Katie Johnson's blog. While I don't have a child with achon, I did have a child who was quite premature. As parents, we want the best for our children. I know how hard it is to have a child in the hospital, facing proceedures that are necessary, but unwanted. Please know that someone in Arkansas is praying for you and will be praying for Anais on September 10!
Best,
Susan S.
Okay, my favorite is anais in her gown before the MRI. SOOOOOOOO CUTE! You know me, I will always have you in my thoughts, Love you guys.
Hi!
The pictures are so cute! I totally remember the hilarity of Owen all taped up for the sleep study. At least you had the good sense to bring your camera!
I am going to agree with Katie about considering a 2nd opinion. Perhaps even Dr. Pauli can help you out.
I have heard that docs who don't deal with a lot of achons tend to want to rush to surgery.
It may give you piece of mind before having to do brain (or closed to the brain) surgery. A 2nd doc may tell you the same thing or may disagree.
Whatever you decide, good luck. It is ulimately a decision that you and your doc(s) will have to make. I know you will do what's best for Anais!
Cat
I love the shots of Sam not able to keep a straight face! Evan has that problem all over the place - Cherylle's got piles of pics of him looking ridiculous! It got so bad we had to bribe him at Picture People when we tried to get professional ones of the kids...
And yep, I love GnR too :-)
The FM issue is definatly not something to play around with! Get a 2nd opinion. Dr. Pauli will look at Anais MRI!! Send it to him or have your Dr. send it. If you need his contact, let me know!! If she does need the surgrey, know it is a common procedure for some infant, even without Achon. Let us know and we will be praying for you!
Sam is too cute and such a goof ball - but you can she her love for Anais in the photo of them laying together. I absolutely adore the close-up photo of Anais, she is so precious. We will be including Anais and your family in our prayers. Trace hasn't had any FM issues, but he did have surgery to correct hydrocephalus at 8 mos - the waiting is definitely the hardest, the entire process will be much worse on you than on Anais, little ones are so tough and rebound quickly.
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