Most recently we have been busy once again with many, many medical appointments for Hayden. In order of discussion 1) MRI, 2) cranial facial clinic, 3) eyes, 4) ankle foot orthodox, 5)bath chair & equipment, 6) allergies:
1) Hayden had another MRI last Thursday. This one required full sedation for the 2 hour test which meant we went to the hospital at 5:30am for an apmt at 8 that got pushed back to 9:30. With sedation it meant that Hayden couldn't eat or drink anything since 2:30am. With a 10 month old lil guy I was worried but he was just a wonderful little boy and didn't fuss even though he couldn't eat. This MRI was ordered at his last SB clinic to see how his spine syrinx and tethered chord and brain shunt and vents were doing since surgery. Since I had mentioned that Hayden has continued to have low muscle tone even with regular in home physical therapy, the neuro wanted to do a follow up.
2) Hayden also has been referred to a cranial facial clinic with a team of doctors to evaluate the shape of his head and premature fusing of his skull sutures and small fontanel. One of his neuros is on this team as well as the plastic surgeon who so skillfully sewed him up. Hayden's home health nurse, Kathy, and I went to a 4 hour clinic with Scott working from home on Tuesday before they realized we had been scheduled to the wrong clinic. We will be going to the right one this Thursday for the evaluation.
3) This week Hayden will get the follow up opthamologist eye exam to see how his 4 months of patching his eyes has done for his vision (strabismus). His eyes visibly still cross, so there is the possibility that he will need eye surgery by the time he is a year old. A great link to describe this procedure is below:
4) Ankle foot orthodox, AFO's, were cast and will be picked up this week too. I am excited that these will further encourage Hayden to stand and feel confident. These little foot braces look like our fellow SB kiddo Zachary's:
5) Hayden just got his $400 bath chair delivered this week thanks to our insurance and medicaid. He has had one bath in it and Hanna tries to take it over. It is awesome and makes me feel much more secure washing him. The only down side is that I can't bath both kids at one time cuz it takes up the whole tub.
Hayden will also be getting a new chair to sit in, since he can't yet sit up and he is outgrowing his infant chairs. We are so grateful that all of this is being provided for our little guy.
6) Allergies: Hayden has developed a good size rash after an introduction to bananas. With the SB Latex precaution some of the other foods that he may be allergic to are pears, avocados and kiwi and other things that are listed on the link on the right side of our blog. We might try again later or go to an allergist to see if it is a true allergy.
This is the inside of the announcement.
I can't believe my baby is going to be one year old. There have been dozen's of people that have cared for Hayden since his birth. All of them we feel eternally grateful for. We call them Hayden's Heros. We are going to have a small birthday celebration with family and try to get together a few other Spina Bifida families.
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