Thursday, January 28, 2010

Playground and Hayden's 1st Birthday Announcement

This is the front of Hayden's Birthday Announcement.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.
The big news this week, other than the kids both being sick was the new PLAYSYSTEM.
Even though both kids have been sick, the sunshine, and warm wonderful weather lured the kids outside for a great time playing on their new set. After being cooped up inside for a week with sick kiddos, I don't know who was more excited to be outside, me or the kiddos!

Thursday, January 14, 2010

Follow up to Hayden's medical apmts

The first two weeks of medical apmts wiped us out. We have mostly good news to report.
First the bad news. While we have patched Hayden's eyes for 4 months, he will still need eye surgery 2/11 to correct both eyes. The Opthamologist said that Hayden does not have depth perception and that the surgery will correct it. She said that the risks are less than Lasic eye surgery. However, he will be recovering for at least 10 days with bloody looking eyes. The good news is that he has good eye muscles and a perfect optic nerve.

MRI- went well. Hayden at at 2:30am and didn't get to eat again until 1pm. We had to be at the hospital at 6:30, which meant leaving the house at 5:30 just to be there for the 8am apmt. For some reason they think you need to be there really early with a baby. Then we got pushed back until 9:30 and Hayden didn't even cry from hunger until he had to be held down for the gas from the anesthesia. Our nurse Kathy said from the report it looked like he did great and held stable throughout. We didn't get the brain and spine results until at the Cranial Facial Clinic from the neurosurgeon Dr. George.
Cranial Facial Clinic- this is a scary place. These poor children had some real obstacles. Fortunately for Hayden, his MRI looked good as far as his brain development. While his sutures were prematurely fused, the doc said they still looked good. Whew! No surgery to open his skull!!! And as for the helmet, the doc said they are mainly for kids who have a flat spot due to sleep positioning and that can be corrected with the helmet. Hayden's flat spot is due to his shunt. He doesn't sleep on that side and so we are extremely grateful that the shunt is working and that is that.
Cool news...after the clinic, I got to meet one of my on-line babycenter Spina Bifida moms, Angie, and her 8 month old son Josiah. She recognized us from our blog pictures and stopped us in the parking lot! This was an awesome chance encounter! After the good news from the clinic, this left me with a real rush of joy feeling that we are not alone. Unfortunately for Josiah, they found that his shunt was not working and he had successful surgery shortly thereafter.
This was a long post, but there have been a lot of medical apmts.
Videos: I have also uploaded many new videos on my youtube link. Check them out!

Saturday, January 9, 2010

Happy New Year

Above are the highlight pictures of our 10 day 13hr/each way trip to New Mexico for Christmas. We all had a wonderful time and are very grateful for our dear family and friends.

Hayden's medical update

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.