UPDATE
FEBRUARY 16TH 2000
Well hello everyone!
We just got home from the City last night.
We took Jenna in for her ear tubes.
We went down on Tuesday and spent the night at the family house and got up early Wednsday morning and walked over to the surgery center.Jenna went right in, thank goodness because she wasn't able to have a bottle after midnight so if we had to wait any longer we would have been in big trouble! She did really well though.We were really concerned because we thought they were going to have to intubate her with the anesthesia but they did not.
Every time you have to intubate a Hurler child it is a risk because of their thickened airway's,so we were very happy that they didn't!
We did however get a small preview of just how hard this is going to be.They let me hold Jenna while they held the mask on her face to give her the anesthesia,she fought the whole time,looking at me as if to say why???So then they made us leave(very hard!!)Thank goodness it was
A very fast surgery and she was in recovery in about a half hour.We were going crazy out in the hall because we really wanted to be there when she woke up so she wouldn't be scared.Then we looked up and saw this huge iron crib rolling out of the OR toward the recovery room with a little baby in it.Well it turned out to be our little baby !We couldn't believe how small she looked.She slept for about another 1/2 hour then woke up kinda mad and throwing up.All in all they said she did better than most.We went back to Family house ,which by the way is great we were very happy to have found it.We decided to wait for a while until Jenna really woke up before we put her in the car to go home because we were afraid it might make her sick again.
Also just to let everyone know we had her eye's checked last week and they said she does have some clouding of the cornia but they think she is seeing fine and that her eye's were probably on the bottom of Jenna's list of problem's.
We are still waiting on the final decision from the Dr. about which donor to use so i'll let you all know as soon as we do!
We met a couple of other family's at the family house,both had 10 year old boy's with cancer.One of the boy's was doing pretty well but the other one has to go through internal radiation and be put in a room for a whole week all by himself until he "stop's glowing" as his mother put's it, all the while he is getting sick from the radiation and trying to take care of himself.His mother can only talk to him by walkie talkie!Talk about hard!!They were both so cute !
Ok well take care everyone! I'll update as soon as I have something new to tell !Thank you for your support!
Love,
The Watson's