Random Photos

Last Surgery!

Well just when I thought all the excitement was over in our lives, I just realized moments ago that the poopy smell we thought was eeking from Ya Ya's bum, is not coming from her bum, but rather from the little drain hole at the bottom of her cast.

I just put a call into the ortho clinic at Children's and hope to hear something back soon. I just keep thinking that a foot amputation and a poopy smell coming from the site doesn't seem normal. This didn't happen with Jieling!

I am holding it together for now.




Update!! After noticing the foul odor from Ya Ya's cast I was instructed to take her in, and if I hurried I could go to the ortho clinic instead of the ER. I was frantic and quite upset, but not because I thought something was seriously wrong, but because of the fear Ya Ya has for people in the medical profession. I think this fear stems from her toe amputation in China and whatever that entailed?
Anyways, much to my surprise and utter shock, Ya Ya did not flinch, whimper, or protest even one second when they started to cut off her cast! I think she was curious and anxious to have her big pink bandaid removed. I on the other hand was trying not to pass out! I was not ready to see her footless and all the messy smelly mess. All the dressing inside her cast was soaked and yucked up, but NO infection. Thank God. If it were infected they would have had to clean her stump and that would have been pure torture! Oh thank you God. In the end they just ended up cutting off the bottom half of her cast changing all the dressing and she was recasted. She sat still (miracle in itself) and let the professionals do their work. I was and am still amazed, because Ya Ya screamed a lot in the hospital. While still in recovery they had to give her ativan to calm her down because she was trying to pull everything off of her. She cried if a nurse even looked at her. She would put her hand up to them and tell them "No thank you." She threw something at one nurse, and was just not a model patient. Poor baby, I just wanted to get her out of there and safe at home, so her reaction, just 4 days after her surgery is amazing.

Fun TImes

These first two pictures of Ya Ya just make me smile. My baby girl had the BEST time camping ever. She really loved every minute, and I just loved watching her enjoy herself and all her family. We had a good time and really look forward to more trips in the spring.

Mud Baths

I'm horrible about posting updates! Nick is doing great, No seizures since his surgery! The first week home with him was not fun. He had a lot of anxiety, and did not trust us to take proper care of him. Silly kid.

His recovery and attitude has been amazing. He's been going for walks, and can't wait to start lifting weights again. His Dr.'s say it's too early to call this a cure (especially since his chances of this were very low) but we are hopeful. I love this big kid and it's so nice to see him smile again!

The girls and the rest of the kidlets are doing well. We are looking forward to a week at the ocean next week with all the family.

The little girls thought it would be fun to add dirt to their pool today and take a mud bath. The only time I freaked is when I caught Ya Ya drinking the muddy water!

Multiple subpial transection

Not exactly the words we were hoping for, but at least Nick still has options. The mapping this morning showed that Nick's seizure focus is located too near his speech and motor areas so he will not have the resection. His loss of function would be too great if these areas were removed. The mapping was interesting but very exhausting for Nick. I read that some patients actually enjoy some of the sensations they experience during mapping, but this was not the case for Nick. It caused him to be very fearful of a big seizure and he stopped multiple times asking for reasssurance. Once the testing was done he got a nice calming dose of Ativan, and he is still sleeping...12 hours later. Today has been the hardest so far, but the Dr.'s have told us how well Nick is doing. They told us most of their patients don't do as well as Nick.
Tomorrow morning Nick will have surgery to have the grids removed and will have the subpial transection. He won't have any tissue removed, but will have tiny slices made in the area of his seizure focus. I don't have the energy to explain the procedure, but it's easy to google.
I am thankful that at least Nick still has options if this doesn't work. Many epilepsy patients are not candidates for grid surgery, so I still feel blessed, but I'm speaking for myself and not Nick. At least we know where Nick's seizures are so this will never be in question. His Dr.'s feel Nick is a good candidate for the deep brain stimulation (neuro-pace) but we will cross that bridge when we come to it.
Nick has been so amazing through all of this. He is such a brave and awesome young man.