A week ago today was Jackson's 2nd Surgery...so that means he has been a whole week without seizures! It feels like this 2nd week has gone by fast! Such a blessing!
We made it through the day! Poor Jackson wasn't happy about moving around too much with his head yet. He was a trooper though. He had 2 - 45 minute PT sessions where they work on Gross motor skills, 1 - 45 minute - OT session which is more fine motor skills, and the Recreational Therapy for 45 minutes which sort of combined them all. Speech was off today.
He was a sport about it until the last session and then he had a little meltdown. Although, considering he is only a week out of surgery he did really well. He is just used to taking his naps, and didn't get one until 3:30 today.
He will have some therapy tomorrow on Saturday and Sunday he will be off. We were able to get a day pass to take Jackson outside the hospital. It should be nice this weekend, so it will be good to get some fresh air and do something fun outdoors.
Jack should sleep well tonight, which means me too! Thanks to all for continued prayers for Jack's healing! Hopefully we will be heading home this time next week!
Friday, October 10, 2008
Thursday, October 9, 2008
In Rehab
Jack is in the rehabilitation wing now. He didn't have any therapy work today, but he definitely was all smiles and laughs this afternoon. He was able to get his IV taken out too!
Not too much report today. Pretty much a day of rest, before he starts his 9 am - 4 pm therapy! Seems a little much for a 1 1/2 old out of surgery, but they obviously tailor the program to his needs and ability...with a few naps in between.
He gets to wear his own clothes tomorrow and has a little more independence to leave the room.
We continue to count our blessings! Thanks for checking in on Jack's progress!
Wednesday, October 8, 2008
Moving on Up
Jackson continues to do great post surgery! He had a full day. Neurosurgery removed his EVD tube, which was placed in the ventricle of the brain. It was a drainage system to keep the fluid balanced, pressure low and even reduce possible fever post surgery. He had to get 1 stitch when it was removed, but he didn't fuss too much.
He is now going to be on all oral meds, so the IV will be out tomorrow!
He is also checking out of the 5th floor and moving to Rehab in the morning. The therapists came to work with him today, and they are impressed by how strong his left side is post surgery. He pretty much has equal movements on both sides.
Jackson does get exhausted easily. If he eats, then he needs to sleep. So you can imagine a workout with the therapists really puts him out.
It has just been amazing to see Jackson wake up and not have a seizure! Usually, his spasms (seizures) would occur in clusters after waking from sleep or naps. I would always have to go slowly with him...letting him relax and wake up. (not that my method ever worked!) These therapists just woke him from his deep sleep, immediately made him get on the mat and do exercises. I was just watching him and thinking about how we have dreamed and wished for this day for so long, and now it is becoming a reality. He was doing simple things without hitting his head on the floor from a strong spasm, or on the table or one of his toys. As some parents know all to well, it is emotionally and physically exhausting to watch your child do this every single day. When you go through something like this, you learn to appreciate the little things in life and every small development. This past year has not been easy, but we have learned to never take one little thing for granted! I know he is lucky! I know our prayers were answered!
We continue to be so thankful to God and look forward to each new development in Jackson's life!
Tuesday, October 7, 2008
Resolved
Jackson's tongue is working again! ;-) The cause was due to the max swelling of the brain. He is able to eat. The Neuro and Surgeon were not worried, since he was able to drink a bottle. They both said his muscles were working. Speech Therapist thought he did fine this afternoon. All is well!
Jackson will get his drainage tube out first thing in the morning. He will check out of this floor on Thursday and then will move to the Rehabilitation for a week to work on Physical Therapy, Occupational Therapy and Speech. If we have to be in Detroit an additional 7 -10 days at least he will receive lots of therapy to jump start his road to recovery.
They will do PT, OT and ST - each twice a day for 45 minutes each. Poor little guy won't get much of a break, but we will have to think of something fun to celebrate soon!
Jackson will get his drainage tube out first thing in the morning. He will check out of this floor on Thursday and then will move to the Rehabilitation for a week to work on Physical Therapy, Occupational Therapy and Speech. If we have to be in Detroit an additional 7 -10 days at least he will receive lots of therapy to jump start his road to recovery.
They will do PT, OT and ST - each twice a day for 45 minutes each. Poor little guy won't get much of a break, but we will have to think of something fun to celebrate soon!
Tongue Issues?
We are so grateful to have another day and night with no seizures! What a miracle for our son!
Jackson is still a little uncomfortable and uneasy when he is awake. Still to be expected after a major brain surgery. We didn't get a lot of sleep last night, because his latest IV was causing the alarms to go off constantly. I think they finally corrected it this morning!
He is having some issues with his tongue now. He gets a bottle down fine, but the eating is more difficult. He has never had problems eating before. I started him with some oatmeal and baby food, so he would not choke. He just kept it on his tongue and had difficulty shifting it to the back. He did finally swallow, but it was not natural. Also, as you can see in almost every picture....he loves his pacifier! He won't take it anymore!!!!
His Neuro was in and said it could be caused from the swelling of the brain. Also, the MST procedure on his right motor strip could also cause this effect around his mouth temporarily.
They ordered a Speech Therapist in for an evaluation this morning to evaluate. A baby's brain has so much elasticity that when a part of the one side is removed, then the other side will take over. It can take time, but no one seems to be alarmed by this. He wants to give it a few days.
Also, he is going to take Jackson off 1 of the 4 meds because he is so sleepy. Topamax will be gone!
Thank you all for keeping him in your continued prayers for a smooth recovery and seizure freedom!
Jackson is still a little uncomfortable and uneasy when he is awake. Still to be expected after a major brain surgery. We didn't get a lot of sleep last night, because his latest IV was causing the alarms to go off constantly. I think they finally corrected it this morning!
He is having some issues with his tongue now. He gets a bottle down fine, but the eating is more difficult. He has never had problems eating before. I started him with some oatmeal and baby food, so he would not choke. He just kept it on his tongue and had difficulty shifting it to the back. He did finally swallow, but it was not natural. Also, as you can see in almost every picture....he loves his pacifier! He won't take it anymore!!!!
His Neuro was in and said it could be caused from the swelling of the brain. Also, the MST procedure on his right motor strip could also cause this effect around his mouth temporarily.
They ordered a Speech Therapist in for an evaluation this morning to evaluate. A baby's brain has so much elasticity that when a part of the one side is removed, then the other side will take over. It can take time, but no one seems to be alarmed by this. He wants to give it a few days.
Also, he is going to take Jackson off 1 of the 4 meds because he is so sleepy. Topamax will be gone!
Thank you all for keeping him in your continued prayers for a smooth recovery and seizure freedom!
Monday, October 6, 2008
Jackson and Dr. Asano
One more key member of the team, is Dr. Asano who oversaw the mapping of Jackson's brain. He detected where the seizures were coming from and where the healthy tissue/function was to remain. He really led the surgeon in the resection of Jack's brain while the grids were in place.
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