When we were on vacation Jack had a small seizure after breakfast one morning. When we got home I called his neuro and he increased his bed time dose of tegretol and said if that didn't work we'd switch to another med.
Well, this morning right after breakfast (10:00 am) he had another small seizure. He started with mouth movements like he was tasting something, grunted like his tummy hurt, asked for a drink and then some food (which I did not give him). I think he was feeling different sensations in his belly. It lasted only seconds and now he's really sleepy laying on the couch.
Another call in to his neuro I guess...
What meds are your kiddos on for seizures? I don't know what he would consider changing to...I wonder why the Tegretol isn't working like it used to? He's been taking it since he was 15 months old with fabulous control until January of this year.
Anyway, just asking for some hugs -- I HATE this.
Saturday, September 29, 2007
Friday, September 28, 2007
Tuesday, September 25, 2007
Neurosurgery Check Up
We had a check up with Jack's neurosurgeon yesterday. He's been Jack's NS since he was born. Jack has hydrocephalus which required a vp shunt to be placed when he was in the NICU. Thankfully Jack hasn't had any problems with his shunt and we're on a yearly check-up schedule with the NS.
Jason came home early from work to be with Morgan so I could take Jack to the appointment. We left early and I decided to take his walker. We parked in the parking garage and I carried Jack and the walker the short distance to the garage elevators. Once we got to the elevators I put Jack in his walker and he was so excited! He walked into the elevator...stood there while we went down and I helped him turn around so we could walk out. He walked all the way down the ramp to the sliding doors at the South Rehab entrance. He wasn't paying attention and he got his walker caught on the sliding door. A nice gentleman held the doors from closing and Jack maneuvered and made his way through the doors. He then walked down the corridor and made a right hand turn into the waiting area! I was so proud of Jack.
We signed in and as we were waiting for the doctor he took several trips down the long hallways...a few times he asserted his Independence and wanted to go in a different direction. For the first time he was on his own. It was amazing to see. I liked that he didn't listen and insisted on going back to the bathroom instead of back to our exam room! Normally Jack doesn't have a say. He's usually in his wheelchair or stroller -- both of which I control. He did take instructions well and I was able to verbally instruct him on which way to turn or how to get "unstuck" -- it was truly a milestone day!
We met with the NS and he was happy to hear that Jack hasn't had any signs of a shunt problem. We talked about his candidacy for surgery to reduce spasticity. We talked about SDR surgery -- he didn't think Jack was a good candidate due to low muscle tone in his hips as well as dynamic tone (tone that changes with positioning). We also talked about a baclofen pump -- which he does feel Jack would be a good candidate. There is a test they do to see how the medication would affect Jack. If we decide this is what we want to do we can schedule the test. He told us it will look as though Jack swallowed a hockey puck -- Jack is small and has skinny little belly and the pump which is placed in the abdomen will protrude out. The numbers he gave us for the pump system that they use were refilling usually happens every 3 to 6 months in the clinic. It is done by a needle into the pump. The entire system usually needs replaced about every 7 years because the battery dies. I asked if placing the pump puts Jack at risk for a shunt infection. He said he's only had one patient with a shunt end up with a baclofen pump site infection after surgery and the shunt did NOT get infected. He said patients with shunts usually end up needing less medication from the pump because the shunt helps move it along the CSF tract. I thought that was an interesting tid-bit. There are risks -- infection after surgery, pump failure, over or under medicating (both of which can be extremely serious). The pump is programmed by a human being so there's risk of human error. The benefits are many though. The pump puts medication directly in the spine which goes directly to the spastic muscles. He said he feeds the lining high which would greatly reduce the spasticity in Jack's right arm...enough to be functional with a lot of therapy. Jack's legs would benefit making walking easier. It's a tough call. He gave us some information and a video to watch. Silly us, we don't have a VCR anymore -- just a DVD player so I am going to have to find somewhere to watch the tape!
We are taking our time making the decision. There is no rush. I would love to hear from anyone who has been though the surgery themselves or have kids with the pump. I will keep you all posted on what we decide.
Today is Jack's first day back at school for over a week! I will miss him :( I am sure he'll be so excited when the bus gets here!!
Jason came home early from work to be with Morgan so I could take Jack to the appointment. We left early and I decided to take his walker. We parked in the parking garage and I carried Jack and the walker the short distance to the garage elevators. Once we got to the elevators I put Jack in his walker and he was so excited! He walked into the elevator...stood there while we went down and I helped him turn around so we could walk out. He walked all the way down the ramp to the sliding doors at the South Rehab entrance. He wasn't paying attention and he got his walker caught on the sliding door. A nice gentleman held the doors from closing and Jack maneuvered and made his way through the doors. He then walked down the corridor and made a right hand turn into the waiting area! I was so proud of Jack.
We signed in and as we were waiting for the doctor he took several trips down the long hallways...a few times he asserted his Independence and wanted to go in a different direction. For the first time he was on his own. It was amazing to see. I liked that he didn't listen and insisted on going back to the bathroom instead of back to our exam room! Normally Jack doesn't have a say. He's usually in his wheelchair or stroller -- both of which I control. He did take instructions well and I was able to verbally instruct him on which way to turn or how to get "unstuck" -- it was truly a milestone day!
We met with the NS and he was happy to hear that Jack hasn't had any signs of a shunt problem. We talked about his candidacy for surgery to reduce spasticity. We talked about SDR surgery -- he didn't think Jack was a good candidate due to low muscle tone in his hips as well as dynamic tone (tone that changes with positioning). We also talked about a baclofen pump -- which he does feel Jack would be a good candidate. There is a test they do to see how the medication would affect Jack. If we decide this is what we want to do we can schedule the test. He told us it will look as though Jack swallowed a hockey puck -- Jack is small and has skinny little belly and the pump which is placed in the abdomen will protrude out. The numbers he gave us for the pump system that they use were refilling usually happens every 3 to 6 months in the clinic. It is done by a needle into the pump. The entire system usually needs replaced about every 7 years because the battery dies. I asked if placing the pump puts Jack at risk for a shunt infection. He said he's only had one patient with a shunt end up with a baclofen pump site infection after surgery and the shunt did NOT get infected. He said patients with shunts usually end up needing less medication from the pump because the shunt helps move it along the CSF tract. I thought that was an interesting tid-bit. There are risks -- infection after surgery, pump failure, over or under medicating (both of which can be extremely serious). The pump is programmed by a human being so there's risk of human error. The benefits are many though. The pump puts medication directly in the spine which goes directly to the spastic muscles. He said he feeds the lining high which would greatly reduce the spasticity in Jack's right arm...enough to be functional with a lot of therapy. Jack's legs would benefit making walking easier. It's a tough call. He gave us some information and a video to watch. Silly us, we don't have a VCR anymore -- just a DVD player so I am going to have to find somewhere to watch the tape!
We are taking our time making the decision. There is no rush. I would love to hear from anyone who has been though the surgery themselves or have kids with the pump. I will keep you all posted on what we decide.
Today is Jack's first day back at school for over a week! I will miss him :( I am sure he'll be so excited when the bus gets here!!
Monday, September 24, 2007
Vacation Pictures!
Our vacation pictures are uploaded and ready to view!
It's amazing when you visit the same place each year to see the difference in Jack's growth and development. He had an absolutely wonderful time! We all did. Although traveling with two little ones is tough -- it was certainly worth the experience. Vacations take on a new meaning -- we didn't relax one bit, it was tough work, and hard -- but the look on Jack's face when he saw the ocean was totally priceless! Morgan did amazingly well during the car ride...something I was a little concerned about. She loved going for long walks and spending time with Grandma Josie and Grand-Pauly.
Friday, September 21, 2007
Neuro Update
I spoke to Jack's neurologist yesterday afternoon. He agrees that the episodes were seizures. He said they were simple partial seizures.
Our plan is to increase his night time dose of Tegretol by 2ml. He's increasing the dose at night because of our experience with complete meltdowns when he has more medication during the day. So now he's getting 4 ml in the morning, 3 ml in the afternoon, and 8 ml at night. In a few weeks we'll have another blood level done and hopefully this will work. If not he said it's time to look into switching to a different medication.
We had a lovely vacation -- I will be adding pictures as soon as I find the bag that has my camera!!
Our plan is to increase his night time dose of Tegretol by 2ml. He's increasing the dose at night because of our experience with complete meltdowns when he has more medication during the day. So now he's getting 4 ml in the morning, 3 ml in the afternoon, and 8 ml at night. In a few weeks we'll have another blood level done and hopefully this will work. If not he said it's time to look into switching to a different medication.
We had a lovely vacation -- I will be adding pictures as soon as I find the bag that has my camera!!
Wednesday, September 19, 2007
Small Seizures?
Jack's last seizure requiring intervention was June 3, 2007. He had been having one about once per month since January 2007. We then switched his medicine schedule from 2 times a day to 3 times a day and it worked very well.
Over the last 6 weeks or so I've noticed what I think is a small seizure about 4 times. He'll start with what looks like he's tasting something --which is usually what he does when he's about to vomit and then have a seizure. His heart races slightly, his mouth moves like he's tasting something and he looks a little scared. He then smiles like nothing is wrong and moves about his business. These episodes only last seconds and don't progress any further. Afterwards he's a little clammy and pale.
We're still on vacation and he did this right before breakfast this morning. This does sound like seizures, doesn't it? We just had blood work done last week so when we return I will call his neuro and run it by him as well as check his levels.
The kids are having a wonderful time on vacation! If you want to know where we are think "Watch the Tram car please!", aggressive seagulls that steal whole pieces of pizza and chicken legs off of hot grills, Khor Bros. Ice Cream, Mack's Pizza...lol, it's the Jersey Shore!!!!
Over the last 6 weeks or so I've noticed what I think is a small seizure about 4 times. He'll start with what looks like he's tasting something --which is usually what he does when he's about to vomit and then have a seizure. His heart races slightly, his mouth moves like he's tasting something and he looks a little scared. He then smiles like nothing is wrong and moves about his business. These episodes only last seconds and don't progress any further. Afterwards he's a little clammy and pale.
We're still on vacation and he did this right before breakfast this morning. This does sound like seizures, doesn't it? We just had blood work done last week so when we return I will call his neuro and run it by him as well as check his levels.
The kids are having a wonderful time on vacation! If you want to know where we are think "Watch the Tram car please!", aggressive seagulls that steal whole pieces of pizza and chicken legs off of hot grills, Khor Bros. Ice Cream, Mack's Pizza...lol, it's the Jersey Shore!!!!
The sun rising yesterday morning -- beautiful!!
Tuesday, September 18, 2007
Saturday, September 01, 2007
Random things...
Morgan had her 4 month check up last week. I ended up taking Jack along to the appointment because he was due for a booster shot. The stars were aligned and everything went smoothly! I took Jack's wheelchair and carried Morgan in her carseat. The only trouble I had was getting them both through the door but another mom and her son came to our rescue! We didn't wait long at all and both kids did amazingly well with the shots. Morgan's 13.5 lbs and following the growth chart nicely at around 50% -- not adjusted for prematurity. The pediatrician said she would call and find out whether Morgan qualified for RSV shots. We weren't holding our breath because the cut off is usually 34 weeks and she was born at 34 weeks and 1 day. A few days later I got a call and SHE'S APPROVED!!!!!!!!!!!!!!!! No fight, no calls to make, she's going to get them!! I was totally not expecting her to! This is a relief because I am sure Jack will be bringing home lots of bugs from school this winter.
Recently I've realized that Jack does so much better with the Reverse Kaye walker vs. his Crocodile Walker. I had a pit in my stomach thinking we made a mistake getting the Crocodile and that we are basically stuck with it and insurance would not pay for another walker. On a whim I decided to check ebay. Again, someone was looking out for us! There was one in brand new condition Reverse Kaye walker for sale (buy it now) for $60. I purchased it immediately!!!!!!!! They retail for several hundred dollars. When the woman selling the walker emailed me about shipping, we started a conversation about walkers. Her son is now 6 and a half and just "graduated" to using the CROCODILE WALKER! She said her son did better with the Kaye walker at first too. It came by the end of the week and I could not be happier. I'll have to get some video of Jack strolling along our sidewalk out front -- he does amazingly well. His new DAFO's should be in any day now and not a moment too soon. His current pair are just too small. I am not sure if I am going to even wear them on him today when he goes to school.
A cute Jack story! Jack was playing in the living room and I grabbed my keys to go get something out of my car. I passed by him and he said "Bye bye" and I said, "Mommy's not leaving -- I'll be right back" which he replied "Go bye bye?" and I smiled and said "No, mommy is just going to the car honey, I'll be right back!!" I ran to the car and when I came back in Jack had both shoes lined up perfectly on the mat at the door! He really wanted to go somewhere and I obviously didn't get the hint the first time...LOL!
Well, I have to run! Morgan just woke up....told you this was very random! LOL!
Subscribe to:
Posts (Atom)
