So, the boys go to summer school. Jameson is taking an Intro to Kindergarten class and Jackson is just taking the same thing he does every summer, just to keep him from losing skills.
Jackson loves to walk along the side of the building reading all the signs along the side of the school. "No archery on the playground." Really? It's that much of a problem they need a sign? Anyway, Jackson gets to the door that Jameson goes in and tries to skittle in with the rest of the potential 5Kers and the teacher says to Jackson, "Don't worry, you'll be in Kindergarten soon enough!" Um, he'll be 9 in a week and in third grade in the fall. I just see Jackson as Jackson and sometimes forget how the rest of the world sees him. Most of the kids in Jameson's class are taller than Jackson.
Jackson's new aversion...baths. He used to love playing in the bath and it was a challenge to get him out. Now he screams and hits his head saying, "Don't want your hair wet." Baths are now a quick dunking to get the dirt off and that's it, and even that is a battle. I'm also not allowed out of his sight. He follows me from room to room saying, "Mommy, sit on your butt." In order for him to be content, I have to be on the couch or in the computer chair or he screams and cries and hits his head. This makes it very challenging to get anything done. That appointment with psych can't come soon enough. I just don't know how to handle all of this. I hate seeing him so worked up, but I can't spend the summer on the couch.
Off to go get them at summer school.
Object du Jour: A Lego sun roof. J found a picture of a Lego sun roof while he was Googling Legos and became obsessed. I ordered some from ebay. He's been carrying it around and sleeping with it since they day I gave it to him. Thankfully, there were several in the lot I ordered, so when he eventually loses this one, (and he will) I have backup.
7.22.2013
7.19.2013
Jackson's Heart
Met with the cardiologist. He was very nice and very comforting. He wanted a repeat EKG, just to check things out again. Jackson wasn't so happy about that part, but he let the tech do what she needed to do.
Then the doctor came in and explained what "prolonged QT interval" is and what it does. It is usually caused by medication or genetics. He asked a lot of questions about how people in our families died and wanted to know if there were any unexplained deaths at younger ages. I couldn't think of any on either side. He explained that this disorder causes sudden death and will often be dismissed as something else, like if there's a car accident caused by the heart issue, it may just be blamed on the accident. Nope, not scary at all.
Dr. G explained that Jackson does have prolonged QT interval, but feels it's a borderline case. He feels that because there's no family history of it, that this may just be how J's heart beats. He doesn't want to follow him regularly, but wants us to come back if Jackson ever faints or has a seizure. I'm relieved, but still have a bit of worry.
Here's my teeny little boy covered in "square stickers."
Then the doctor came in and explained what "prolonged QT interval" is and what it does. It is usually caused by medication or genetics. He asked a lot of questions about how people in our families died and wanted to know if there were any unexplained deaths at younger ages. I couldn't think of any on either side. He explained that this disorder causes sudden death and will often be dismissed as something else, like if there's a car accident caused by the heart issue, it may just be blamed on the accident. Nope, not scary at all.
Dr. G explained that Jackson does have prolonged QT interval, but feels it's a borderline case. He feels that because there's no family history of it, that this may just be how J's heart beats. He doesn't want to follow him regularly, but wants us to come back if Jackson ever faints or has a seizure. I'm relieved, but still have a bit of worry.
Here's my teeny little boy covered in "square stickers."
Object du Jour: Shapes and the iPad.
PS We got the bill for J's tooth extraction...6,100.00. Thank God for insurance.
7.10.2013
The Pancake
Alrighty. So, Jackson's been a busy little bee the last few months. He's been to Disney World, finished second grade, started summer school, had a sleep study and been checked out by gi, ortho and physical medicine.
Disney went way better than I could have hoped. I was really concerned that it would be way too much stimulation for him. He was leery at first, but DW has this nifty little thing called a Guest Assistance Pass. This isn't a go to the front of the line pass, it allows the holder and family to use Fast Pass lines on rides that have them. With the pass, we waited 10-15 minutes for a ride, rather than 2-2 1/2 hours in the regular line. We took Jackson on most of the rides he was tall enough for. For most of them he just sat with his fingers in his ears with very little reaction. He loved the Toy Story ride at Hollywood Studios! He was also super fascinated with the characters. The character breakfast was wonderful. The characters sat with Jackson and let him touch them as much as he wanted. The pic above is J checking out Jake's hair. Jameson is now totally obsessed with Tower of Terror (we now own the movie with Steve Guttenburg, yes, there's a movie, go look it up!) He wants to build a hotel in our front yard and fund it with a lemonade stand by charging 11.00 a cup.
This school year was awesome for J. He's reading and spelling more than ever. It's really incredible. We now have arguments in spelling. LOL Unfortunately, he will have yet another special ed teacher next year. His fourth in four years. I'm really not happy about this, but what can I do? At least his wonderful aides will be the same.
GI and I came to a decision. We aren't going to work toward advancing J's eating skills. We both feel that he's plateaued in that area. We will just continue with the tube feedings and allow him to eat whatever he will take. Still mainly dry, crunchy things with an occasional Sunbutter sandwich or piece of toast thrown in. I'm strangely at peace with this decision. It just got so tiring fighting with him over every bite.
Jackson's PT was concerned about his hips and hamstrings being tight. We made an appointment with ortho who did an x-ray on his hips and found that structurally everything is good. The tech put a little rubber circle she called a "pancake" over his privates to protect them from the x-ray. He promptly started yelling, "It's a penis pancake!" I'm just waiting until he busts that one out while waiting in line at Target. Ortho sent us to physical medicine to get the hamstrings looked at. This doc felt that we need to do some stretching and then come back in 2 months and see how things look. At that time, he will make the decision on whether or not J will need botox injections to loosen up the hamstrings. Time will tell.
J's super fun new skill is hitting himself in the head. He's been doing it for the last 3 months or so. It's when he happy, mad, frustrated, excited, etc. He will hit himself with toys or shapes and I can't get him to stop. He's now progressed to banging his head on the wall or floor. I consulted the GI beh psych, who recommended we see another pysch at the hospital for help. That appointment is coming up in a few weeks and it can't come soon enough. He often will let out blood curdling screams when frustrated while he hits/bangs. This goes over really well in Michael's when everyone turns around to stare at you and your child and then glare accusingly like you've been beating him. Or so I've heard. He started doing it regularly at school too, the last few weeks before summer break. They tried putting the aide's bike helmet on him and it helped a bit. I didn't want to have him in a bike helmet all the time, so I put a Brewers cap on him. He's now been wearing it for almost 2 months straight and even sleeps with it on. He wakes me up in the middle of the night if it's fallen off. Fun.
The last, and most fun, thing J did was a sleep study to see what's going on with him. He takes up to 2 hours to fall asleep, wakes several times a night and is up some mornings by 4. Yay. They had us bring him at by 7 at night, wired him up and then monitored him the whole night while he was sleeping. He was not the least bit happy with all the tape and glue and wires. The results showed he got a good 5 hours of sleep with one hour spent awake just lying in bed. They didn't see any sleep issues or apnea, so the general thought is that the sleep issues are behavioral. Yay again. They said they will work with us to resolve this.
The sleep study did find two things. One, he's a heavy mouth breather. This we already knew. He has a small lower jaw and smaller airway, so he's been doing this forever. They suggested we take him to ENT, which we already have, so we will just monitor him. Two, the EKG run during the sleep study showed a heart condition called "prolonged QT interval". This I was not expecting. They sent us to the heart center to have a full blown EKG done to see what that showed. More of the same. So, we now have our first appointment with cardiology on Friday. I consulted Dr. Google, which never seems to work in my favor, so I'm just going to wait and see what the doctor says. Scary, but we will take it as it comes.
Object du Jour: The iPad, which he dropped on cement over the weekend and cracked the screen. It still works, thank goodness.
Disney went way better than I could have hoped. I was really concerned that it would be way too much stimulation for him. He was leery at first, but DW has this nifty little thing called a Guest Assistance Pass. This isn't a go to the front of the line pass, it allows the holder and family to use Fast Pass lines on rides that have them. With the pass, we waited 10-15 minutes for a ride, rather than 2-2 1/2 hours in the regular line. We took Jackson on most of the rides he was tall enough for. For most of them he just sat with his fingers in his ears with very little reaction. He loved the Toy Story ride at Hollywood Studios! He was also super fascinated with the characters. The character breakfast was wonderful. The characters sat with Jackson and let him touch them as much as he wanted. The pic above is J checking out Jake's hair. Jameson is now totally obsessed with Tower of Terror (we now own the movie with Steve Guttenburg, yes, there's a movie, go look it up!) He wants to build a hotel in our front yard and fund it with a lemonade stand by charging 11.00 a cup.
This school year was awesome for J. He's reading and spelling more than ever. It's really incredible. We now have arguments in spelling. LOL Unfortunately, he will have yet another special ed teacher next year. His fourth in four years. I'm really not happy about this, but what can I do? At least his wonderful aides will be the same.
GI and I came to a decision. We aren't going to work toward advancing J's eating skills. We both feel that he's plateaued in that area. We will just continue with the tube feedings and allow him to eat whatever he will take. Still mainly dry, crunchy things with an occasional Sunbutter sandwich or piece of toast thrown in. I'm strangely at peace with this decision. It just got so tiring fighting with him over every bite.
Jackson's PT was concerned about his hips and hamstrings being tight. We made an appointment with ortho who did an x-ray on his hips and found that structurally everything is good. The tech put a little rubber circle she called a "pancake" over his privates to protect them from the x-ray. He promptly started yelling, "It's a penis pancake!" I'm just waiting until he busts that one out while waiting in line at Target. Ortho sent us to physical medicine to get the hamstrings looked at. This doc felt that we need to do some stretching and then come back in 2 months and see how things look. At that time, he will make the decision on whether or not J will need botox injections to loosen up the hamstrings. Time will tell.
J's super fun new skill is hitting himself in the head. He's been doing it for the last 3 months or so. It's when he happy, mad, frustrated, excited, etc. He will hit himself with toys or shapes and I can't get him to stop. He's now progressed to banging his head on the wall or floor. I consulted the GI beh psych, who recommended we see another pysch at the hospital for help. That appointment is coming up in a few weeks and it can't come soon enough. He often will let out blood curdling screams when frustrated while he hits/bangs. This goes over really well in Michael's when everyone turns around to stare at you and your child and then glare accusingly like you've been beating him. Or so I've heard. He started doing it regularly at school too, the last few weeks before summer break. They tried putting the aide's bike helmet on him and it helped a bit. I didn't want to have him in a bike helmet all the time, so I put a Brewers cap on him. He's now been wearing it for almost 2 months straight and even sleeps with it on. He wakes me up in the middle of the night if it's fallen off. Fun.
The sleep study did find two things. One, he's a heavy mouth breather. This we already knew. He has a small lower jaw and smaller airway, so he's been doing this forever. They suggested we take him to ENT, which we already have, so we will just monitor him. Two, the EKG run during the sleep study showed a heart condition called "prolonged QT interval". This I was not expecting. They sent us to the heart center to have a full blown EKG done to see what that showed. More of the same. So, we now have our first appointment with cardiology on Friday. I consulted Dr. Google, which never seems to work in my favor, so I'm just going to wait and see what the doctor says. Scary, but we will take it as it comes.
Object du Jour: The iPad, which he dropped on cement over the weekend and cracked the screen. It still works, thank goodness.
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