Jackson's button fell out!!
I noticed he had some wetness on his tummy but I thought it was just drool (he drools a lot in PT). A little later I noticed his shirt was wet and brownish...well then I thought the button was just open and leaking so I lifted up his shirt and the button fell right out! His PT and OT were quite shocked to see that!!! So was I but not as much as they were.
The balloon was intact but low, and it was way past time for me to change it out anyway. I took his bib off and put it over the stoma because it was leaking a lot and told his OT to hold it there while I ran to grab the bag on his chair in the other room. Luckily I carry an extra button, syringe, and lube in there. I changed it out really fast without any problems. Also, luckily I have a full change of clothes in the bag too as his whole outfit was rather pukey smelling.
Wednesday, July 23, 2008
Friday, July 11, 2008
Guess who visited our house last night!
The tooth fairy!! Yes, Jackson finally lost his first tooth that had been loose for months. I noticed it was VERY loose and he had been wiggling it with his tongue. I asked him if he wanted me to pull it out for him, and he answered yes. I was really nervous, but it came right out with one little pull.
Since it is his bottom tooth you can't see it unless you pull down his lip a little bit.
He is very proud! We have been hyping it up since it has been loose for so long.
The tooth fairy brought him money since he really has never handled or looked closely at money before. He got one of each: paper dollar, dollar coin, quarter, dime, nickle, and a penny. Then I helped him put it in his piggy bank.
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In other news....we are finally going to be getting a little bit of respite! We had been waiting for a while on some one to fill our hours. We were originally told we were getting some very tiny amount of hours, I think she said it was 60 hours per year. When she called yesterday she said she had someone who wanted to work Mondays from 2-8pm. She said the hour limit was going to be waived. She is going to set up a meeting for sometime next week. Hopefully she will be reliable and good with Jackson. It will be nice to have someone to interact and play with him and just pay attention to him for a few hours.
Since it is his bottom tooth you can't see it unless you pull down his lip a little bit.
He is very proud! We have been hyping it up since it has been loose for so long.
The tooth fairy brought him money since he really has never handled or looked closely at money before. He got one of each: paper dollar, dollar coin, quarter, dime, nickle, and a penny. Then I helped him put it in his piggy bank.
____________________________________________________________
In other news....we are finally going to be getting a little bit of respite! We had been waiting for a while on some one to fill our hours. We were originally told we were getting some very tiny amount of hours, I think she said it was 60 hours per year. When she called yesterday she said she had someone who wanted to work Mondays from 2-8pm. She said the hour limit was going to be waived. She is going to set up a meeting for sometime next week. Hopefully she will be reliable and good with Jackson. It will be nice to have someone to interact and play with him and just pay attention to him for a few hours.
Sunday, July 6, 2008
Long time no update
Jackson was pretty sick with a virus not this last week but the week before. He was home from school from Tuesday on. He had a high fever, tons of vomiting, and just felt terrible in general. We were planning to go out for our anniversary the 25th, but were not able to because Jackson just felt too bad.
This week he is doing a lot better and he went to school all week. He is still having some GI issues beyond the ordinary though. It seems to slowly be getting better though.
We took him to fireworks for the first time this year. He has never been able to stay up that late before. I was not sure if he would even be able to see them (cortical vision impairment due to brain injury). But we thought we would give it a try. He looked really sleepy and I thought he might not be able to stay awake, but once the fireworks started he perked right up. He could at least see some of it and I think he really liked it. When a particularly exciting part of the show happened he made some appropriate appreciative noises and he smiled through a lot of it.
This week he is doing a lot better and he went to school all week. He is still having some GI issues beyond the ordinary though. It seems to slowly be getting better though.
We took him to fireworks for the first time this year. He has never been able to stay up that late before. I was not sure if he would even be able to see them (cortical vision impairment due to brain injury). But we thought we would give it a try. He looked really sleepy and I thought he might not be able to stay awake, but once the fireworks started he perked right up. He could at least see some of it and I think he really liked it. When a particularly exciting part of the show happened he made some appropriate appreciative noises and he smiled through a lot of it.
Wednesday, June 18, 2008
Test drove a van today
We were checking out new vans getting ready to go to court and ask permission to buy one. It will be better if we have figures prepared including what we can get for a trade in on our current van. So the guy we spoke to said he thinks the Honda Odyssey is the best choice for us. We definitely need something a little roomier than what we have now (Chrysler Town and Country) with Jackson's chair being so large and in tilt all the time. I was originally thinking about a full size van but with gas the way it is now that is just not practical. Of the other 2 vans we were thinking of (Toyota and Honda) he said the Toyota is actually less room than what we have now in the middle. The Honda has quite a bit more length in the center (although not as much as I'd like) and some nicer features (like the middle windows roll down so the poor kid can get some air!). I drove it and it was nice so we are having them work up some numbers for us. We are also going to the competing mobility van place next week to get some numbers from them.
Hopefully the judge will just let us trade in for the new van outright with no problems. The county courts seem a little more reasonable than the federal anyway.
Hopefully the judge will just let us trade in for the new van outright with no problems. The county courts seem a little more reasonable than the federal anyway.
Friday, June 6, 2008
Family Fun Day at school
Well, unfortunately it was not so fun for Jackson this time. He already wasn't feeling well when we were outside waiting for the bus this morning, I think it was just too hot even though it was only 8:15 am. When I got to school he was looking kind of like he did not want to wake up, but also just unhappy in general. He did not feel hot to touch or look flushed though.
Then it was time to go out to the parade, which is a loop around the school. They had his chair very nicely decorated again this year.
After the parade, we had to hurry and get over to the relay race area since Jackson was scheduled to be first in the go-bot. Poor kiddo would not open his eyes though...he wasn't asleep, he just refused to open his eyes and you could tell he was not feeling good. So we let Karuna go ahead and hoped that Jackson would feel better so he could have a turn later on.
Once I got him into the shade he opened his eyes a little, but still not feeling like getting into the go-bot. Poor kiddo, he had a really good time racing last year. But he still got to race in his wheelchair, that is his OT pushing him in the picture. You can see how miserable he was.
After the race, I tried to get him to tell me what he wanted to do, but he was not talking. Finally he did somewhat smile when I asked if he wanted to go look at bubbles with Jaiden (one of his classmates) so we did bubbles for a few minutes. He also got a goldfish painted on his hand. But he was not feeling good still so I took him home.
It really must have just been the heat because after a few minutes in the van with the AC cranking he perked right up...not only opening his eyes, but also singing along with his tunes. I feel so bad for him.
Then it was time to go out to the parade, which is a loop around the school. They had his chair very nicely decorated again this year.
After the parade, we had to hurry and get over to the relay race area since Jackson was scheduled to be first in the go-bot. Poor kiddo would not open his eyes though...he wasn't asleep, he just refused to open his eyes and you could tell he was not feeling good. So we let Karuna go ahead and hoped that Jackson would feel better so he could have a turn later on.
Once I got him into the shade he opened his eyes a little, but still not feeling like getting into the go-bot. Poor kiddo, he had a really good time racing last year. But he still got to race in his wheelchair, that is his OT pushing him in the picture. You can see how miserable he was.
After the race, I tried to get him to tell me what he wanted to do, but he was not talking. Finally he did somewhat smile when I asked if he wanted to go look at bubbles with Jaiden (one of his classmates) so we did bubbles for a few minutes. He also got a goldfish painted on his hand. But he was not feeling good still so I took him home.
It really must have just been the heat because after a few minutes in the van with the AC cranking he perked right up...not only opening his eyes, but also singing along with his tunes. I feel so bad for him.
Sunday, June 1, 2008
Happy birthday and Hallelujah!!
Yesterday my baby turned 5 years old!! We had a little party with Dave and Kari in the evening and I think Jackson had a fun day even though it was pretty low key. He got to talk to a lot of family on the phone, open presents, go on a nice walk with daddy, blow out candles, and get sung to. Here are a couple pics. The first one is the gift from Dave and Kari which was the Captain Underpants Collection (books). He thought the word underpants was pretty funny. The second picture is one of the presents from mom and dad. We offered him tastes of cake and ice cream but he did not want any.
But (maybe you ought to sit down for this) the best birthday present of all is that THE MONEY CAME!!!!! I honestly thought this day might never come but here it is. Now we have to get a lot of stuff ready for court, we have to get permission from a judge to spend any of the money from Jackson's estate.
But (maybe you ought to sit down for this) the best birthday present of all is that THE MONEY CAME!!!!! I honestly thought this day might never come but here it is. Now we have to get a lot of stuff ready for court, we have to get permission from a judge to spend any of the money from Jackson's estate.
Thursday, May 29, 2008
Got it.
It is a manual lift, not at all what I would pick myself, and the sling is also not my first choice by far not to mention quite large for him...BUT, it does work so YAY!
Here he is in our first attempt. He looks thrilled don't you think? He did laugh as I was pumping him up though.
Wednesday, May 28, 2008
Interesting...but good.
So just now the phone rang and it was Bob from RehabTech asking to set up a time to deliver our hoyer. (?!?!) I asked him if it had been approved and he said this was a loaner until we could get it approved. I guess all those (unreturned) phone calls made a difference after all. He is coming tomorrow between 1 and 3. Yay!! And I made sure this sling has head support.
I think I'll call Shriners tomorrow and see if I can drop off the other one in the morning. (No, I haven't given it back yet.) Otherwise we won't have room for the new one...these things are big!
Oooh, and that means I can call our respite lady and get that set up since they were waiting for us to have a hoyer before they started. We will get 5 hours a month of respite, with a possibility of getting more in the future. It will be nice to have someone to play with and hang out with Jackson a couple times a month.
I think I'll call Shriners tomorrow and see if I can drop off the other one in the morning. (No, I haven't given it back yet.) Otherwise we won't have room for the new one...these things are big!
Oooh, and that means I can call our respite lady and get that set up since they were waiting for us to have a hoyer before they started. We will get 5 hours a month of respite, with a possibility of getting more in the future. It will be nice to have someone to play with and hang out with Jackson a couple times a month.
Sunday, May 25, 2008
Wow, this is amazing!!
We went on a little picnic this evening since it was a lovely day. I was eating a pear and Lee was eating an apple. Jackson started grumbling and I asked him what was wrong. He opened his mouth like he wanted some fruit. I asked him if he wanted to taste some pear and he said he did. So I bit off a little piece for him to taste. He opened his mouth so big for it and not only tasted it, but he also wanted to chew on it. He really liked it, although it made him drool like crazy. He had about 6-7 tastes of both apple and pear. He did manage to bite off a couple little pieces which we grabbed out of his mouth. I told him that we were all done tasting and we could do some more tastes tomorrow and he gave this noise that clearly indicated that he was NOT done tasting. It was so amazing and funny!
Some of you who may be less familiar with Jackson might be saying "what's the big deal?" so I will give a little history. When Jackson first got sick we did give him some purees by mouth and we did feeding therapy with him in hopes that he would eventually take more by mouth and less by tube. But as time went on, each time he would take food orally he would gag and vomit nearly every time. It was kind of like torture for him so we just gave it up. He has been 100% tube fed for years. We would sometimes give him smells of some foods if he said he was willing which would often cause him to gag. For him to request a taste of food is huge and for him to taste it, smile, and ask for more just blows my mind.
Some of you who may be less familiar with Jackson might be saying "what's the big deal?" so I will give a little history. When Jackson first got sick we did give him some purees by mouth and we did feeding therapy with him in hopes that he would eventually take more by mouth and less by tube. But as time went on, each time he would take food orally he would gag and vomit nearly every time. It was kind of like torture for him so we just gave it up. He has been 100% tube fed for years. We would sometimes give him smells of some foods if he said he was willing which would often cause him to gag. For him to request a taste of food is huge and for him to taste it, smile, and ask for more just blows my mind.
Thursday, May 22, 2008
Friday, May 16, 2008
Hero Daddy
Lee has been a total hero dealing with trying to get more than 10 zofran pills at a time from our new rx insurance. He spent the good part of 2 days working on it, but the people at the rx company are complete morons who have no idea what the process is to get this done. They keep telling him different (wrong) things. Hopefully things will be worked out by Monday with it. And GEEZ!!! I am so happy I stashed those extra pills for him because Jackson would be miserable by now without them. FYI: This prescription would be over $4000/month if we were to pay for it out of pocket.
Lee is also getting a dose of what I go through since I am usually the one to deal with insurance issues for Jackson, which obviously happen a lot. I am really thankful that he volunteered to deal with this one though.
When we get the settlement (which I must post about separately-grrrrrr!!) there is something written into the lifecare plan called a medical administrator. The way they defined the medical administrator was really ambiguous and according to their definition we could get a medical/insurance advocate with that money. Then we would have a person available anytime to deal with all these time-sucking, mind-numbing issues for us...wow!
Lee is also getting a dose of what I go through since I am usually the one to deal with insurance issues for Jackson, which obviously happen a lot. I am really thankful that he volunteered to deal with this one though.
When we get the settlement (which I must post about separately-grrrrrr!!) there is something written into the lifecare plan called a medical administrator. The way they defined the medical administrator was really ambiguous and according to their definition we could get a medical/insurance advocate with that money. Then we would have a person available anytime to deal with all these time-sucking, mind-numbing issues for us...wow!
Tuesday, May 13, 2008
Stem cells...
An online friend posted a really interesting and encouraging story about a little boy with CP whose parents had banked his cord blood. Later after he was diagnosed, they were able to infuse the stem cells from the cord blood into his body via IV. After the infusion he made remarkable improvements in a very short period of time and continues to improve. He is not the only child who has had success with this, just the most recent in the media. Here is a story and video.
Anyway, this is being done at Duke University by a doctor named Joanne Kurtzberg. While we decided against banking Jackson's cord blood because of the high cost and the very slim likelihood that we would ever need it, we have decided that we are going to bank the cord blood of Jackson's sibling. While all the examples I have seen have used the child's own cord blood for an infusion, it is my hope that soon we will be able to use a sibling's cord blood for the same thing with similar results.
If you are not involved in a clinical trial, it is very expensive to do a cord blood infusion (about $12,000 from what I have seen) and of course insurance will not pay. Still, we will have the money from the settlement and hopefully one day in the not so distant future, we will have the chance to do this with Jackson.
Anyway, this is being done at Duke University by a doctor named Joanne Kurtzberg. While we decided against banking Jackson's cord blood because of the high cost and the very slim likelihood that we would ever need it, we have decided that we are going to bank the cord blood of Jackson's sibling. While all the examples I have seen have used the child's own cord blood for an infusion, it is my hope that soon we will be able to use a sibling's cord blood for the same thing with similar results.
If you are not involved in a clinical trial, it is very expensive to do a cord blood infusion (about $12,000 from what I have seen) and of course insurance will not pay. Still, we will have the money from the settlement and hopefully one day in the not so distant future, we will have the chance to do this with Jackson.
Monday, May 12, 2008
Never thought I would miss Caremark.
Our new insurance rx plan is denying Jackson's ondansetron (nausea medication). They will let him have only 10 pills at once (for $15 a pop) which is only 1.5 days. Yes, it is an outrageously expensive medication but with our old plan we could get a full months worth for only $10. I guess I know what I am going to be doing tomorrow, hopefully we can get it covered somehow. He really really needs that medicine.
Luckily I do have a little bit of it stashed for a rainy day. Maybe a weeks worth.
Luckily I do have a little bit of it stashed for a rainy day. Maybe a weeks worth.
Still have not heard back
I am seriously irritated (AGAIN) with this guy. Let's see...I contacted him on the 1st. He said he could find out what I needed to know and get back to me on the 2nd. It is now the 12th. I have called him multiple times and have still not heard back.
This happens every time with him! It makes me so mad! One time I had Lee call and leave him a message because I got tired of it and guess what...he called back right away! Jerk.
This happens every time with him! It makes me so mad! One time I had Lee call and leave him a message because I got tired of it and guess what...he called back right away! Jerk.
Thursday, May 8, 2008
Place your bets!
I called our equipment vendor last Thursday to start the process of getting a lift through our new (as of May 1) insurance since it will be a while yet until we get the vaccine money. He said he would look into it on Friday and get back to me. Shockingly (<---read sarcastically) he did not call me back Friday. I waited until this morning to call him and got his voice mail. He did not call me back today and it is now 5pm. Shall we take bets as to when he will return my call? Or if he completely forgot about the fact that I called him last week until I called him again this week? (Not the first time that has happened.) Why do I not find someone else? Because it is really hard to find someone good who knows what they are doing. If I knew the next person would be better I would switch. It sucks.
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