RSV

Yesterday morning, Jordan started wheezing and having a hard time breathing. I brought him back to the doctor because I have never heard him wheeze so bad before & doc decided it was best to admit Jordan. In the middle of the night one of his tests came back and turns out he has RSV. He is going to be here at lest a few more days. We are at CDH. Jordan is not comfortable & working very hard to breath. He receives breathing treatments every 2 hours, they help clear him a little but not as much as I would like to see. Not much else to report on, hopefully soon I can have some progress to give.

The results

As I was calling the doctor & getting everyone ready to go, Jordan's heart rate calmed down. Turns out the 02 on his monitor was a bit off. He is sick but the 02 was giving a bad reading. He has something going on & doc gave an rx for antibiotic. As for justice, he has strep. Glad I took them both in. Right now they are resting on the couch watching sponge bob. Mike should be home early with 2 rx's. I stopped and picked up a new monitor on the way back too.

Jordan is sick

Jordan has something. Not sure what but he has a fever, raised heart rate & O2 is on the low end. I was really hoping to skip the sick bugs this season but it was bound to happen. Justice is sick too. He has a fever & this morning told me his throat hurts. It's tough having them both sick at the same time but it does give me clues as to what Jordan is going through.

Nursing has been scarce. We only have 1 night nurse & a day nurse called in yesterday & today. It wouldn't be so bad if I could get caught up w/sleep but it is what it is & I was able to sleep last night. I have help tonight & day help coming on Thurs. No, it's not enough but it's all I have right now. Mike is working long hours & gets home late. He helps keep Justice busy in the evening. last night they were listening to the Transformers sound track (mike bought for "Justice") and then watched Transformers for the 6th time.

As of now Jordan is resting but he isn't well. I will be calling the doctor at 9:00, we will be going in to see the doc and might have to be admitted. I wont know until later this afternoon, to see how he does through the day & if his 02 levels improve. They have slightly improved in the past few hours so lets hope it continues to improve.

Jordy games

I don't know if Jordan's seizure's are better or worse. It seemed for a short while they were getting a whole lot better, less frequent & less intense, but they have been gradually increasing again. This happened with the last med. we tried. Better for a couple weeks then back where we started. Only time will tell. The new med has helped but I am fearful it is only temporary.

On a positive note, he is one happy little (BIG) peanut. giggly, smiley, has some of his tone back to stiffen his body and play his little Jordy games. Example; when changing his clothes he will stiffen up & make it hard to takes clothes on or off, after wrestling for a bit I look at his face a he has a smirk, he knows what he is doing and has the control over his tone to do it, and it's funny to him. To me, I love to see him have a good time & most of all have control over something.

The pictures have been a bit scarce lately and, I even got a new camera for Christmas. I want to get lot's of new pictures with it and hopefully some portrait quality snapshots. It took me a long time to learn how to use all the new features and I still have more to practice with. I also learned the high quality higher MP shots require a steady hand. Something my coffee does not give me in the morning. I will get more up soon.

Merry Christmas

We all had a wonderful Christmas. Jordan was so happy & excited. He did very well too. His seizures seem to have leveled off. I hope it stays this way or even get better. Recently he started a new medicine and it seems to be helping so far. We need a bit more time to tell the true effects but, so far so good. Here are some pics.

Jordan update

Things have been pretty good here. Jordan is going through medication adjustments, so there are ups & downs with him. His phenobarb is being decreased while his topomax is being increased.
One change I have noticed is he is sleeping very well at night. The goal is to completely wean him off the pheno. He still has daily seizures and usually two rather intense seizures each day. None have needed rescue meds and they typically taper off on their own. The weaning process will take a while so I am sure there are changes to come, hopefully in a positive direction.

Jordan still takes a few naps a day but I think he is more alert when awake. His new favorite show on tv is sponge bob. Jordan rolls his eyes at "baby shows" now. No more elmo or sprout. He also gets upset if you change the channel on him & turn off any cartoon. He has been doing well in his stander & chair. And playing with his switch toys. Not like he used to, but more than he has been since the seizures started.

He wakes in the morning to say good bye to everyone then, when Justice is off to school he falls asleep again for a few hours. It's hit or miss when his teachers come by to work with him. He tries so hard to stay awake in the evening until his dad comes home. And he is always wide awake when Justice comes back home. Justice is such a good brother. He plays games with him & interacts so well to include Jordan in play. Jordan loves any attention he gets from his brother.

My hope is things keep moving in a positive direction, which they slowly seem to be. I have been working when I can & now trying to stash $ for Christmas. Jordan needs toys. I should have his wish list link on this site. He has become picky, as if it weren't already hard to shop for him.

trick-or-treat

Jordan had a great time trick-or-treating. He made it all the way around the block. It was cold but he kept smiling the whole time. By the time we got back to our house his tray had 2 pumpkins full of candy (one was Justices), they were overflowing on to his tray, & 2 cans of pop. He was king of trick-or-treating last night & had bouncy stiff & kicking legs & stiff arms (he does that when he is excited) Sorry I didn't get a picture, we had a bit of a commotion with sugar brother &, had to change Jordan in a hurry (he made a stink;) Mike got home early so we all went out together, even Chewy. The boys were power rangers & Jordan liked having a big boy costume this year.
It was a gret day & was very nice to see Jordan so happy.

Jordan has been very good lately. Still has episodes daily but none which require meds, the seizures have been stopping within a suitable time frame. He had quite a few yesterday morning but I think he was excited about Halloween & he got very excited when I showed him his costume in the morning. He has been happy and more awake & alert and, participating more with his teachers. Keep up the good work Jordan!