Friday, October 31, 2008

the "bug" part 2

Last Friday, Jacob had the stomach bug/fever. Well, last night Daniel had the "fever"! And what a fever it was! I am hoping this was part of the bug that already went through this house and nothing new. Daniel had been fine the entire day yesterday. At about 8:30 last night he spiked a 104 degree fever! He had the chills and was nodding off to sleep. By 9:00 we were in the ER. They checked him for everything from the flu to strep throat, ear infection, RSV and nothing showed. They took bloodwork and the only thing that showed up was his white blood cell count was elevated. He was given two shots of antibiotics and we were finally sent home at 3:00 AM this morning. What a long night. I slept about an hour last night. He did get to sleep some in the ER so he was up at his usual 7:00 time. With trick or treating tonight I am hoping he still feels better. I am keeping up the tylenol and he is fever free at the moment. I think this is the third year in a row that he has been sick on Halloween. Popular week!

Monday, October 27, 2008

Two appointments, one day!

Today we left early this morning in what we thought was going to be just Jacob's orthopedic appointment. When we arrived at Floating Hospital in Boston at 10:30 this morning there was a very Full waiting room. When I was checking in with the receptionist I spoke to the receptionist in Rheumatology who was also checking patients in. I knew that the orthopedic doctor was very backed up so I asked if Dr. Miller, who is the other ped. rheumi could squeeze us in instead of seeing Dr. Lopez on Thursday and she was able to do it!

We saw Dr. Miller first. She is really nice. I really don't mind Jake seeing either doctor they are both very good. She said everything was looking really great. She didn't remember his entire history but when I mentioned the synovectomy she said oh ya it was the case that it was suspected to be PVS syndrome. Jacob's knee was one of those cases that was not in the ordinary description of what JRA looks like. (you may recall the biopsy and uncertainty of the MRI back in March). Anyway, she said he looks great today! The only concern is still the small leg length discrepancy and the crooked back. No obvious swelling anywhere. (thank God) I did ask why he was still limping occasionally after running and sitting for long periods. She said his knee will never be"normal" after all he has gone through. That is kind of discouraging for a nine year old.

We went off the take a scan o gram of his legs.

After the xray and waiting 2 1/2 more hours we saw the surgeon. (very long wait, busy man though!) Dr. Braun reviewed the xray and said it was only maybe a half an inch difference in length. Not much to be concerned about. It is to be watched very closely though. The left knee bone is still overgrown. The width is larger if you look at both knees. Again not much to be concerned with. The back on the other hand, is curving quite a bit. The doctor said this can happen because of the leg growth because of the JRA but the lengths are not that far off to do this. Jake's back could be a entire different issue.

We are scheduled just before Christmas to go back to both doctors. Xrays are going to be taken of his back then to review the scoliosis. The meds are to remain the same. Those are not going to be changed because Jake's eyes are running the show. These meds are still working to retrain his immune system for the complete two years to keep the uveitis at bay.

Saturday, October 25, 2008

A little stomach bug

I didn't think I would be posting until after the orthopedic appointment on Monday. I figured I would fill you in on last night's excitement. Yesterday, when I picked Jacob up at school he was complaining of his stomach hurting. I knew the night was going to be fun. At about 6:00 he started vomitting. The stomach bug has hit. From six until about 1 o'clock this morning he laid with me in bed and threw up every half an hour or so. I was getting worried that he would get dehydrated. He didn't thank God! He is doing better today but still quiet and not eating. I held off giving him his methotrexate last night because I was worried that it would make his stomach hurt and feel worse. I was going to give it today but he is still not feeling well so I decided to skip it. I hope it doesn't cause any issues. Hopefully he is on the mend today!

Wednesday, October 22, 2008

An update and some thoughts

I know I haven't posted too much lately. I guess that is because there isn't as much to say, which is a good thing! Fall has come here along with some very cold weather! The heat has been turned on. I am dreading thinking about paying those heating bills.

Jacob has been relatively stable. Next Monday we have to go into Boston to see the orthopedic surgeon. He is going to do xrays to check the growth of Jacob's leg bones. I am very curious to see what the result is. I still think the leg lengths are off. I can see it in the way his shoulders are when he is standing. I am going to have the doctor look at the scoliosis also. I am also wondering if we should do another MRI of his knee. Jacob is still have pain with it. After soccer last weekend he was limping like crazy. He also has complained that if he sits to long on the floor he is getting stiff and sore.

Next week is also the rheumatologist appointment. It is on Thursday. This will be good timing to review what the orthopedic says. I am also going to have the Rheumatologist see what's up with his fingers. Jacob has been using a pencil with a thick grip on it and he says he is doing much better in school with it. His writing is awful though. He used to write so much neater. I don't know if it is because of the stiff/sore fingers or just laziness.

I just wanted to comment on the map I have on the side of my blog. I think it is so cool that people from all of the world have been following my son's journey. The rarity of the disease makes us all look for any info we can get our hands on. I started this blog because of finding "Anna's journey"when I was desperate to read anything I could to see what we were in for in regards to uveitis.
You can read anything you want in a book but I think reading other people's stories on the real life of fighting these diseases is so much more accurate!

Not only do the blogs help me to understand how our children and their families cope with chronic illness, the support group that I frequent ( have amazing moms who can answer any question imaginable. Out of the group of us we have all had experience in every aspect of Juvenile arthritis. So any question we have there is always an answer. Check out the site if you would like!

P.S. Shot day today! Jacob didn't remember this morning. Whew. He has asked the last few mornings if it was the day. So I will spring it on him when he gets home from school. The quicker it is done when he gets home the happier he will be for the rest of the night!

Wednesday, October 8, 2008

Fall in New England

These picture's are from my deck. I thought I would share them.
The leaves are already starting to fall off the trees. :(

Humira shots

Can I just say it one more time.. I really hate giving this shot! It is still not getting easier for me or Jacob! Tonight's shot pain seemed to linger a little longer. I can just picture the med creeping into his muscle burning! !Yikes!!

Don't get me wrong I am so very thankful it is available to help Jacob but can't they make it a little less painful? It would make life so much easier!

Sunday, October 5, 2008

finger pain

Over the past week or so I had noticed Jacob holding his fingers a lot. While waiting for the bus, I asked him one morning last week if they were hurting him. At first, he said no. I started to bend them to see if I would get a response. As I was doing this he pointed out a few fingers that were very sore. I asked him if they hurt at school he said they did when he used a certain pencil. I let his teacher know that he has complained about his fingers and asked her to keep an eye on him. When I picked Jacob up from school on Friday he said his teacher gave him a pencil grip. He was very happy and said his fingers didn't hurt today!! (thanks Mrs. P-E!!)

It is so funny, well not really funny, that he was in pain and didn't say a word about it until I brought it up. Once again an example of how a child learns to live with chronic pain. :(

Just yesterday, I brought the kids to a park and Jake was running around playing and decided to go across the monkey bars. I could see he was struggling and when he jumped down he immediately grabbed his fingers. He said that they hurt badly.

The rheumatologist appointment is in a few weeks. I am curious to see what he thinks.
It is tough to see this happening because it is going on despite the heavy duty medications he is on. I don't know what the doctor would do about it. I don't know what he could change. So basically a nine year old has to live with chronic pain???
I think the right fingers look a little swollen

What a frustrating disease!

Wednesday, October 1, 2008

Visit with Dr. Foster

The Humira is doing it's job! Jacob's eyes remain clear today! Jacob did really well at his visit today. They were even able to check his pressure in his eyes. They haven't been able to get the reading for the past few visits, because he couldn't do the test. He is very sensitive to anything touching his eyes. The pressure readings today were 13 in his right eye, 15 in his left eye. Well within normal range. I asked the fellow today why it is so important to check the reading when he is off all steroid drops and his eyes are clear. He said that scarring can occur in the eyes from the damage the uveitis could of done initially. So his eyes will still need to be checked for glaucoma each visit. Return visit in 8 weeks!