A week of JDM ... Oh the highs and lows ... That's Life :)

One week with us and you truly will be up for some free entertainment! This blog truly goes back to the roots of why we started it ... Our Journey thru JDM...

I am going to start about telling you some wonderful news on Connor's battle against JDM. Remember how on December 21, 2010 he had casts put on his feet to help stretch his muscles? We were then told that they will be on his legs for 8 to 10 weeks, with a change in casts and stretch every two weeks. He had his first change of casts done on January 3, 2011 and was told then that he was doing very well and with any luck he might only need the casts for 6 to 8 weeks :) Well, we went in on 18th of January for the next change and were completely blown away by the news that Connor had improved so much that the casts were coming off after just 4 weeks!!!! Talk about once again Connor being amazing in his fight against JDM! In every step of our journey we were faced with sad and sometimes devastating news but almost in every case Connor showed us that he and his body were ready to fight and he recovered on each level faster then the Doctor's predicted. We have been told in Chicago, Washington D.C. and Denver that he is truly amazing in his push for remission. Yes, we are still far away from even talking Remission but we are aiming for it and we are very hopeful that this word will enter our daily vocabulary at one point :)

We also had some good news in the way that our Excursion was repaired on Tuesday as well and is running beautiful once again. The final cost was $1027.48! so much better then $3950.00 if I might point this out once again! :):):) So you see Tuesday the 18th was a really great day for us.

Now yesterday, Wednesday the 19th, started out a little cautious. Both our dumplings showed the signs of head colds and you know how even colds are not a pleasant sight in a home that deals with JDM, plus we were truly getting excited about our trip to TX for the weekend so I did not want to see runny noses and coughing. I am of course also nervous about the Reading Group the boys started attending last week. The boys keep telling me that there is always one kid or another in their class that is sneezing or coughing. You know if you live a 'normal' life then a cold is not that big a deal but for us it is so we walk on eggshells around them.

So lets jump forward to 6 PM last night when Connor told us he was feeling very sick and did not want to eat anything. He went and sat on the floor in front of the toilet until Ron got him a bucket so he could sit on the sofa instead. He started throwing up shortly after that and did truly not stop until about 10:30 PM. This also included diarrhea and headaches. I went and took his temperature and it read 100.3'F. Not to bad, so we figured if he could just go to sleep he would be fine. Ron gave him a big bottle of water by the bed and when I woke him up at 6 am so we could drive Ron to the Airport we found all the water gone and Connor laying in his bed crying so hard because he said his head felt like cracking open. I took his temperature again and he was at 102.2'F. Ron went and took himself to the Airport and I gave Connor some Tylenol and he went back to sleep. He woke up at 8:45 am and said he was feeling better and that's when I saw his lips. They were swollen and had liquid filled blisters all over them. I posted the picture above so you know what it looked like. Luckily Connor has a great Rheumatologist here in Colorado who was in constant e-mail contact with me since 6 am this morning, and I am also so so so grateful to the JM Mom's group on Facebook. They were a rock today with all the feedback, support and even laughs I got from my postings there.

So after talking with Ron, who was on his way to DFW we decided it was safer to take him to the Memorial Hospital ER. Once again the ER staff was exceptional and we arrived at 11:30 am and did not spend one minute in the waiting room. After they got Connor's name and saw in the computer about his compromised immune system we were moved right away to a room. Now I admit I wish we had a Pediatrician we trusted and I would have rather gone there but as it stands we are still without one and after our disappointment last year we never got up the energy to find one that understands the complexity that comes with dealing with a child who has JDM.

Now, I also want to point out that to most parents it would seem extreme to be so on edge just because your child has a fever, throws-up, diarrhea, headache and blisters on his lips but there is one symptom no Mom or Dad of a child with JDM will take lightly and that is seeing a fever over 101'F, especially when your child's immune system is compromised and the medication he is one could mask any infection that might be running through his body. We were told when Connor first got sick that a fever of 101'F could really translate to 104'F or higher.

To make a long story short, before we left the house for the Hospital I gave Connor his am medications because he said his tummy was feeling better. One of them was the Naproxen who would also help against the fever and headache. Well, we had a 1 hour and 15 minute drive and when we arrived Connor said his headache was gone and he had also pulled off all the blisters on his lips. So what I had was a description of symptoms and a picture of what he looked like about 2 hours earlier. His fever also was down a bit thanks to the Naproxen and Tylenol in his system, so we got a room and Connor got some Zofran for the nausea and the waiting started. The boys got each Popsicles to eat and after about one hour the port was accessed to draw blood. Interestingly the blood draw went very well compared to Tuesdays at TCH when we had to stop drawing blood due to the poor flow. Here was my son who we were told today had blisters on his lips due to severe dehydration but who's blood was flowing nicely, not something that usually happens when you are dehydrated ... oh, well.

So then we waited and waited and when the Doctor checked in again Connor told him he wanted to go home now. We were told that the blood work was not back yet and that the Blood Culture would take 48 hours, but since he was now looking good and drinking we could get released. So we packed back up with a prescription of Zofran and headed for home 5 hours after checking into the ER. Now Connor had not eaten for almost 24 hours other then a 1/3 of the Popsicle so I asked him what he wanted ... his wish was fried chicken! Figures, right?

We went to Popeye's and when he saw they also had fried popcorn shrimp he went and inhaled a basket of those.

Now the sad news is that this all put our trip to Texas on hold. For one I do not want to travel when my boys are not 100% and also I do not like to travel when I don't know what exactly is wrong with Connor. Now when we discussed this Connor cried at first but I told him that this was not his fault and things happen that we have no control over. He then looked at me and said "Mom, it really is not our fault at all and I guess that's just life" ... yes, it's life! and we just have to roll with it.

Of course my husband called us from San Juan on our drive home and said what time we were leaving for Texas tomorrow ... pretty funny :)

and another bright spot today was the fact that the Excursion drove like a charm.

So all this in a three day span so I guess I should hold my breath and see what else might happen ... we still have three full days left to end the week ....

I need to point out again how wonderful Alexander was through all of this. It is truly no fun sitting for 5 hours in a Hospital room, no matter that there is TV. It is boring but once again he was a great brother being so supportive again of Connor. I just so love and admire my two babies!

Also, today was my Papa's Birthday and in a perfect world we could have been in Germany to celebrate with him and then end the day with a big Party for my Cousin's Andrea 50th Birthday Bash .... just to think I could have been partying and drinking to much wine and beer today plus eat myself crazy with Birthday Cakes? --- truly something is wrong here ;)

Hugs,

R A C A