Scary Saturday Night ... hoping it is NOT a JM flare ...

If you are on FB and are 'friends' with me then you most likely saw my post this morning that I would update the blog today due to a scare we had this weekend.

I am not sure yet if it is a JM Flare or something else, as we just had Connor's blood work up done this pm and have no results yet.

Backing up here is what actually happened this past Saturday:

The boys had a very busy day playing in the pool all afternoon and then playing Jedi Warriors outdoors and later indoors. Unfortunately both boys got carried away and got into a fight right before bed time and both ended up with scratches on each others back from fighting each other. Connor's were a bit worse so I put Neosporin on them. They both went to bed at 8 pm, and while they are each in separate rooms they can still look and talk to each other if both their bedroom doors are open.

About 8:15 pm Alexander came running upstairs telling us that Connor was laying on his stomach and was unable to move. I went downstairs and found Connor immobilized and in pain. I asked him what was happening and he told me he could not move and his muscles were hurting really bad. I felt his back, legs, arms and all his muscles were extremely tight as if he was having a cramp all over. I tried to massage him but he was crying and saying it hurt to much. I got Ron and we both tried to roll him over. At this point he said he could not bend his elbows or knees and that his joints hurt horribly. We decided to give him some Prednisone (0.5 ml),some Naproxen (7.2 ml) and a half of pill of Trazadone to help with his muscles, pain and help him relax and to sleep. Ron and I tried to assess his body and wrote down notes. When Connor took his medications he said it hurt him to swallow and all of a sudden his eye lids were all red, just as they were when he was diagnosed with JM two years ago.

Now I did ask him if he ever felt pain like this (thinking he would say 'yes' as when his JM was still very active), however he said he never had been in a pain like he was feeling now.

It took us two hours to get him to sleep and I felt stumped as in how could this be a flare at such a fast fast speed? It was scary but also very confusing. Oh and may I mention here that during this whole time Alexander was crying because he thought the scratches he gave Connor caused him getting sick again! So we were busy comforting both dumplings.

I went upstairs and e-mailed Dr. Soep with the notes we had taken and any thoughts she might have, plus the promise that I would e-mail again in the am (Sunday) with any updates.

I wish I could say I was surprised to have a e-mail in the morning from Dr. Soep but the truth is that we have hands down the BEST medical staff for Connor then anyone could wish for.

Dr. Soep told me she never seen a flare happen this fast and wondered if possible he over did it the day before but said we needed to get lab work done to see what is going on. She e-mailed me Michelle's (her right hand) phone number and told me to give her a call first thing on Monday morning.

Now this e-mail she send me from Wisconsin where she is vacationing with her family! Now who has a Doctor that is on Vacation, on a weekend, and that gets back with you within a few hours? I believe not many do and this is why Connor is doing so amazingly after having such a hard hit of JM two years ago! I love, adore and are forever grateful for the team Connor has! THANK YOU will never be enough!!!!!

We e-mailed several more times on Sunday, with her keeping checking in on Connor and I finally told her to turn off the e-mail and focus on her well deserved vacation! 

Need to back up again ...So on Sunday morning Connor needed help getting up and getting dressed but I did try to make him move as much as possible. I told him he needed to move and walk to try and stretch his muscles but that I would hold on to him. He was on tiptoes all the way and moved slowly. I even had him walk up the stairs and then had him lay down on the sofa while we prepared breakfast.

Now all turned around during breakfast. He started moving his arms and fed himself. He started talking a lot and when we got up from Breakfast he got up and carried his plate to the kitchen. He then started moving around the house and took his medications (I added the Naproxen again). Now here is the part that threw us a curve ball on Sunday and why I did not take him into the Hospital. After breakfast he was playing around acting all normal and only when I asked him how he was feeling and that he needed to go and brush his teeth did he falter and ask if I would help him. Now last night he was crying in pain but this morning he did not act at the same pain level so I looked him in the eyes and said to not play games with me. I knew he had just moved around normally and that he can very well move to brush his teeth now. He kind of smirked at me but off he went.

Now Alexander came and asked if he could go in the pool and we said sure. Connor came running and asked if he could and we said not until we are sure his body is doing well. I ran him a warm bath and then had him rest a bit. He kept begging about the pool so we told him he would have to do some little exercises first to see if his muscles are somewhat flexible. He did well and by the afternoon was allowed in the pool.

Now all seems back to normal other then the red eye lids and his inability to get his feet flat again, so once again he is only walking on tiptoes.

Monday morning came and while we sat at breakfast talking about me needing to call Michelle for the Blood work scheduling the phone rang with Michelle was on the line saying she had a message from Dr. Soep to get this done as soon as possible. Oh how many times do I remember of our journey with TCH what a comfort Michelle was for me during all my calls for help after our return home from our 8 week stay in the Hospital. She talked me through medicine questions, through Infusions at home etc etc. To still have her look out for Connor after 2 years is amazing!!!!

So within seconds I had the order for labs in my e-mail inbox and was scheduled for the new Children's Hospital in CSprings for 1 pm. It had been a long time since we saw all our Angels at the Center of Cancer and Blood Disorders and it was like a little reunion of friendly faces to look out for Connor for his first labs taken after his beloved Port was taken out.

He was a trooper and dressed as a Jedi Warrior so no tears at all for Connor.

He and Oma were treated to Ice Cream Sundays afterwards and I am happy to report he is doing well and was back in the pool as soon as we got home.

Michelle told me she will call as soon as the results are in so we are relaxed and as always feeling in safe hands.

How I wish every one's child had hero's like Connor's medical Team look after them! A huge peace of mind comes when you know that no matter what happens we did all we could and left no stone unturned.

So this post comes with an appreciation to all the Doctor's, Nurses and Medical Staff who kept us calm all weekend and are leaving us calm right now. There is no money that can buy you this kind of feeling!

I also want to thank so many of you who send e-mails, text messages and posting on FB asking about Connor and sending prayers and thoughts. To have so much love and support is humbling! Hugs to all of you and THANK YOU!!!

There is one part of me that is sad in a way that even if this is not a flare and Connor is safe, the fact is that with a disease like JM that has no Cure there is never a true safe place to be. Even when all is going so well there is always the chance of the JM 'waking up' and causing pain. Maybe not now, tomorrow or this year but without a Cure he can always be hit by it without any notice. So please remember to be a voice and support CureJM.org!!!!

Hugs,

R A C A