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

Pool Time, JA Camp, Estes Park, Boulder etc etc

Oh it sure has been a while since I posted. What a few busy busy weeks we had but most of it has been a lot of fun, some drama but nothing that took away the joy of Family life.

A few weeks ago we all went to a little German Bierfest close by Denver that was a lot of fun as in seeing my parents dance again, watching the boys dance a lot and entertain the crowds, as well as watching Connor and Alexander enter a Bratwurst eating contest. Now tell me can you show me anyone that can not eat 20 Brats in 5 minutes? - haha

Luckily for C & A they got to enter as a Team and each had to eat 'just' 10 Brats each in 5 minutes. Sadly they did not win, which of course was also a good thing as I might had to deal with some extreme nausea on our drive home had they gotten first price ;) They each ate about 6 Brats and the winner was a man from Austin, TX, who ate 16!

We also were able to set up my so anticipated Pool and I am proud to say I was the first one in ... even thought the temps were freezing. Colorado does not really offer the heated water that Texas did but I love it. We were at temps of 68'F but before our last weeks adventures began my husband put on a Solar Blanket so now that we are back home I have to check and see how warm it has gotten ;) In addition to the Pool we also had our Sauna installed. This was originally planned when we build the house four years ago but better late then never. It is a true little luxury which we have enjoyed several times already.

But back a couple of weeks, the boys entered Sports Camp from July 16 to 20. This year they chose Soccer, to their Mom's delight! Finally some kind of German DNA that makes an appearance. Not really sure how well they really got the concept but they loved it so that's progress.

Right after Sports Camp, as matter of fact the very next day, July 21, all of us loaded up the car (with the exception of Ron who had to go back on call in DFW) and headed to Estes Park, CO, to drop of Connor at the JA Camp. Now this was organized through the Rheumatology Department at The Children's Hospital in Aurora, CO, and Connor had been begging us to sign him up for this Camp for months. It is located at the YMCA and the drop off went very very well. As a matter of fact, my super clingy son Connor, who has never had a sleep over pretty much pushed me out the door after being set up in his room and meeting his room mates, Darian (sp) and Christopher.

Oh, JA stand Juvenile Arthritis and since it is through the same Department as Connor's Treatments and also an Autoimmune Disease he qualified to be a part of it with his Juvenile Myositis. He was the only child with JM but lucky for him and me we figured he was going to be okay as his so beloved Dr. Soep was part of the Camp Doctors.

Now we met the Parents of the other two children who were going to share a room with Connor. Both boys were also 8 years old, knew each other already but were at the Camp for the first time as well. One of the boys received a Cell Phone from his Parents and they programed my number so that Connor would be able to call us when he felt the need.

I thought it was a very nice thought but also were a bit worried as I know my son and his need to stay in constant communications with me. I was not sure if this would be a benefit or a disadvantage.

Well, I did receive about 4 phone calls the afternoon and night after we dropped him off. The last one that first night came at 11:15 pm, with him crying and begging me to come and pick him up. Now my reasoning with him why I could not just come pick him up was his thinking we were at home, 3 1/2 hours of driving time away. However, I did not tell him that Oma, Opa, Alexander and I were in Boulder, CO, for the next 5 nights, only 50 minutes of driving time. I figured he just was scared that first night as he never had been apart from me or his Dad. As it happened I did get a call again at 6:45 am the next morning with him being all exited about the events they were doing that day. Boating, Swimming, Arts and Crafts!

On our end we had lots of fun as well as we toured the Butterfly Pavilion, toured the Celestial Tea Company and Pearl Street. We indulged in lots of yummy foods and spend almost 2 hours in the pool and hot tub. I hate to admit it but goodness how EASY it was focusing on just ONE child. The whole mood Alexander was in was amazing. He was focused and so happy and bubbly. Exactly how I remember him before Connor got sick.

Sadly around 10 pm the phone calls from Connor started again at first with him just sounding a bit sad but by 11 pm him having a meltdown and begging me to come get him. I finally told him that he should try to go to sleep and that he should call me in the morning if he still wants me to come get him I will. I got to talk to the Teenager who was supervising the kids during the night and he was asking me if Connor could get some Benadryl to calm him down. Now Connor did get his Trazadone (sleep aid but for some wicked reason he was not reacting to it). Now I did tell them that I am not sure Benadryl would work as he never fell asleep at the Hospital when he received it prior to his IVIG Infusion but maybe it would calm him down. I did not hear back from them or Connor that night but at 6:30 I had a voice message from Connor that they were going Horseback riding and swimming and that he wants to stay!

So, the four of us got ready to spend the day at the Rocky Mountain National Park and then planning on touring the Stanley Hotel, experience the History and Ghost Tour followed by Dinner. No true Phone reception in the Park BUT we were around Estes Park so only 5 minutes away from the Camp. I had a feeling that this would be Connor's last night at Camp so decided to stay close.

I did get a call that afternoon, not from Connor but from Dr. Soep. She told me that Connor had mentioned several times during the day that he wanted to go home and that it would be better if we came to get him. So by 4 pm we arrived at the Camp to find a crying Connor who DID NOT WANT TO LEAVE! However, we also found his two roommates who wanted him to leave. One of the boys actually said if Connor would not leave he would as he was so exhausted from not getting any sleep at night due to Connor's crying throughout the night. To get Connor to pack up and in the car was an absolute nightmare. He cried and yelled about not wanting to go and how mean I was that I came to pick him up. Of course Dr. Soep backed me up by telling Connor that he had told her several times during the day that he wanted to go home. I have seen meltdowns from Connor before but never anything like this. Now I did get him packed up and in the car, but instead of having one upset child I now had two, because now Alexander was throwing a fit because he did not want Connor back. He said he had more fun without him! Trust me my sanity was going away at a very fast pace!!!

On a positive note, there were three boys from Camp, around the age of 10 or 11 who were so so so sweet to Connor and kept hugging him and giving him sweets to take home. They told him that they would miss him and that they hope he would come back next year. Connor later told me that he had spend a lot of time with the three boys and that he adored them - no supprise for me that Connor would be drawn towards older kids and not kids his own age! Luckily I got their names so will thank them for looking after Connor and making the two days he spend at Camp fun for him.

Now, we had a one hour drive ahead of us to Boulder and that was actually enough time to calm down both boys. On this drive I was able to pin point what caused Connor's disintegration ... I have two boys who go to bed each night at 8 pm and usually wake up around 7 to 8 am. Both eat four solid meals each day, at 8 am, noon, 3 pm and 6 pm. Connor told me that bedtime at Camp was at 9:30 pm but of course he was up all night crying and calling me after 11 pm. Wake-up was at 6 am! He was acting picky about the food because each time I asked what he ate he said just some croutons for lunch and dinner. I said how can this be? and he replied the first night there was Lasagna which he did not want to eat and the second night Pizza which he does not like. There was salad but he did not want Salad either so he just ate Croutons.

All I can say to the end of this story is that the day we picked him up he fell asleep at 8 pm in the Hotel and slept until 8:30 am in the morning. The night before we went out to eat Tapas and he literally inhaled the food at the restaurant and in the morning he ate two Bananas and a huge Biscuit with Gravy. The eating and sleeping did not stop until today... We decided to go to Estes Park and go to Fun City the following day after we picked him up and finally do the tour at the Historic Stanley Hotel. We also toured the Boulder Falls and Nederlands with the wonderful Historic Carousel which is fittingly called the Happy Carousel. We all had smiles after riding on it, even Oma and Opa!

Oh and I have to tell you that I was so proud of both Connor and Alexander who sampled lots of new foods on this trip. Even a buffet from Nepal. They also swam a lot in the pool, especially in the deep end! I am and was very proud!

So and now we are HOME and happy to be back. My husband, during all this had the fortune to get a trip to Paris, France, and got to spend two days there. He will be home tomorrow night. Trust me during day two of our trip and all the drama I wished myself to Paris and into a Bistro with my husband to have some French Bread, Cheese and Wine, finishing up with some of that yummy Ice Cream under the Eifeltower that I love so much .... - haha

Hugs,

R A C A