Timeline from first symptom to diagnosis

Our son Connor was diagnosed with JDM in January of 2010 and here is a bit of a timeline to show you how this diagnosis was reached...

Towards the end of November 2009, Connor mentioned some pain in his right foot. We found a Plantar Wart and began treating it. We went on vacation in Germany were he mentioned a pain in his knee's, to feeling in his own words, pain 'inside his legs'. By the time we got home on December 9, he needed to be carried almost everywhere. By the end of December he was unable to feed himself, dress himself, sit up or down, lay down and of course walk. Here is a list of tests he went through between December 10 to December 28, 2009

X-ray of his Hips
MRI of his spine
X-ray of his chest
CAT Scan of his brain
CAT Scan of his chest
MRI of his chest
MRI of his hips
Numerous Blood Work
Spinal Tap
and we finished with a Muscle Biopsy

There were many speculations of what might be causing Connor so much pain and one of them was Gullian Barre Syndrom (GBS) due to his first symptoms showing up within a few days of his H1N1 Flu Shot.

The final Diagnosis came on January 11, 2010
-Juvenile Dermatomyositis (JDM)-

Hope

Hope

Monday, March 31, 2014

Recovery and two determined warriors :)

I know every parents is convinced their kids are the greatest and I have to say that I know for a fact that my two dumplings are one of the bravest and courageous souls out there.

It has been one week today since the surgeries and as of now they are off pain meds and have been back in school since Thursday (at home on the sofa with their feet propped up). They are both getting much more confident on their crutches and the most amazing part is that there is no complaining at all!
I admit that I am super grateful about them walking on their crutches now. Carrying 27 kg heavy kids around has been hard and getting up every two hours for medications and bathroom breaks made me feel as if we were back to the Mommy stage of having 'little' kids.

It has been absolute heaven having 'Oma' here as well. To have the help on things that are not elated to the boys care has been the greatest gift.
 YAY for family!

As smooth as most of it went I still keep my fingers crossed that by some miracle we could get around having the same surgery done on their left feet's!

Oh and here is a funny anecdote that made me laugh. When Connor had his worst pain he said he wanted for me to go and get him a white needle for his homemade Voodoo Doll he had made after our trip to Nola last year. I told him I don't have one for him but I could put one in the Doll that I had bought and that came with a white and black needle. Now we had never used the dolls for that regard as it was meant as decoration of sorts. So I took the white needle and inserted it into the right ankle. According to both my dumplings they said they have been pain free since that night… Well, whatever works and I think that little doll might be put to work more often now ;)




Hugs and thank you all so much for checking in 

R A C A

Tuesday, March 25, 2014

Surgery Day, Oma's arrival and the day after....

Yesterday was the boys Foot Surgery Date.

It had been looming in front of us for weeks and we were so grateful to have been able to go on Spring Break last week to beautiful Estes Park with the Herndon Family. For 5 days the kids and Adults got to run, play, hike, swim, rollerblade and relax in one of Colorados most beautiful sceneries.
This getaway was perfect to get the minds of what was going to happen.

Yesterday, Monday 24, 2014, we left the house at 6 am for a 7:30 am preop sign-in at Memorial North in Colorado Springs.
Connor was kind enough to give the first surgery slot to Alexander who was more anxious since he had not faced a surgery since he was 1 years old.
Alexander received some sleepy Meds about 30 min before he was wheeled into surgery. I got to go in with him and stay in the surgery room until he was put under anesthesia. I admit I expected the same scenario then Connor had at his last surgery 2012. 
Let's just say it was nothing like it! Alexander fought the anesthesia and started almost reacting like a seizure. His body would cramp up and he got all rigid. When he finally was asleep he still was all tight looking and I hated walking out of the room.

Ron decided he would stay with Connor whose turn also went not as smoothly as we had hoped. Ron, Connor and I were sitting in the preop room when I was called after about 1 hour and 10 min that Alexander was now in recovery. While I got ready to leave and see Alexander they came in saying that Connor would leave for surgery. This is when Ron said Connor got very anxious since he realized just as we did that he had never received his calming sleepy Meds 30 min prior. What I was told from Ron was that his turn in the surgery room also did not go smoothly either.

I in return was with Alexander who was waking up and who was very upset, crying and afraid. He wanted his IV out NOW, he wanted to pull off his cast and truly cried for a good 30 min. However, my usually bubbly and funny child pulled through again once we got moved back to the second recovery room. I was blown away at how fast Alexander bounced back and was in happy spirits again. 

Ron, Alexander and I settled into waiting for Connor to get out of surgery and after about 45 minutes into waiting on Connor the Therapy department showed up to give Alexander his crutches and have him practice walking with them.

Connor came out of surgery about 1 1/2 hours later and his recovery was very different. When I saw him first he was one heartbroken little child. He cried and cried quietly and was so very very sad. He stayed that way almost the whole time until we left. He did take some comfort in listening to classical music I let him play with on my iPad. Another strange thing was the fact that the nurse came to see us in recovery saying Connor did not get his pain Meds yet and that he will get them now.
Oh and Connor had an additional procedure done as in finally getting tne pernament stitch removed that the surgeon had left in at his 2012 port removal. It had been in his chest for almost 2 years now and tne bump had irritated Connor and his skin now for way to long. Dr. Shaw told us he could try to cut it out. Well, we all thought, including Dr. Shaw, that it be just a little stitch to pull out. He told us after the surgery that it was a much bigger deal then he had thought. The stitch was long and even had 6 knots in it.

After all was set and done Dr. Shaw said the surgeries went well. We ended up being released around 2:30 pm.
The boys were loaded into Ron's car and while he headed home with them I got into my car and rushed to the Denver Airport to pick up Oma who was arriving on Lufthansa and landing 28 min early.

The home coming was wonderful and it was such a gift coming home to Pizza and Soup thanks to friends who are more like family.

What really lifted all of us up all day yesterday was the huge outreach in messages of support we got! I know I say 'Thank You' alot but truly I can't thank you all enough for the love you showed the boys and us.

The night here at home went very well. Alexander had to go to the bathroom at 3:30 and Ron carried him in and out. I then gave both boys some more pain Meds.

This am Alexander woke up in great spirits. He said he felt pain but he would ignore it. Poor Connor on the other hand has had a truly horrid morning! So much pain that he has been crying nonstop since 7 am. I am religious right now about his medicine schedule and now at 11:30 we seem to finally turn a corner. I called and left a message for the nurse around 10 am but no call back yet which is a tad frustrating. 

So hoping this afternoon will be calmer for Connor and all of us.






Tuesday, March 4, 2014

Surgery Date is set...

Today the boys and I got to meet Dr. Shaw who will be the boys Orthopeic Surgeon for their feet surgeries.
The date is set for March 24, the same day Oma will arrive from Germany. We will have to be there at the Hospital at 5:30 am and the first surgery, which will be Alexander, will start at 7:30. Connor will get his turn at 8:45 am.
Oma will arrive in Denver arround 3:35 pm.
So I am estimating that on March 25 we will have a very quiet day at home and will all recover from either surgeries, international travels and from just being parents of a medically busy household....

Since the boys put on a brave face about the surgeries but are indeed pretty worried about it I figured we deserved some distraction. So today we went and finally watched the LEGO movie. Scary how I have to admit I am the most crazy LEGO person in our family - lol. We loved the movie and are now ready to be back in a creative mode and ready to throw out all those instructions ;)

Hugs,

R A C A