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

Friday, December 2, 2011

Oma & Opa, Saying Goodbye and Make A Wish ...

It has been two very busy days again and we just might be getting used to it ... maybe not but one can hope ;)

Oma and Opa arrived save and sound but with some stress elevation due to traveling standby. It turns out that even a flight from FRA to DFW that had 40 open seats in coach was not a safe bet after all. AA threw a loop at us by adding  freight to the 767 and then ending up weight restricted. All the regular passengers made it on but only by some juggling from the Agents and Ground crew did my parents make it on the plane. Two other D3's had to watch the plane pull away even thought it had lots of seats left. This unfortunately happened to me in Brussels once with AA and another 767 and back then I was the one waving after the plane .... The joys of being a nonrev. There was also some hiccups at Customs in DFW where the Agents and Volunteers could not agree on what form my parents should be filling out and this resulted in a delay as well. Good thing we had 3 hours between flight that cushioned us and we ended up with just one hour to wait in the end.

It was wonderful getting home after a long day, in which I ended up having many interesting conversations with Flight Attendants in the Crew Lounge and on the planes, also Passengers I met on both flights - I just wish I would have had the heart to tell one Eagle Flight Attendant who I met and who was all worried about the Bankruptcy that she should start applying to other Airlines, as she only has been with Eagle for one year! if they do start to layoff I would want a head start before all the others go looking and what can you loose with just one year seniority? I don't know but I feel for her!

It was very precious that Oma and Opa got to spend some time with Niki and Harlow last night and this morning. Unfortunately we had to leave at 9:30 am to get Niki to the DEN Airport for her flight home but we also had a date with Make A Wish at The Children's Hospital for Connor's Christmas Shopping trip.
Make A Wish once again outdid themselves and once again I felt tears in my eyes seeing so many sick kids in one place with so many smiles on their faces. Connor was so thrilled to be taken by two Elves (no Family allowed) into the Christmas Store. There he had 7 Christmas Dollars to spend, one Dollar each for the people he picked to buy gifts for and one for himself. After he picked out the gifts with the Elves help they then were wrapped and had cards attached so he could take them home and place them under the tree. There were a couple of moments that made my eyes tear up today and both were due to Connor. The Elves came out of the Store after about an hour to tell us that in the store was Santa, who would only sit with Make A Wish Children today but when it was Connor's turn to sit on his lap he told Santa that his brother really wanted to see him, too, and if he could please get Alexander to have a picture with Santa as well. Turns out Santa and the Elves had a big heart (no surprise here) and an exemption was made and Alexander was allowed to follow Connor into the Store. The second time I got teary was when one of the Elves told me how particular Connor was in picking out his gifts. She said he took his time looking at everything and gave a nod or a no with a great focus. When it came time to pick a gift for his Mom he looked at the Elves and said that one was easy because he knows already what I always want 'HIM'. It is exactly what I tell my dumplings all the time. Mommy does not need anything because I have the love of the most precious little boys in this whole world!!!!

So THANK YOU Make A Wish once again for bringing magic in all those beautiful children's eyes. Also for looking after all the siblings today! Alexander had so much fun watching the magic show and having his face painted. Of course juice and cookies are always a hit as well ;) For his Face Painting he wanted the Chicago Bears sign ... of course .... but since we were on the Bronco's home turf he got a Bronco spray painted on his face :)
Next week Ron has a HUGE surprise in store for Alexander to give some balance to all this and it is a surprise to Alexander at this point but we know he will be over the MOON. All he is asking us and begging us for for Christmas revolves around Football and the Chicago Bears, with his second favorite team being the Bronco's Well ... next Sunday in Denver the Bears are playing the Broncos and Ron was able to get some Nosebleed seats for $100 each. At this price we knew we could not afford for all of us to go so Ron will take Alexander while my parents, Connor and I will spend the day downtown Denver. I so wish Alexander could get a close look at the Football Players ...but never less we know the experience for him will be priceless!

Niki and Harlow made it back home to LAS and unfortunately Harlow s running a fever so we hope she will recover soon!!!! We will miss them here as the time spend together was very precious. I was proud of the boys how considered and attentive they were to Harlow and of course I loved my conversation with my favorite youngest daughter!

We also have good news from the Herndon Family. Ren got through her second surgery well and seems to be recovering better this time then the first time around. We are hoping her parents are feeding her lots of ice cream and also the same amount to her lovely sister Addie!





Hugs,

R A C A



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