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

Sunday, April 17, 2011

A look back into the Past ....

I know I should start updating about the last four weeks but I wanted to write about the last two days (actually parts of the last two months).

Last month, Ron the boys and I took on a major road trip. It was my Birthday wish to experience a trip by traveling in a car since we are always on the go by plane. I can tell you it was a most wonderful trip but after driving over 2600 miles it was also exhausting and I think our next trip will be by airplane again :)

Anyway, We went to Oregon to celebrate my oldest US friends 40th Birthday. I have known Brenda since my arrival in the US 18 years ago and she has been a constant to my life. In an ironic way our life even intertwined more when my friend Brenda (who lived in Wisconsin) met my friend Eric, who was flying with AA at the same time I did and was based along side with me in Miami, met at a Party Ron and I had when we had started dating. When both, Brenda and Eric, also came to our wedding they hit it off once again and shortly after our wedding they both became officially a couple. Now they have been married for some years and Eric has since then Retired with AA. A huge bonus to this trip was also seeing Jean again who also traveled in for Brenda's Birthday. Jean, Brenda and I used to work together for Northwest Airlink (Mesaba now), and just as Brenda became my first real friendship here in the US, Jean followed suit right after. The three of us are bound by a wonderful friendship and Thanks to FB we hear from each other even if we did not see each other.

Here is the part why this trip was so important to me. While we were in constant contact before we had our boys we kind of went silent for about 5 years. Ron and I were busy focusing on Connor and Alexander and we made new friends who had children (twins) the same age. We never lost touch but we just stopped talking frequently. By then Eric and Brenda had moved to Oregon and settled down. Brenda, who has always been an amazing Artist became very involved with Pottery and has been very successful. I am always so proud of her and of course we made many memories over time, just as Eric and I did in our years in Miami.
So seeing them again was very emotional and wonderful. The moment we arrived and hugged it felt like we had never missed a beat. We might all have changed in looks a bit but that was it. We had three amazing days visiting, talking, remembering and catching up.

So then, one month later, two days ago to be exact, I get a phone call out of the blue from another friend who I had not seen in five years. Trudi, my precious German Friend who went through the same Training class with AA in January of 1996, called to let me know she was flying into Colorado Springs for an 18 hour layover. Now, Trudi, Lydia, Michelle, Eric and I were all roommates in Miami. Well, to be correct Trudi, Lydia, Michelle and I shared a 1 bedroom apartment and Eric had his own just about next door.

Trudi just left again this afternoon but her visit was the same kind as the one with Brenda and Eric. It brought back memories from a time when I was not a wife or mom. My lovely husband Ron joined our group in 1998 and we all stayed close until Connor and Alexander entered our life in 2005.

Now I LOVE that we are all reconnecting and it is funny and strange to talk to people who have known silly, young and immature me. I ruled my 20's in a way. I was fearless, a bit wild and VERY different from the person the friends who surround me now know. Now I act and of course feel like a Mom, dress like one most of the time (Jeans, Hiking Boots, Sweaters - hey we are in CO after all! now in my 20's the skirts and shorts could not be short enough and a Bikini was always an acceptable outfit in Miami). Now I might even seem or look grounded. My 'old' friends that are reentering my life still know my old self and by just seeing each other again it brings back some pieces of me.

Do not get me wrong! I love who I am today but we fall in a pattern and we forget sometimes who we were in our younger years. It might even be hard for Connor and Alexander to ever truly know who we used to be. We all had a lot of fun back then, where always on the go, loved riding Motorcycles and always loved a good party.
I am not missing the old days but I am so thrilled to now get back in touch with my family of friends. Not all of us had children, so it was natural to pull apart and then of course we all ended up in different States as well.

I am so so proud of everyone of my friends and how well we all turned out. Trudi is still flying and managing a busy home life, Eric is Retired and loves it, Brenda is an amazing Artist and Jean has a most mind blowing carrier with Delta Airlines. It seems I have a gift of finding friends who are smart, beautiful and grounded!!!

So, in the last two months I have turned 40, my precious friend Brenda as well, Connor and Alexander turned 7 years old and I am back in touch with friends who meant and still mean so much to me. A true Gift!


Hugs,

R A C A

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