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

Tuesday, July 27, 2010

Therapy(s), Neurologist Check-Up, Movie and Babies ..



Another almost normal busy day for us....

Thanks to JDM we have hardly any boring day's anymore. We are either on the go for Therapy, Doctor Visits, Infusion Trips to the Hospital OR we get lucky and have some days at home but they usually mean In-Home Infusion Days, cleaning the house or catching up with Paper Work and Bills.
I am not complaining at all when I write this because for one I am lucky I have a wonderful husband who helps out so much on top of working so hard to take care of us but also treats us to some wonderful and amazing trips when we can steal away for a couple of days here and there and the next statement I make is the most important one of all: We can not change what happened in regards to Connor getting JDM and if we were not this busy then the alternative could very well have been us loosing Connor and this is one thought I don't and can't think about. So I am happy to be on the go all the time if it means we are still the lucky ones to have our child. Does this mean I am not upset or angry that Connor was dealt this card? Heck NO and I will never be grateful to JDM no matter how many times I could say it brought out the worst and best in us and that we grew in so many ways. I rather be still as ignorant as I was before but since I can't make this choice this will have to do ....

We started our day at 6:30 AM and left the house at 7:30 AM for a 9 AM Speech Therapy Appointment. Now I am a lot of things but I am N E V E R late, so you should have seem my face when we got to the Center at 8:39 AM and I was told that Connor's Appointment was at 8:15 AM. I looked over and over at my Calendar and it said 9 AM. So Amanda said she would take Connor for 15 to 20 minutes until her next kid showed up. I was just dumbfounded and could not make sense of it until Connor's Speech Therapist, Kristen, showed up at 9 AM to take Connor. I looked at her and then it clicked that the clinic had scheduled Connor for OT/PT at 8:15 AM and Speech at 9 AM. So I was on-time for Speech but did not have a notice that we were also starting up PT/OT on Tuesdays as well as the Hippo Therapy on Thursdays.

Therapy went well and we then found us at 10 AM with a 5 hour break until our Appointments with Dr. Stephen Smith for Connors Neurology Check-Up.

When Connor has Speech Therapy there are several Toys in the room that Kristen has for him to play with or to occupy the boys when she needs to talk to me. There are several choices from building blocks, to a Marple Game and Train Tracks but the one my boys started fighting over was a bag with a Baby Doll and clothing, Diapers and Bottles. They were so attached the last time that I thought if Therapy goes well and they are still fascinated with the Baby this time around I would think about getting them each a Baby. You know by now that I am not always the most traditional and I figure if you look around family life in today's society then men are very involved in raising babies and kids so why should they not learn or be drawn to taking care of a baby?
So after we left we made a stop at Target and now my boys are each the Parents of Baby Girls. Connor's Daughter is named 'Lala' and Alexander named his Daughter 'Katie'. It wasn't even to pricey for just $8.99 a Doll :)

After this we went to see what movies were playing this early in the day and lucky us there were two showings at 10:45 AM. One was 'Inspicable Me' and the other was 'The Sorcerer Apprentice'. We choose the second one since the boys are all for Wizards and Magic plus I was rather drawn today to watch a more Adult Movie then a Cartoon. I have to say the three of us liked it and according to the boys it was 'the best movie ever'. Now this statement will last until the next movie they see :)

Dr. Smith's Appointment went well and here are the new physical measurements about our Identical Boys. Connor weight in at 47.5 lbs, Alexander at 44 lbs. Connor was 3'10" tall and Alexander 3'11.5" tall. It still upsets me in some wicked way that they are so different now. I know all my twin mommy friends who do not have identical twins might laugh at me and in the grant picture of things this should not matter at all but for 5 years my boys have weight the same, had the same height, wore the same shoe and clothing sizes and just looked almost like a mirror of each other and now I look at Alexander and think that this is what Connor should look like. It just makes me sad on an unexplainable level. Makes no sense I know but it does.

We are Home now and the boys had a nice evening playing with their new babies while going to battle in their Knight Uniforms. I had to tell them that it would look better if they laid the babies down before wielding swords but hey they are still learning :)

It is now 8:30 PM and the boys went to sleep within 20 minutes of laying down. A long and exhausting day for all of us....

Hope You Day went well.

Hugs,

R A C A

3 comments:

  1. Thanks for sharing. I can so closely identify with your emotions in the first paragraph and can only imagine how you feel about seeing right in front of you what "should" be.
    ~Charity

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  2. Here is a fun laugh about boys, babies and Knights. My Connor, when he was about 4 years LOVED being a knight and was Prince Phillip from Snow White two Halloweens running. So, one day he decided he wanted a "baby" too. Off to Target we went for likely the exact same $8.99 baby doll. His was named "Sister" (as only an only child would name one). She went everywhere with him, did everything, she would "watch" him do his sword fights and play with the dragons and be the Damsel in distress- Then suddenly one day-no more "sister"....... I asked him where Sister went.... he looked at me matter-of-factly and explained "Well Mom, the Dragon got hungry and ate her". So much for sister........ Hope your son's babies fare a bit better and you don't have any hungry dragons.

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  3. @ Charity .. Thank You for understanding and in the same moment how sad that you do understand.... Hugs to you!

    @ Monica ... Thank You for making me laugh!!!! your story is so precious and I can see how our boys would have gotten along very well :) ... I am sure the direction your son went with the Dragon could be a real possibility in our house as well I am sure - HaHa.

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