Ron and I thought we would start this blog to make it easier to keep those of you that want to hear about Connor's journey with JDM in the loop. Posting on FB has been a wonderful way to keep you up to date until now but as you all know once I start typing I have a hard time stopping :)
Today we went to see Dr. Smith again to talk to him about Connor's problems with swallowing and chewing. He said that this is just another form of his muscles being attacked by this disease but he also said he is not worried at this stage about his breathing. It really is at a point where we need to trust into the Prednisone doing it's job. The muscles are obviously under attack and being destroyed and the prednisone is trying to stop this. Where the part about us being patient comes in is that even when it is stopped it then comes to the point where he has to build new muscle fibers and be stable before we can consider physical therapy which of course takes time.
Here is an idea for you to know where Connor is right now. He can walk but very slow and for very short distances, approx. 15 feet. His feet are still turned out to about a 70 degree angle and he can only stand or walk on tip toes. He can hardly support his neck and when you pick him up you have to support his neck or his head will just fall back. If he tries very hard he might lift a cup up to drink but only once. We are at a stage where he has to be dressed and undressed, and we are feeding him about 80% of the time. Same with drinking, we use straws and pick up the cups for him. As mentioned above he has a hard time swallowing so right now it is all soft or liquid foods. Chewing hurts him so he chokes when he tries to eat something solid because he won't chew it enough. He also can not sit in an 90 degree angle since his back won't bend. He usually lays down supported by several pillows to lift him up a bit.
Now I am not writing this to sound negative. This really is our new temporary 'normal'. If I have to reflect on anything good that came out of this then it is the fact that it showed us how strong and connected we are as a family. We still have laughter in our house and we still find things to do that brings happiness to the boys. Ron and I are in complete agreement that we will not accept that this disease has no cure and we will push, educate ourself and not rest until Connor will get the best treatment and help that he deserves. If this would mean for us to take him to another country then so be it. Right now we are lucky that there is some great research done in Washington D.C.. We have been in communications with Dr. Lisa Rider M.D. thru phone calls and e-mail who leads the Research Program of Twins and JDM. They are very interested in Connor & Alexander and we are looking at a possible trip to D.C. so they can enter the study. She said she would love to have them there are soon as possible but Connor needs to be stable first which might take a few more weeks.
I also want to take a minute and Thank everyone that has shown us unconditional support. It really makes us feel loved and most importantly made us realize that we are not alone in this journey and that Connor sure has the most amazing Angels looking over him.
I think I will love having this blog as an outlet and the truth is there will be no fast cure so there might not be any change for a while or we might be going forwards two steps and back one. The reason phone calls have been so hard for us is having to re-tell over and over the heartbreak we had when this all first happened or as new heartaches arise. Most of you are parents and you know how it physically hurts you when you see your child in pain. The helplessness we had felt during the Christmas Season and leading up to the diagnosis was truly something we do not want to experience again.
Sorry this was so long and I am positive my future posts won't be this lengthy - haha
Truly I am signing off now knowing I am surrounded by hope, family and friends..... Lot's of Love & Hugs to all of you!
R (Ron) A (Anke) C (Connor) A (Alexander.... R A C A :)
Thank you for posting this and starting this blog. It really does help us understand where you all are at. Hugs and love to you all. :-)
ReplyDeleteRACA - I am so glad you have decided to share on your blog. It gives me something more specific to pray for you. You are good parents and your love and support will strengthen your family.
ReplyDeleteI had a couple of thoughts while I read your blog. One, when I was reading about Connor and his lack of movement it reminded me of where I am with Daniel (5 months old) right now. You may want to look at the baby isle as they have a lot of food that dissolves in your mouth. It may be a tasty treat for him. They even have dehydrated yogurt bits and some puffy-Cheetos looking things. I thought maybe it would help with the choking issue and give him the ability to eat something kinda fun, just a thought.
I also wanted to let you know my husband's family is all around the DC area. If you decide to go out there please know if you need know anything there are plenty of people we know out that way!
I will keep up with you via your blog and FB. Hugs to you all.
Peace,
Anne
Anka, thank you so much for shedding light on this disease. Thank you for your transparency and courage through this intense battle. You are covered in prayer and little Conner will "fight the good fight" and come out of this a stronger, compassionate and more determined young man.
ReplyDeleteYour family is an inspiration!
xo,Gina
Wow, what an adventure this is turning into. The boys sound like they are very good at making the best of a bad situation. I think conner has me beat on the prednazone, but so far I still have him beat on the Methotrexate. I still like my Remicade sesions the best. Comfy chair, tv, blanket, pillow, and a whole bunch of snacks that I can have as many as I want. I use that as my pamered time and they really pamper me. I helps more than anyone knows. Hang in there. I pray it will get easier for all of you. Love Lynn OXOX
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