A record that I went for three days without writing in my blog :) I am sure you all enjoyed the break as well :)
Our weekend, starting on Friday, went really well. On Friday our whole family went to the movies, Connor, Alexander, Oma, Opa, Ron and I, and we loved it. We went to see 'How to train your Dragon' in 3D and it was a wonderful movie for all of us and we range from age 6 to 76! If you have not gone to see it I highly recommend it. It has a beautiful Story line :) The 3D part was funny because it was a first experience for the boys and throughout the movie they kept reaching out trying to touch things :)
We ended up going shopping right afterwards and that might have made it to long a day for Connor. He did very well at the movies but then tired out fast.
On Saturday we had a fun day outdoors. The weather here in Colorado was gorgeous and after a bit of convincing we got Connor to go outside to play ...
I believe I said this before as well but if not then please know that I am a HUGE fan of IVIG! Connor made tremendous improvements after his first IVIG and now after the second treatment he made even more improvements when it comes to him moving and getting strength back. He asked to sit on the swing and he did it all by himself. Even last week he had not enough strength to hold on without support and now he sat on it for a good 10 minutes and being able to hold on by himself ... A M A Z I N G!
He also asked to go on the Trampoline which of course is a big 'No No' for children with JDM according to the book 'Myositis and You', but we went with our feelings and Connor's determination of wanting to try it, so he got on. Granted he is unable to jump by himself and stand without being held but the smiles he gave by just being on the Trampoline was worth so much. I am not sure if I explained previous but a lot of children with JDM have a problem with a very weak neck. Connor does too, so we always have to be careful that his neck is supported. That's why Trampolines are usually a very bad idea as are contact sports in the future. So no football for our dumpling but that is not to much a heartbreak for me but the Ice Hockey or Karate is harder to take - ha ha... Just KIDDING ... I am grateful everyday to have our boys no matter what their physical conditions are. If they are breathing I am happy :)
So, Sunday went just as well as Saturday with all of us spending time at Home and outside. The dogs loved it as much as we did and it was very touching to see Tasha and especially Apple follow both Connor and Alexander everywhere they went.
Today, Monday, Connor had PT and OT in the morning and it went extremely well for him. He is making so many steps into the right direction and both Therapists, Miriam and Tonya are just Angels! They make therapy fun for him and that is all the magic that is needed.
I even got to pay some more bills which of course is 80% medical related. Interesting to see the Ambulance Ride from CMH to the Airport cost $1750.00 total with us having to pay just $210.00, and we did get the bill for our stay at CMH which came in at $102,578.92. I am not mentioning every bill that comes across but Ron and I figured we reached the $500,000.00 mark easily. Just think this could mean a second home somewhere on an Island .... and of course that also means that in 4 months Connor made a decent dent into his 5,000,000.00 coverage for life. Lets see what improvements the new Health Care Reform will bring him when he comes of age and will not be covered anymore under our insurance. But I am past this right now as I am back to worrying day by day and not looking to far ahead. I will leave that for another day :)
I hope you all had a pleasant weekend as well!
Love,
R A C A
Good morning from Wisconsin!
ReplyDeleteYou are at such a neat stage with Connor right now, and I remember coming into these feelings with Taylor. The "newness" of having a disease is still there, but the steady improvements give you enough of an emotional boost...I've always "believed" that Taylor will be ok, but the joy in her face when she can do something that she hadn't done since before she got sick is so hard to put into words...it's almost euphoric! These are such great times for you, and it only gets better! When her blood levels were steadily dropping (even though they weren't in the normal range) I just had to tell everyone! The first time that Taylor's CK was in the normal range, I cried right there in the office...and yes I had Dr.s and other JDM mom's on the board tell me that it's still just the tip of the iceburg...but there was just a big difference for me between believing...and knowing that things will be OK. Congratulations on the progress so far, we're pulling for you!
By the way...I remember seeing in one of your posts that you will be in clinic on April 21st...Taylor will be too! We are seeing Dr. Curran at 3:15, so we'll have to peek around the corner from each other and say hello!!!
Have a great week!!!
Beth & Taylor :)
Thank You! You are so right about every tiny step feeling like a huge milestone :) Just the other day I was showing everyone how he can now pull himself up two stairs easily and he has not done this in 4 months. I feel as if we are watching our baby learn to walk for the first time. Our therapist said our goal is even more visible because we watch his twin run, climb and do everything that Connor used to do as well.
ReplyDeleteI so hope we get to see each other on the 21st! Our Appointment is at 4 PM :)
Hugs!