Connor was due for his Methrotrexate Shot on Wednesday and he did well until I mentioned putting on the EMLA Cream. He then got very anxious and complained about the stomach ache. He always does really well during the shot but I know it still hurts him. He was able to distract himself for the 45 minutes in between the cream and the shot by playing outside.
This is what I really want everyone to understand about Connor, that makes us as his parents so so so proud of him. He NEVER puts up a fight or throws a fit, complains or turns his back on any treatment he needs to do, therapy or medication he has to take! I am in awe of him for never complaining. He has his internal battles for sure, which shows with his anxiousness at times but he always rises to the challenge. I know I am prejudice as he is our son but even if he wasn't I would be blown away by his strength and the fighting spirit he has in him.One of the many times when I told him this he responded: 'Mommy, I am strong because I have Russian, German and American blood running though me, that makes me strong and brave' - YES it does :)
On Thursday we had two Appointments in Denver. One was to fit Connor's new Carbon Fiber Braces and the second was with the Rehabilitation Doctor, Dr. Biffle, to asses his legs and feet. Both appointments went very well. The braces fitted easily and Connor took to them very well. Dr. Biffle was happy with the progress he has made and told us that she fully agrees with just going to Hippo Therapy as of now and that he should wear the braces for long distance walking. We will see her next in 6 months!
Leaving Denver we were headed back to Colorado Springs for Hippo Therapy. This appointment went very well once again. Connor got to ride on his beloved Blinkers again and I have to tell you I have never been around horses much before Connor started Hippo Therapy but I so so so love this Horse. He is sweet and gentle and I credit him along with lovely Amanda, Connor's Therapist, for the progress Connor made. This time's highlight (and I have no picture to prove it) Connor got to stand on Blinkers back. He was not moving and Amanda and a volunteer held on to his feet but he stood straight up with his arms outstretched. Precious!
We got home very tired and exhausted, 10 hours and 250 miles later. It was a successful day overall so no complain in that regard.
I also got an e-mail from Dr. Soep, and the great news from her department is the fact that this month Connor gets to have his infusions for the first time in Colorado Springs. We will go on a schedule of one month in C-Springs and the next in Denver and then back to C-Springs, to help us to cut down on the driving times. I so hope this Infusion Center will work out and will be as positive an experience as TCH has been. ALSO, huge news for us was the part of Dr. Soeps e-mail about the fact of us leaving out the Solumedrol Infusion again. If you recall wlast month we had to skip it because Connor was running a fever due to having Strep? Well, her thoughts are that he had no negative reaction to missing the Steroid Infusion that we should try this again. If he does well a week after the infusion then we can possibly say goodbye to the Steroid Infusions!!!!! This is so big and would be a tremoundous step towards tappering down on his meds.....
Now he still gets the Hydrocordison prior to the IVIG to minimize the chance of a reaction but this might be it babe ;)
So and this morning Ron left again for a trip, this time heading to San Juan and Miami and he will be back Sunday. The boys and I have a trip planned to Manitou Springs tomorrow for the Jumbo Gumbo Cook-off and the Mardi Grass Parade. I miss Fasching as we have in Germany and Mardi Grass is the closest thing to bring it back for me and show the boys what this Season is all about :)
Wishing all of you a fun but also relaxing weekend!
Hugs,
R A C A
Oh Anke! This is great news! I so hope the new infusion center works out AND that Conner can stay off solumedrol!
ReplyDelete