Connor woke up with a smile today that lasted for about 25 minutes when he was reminded that it was time to go to his Breakfast Club. His little face just fell and he has looked sad since then. He did go to BC but when he came back still feeling sad and telling me he is not feeling good I called Ron and we agreed that it might be due to him being exhausted. As I mentioned yesterday he really has not had a 'day off' since he started therapy here at TCH.
I talked to the doctors that were on duty today and after they looked at Connor they agreed as well that he would benefit from a day off. Supposedly there might be a bug going around as well as there are several kids that are in this kind of mood, plus another thought could be his demeanor is a side effect of the new drug he is getting or as we feel it is just your normal exhaustion.
The good news is that he might now get scheduled to have every Sunday for himself without any therapy :)
So as expected his mood has lightened a bit since he was told about the change of plan's today and his first request was having a bowl of Tomato Soup, followed by painting a truck.
So I just hit post by accident and of course I am far from being done posting!
Dr. Soep stopped by as well and we discussed today's blood test results and they are still pretty much the same as they were last week. He will get another blood test later this week and Dr. Soep said she will also talk to Dr. Pachman about considering IVIG in the near future. It seems we are at a Plateau right now and it all points to Connor still having inflamed muscles. This would also explain why he is not gaining any strength at this point. The good news is that Dr. Soep also talked to the Nephrologist and at the dose Connor is getting and with the Kidney being closely monitored there should be no worry at this point :)
Connor also got measured for his wheel chair that will be ordered for him and he had to be weight as well and the scale now reads 20 kg ... that would be 44 lbs!!!! crazy!!!! Alexander weight in at 41.8 lbs last time. Now they have never been this far apart in weight since they were born.
As a color for his wheel chair he picked 'Hunter Green' but it was a battle between that and Red.
His PT Therapist just came in and asked Connor if he was up to going on a field trip instead of Speech Therapy in the Hospital. I guess there is a Marble Slap Ice Cream Shop somewhere on the Campus and this is were we will be headed at 1 PM. The hope is that he will walk a bit on our way over there. He was very excited which surprised me considering he is not a big ice cream fan but then anything for him to get outside would be considered a treat - ha ha
So we are back from our field trip and it was heavenly! Connor did not have to walk at all but was allowed to sit in his wheel chair. There were four of us total, two therapist, speech & PT, plus myself and Connor. It was about a 1/4 mile walk in the cold and it felt so good. When we got there Connor wanted Hot Chocolate but settled on Chocolate Ice Cream with crushed up Oreo Cookies. The four of us had so much fun that now we might be planning another field trip next week to the Denver Children's Museum :)
Instead of a Therapy Dog today we were treated to some music by a Gentleman that stopped by with his Guitar and sang a song for Connor. It was a John Denver song and Connor really loved it :) I posted a picture but unfortunatly you can't see the big smile that was on his face. I was hoping for the 'I am leaving on a Jet Plane' song but the one we got was pretty nice as well :)
I am also getting some reports from Lake George and it sounds like Oma, Opa, Ron & Alexander are having a fun but busy day. My Dad and Ron have been working on the Dog run and getting more firewood moved. My Mom has been an Angel inside the house with Alexander and housework. This afternoon all four of them got a break for Coffee and Cake sitting on the back Deck enjoying one of our famous blue Colorado Skies. Now Alexander and Ron will move our Christmas Tree via our ATV to the Tree Cemetery on the border of our property. Can you tell that we have been busy with other things since Christmas ... I even recalled still seeing some Christmas Decorations up when I was home last time and 'no' I did not remove them yet :-o
So and once again my Mom was taken back by the generosity from our Church Family when Pastor Hendrix and his beautiful wife Leta stopped by to deliver Dinner for tonight. Connor and I were wondering if some will be saved for us, well at least for me when I get home Thursday or Friday :) - ha ha
Also Thank You again Miss Kim for helping out. Connor's worldly possessions that he collected while in Chicago arrived today via Fed Ex. Still hard to believe we arrived in Chicago with each of us having one Roller bag as a carry-on and then traveling back checking 3 bags plus receiving those two bags today.
I want to take one more minute to thank everyone that has been keeping up on the blog. It has been hard to catch up with phone calls and e-mail!
Hugs,
R A C A
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