Today Connor's day was very interesting in many way's.
At first we started out pretty much the same way we ended yesterday. Connor woke up not wanting to go to his Breakfast Club so I had to walk down to the Breakfast room and get his food for him. Have I mentioned yet that he started a new trend of ordering either Cheese Pizza or a Cheese Burger for Breakfast? It seems we were told from his Therapist that some kids are catching on and want to order the same now :)
Then following Breakfast, Connor caught a break when he was told his mornings speech session was cancelled. However at 9:30 AM his OT Therapist showed up and he was still not in a very cooperative mood but he lucked out again because the girl was a substitute for his regular therapist and she decided it was a good time to just play. You all would have loved seeing Connor smile when he got to shoot Water guns in the Therapy room. We were all soaked when it was over but it was just what we all needed and from then on his spirits lifted for a while.
We then had a nice visit with Javier and Connor talked a lot today telling him about the book he is making. The next drop in his attitude did not happen until 1:30 PM when it was time for PT. Miss Terri, who Connor adores, had a surprise planned for him and told him she was going to take him somewhere in the hospital. So she said it was just for Connor and her so I stayed back in the room. Well this might have backfired because according to Miss Terri, Connor got upset and was asking for me the whole time. It took quiet a bit of effort to get him out of this mood again when he came back.
I can tell you however that Connor's mood was raised dramatically when Ron showed up and he has been Mister personality ever since he learned that we were both staying with him tonight. He has been talking a lot, joking with the nurses and playing games all afternoon and evening.
Now to the medical part. Connor had blood work done this morning at 5:30 AM if I recall this right. Some tests they were able to do but when they tried to test the levels about the cyclosporine his blood clogged. So now he will have some more blood taken tonight to try again.
The results we were able to get are as followed:
CK was great with a level of 80!
Von Willebrand count was 300, down from 333 but still to high
He is still Anemic and his red blood cell count has dropped some more from 10.5 to 9.7. They will now consult with another doctor as why his levels are dropping since they ran just about every test possible....
Then he had a Bone Density Test done this morning and that part was not good news. He does have osteoporosis, which of course was a possibility in happening with the high doses of Steroids he is on. His levels are pretty bad with a -3. So now Dr. Soep will also consult with another doctor tomorrow. His Spine was not that bad but the bones in his hip are very thin and fragile.
Tomorrow, Connor will also get his first dose of IVIG. I did post a picture of some of Connor's daily meds but it does not include the Methrotrexate, Solumedrol or Prednisolone and now the added IVIG since they are given thru his Port and not orally.
I did meet up with the Social Worker and she told me in the hallway that she has a new release date for March 21. Now Dr. Soep told us tonight they will try to figure out how to get him home possibly next week but so many things have to still be put in place. For one all the medication he still needs would almost set us up for having a in home care come to our house. Now living in Lake George is not exactly helping with possibly finding the care he needs. Which also brings us to Therapy. He will need extensive therapy when we leave here and it needs to be someone with pediatric experience plus some knowledge into JDM. So we realize very well that this is not something that can be rushed ....
I want to tell you all that we might come across of not being to happy at times but we are NOT unhappy with the care Connor gets from Dr. Soep. She has been wonderful in every way and we trust her immensely. There area also people Connor has grown very fond of when it comes to his care here at TCH. He really loves Chinonye as his nurse (as do Ron and I because she is amazing in how kind she is with Connor but also remembers how he likes to take the all of his medication. This is almost an art form! Then of course Miss Terri Carrie his PT Therapist. She is so in tune with Connor's moods and when to push and when to back off ... precious!
When I talk to my Mom in Lake George it seems they are doing really well. Alexander is really becoming domestic and wants to cook or bake all day my Mom is telling me. When he set the table for Coffee and Cake this afternoon he even put candles for my Mom to light on the table. She said the table setting was very elegant :)
So and now Connor and Ron are playing Star Wars Lego while I am typing but what really got a huge smile on Connor's face was a call we got this afternoon that he will be granted a wish from the "Make a Wish Foundation'!!!! The Lady that called will be here next week to talk to us and get three wishes from Connor. They will then see which one they can materialize for him. I wish you could have seen his face ... I am going to be curious what he will pick but also how they will make it work. He is after all on a lot of medication and not very mobile. But I heard they can do wonders so I am happy to be surprised.
Last but not least 'Thank You' all for your beautiful and caring messages that came in after I posted about Hope. Once again you have shown what amazing friends we have and how big your hearts are to send prayers to a girl and family that you have never met. You are what keeps us centered!
Love,
R A C A
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