I am not sure if I ever woke up to more e-mails and messages and phone calls in my life after my post yesterday.... I am not sure why I keep being surprised when I truly do know we are surrounded by Angels and the biggest extended family anyone can only dream of!
Today was a mixed day for Connor. He had Physical Therapy (PT) and Occupational Therapy (OT) this morning. Both lasted for just about 20 minutes before he got to tired. OT was first and the Therapist tried to see if he could help getting himself dressed. He really made a good effort and we did get some PJ's on him. He then got to go to the Gym and play some Basket Ball which was him sitting on a table leaning on me while the table got raised to the same height as the basket and he then got to try and throw balls in it. He threw three balls and then got tired so we cut the session short. The came PT about 2 hours later and here we tried to have him sit on the table kicking a beach ball.He did not like this but got a little excited when they put up a swing since he used to love those. This did not go well as he is still unable to sit in a 90' Angle so he started crying. He was ready to quit when the Therapist asked him if he liked to play with anything else and to look in the closet for a toy. Well he discovert Potato Heads and wanted to play with them. This lasted for a good 10 min of him trying to reach for pieces and putting them on. It was so strange to watch him struggle with a toy that he had mastered at 2 years or less....
We also saw Dr. Soep and there are a few news in regards to Connor's Blood Work. A few levels have been even more elevated then they used to be and they need to be addressed in regards to his treatment. We might go to 3 Pulses of Solumedrol or we might increase the Methotrexate. Also there is a concern about him possibly loosing blood. Today he had to give a stool sample to look for blood in his stool. It did look very dark and blackish so we have to wait and see on that one.
Connor had two highlights today. For one he got a visit from Lady Di and King Richard (Rich & Dianne who are lovely friends of ours). Connor's face just lit up and he could not wait to show off how he can move his wheel chair. However his energy is so low that after 30 min he was close to getting ready for bed.
The second big event and one that had him so excited and waiting in the Lobby was him getting to see Ron, his Papa :) Ron took over the shift today and will stay with Connor until Tuesday morning when I take over again so Ron and Alexander can head to Alaska to meet our precious Grand Daughter Harlow Olivia, and of course the greatest daughter there is Niki :)
I did have to fight back tears again today but they were not of me being frustrated or upset but because when I was leaving there were two events that broke my heart. One was me packing up and Connor trying to climb out of bed and Ron picking him up so he could sit in his lab. Ron looked at me and said 'do you know how long it has been since we were able to have him in our lab without him being in pain?', the other was in the lobby when I was saying goodbye and I leaned down to kiss his nose, cheeks and mouth when all of a sudden I felt two little arms reaching out to hug me ... I am not sure if you realize how huge this one was because Connor has been unable to Hug anyone for a long long time. Lifting his arms is painful and trying to use his muscles at all has been so difficult.
And now I am 'Home' and the homecoming was so so lovely if not a bit sad. I came home to house that was warm, clean (even our black TV has no dust on it :)and I have food, treats everywhere and new toys waiting for our boys. I do have to mention the food..... I think I could be snowed in for 2 weeks and there would still be something to eat. This truly is hard to describe but the refrigerator is packed, there are treats and fruit everywhere. Not sure if you all realize how heavenly it is to look at healthy food and FRESH food?
I will add that I was VERY selfish tonight ... Alexander was actually hoping for a sleepover at his friends Alexander's house, with Miss Shelly and Miss Clare. So when I picked him up he was not truly happy but I kept insisting because I did not just want to spend time with our youngest but needed to! Being with Alexander, especially with all the buildup energy he has right now gives me back the memory, the noise and the chaos that used to be so normal for us. I am dreaming of the day when we have both of our boys running through this house again.
I will add one wisdom that was send to me in an e-mail today from a family we have come to care about very, very much and who have gone through their own medical nightmare:
They call it their (and now our) Survival Recipe:
priority 1- conners health,
2-family,
3-a roof over your head,
4-utilities & groceries,
& last - medical bills.
One day at a time. Thinking too far ahead into the future can be overwhelming
A little shout out to The Gallup Family, The Simpson Family, The Tossell Family, Kendra, The Herndon Family & The Miller Family, especially Kim's Mom before I completely sign off:
Thank you for your most generous offer to come here and look after our home and family or to take in our dogs for the duration of Connors stay. All of you have jumped in and send the offer to come here. One of you facing a move and trying to sell their house, one giving up her Spring Break when you know how important that can be when you are a College Student :), one of you offering to move their work place and family to help us and then one of you who is yourself dealing with a medical upset and nightmare in your family. You teach me how big a heart really can be ........ it is almost ironically that it looks like we will be okay by having a Pet and House Sitter but please realize that this showed in a big way
I am now signing off to go and have some playtime with my youngest son :) I did have a little surprise for him that I had gotten before we even left for Chicago not knowing if the boys were able to handle it when I bought it originally.
It is not a PS 2 or 3 (can't afford those now - haha) BUT since we already own a wii I had bought and no surprise there: STAR WARS LEGO wii :) May The Force be With You!
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