Sunday, June 14, 2009

Summer Break Begins

Last day of school was Thursday, June 4th
Now, we can sleep in a little later. But we are still going over to take care of my little elderly couple - at least until the week of Joshua's surgery (we'll get to that soon).

Josh enjoyed a few days of hanging out with one of his best buddies from school, Joel. Joel has twin brothers who are developmentally delayed, so he has learned to be very patient and understanding. Their teacher put Joel and Josh together earlier in the school year and found that the two worked together VERY well. Joel's dad, a chaplain in the Air Force is currently deployed, so now that school is out, his mom decided they should go spend some time with her parents so she'd have help with all the kids. But before they left, she let Joel come spend time with Josh.

We took Joel fishing with us, then he spent the night. They also spent some time hanging out at the park, playing basketball and playing on the playground equipment. Now, Joel and his family are at their grandparents house in another state. All the way there, Joel and Josh texted each other asking each other "what's up." I know because Josh kept asking me how to spell the names of the programs he was watching, etc. and he needed help reading some of the text messages Joel was sending to him. It was very sweet.

Okay, back to Josh's surgery. It is coming up very soon - June 17th. We leave Tuesday, the 16th very early to make it to Houston in time for lunch and Josh's pre-op appointment at 1pm. Then, Wednesday, we are set to arrive at the hospital by 5:30AM! The surgery is supposed to happen at 7:30AM. And, we are told to expect Joshua to remain hospitalized for a week to recover. He will have those special diaphragmatic or breathing pacemakers implanted - one for each lung. But he will not be able to use the pacemakers for some time still. I'm told they have to "fuse" into place for up to a few months before he'll be able to get them running. But once that happens, he should be able to go without his ventilator much or all of the time (at least eventually). We are so excited about that prospect, but still a bit worried about the pain and risks associated with surgery.

I have officially resigned as the caregiver for my elderly couple - after 3 years with them. They finally got help from the state and an agency is assigned to them to provide them help. I trained a CNA with that agency on Friday, my last day with them. It means I do not currently have a job - but I wouldn't be at one for a week or more anyway because Josh is going to be in the hospital. But I have found a position available at his school as the attendance clerk. I would absolutely LOVE doing that job, so I applied. I have not heard anything yet, but am praying it will work out. Josh is already talking about how excited he would be to have me working there. We could go to lunch together and he wouldn't need to ride the bus to or from school anymore.

We are still trying to sell our house. We have had 8 showings. I really hope we find a buyer soon. I'd sure like to be moved and ready before time for school to start again. And I want to set up a nursery room for Steffany and her baby, even if she decides to get married and move away. I always want to have a place for her and the baby in case she needs it.

She is still having some morning sickness and mood swings. And she has quit her job at the pizza place she was working at. She is making plans to hopefully have an office job with the family of her baby's father. I sure hope that works out for her. I guess time will tell. The good news is that the baby's father was really come forward telling us he cares about Steffany and their baby and has been excited planning for the baby.
Okay, on to some disheartening news. Another child diagnosed with the same thing Josh has (ROHHAD) is involved in a study with Johns Hopkins, testing whether the disorder which they believe may be autoimmune could be cured with a very strong, miserable dose of chemotherapy. Please keep that little girl, Haven Fowler and her parents, Misty and Kris, in your prayers. They are about to go through some of the toughest days of their lives.

The chemo treatment breaks down the immune system to the point that the body cannot fight off really anything. It also makes you extremely sick to your stomache, causes ulcers in the mouth and for hair to fall out. Doctors do not know if Haven will survive the treatment. But the hope is she will, and will emerge free of the symptoms of ROHHAD completely. If this chemo does in fact get rid of the ROHHAD, I'm sure the doctors will want to have Josh do this too. While I wish he could be cured, I am scared of the risky treatment. I guess we will cross that bridge if/when it comes.

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