Saturday, March 28, 2009

Wednesday, March 25, 2009

Monday, March 23, 2009

hi all, Harry is very much enjoying being home. He and Elsa are fighting like cats and dogs, so things are slowly getting back to 'normal'. Harry has appointments with the county, CCS, cardiologist, and pediatrics this week and next. We hope to get him started on all his therapies in early April, it does take quite a while. In the mean time, he has his own version of therapy, trying to take on his usual routine of helping make breakfast, climbing on the furniture, building with legos, and basically being a kid, no small feat for him. We had a little scare with a bad cough this week, but it turns out it was just a cold, what a relief. I think we've had enough of the health care system for a while. Now time to get on the phone with our HMO, yay. At any rate, things are gradually settling down and we are very happy to all be home.

Wednesday, March 18, 2009

Harry has meeting this week and next to assess his ability and goals for PT and OT. We are also looking to get him an aide for his return to school. Sarah took him there today for a bit and of course he loved it. He's fine in the classroom but could be a danger to himself in the play yard. Things are sort of settling down from concerts and recording session, so we actually all got to have dinner together, it was great.

Monday, March 16, 2009

Saturday, March 14, 2009

yes, we are finally back. It took some doing getting discharged, but we made it back yesterday, and Harry is gradually getting into the groove of things, playing with his toys, and having arguments with Elsa at the dinner table. He is definitely eager to return to his pre-surgery life, and easily forgets he has trouble with balance, and stairs. Once we meet with CCS and get therapies started, that should help.

Thursday, March 12, 2009

I cannot believe that we are actually coming home tomorrow. It's a bit like hearing that your plane is actually taking off after several delays. Staying at the hospital is a lot like sleeping in an airport. At any rate, we are all glad to be coming home, and see a close to this portion of Harrys care. The therapies, medicine, equipment, etc at home we can handle, we've had plenty of practice. But we will not miss the hospital experience. So will he need any more procedures? We hope not. At most, if his heart function improves, he will have an angiogram in which they will tie off the fenestration that is allowing a pressure release in his heart right now. If not, he may stay the way he is. So for the time being, we will work on getting him started with all his therapies in Santa Barbara at CCS, getting him an aide so he can go back to school, go back to work, and try to be a little more normal. Once again we are so grateful for all your help during this incredibly trying time. The support we have seen from our friends, family, church and co-workers has been overwhelming.

Wednesday, March 11, 2009

this is from my visit yesterday with Elsie, kids had a great time. Harry is still having some trouble walking, so I'm sure we'll be in therapy for quite some time after our return. But we are all looking forward to being in the same place for once, amazing the things we take for granted. Anyway, thanks again!

Sunday, March 8, 2009

well it's official, Harry is coming home on Friday the Thirteenth, this week! Thank you all for everything, and I mean everything. We still have a long road to recovery, but are extremely happy we get to do it at home.
hi all, Harry had another day pass today, which he was very excited about. Unfortunately, he got sick in the car on the way, and ended up sleeping most of the day, again. By late afternoon, he seemed to be feeling better, just in time for Sarah to drive him back. We are hoping it's not the flu. He was still grateful to be home and see his siblings, and we can't wait for his final return.

Friday, March 6, 2009

Harry is off the sildenafil now and has been off the anti-seizure meds for a few days. He got around all day yesterday without his wheelchair.

Thursday, March 5, 2009

Hi all. Harry has made some improvements. With grandma's encouragement, he's now getting on and off the toilet, and his bed, by himself. And his motor skills seem to be improving. The rehab doctor has said he is hyperflexing his knees and they would like to see that fixed before he leaves, rather than send him home with leg braces. We had hoped we might get an early discharge with his improvements, but March 17 is still the date. That's going to make next weekends quire of voyces concerts and rehearsals really interesting. Ah well. Also, Harry got out of bed Sunday night and fell, and now we need to stay in the hospital with him. Not such a good nights sleep, yet another reason we were hoping to get out of here earlier. At any rate, he is charging along. We may be back for another Sunday visit this weekend, we'll see...

Monday, March 2, 2009

Harry is doing well, he had a visit home yesterday on a 12 hour pass. I'm sorry we didn't notify everyone, but I knew we'd be short on time. I rented a car big enough to fit his wheelchair, and we took off as soon as he got his meds. We made it back to SB just in time to stop at my church for coffee hour and surprised the heck out of everyone. He was really happy to see his church friends again. Then we were off to a benefit luncheon at Sarah's church. They raised a whopping $3000 for his account, we were stunned! He had a lot of fun seeing Ben and Elsa again, and playing in their play yard. Near the end of lunch he was getting tired, and by the time we got home he was exhausted. He ended up sleeping for the rest of his time at home, before Grandma Denise drove him back to the hospital. He was not too happy about the return trip. So, Sarah and I will actually be able to hang out tomorrow. Looking forward to it.
Last night, he got out of his bed in order to go over to the bathroom. He didn't make the walk all the way, and fell, and now they want someone at the hospital over night. So we will have to go check out of McDonald House and are really hoping for an early discharge now. Staying at the hospital is no good. However, the rehab team will reassess Harry on Tuesday, and I'm sure we'll hear if they decide to discharge earlier. That is all for now