Saturday, February 28, 2009

hi all, it's been a while since my last post I know, I was back in SB for a few days to teach, and recuperate. Harry continues to do well. His coordination and strength are improving, albeit slower than he, or we, would like. So it still looks like the March 17 discharge date is good, will let you know if that changes. In the meantime, we walk around, go to the gift shop, look at the fish tank, say hi to the nurses, read books, play with his cars, order meals, and try to get some sleep. We are hoping for an early discharge, but will see if that happens. Thanks to all who have donated to his fund at Santa Barbara Bank and Trust, there are some anonymous ones out there. We would have been in real trouble without your help!

Monday, February 23, 2009

You can see from the photos, Harry got a visit from Ben and Elsa, which he really loved. We got a mat put in his room and he's finally strong enough to move around and play on it with his cars, etc. He is getting better at transitioning from positions, ie. standing to kneeling, lying down to crawling. And he's much happier being able to do things, and play, as we all would be. He also is getting better at walking without much support, he was walking in the lobby yesterday while I was only holding his hand, just amazing. He walks like he's drunk, but at least he's walking. Now that he's feeling better, he's continually asking to go home, which is his normal after surgery, so that's a good sign, hard to deal with, but a good sign. We are still looking at a March 17 discharge date, so in the mean time we are making use of the 101 freeway, and babysitters, and hoping we can get him home sooner.

Saturday, February 21, 2009

This is Harry playing with his cars downstairs, his balance and coordination are really improving, and he's getting stronger. He's really missing home as a result I think as well.

Thursday, February 19, 2009

I had a few questions about the proposed length of Harrys stay here. In order for his discharge, they would like to see him walking, going up stairs, feeding himself, and going to the bathroom by himself. All of which will make his return home much safer, and certainly easier for us. I will definitely post an update if we get close to any of those marks in his progress.
We just had our meeting with the rehab team. They all said what we expected, that he is really doing well. He should be weaned off the anti-seizure meds by the 25th. The proposed date of discharge is currently March 17. If he does exceptionally well, it could be a little sooner. So we've got another month of running back and forth and dealing with the hospital. With us feeling ready to leave now, I can only surmise that we'll be ecstatic to get home. Thanks again for all your extra efforts on our behalf!

Wednesday, February 18, 2009

these guys have nothing on Adam West and Burt Ward
Harry and the pirates

Tuesday, February 17, 2009

Harry is still feeling good and Sarah managed to get the doctors I remove the feeding tube for good. I brought Elsa down for a visit which he really loved. He's missing home though and his new puppy, Jojo. We meet with the team here Thursday to determine goals for discharge. He continues to charm the nurses here and seems to be enjoying his therapies.

Thursday, February 12, 2009

Hi all
Harry had a great day today. He took a barium swallow test yesterday and was okayed for clear liquids. No more gel in his water and poweraid. During one of our several visits to the gift shop, "toy store", Harry had to have some popcorn. He ate it fine and loved it. It also turned out to be a great way to get him to drink more fluids. Our goal for removal of the NG tube is 40oz, which seems a bit much for a 4 yr old. When the occupational therapist heard about the popcorn, she wanted to see him eat it. She immediately took him off the "mechanical soft" diet he's been on for weeks and tonight he was able to eat pizza for the first time since the surgery. And more popcorn of course. We are truly getting back to the old Harry. He is sitting upright without support, and during physical therapy today he was walking with a walker and our help. His favorite activity is riding the bike, a modified tricycle, which he runs around the rehab area on, and talking about it the rest of the time. The therapists have all been amazed with his progress in the last week, as have we. His speech and motor skills continue to improve as well and he seems more like himself every day. We are all pretty tired now but relieved and happy at his continual progress.

Tuesday, February 10, 2009

Harry seems to have gotten over his cold, no fever, but his appetite is still diminished. The doctors took him off IV meds, and also agreed to remove the NG tube at least for the day. We are hoping to do the same tomorrow, he's much more comfortable without it. He did very well in all his therapies today, Sarah said he was riding a big wheel around rehab this morning and loving it. His movement and speech have improved as well, he's much less hesitant when speaking. He just seems alot more himself, all in all. He will need to drink more liquids in order to have the feeding tube removed completely. We move out of Ronald McDonald house tomorrow morning, their rules, and could check back in in two days time. I think we'll probably just sleep in his room and save the money. Sarah and I will be trading time down here as Mom K. leaves for N.C. on Thursday. Hopefully with his progress, and no more illnesses, we might not have to do it for too much longer, and maybe can come home some time in March, we will see.

Sunday, February 8, 2009

Harry is holding up well in therapy, which is M-Sat, though he does tire pretty easily and needs a nap daily. For some reason, the blood draw seems to happen during this nap, brutal. He's been eating well for about a week and drinking from a straw for days. Finally started drinking water from a sippy cup Friday. Another step closer to ridding ourselves of that feeding tube. He is now holding his head up all day and desperately trying to sit up on his own. I'm sure he'll be moving to a regular wheel chair soon. He had another fever last night, but it abated by morning, the doctors suspected it was a mild bacterial infection, I really hope so, considering the serious IV antibiotics he's on. Now for the great news: Friday night he said "I want Godzilla". We about fell out of our chairs. Saturday morning he was saying all kinds of things, "I want to watch spongebob, I want to sit in my chair, I don't want to lay down anymore, I want my toys, I have to go potty" and so on. It's labored, but he's talking up a storm. It was truly great to hear him talk after weeks of "yeah" and not much else. It felt like a huge turning point in his recovery, thanks again for all your prayers and support!

Friday, February 6, 2009

Harry has been fever free for several days now. We are hoping to get him off the feeding tube soon. He sat up yesterday by himself in therapy, and has been holding up his head all day. This is the first day I'd say he's stable, and his therapies are going well. He is feeling better and hopefully we can focus on his speech and motor skills. While I was taking his picture this morning, he blurted out "cheese" which surprised the heck out of me. More to come.

Harry said "cheese" today

Tuesday, February 3, 2009

Hi all, it's been a while since our last update. Harry had been spiking fevers for about a week in rehab so they finally put him back on IV antibiotics. That seems to have helped. He still has a feeding tube as you can see, but we are hoping that can come out soon, the formula they give him really bothers his stomach. He is gradually moving his limbs more, his legs and left hand, the right hand is still pretty still. He has started holding his head up briefly by himself, and has added a few more words, 'yeah, no, mommy and daddy'. Sarah's mom is watching him now, and she said at the gift shop he also said, 'blue, yellow' and 'that one'. All are really good signs of improvement and the therapies are working. He still wears a diaper, but will take food and drink by mouth. He's on all kinds of meds, and takes two naps a day. I think the physical therapy really wears him out. The nurses of course all love him, one named Brandi, from 6W says she's his girlfriend. And he still cannot sit up yet, but all in good time. So thanks to everyone for your love, prayers and support, and thanks to our moms for watching the kids. Our schedule is going to get alot more crazy when mom Kreitzer goes back to NC, but we'll figure it out. In the mean time, mom Richardson has helped down south and is with Harry right now, so we can work a little in SB. Very strange to be back after being in the hospital for two weeks. Anyway, if he could say it, I'm sure Harry would say he loves you.