more good news about our miracle boy. Cardiologist called and said we could switch from coumadin to aspirin!

hi all, Harry had an assessment last week, and the OT and PT both said he's progressing well, and want to continue work with him. They will do another assessment in six months. He had another cardiology appt. this morning and his O2 SATS were 93, which is very good. The doctor said his heart function was good, and if it continues, in January he can switch from coumadin to aspirin, which would be great! He continues to be more active at school, and as a result is making new friends. And we have yet to go back to the hospital!

Here's Harry and Holly at his 5th birthday, aptly entitled, "Harry's Five and Still Alive". We are going to hold Harry back a year before sending him to kindergarten. He still has much work to do in the area of writing and speech before he is ready to go, though he's excited about it already.

fun in the play yard

We just had Harry's IEP meeting today with CCS for speech and adaptive P.E. and he was accepted into the program, he will get one week of speech, before they break for Summer, unfortunately, however, he will start in the Fall with the speech therapy twice a week at school, and adaptive P.E. which has already started. He is making great strides in both OT and PT with the county, and enjoying his time 'at the gym'. I can't tell you what a relief it has been to be disaster free for this long, it's just amazing.

here's a shot of Harry today at the CCS therapy unit. He's been doing well with both occupational and physical therapies. He also had adaptive PE at his daycare each week. We meet next Friday at County Ed. for his IEP, and hopefully he will start speech then, at least for a few weeks, until the school system goes on break. He's certainly enjoying all the activity, and is showing slow signs of improvement.

Harry has been feeling really well the last few days. He started therapies this week, and finished his speech assessment last week. We are still unsure whether he will qualify for speech through the county or not, but whether he does or not, it will stop in late May regardless. His oxygen sats went up 5 points over the weekend, and you may be able to see in the photo, his lips are red now for the first time ever, he's at 90% now! Today the cardiologist said that the fenestration narrows some time after the surgery, which explains the higher oxygen level. At some point in the future, they may close it off completely, if his pressures in the heart are stable, which should increase the level even more. He had a great Easter over at great Grandma Petersons, ate a ton of candy. And the family gave us a large donation for his Heart to heart fund which was just amazing, if a little embarassing. We are grateful for all the help and support. And I think we finally have time to send out some thank you's!

hi all, Harry will finally start Occupation and Physical Therapies next week, we had the final meeting today. And I think this week we'll finish up with CCS as well, and maybe get the speech therapies started soon. Harry had his first day at school on Monday and had a wonderful time. It has made a huge improvement in his mood and behavior to get back to something resembling normal. He still gets very emotional at all the things he now cannot do, but is definitely moving in the right direction.

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.

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.

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.

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.

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!

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.

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.

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...

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

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!

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.

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.

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!

these guys have nothing on Adam West and Burt Ward

Harry and the pirates

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.

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.

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.

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!

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

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.

Harry in his new wheels

Harry goes to rehab, in real clothes

Hi all,
Just wanted to give another update on our little guy. Since leaving ICU, he's been up in recovery for a few days now and the plan is to head to another area for rehab. He's been quite sad the last few days, as you might imagine, since he's immobile and cannot speak beyond 'yeah'. He remains on a feeding tube until he can really eat and take in enough fluids, we are working on that. Thanks to our moms, ben has been able to continue with school, and elsa has been taken care of. We have no idea how long he will remain in rehab, and if indeed we go today. But they are supposed to have a wonderful program here, so he will be in good hands and hopefully make some more progress with his motor development. We were able to get him in a stroller yesterday with some assistance and equipment and actually move around the hospital. He really liked seeing the fish. The good news is that he appears to undertand what we are saying. So we are looking forward to him being challenged with more to do and are definitely tired of being here, already, but know that we are at the start of a very long road. Thank you to all our well wishers and family/friends for your support.

our first smile

Harry goes in for surgery

He went in on the 15th for a shunt removal, and possibly the fontan, which is the last stage of the norwood procedure, google it for more info. Based on the amount of scar tissue, etc, our surgeon ended up doing the whole thing. As a result of the extensive work on his aorta and being on bypass for so long, his brain did not get enough oxygenated blood and he sustained extensive brain damage as a result, which is always a possibility, even just with anesthetic. So that's where we are. We are pooped but Harry seems to be doing pretty well. We are praying for a full recovery but we will see what happens.

an hour after surgery in CTICU