Wednesday, December 23, 2009

Trip to Cleveland and Updates

Seems like there is so much to say. My mom and sister came to visit a week ago today. My sister left a few days later but my mom stayed to drive back to Cleveland with the kids and I. John has to work through Christmas Eve so it would have been kind of pointless to come at that point. I could drive by myself with the kids but would like one more good trip with the kids again before I drive by myself with them again. So John is flying in tomorrow night about 6...just in time for the party. He was not even feeling great about leaving work by 2ish to make this happen but It's Christmas Eve and he will probably still be the last one out the door! So this plan works out pretty well.

On the way here, Isaac was trying to be helpful (could be sarcastic...but for real this time) and was handing Jerry this book with a writing board on it. It hit Jerry in the face and he got a bit cut on his cheek. He was bleeding and crying and there was no where to stop for several miles. Isaac at this point, has had to go to the bathroom since we passed the last rest stop 15 miles ago. JJ threw up all over himself from crying. It was awful, he's cut, bleeding, crying, and has puked and there was nothing I could do for a few more miles. We finally got into the rest stop but apparently, the bathroom reminded Jerry of a doctors office so he was screaming and clinging to me. We finally got him all cleaned up, had lunch and just bummed around the rest stop where we apparently picked up germs, despite me chasing the boys around with sanitizer. Isaac got a fever and a stomach ache the first night we were here. He is ok now and we just hope JJ does not get it. The rest of the ride went very well and it is really good to be here.

Last week we took JJ for blood tests to check his thyroid and a bunch of other things. It was traumatizing. They had a really hard time getting blood (they needed 8 tubes!) and thought maybe he was a little dehydrated. He, of course, threw up from crying so much. The next day, we took him for his H1N1 booster and he threw up again. To make matters worse, he was in a phase of not drinking hardly enough to stay hydrated and not eating well either. Today is the first day in a long time the drinking has been a lot better. He drank 22 so far today and ate probably half of normal for breakfast and lunch. He has had some really good eating the last few days. It is interesting when someone sees him eat on a bad day it looks like something is really wrong with him but when you see him eat when he wants (?) to, he looks very normal and competent. He can huge bites and has no problem with any part of eating. It is up and down so it is hard for sure to know what correlations there might be. It does seem that the ginger tea increases his appetite. We had stopped it thinking it might be making him have trouble sleeping. We started it again just in the morning. Sleeping better eating better. Bologna is the newest big eat. He has eaten a whole slice more than a few times. Also, JJ may react more strongly to teething pain than other babies because of his history.

His blood tests that came back so far are normal but there is one or two things they are still waiting for. We will be going to the GI doctor but I really hope he just gains a lot of weight in the next month and then we can avoid any more tests.

I guess we are not getting a Christmas card out this year. I guess time just got away from us . We may try for a New Years card instead. We did see Santa. I believe Jerry was pretty suspicious...a doctor with a very funny costume? Actually, he didn't do too bad. He walked close to Santa, waved to him, gave him five, and tried to engage him from a distance.

One more thing for my Dad. We really, really miss you Pops!! We are glad you are not suffering as you were last Christmas and we know you will still be with us...laughing so hard at the funny moments that you cry. The boys are going to be so much fun this year and I know you would be proud that we are not taking them, their health and the joy they bring for granted!! Merry Christmas Dad, we love you!

Wednesday, December 9, 2009

He really did lose weight!

At the pediatrician today Jerry weighed approximately 18 pounds 5 ounces. He was screaming from the time he saw the building so with him crying and not sitting still it was hard to be sure....but somewhere between 18 - 2 and 18 -5. That means he lost at least 15 ounces in a month. He did have a pretty big drop in consuming formula but was eating a lot more food at that time. Then we tried making 30 calorie formula with just the powder we are using now and he was hardly drinking or eating at all. It seemed to make him feel really full. So now we are going to do a bunch of blood tests to check for absorption disorders, endocrine, or metabolic problems. A little worrisome, but mostly we feel he just had a rough spurt with eating and drinking from teething or something. The doctors also believe that something could kind of trigger a memory of how hard and painful eating had been and make him not eat as much. Today he loved Frito corn chips. He also ate a lot of fruit and a few bites of bagel and pizza, but refused most other food. Now he will be sick for a few days from his shots so we will start over after that and hope he gains back all that weight in a week.

Friday, December 4, 2009

Good News

Jerry's echo showed that his heart is about the same as last time. The squeeze is in the normal range but there is still some trouble with the relaxing part (this will be there for the long term or forever). This should not be impacting him as far as the doctor can tell. It was such a relief!! His weight on this scale was only 18 pounds and 5 oz or something like that. It has got to be wrong since mine and the one at the pediatrician's would both say a little over 19. Even at that weight, the cardiologist is concerned that he is not gaining faster and wants us to return to the GI doc. I really just think it is going to take time. He is VERY active and is really just starting to hedge toward normal eating. However, he does really decrease his drinking so much when he does eat that the total calories is still pretty poor. I think he only had 11 oz today!! That is really bad since he didn't eat great (not much opportunity) until a bowl of noodles for dinner. We see the pediatrician next week for JJ's 18 month appointment and will see what the scale says then and look further. Shots next week too...maybe 4 or 5 of them!

Jerry was pretty upset during all examination today but luckily calmed down watching Barney during the echo. It is hard to see him so upset and having to go through this anxiety. There is no doubt that he remembers all the pain from other experiences and just isn't sure what to expect. He remembers where to go to see the fish we visit CCMH. I couldn't believe today he said fish and started walking, new what hall to turn down. Anyways, I know that none of the exams are hurting him and feel OK just comforting him and telling him it is just the way it is for him right now. As I have heard a few other stories of ALCAPA and knowing all of the risks there were for surgery, we really have fared pretty well and are thankful for that. I hope to teach Jerry this too as he grows older.

Thursday, December 3, 2009

awaiting tomorrow

up later than I should be. Just getting a few thank yous and treats ready for some great people at the hospital. Expecting all good news tomorrow. It will be a long day. Just the two boys and I at CCMH. We plan on leaving around 6:30 to get to our first 8:30 appointment.

Goal for January is to get out plenty of well overdue thank yous!!