Sunday, August 30, 2009

Jerry meets our great friends at Office Max

Last week, the boys and I went to visit John at work. The kids had so much fun with all the toys there I wonder if John and friends ever really work there! These people have been so good to us. We appreciate their understanding for our situation and the kindness they have shown in so many ways. Jerry loved the attention of all the ladies and was quite the ham.

Saturday, August 29, 2009

fat free fruits are my favorites..and a few cheetos to make mom happy!

Jerr Bear really does like fruit better than anything. He will eat several mandarin orange slices and 1/2 of a small apple. Even though it is not great calorie wise, it is so good to see him enjoy food and I think an important part of long term good eating habits and positive association with food. Although his eating continues to be of great concern, it is so good that he does not gag and throw up from eating like he did before the surgery.

In Cleveland now on Saturday night and I just checked in with John. JJ drank 20 oz today and finally ate a few bites of mac and cheese and french fries for dinner. A few days back we went out to breakfast and he ate a few bites of sausage, so I know he can chew meat type items. He has also ate a few bites of hot dog and chicken on occasion. I find myself pretty stressed at times trying to offer him enough variety of foods, textures, nutrition, encourage him to like eating, and do it all before he is tired of sitting in his chair. If I offer the things he likes first he starts off with a positive experience making him more likely to try other things. But then he may be less hungry for other things. If I offer the things he has a harder time with first, he may be fussy and want out before he eats something he enjoys...or he enjoys the 2nd round of items but is it rewarding for fussing and not eating the other things???? Such a challenge in the mix of other regular busy day activities.

walking like presurgery!

These are from a few weeks ago. He is still a little timid with walking and does it best when he isn't thinking about it. Like if he spies one of Isaac's treasured possessions and wants to make a B-line for it. He just goes and doesn't give it a second thought. Of course we never have the camera ready then! We have not been pushing the walking (we don't stop him either) too much lately because I am not sure if it burns more calories that he sometimes can't spare. Seeing him progress to walking is awesome and gives us hope for a more normal future for him.

A sign of things getting back to normal or... back to "not normal"

I am now finding time to put in some photos from weeks ago. They may not be most relevant for now but I still like to post what I have been trying find time to post for a few weeks. Isaac and Daddy are up to their "craziness" again.

I'm in Cleveland! A surprise for mom!

I haven't been able to write about coming because it was surprise for my mom who sometimes checks the blog. It started when a friend offered some airline money she could not use for a reduced price. Long story of how I determined what to do with it, but it was for sure the best decision to come alone and surprise my mom. My sister was here visiting my mom and left to "run some errands" and picked me up from the airport. My mom was pretty annoyed with Sheri for leaving to buy underwear but was shocked and so happy when I came in behind my sister. I have an awesome picture of her reaction but she won't let me post it!

It was hard to leave the boys, especially with JJ's recent weight loss but he is good with Daddy. And I will be refreshed and feel good about having spent time with my mom when I go home tomorrow. I have been so stressed and sleep deprived the last few weeks and will probably be so much better with these few nights of uninterrupted sleep. My mom and I are talking a lot about my dad and enjoying each other too.

Thursday, August 27, 2009

lost a little few weeks are critical

JJ was drinking pretty poorly for a few days. Eating has plateaued at a few bites of this or that. So I put him back up to the baseline dose of his acid reflux med and took him for a weight check today. he lost 2oz so he is now 16-6. he has drank formula much better since I put him back up on the acid reflux med so hopefully we will see that continue and he will gain again. He will sometimes still eat baby food carrots so I fed him some of that with "Duocal" calorie increaser in it. He woke up screaming after going to bed. He was very sweaty, continued screaming and crying, and burping a lot. The Duocal is made of all kinds of oils and I think that just does not agree with him at all. My poor guy just can't win. In the future could be an NG tube, new formula, and/or an appetite stimulant med. Also we will revisit the feeding specialist to see if we are missing anything. He seems, tho, to have all the eating skills and he uses them for a few bites or more when he wants to or can. The ng tube would just be awful because he would be pulling it out and I believe we would have to go to the ER to have it put back in with an x-ray each time.

Lots of shots are in the future for my guy too. He needs 15 m vaccines and the a shot to prevent RSV every month for 8 or so months. Today he actually was happy to visit the doctors and did not cry about being there at all. I guess that will change again soon. Shots are not a big deal after all he's been through, but we still hate to have him keep going through more at his sensitive but so aware age.

Saturday, August 22, 2009

not eating again!

We are so frustrated. Jerry ate and drank well (in comparison) for 2 or so days and now the last few days have been awful. He is only getting maybe 13 oz of formula by the time he goes to bed. He wakes to manage 16 to 18 by midnight but that is still pretty bad. He has ate a few bites of rice, noodles, strawberries and a few Cheetos but that's it! We have decreased his acid reflux med a little but it doesn't seem like he is having any problems that are obvious in that respect. Will have to call the cardiologist tomorrow or Monday. He seems fine otherwise...just not interested.

Thursday, August 20, 2009

16 pounds 8 oz!

JJ is at least gaining. This was a gain of 5 oz in 2 weeks. I think it will really pick up now as he has eaten better the last 3 days. He really enjoyed mac and cheese at Pearce's restaurant tonight. We might have to get the recipe!

I have been fortunate enough to email with a woman who has a 16 year old with ALCAPA repaired, the same defect that Jerry has. She found my blog through google and commented and we went from there. She is the first person I've "met" in the same situation and it has helped a lot to email with her. I read her blog and it I have to say it was kind of amazing. I felt much more emotion (fear, sadness, tension) more strongly, than I felt going through everything with Jerry. It is like a component of detachment that serves as a survival mechanism I guess. With Jerry, I really can't completely accept what is going on and still function in the best way possible to take care of him and our family. When I mentioned this to Jackie (mom of child with ALCAPA), she understood.

Here is something from Jackie's email on the whole eating issue:
Eating was a big issue. You have my sympathy. She came home with an ng tube and had it for around a year and it took some time to wean her from it and on to a proper diet. There were days when I thought she would never eat normally, she eat tiny amounts and was so fussy. These days she eats well in quantity; it isn't very varied, but you know, she's a decent weight, well in herself so I'm not going to worry about it. She doesn't seem to remember anything of it but I think there are some underlying control issues and maybe some deep, bad memories about how eating made her feel as a baby. The drs say sucking would have given her angina so I think they must relate food to pain on some level.

It is so hard to hear about and be reminded of all the pain JJ has gone through. Of course, we were in agony already because it was obvious something bothered him about eating since he was diagnosed at 3 weeks old. It is still hard to have it confirmed and know that every time we tried to feed him he knew pain was coming. And the way he would start to suck and then back away changing his mind. My poor guy had to decide if chest pain was better or hunger pain. Tough. Hopefully, this will be all behind us soon. We are always tinkering on the edge of needing that ng tube and maybe things would have been better or easier earlier on if he did have it. But I am glad we haven't and hope we won't have to go there.

Pictures and videos hopefully this weekend.

Tuesday, August 18, 2009

short update

I have so much in my mind that I would like to post, but no time! Jerry is doing well (my mind starts racing with questions and contradicting thoughts every time I say that because I never REALLY know!) and is recovered from his ear infections. It turned out that the yeast infection test was negative which was good because I could hardly get that medicine in him. His eating has been very poor since the illness and antibiotic but just picked up a bit today. Still so bad but I am excited for today's improvement. I believe he ate almost 10 noodles and really swallowed them by the 3rd time in! Drank 19 oz of formula instead of the recent 16 per day. On Thursday we will have a ear recheck and a weight check. My guess is 16 pounds 10 oz. That would be a 7oz gain from 2 weeks ago. A few breathing situations have been unsettling but he is overall very energetic, very happy, and ornery as can be! More soon with fun videos.

Thursday, August 6, 2009

Just a short journal

JJ is doing fine. I am glad I got him in yesterday as he seems to just be a tad worse today. Now the antibiotics and other med can kick in.

Think about my dad a lot. In case you haven't read from the beginning, my dad who passed on May 9th played a role in getting Jerry to his appointment at CCMH in time to probably save his life. I'll tell more of that story another time. Anyways, a few days ago we got on the computer live video cam with my mom for the first time in a very long time. We used to do it with my parents weekly, but had not since probably February or March. As we talked and visited with GiGi, Jerry started saying "Papa" clear as day while looking at the monitor. He remembers that Papa was always with Gigi. I guess we should never assume "he won't remember anything."

Another side note regarding Papa. My mom is having a hard time with anxiety (she and my dad did everything together) and is not driving hardly at all. Isaac came down from bed one morning this past week and asked if Papa could come back. I told him no and he said, "Well, then he must have just been in my dream." He then told me that in his dream GiGi was driving her car and Papa was with her. I thought it was very sweet and could be a little message for my mom. I am not sure it helped her much, but Isaac was happy that he had a dream of Papa.

Wednesday, August 5, 2009

Yes, 16.3 pounds! And ear infections.

We did a weight check as well as a check up for JJ's cold that he has had for a week. He has been pretty happy so I did not expect anything much more than a sinus infection. Always worried about his heart but feeling he was probably ok there. So it turns out he has double ear infections and some kind of yeast infection in his throat. Poor guy. So he is on 2 more meds for 10 and 14 days. The great news is that he gained weight! That is huge. I was worried since he wasn't eating anything the first few days of his cold. Here is a little video of his little brain working. I love his little face when he is concentrating! Please ignore my voice in the background!

Monday, August 3, 2009

6 wks. plus post op

This past Friday was six weeks from surgery. Wow. Jerry is doing really well. He is eating better...maybe a little better every few days. He did catch a cold recently, as careful as we are trying to be. Colds and viruses can be a much bigger deal for him than for other kids. So far, he seems fine except for not drinking or eating well because of the congestion. Actually, we are so happy to have a "normal cold." If he is not completely better in a few days we will bring him in to get checked, which we have to do by Friday for a weight check anyway. He is sleeping pretty well, but still wakes up a few times to drink an ounce or two of formula.

A few cute videos. When we wouldn't give Jerry his walker toys and he wasn't supposed to be that active yet, he started using this other toy as a walker. Now he is allowed to go and he is! He is taking 7 to 8 steps several times a day. He seems to stop when he realizes he is walking alone. It is really fun and amazing to see him like this from where he was six weeks ago! Thanks everyone!