Wednesday, March 31, 2010

Jerry likes barium!!


That might be an exaggeration but he did drink enough, with just suggestion, to get the pictures done. I was in shock. Thanks for all of your thoughts and prayers. It was rough but way easier than I had anticipated. He was very tired from getting up early and not drinking anything so I think that helped. It was sad to see him strapped down on the table but he was much more calm than I thought he would be. He seemed to almost understand what I was telling him...pictures of belly, no ouchies, special milk for belly pictures. He was kind of crying and singing Barney songs at the same time! The doctor said that everything looked ok but he would have to look a little closer to be sure. It is good if nothing is wrong but at the same time I wish there was something to fix! However, he was happier today than he has been in a while and did not complain of a belly ache for the first time in a while. He ate a GREAT dinner and pretty good the rest of the day too. He is gaining back some of the weight he lost when he was sick last week.


Tomorrow there will be "ouchies" as he gets his monthly synagis shots. Hopefully we are almost done with that.


Saturday, March 27, 2010

The latest













































































Isaac gives little bro snorkeling lessons...the extent of our "excursions"













































































































Jerry slept through Grand Cayman














































































THE CRUISE


Not my kid
So, JJ was kind of sick most of the time, we switched him to a new antibiotic. He had some fun but did not feel great a lot of the time. He did not eat more than a few bites of food the whole cruise but enjoyed throwing silverware at our servers who kept bringing him more things to try. It was cold most of our trip, but Isaac and I forced ourselves into the pool one day about 3. That would be the last time anyone on the cruise could enjoy the pool for at least 24 hours. I warned Isaac about the salt water in case he got it in his mouth...not helpful. In our playing around, Isaac gagged on a mouthful of saltwater and puked right in the pool. I hoped it would dissolve but no luck...it just floated right on top. No one seemed to notice but I reported out incident to the towel service. I just couldn't believe this was happening because a friend and I talked about how there is no chlorine and it would be so awful if YOUR kid pooped or puked in the pool and they had to drain it!! So we watched from our loungers as the workers skimmed the water with some people still swimming. A little later we saw one worker asking some swimmers for their room numbers and names. He seemed reluctant to tell them why (they were still in the pool!) and just kept asking and telling them it was a procedure. Finally, he told them and they jumped out pretty quick. Later that night, the pool was covered with nets. The next day the pool was empty!! As we approached Grand Cayman it was warm and people could swim....it there was water in the pool! We went on the island and the pool was filled when we passed by later that evening. The hot tubs were closed the whole cruise for "modification" so that was a bummer.

More Puke
Isaac was air sick getting off the plane and then sea sick the first day with some throwing up involved. The second last day he was very sea sick and threw up a few more times and needed an infirmary visit to get some meds. The seas were really rough. We could hear the waves banging on the ship really loud and they had bags taped around the ship for people like Isaac. I was a little queasy but had on a Rx patch. My mom had no side effects from this but it made my eyes so noticeably dilated. I couldn't read a menu or the phone. Better than sea sick for sure.
Choppy seas, choppy haircuts


I really was ready to have JJ's hair cut for a few weeks before the cruise but with he and Isaac sick it was hard to get out of the house to do it. So we decided when he started feeling better on the cruise to get it done since the price was good. It was the ship spa so we figured it should be good. Oh noooooooooooo. Jerry's hair was just all different lenghts...choppy...nothing symmetrical about it. He still looked cute, like a little boy and we were hoping people would comment on his bad hair cut instead of calling him a girl. He was sitting very still so it wasn't him. The girl was really sweet and seemed a bit nervous about cutting Jerry's hair so we chalked it up to that and decided to have Isaac's trimmed up too (there wasn't too many activities for us to do since it was cold and windy). Isaac's hair turned out even worse!! Nice, large, uneven sideburns! I joked that maybe she served food the day before and did maintenance the day before that. When I took Isaac here at home to get his fixed the stylist said it could be true that they do not have to have a license because there is no jurisdiction on the ship.
Cousins in Tampa and other good points

We were so happy to be in Tampa a few days before and a few days after the cruise. We stayed with Uncle Eric, Auntie Bri, Cousin Douglas and new baby Brady. JJ started feeling good and eating pretty well the days after the cruise and that was a relief. Jerry was sad to leave the park and right after this puked in baby Brady's new car seat...I guess he broke it in! Sorry Brady!

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The food on the cruise was divine (I gained 6 pounds!..that's not on the good list) and Isaac LOVED Camp Carnival. They had great day care, activities, and even took him to dinner. They did not have anything for Jerry's age except one play time with a parent. He, of course, was thrilled to get in that play room his brother got to go to. Both boys loved running around the ship "exploring" and going up and down the stairs and in the elevators. Our favorite part was our upgraded room with a balcony. It was warm enough a few nights to sit on the balcony with wine. Finally, our friends Chrissy and Gina surprised us with tickets for some free drinks on the ship....that was great. Thanks girls!
FEEDING TUBE OR NOT AND TESTS FOR WED
Weight gain and periactin
Jerry somehow gained a pound and 3 ounces, mostly while we were gone!! That brought him to 19-15 on the dr. scale. That was just amazing since it was the first weight gain in at least 3 months. We knew he had gained a few ounces after starting the appetite stimulant drug but then he got sick and hardly ate so we were shocked that he could have gained so much. He seems to have grown an inch too! I haven't checked normal height for his age lately but average weight would be about 28 pounds. I've been meaning to put that in because I realize wt doesn't mean much if you don't know what normal is. The new drug, periactin, has helped a lot with his sleep difficulties, a usually unwanted side effect. It just takes the hyper edge off for him when he is trying to sleep. Maybe that has helped him gain weight. We have been doing 2 doses and now are allowed to add a third dose. We are still not completely convinced if it is helping him since he is still kind of up and down with eating. It continues to be so painful and frustrating to watch him have such trouble and sometimes no interest in something so that should be so automatic and basic. If he improves greatly and gains more weight when we add the third dose we will be more sure and hopeful about periactin.
We saw the surgeon, Dr. Renyolds, to discuss the feeding tube that would go directly into his stomach. She was so kind and Jerry was pretty comfortable and never cried while we were there. The exam was limited so that was good. We will wait and see if Jerry continues to gain weight before scheduling the surgery. I know he would get through it and be fine. But it is surgery and we would like so much to protect him from it if he can gain the weight he needs and have more time to forget his painful past with eating.
GI tests set for Wed
Wednesday we go for upper abdominal x-rays. JJ will have to drink a couple of ounces of barium and lay flat for the x-rays. He will not be able to drink anything for 4 hours prior to our 8:30 appt. The first rough component is going to be driving the 4o minutes or so and telling him he can't have his bottle in the car. He always drinks his bottle in the car and will just be so confused about me telling him no. I am sure he will be anxious from the beginning and will probably not like the taste of barium. Thirdly, he will be crying which will lead to puking (he does this from crying) all while they are trying to get him to lay down and drink barium. I talked to a really nice girl that does the testing and she assured me that they have seen all of the these things. She admitted it can be rough but that they almost always get it accomplished somehow. They will not give any sedatives because it may give inaccurate results. Now I am less afraid of the g-tube and more afraid of this x-ray testing. I guess this will make the shots we have due next week no big deal. Since Jerry is complain a lot "belly hurt" lately and gagging a little more than he has in a long time, I am anxious to have things checked out. I think the belly aches are from the mirilax so I am not giving that any longer.

Just precautionary, we will also have a test done for cystic fibrosis. The first sign of CF can be slow growth. Usually though, those kids have a great appetite and still don't gain.


RECENTLY....
JJ started a fever on Thursday afternoon with some congestion. His heart rate and breathing were really fast and I was starting to worry. Keeping the fever down helped with the symptoms and his fever did not return last night after going to bed. Wow, that was an easy one!! The only problem is he lost weight that he had gained.
Last night, he tripped on some bags of groceries and must have twisted his ankle. It was over an hour before he would attempt to put weight on his foot and he then limped and cried. It seems to be getting better today; he is walking a little funny but seems to be forgetting about it and there are not really signs of a break. If he continues to walk funny I'll have them get a picture of his ankle while they do his belly!! Kind of kidding, I think it is fine.
We wish we would be seeing family for Easter or sometime soon. My mom was going to catch a ride with a friend here but now the friend is probably not coming. Anyone in Cleveland traveling to Chicago anytime, please let me know. I am sure soon my mom will feel like doing the trip alone but not quite yet.
HAPPY EASTER AND THANKS FOR CONTINUING TO THINK OF US AND OUR LITTLE MIRACLE!


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