Severe Allergic Reaction

Poor Jonathan...

We're probably going to have to go back to the doctor for a steroid injection to end this allergic reaction. The pictures from the previous post are nothing compared to what he looks like now. I'm not going to take any pictures because he looks pretty bad. Not only is he red like in the pictures below, but now he has welts all over his body. He looks like he's been stung by a thousand bees, and the welts that are all over his body look like mosquito bites and are some are larger then silver dollars. The past two mornings he's woken up very swollen, especially on his face. His face is so swollen that he looks Asian - his eyes are like slits. He doesn't even look like himself, that's how swollen his face is in the morning. It's not a pretty sight.

He is very uncomfortable and the hydrocortisone and benadryl help, but only temporarily. This poor kid looks like a train wreck. Actually, he looks more like he's just been in a huge brawl.

Hives Fives

Here are some pictures of Jonathan being a cheese ball despite the painful rashes from the erythromycin. He felt better without his clothes on, hence the "naked baby" pictures. I'm not sure if I've ever posted pictures of what his button looks like either...

Every Week It's Something

It took Jonathan about ten days to fully recover from his latest vomiting spell. We're not entirely sure if he caught another bug or if it was the new medication that he was on, since he seemed to be struggling before getting "sick" and because the rest of the family was sick shortly afterwards. I stayed home on Wednesday from work because of the flu. I guess it could be a combination of both. Either way the doctor and we decided to stop giving him medicine for reflux and emptying (bethanechol).

Jonathan was placed on the antibiotic erythromycin instead of bethanechol. Personally, I was excited about the new option. For a few days he seemed to be doing really well on it. He got over whatever was causing him to vomit and seemed to have a larger appetite, more then usual asking for snacks from the fridge and pantry. Today was like any other day, except that an hour or two after being given erythromycin this time Jonathan broke out in a bad rash all over his body. A quick Google search confirmed that a big rash all over the body is a severe reaction to the antibiotic. Additionally, every site said that if it is a reaction, to seek a doctor immediately. So, Stacey got him into see the pediatrician shortly thereafter. He agreed that it was probably an allergic reaction and that we should stop using erythromycin. Since this drug was our last option, we'll have to talk to the GI doctor to see if she would support trying out bethanechol again just to make sure the recent episode wasn't just due to getting the flu or something similar. The pediatrician also mentioned that if erythromycin seems to work and it is our only option, we could work with an Allergist to get him to a point where he could take it but not have a reaction to it.

Stacey also took Jonathan to see a Dietician this week. It was our first visit and what she told us made a lot of sense. Overall, she also encouraged us to push for growth (hormone and genetic) testing, since, in her opinion, something just doesn't seem to be adding up. Like I've been saying for awhile now, if Jonathan gets his daily requirement of calories he should be growing. Although we've had ups and downs, overall I think we've been giving him enough to where we should have seen more growth. Past goals have been to give Jonathan over 100% of what he needs, and we have found that difficult to maintain (not surprisingly). Even if we weren't hitting those goals we have been at least hitting the 100% goals with not much to show for it. She also mentioned that giving him too much (overshooting his requirements) could have an adverse affect on his system if it's being overloaded. That idea is consistent with what I've mentioned before about the cyclical nature of Jonathan's ability to keep food down. It could be as simple as after a certain point his body just needs a rest to deal with the overeating and that's why he rejects all food. We were also given a handout on a real-food smoothy through a G-tube study that looks very promising, but we're not starting that process just yet. The dietician wanted to wait and see what happened on erythromycin. We're going to take the approach over the next few weeks of only feeding Jonathan what his body needs (based on weight), and allowing him to snack on real food as he wants. Our hope is that this approach will eliminate the vomiting, establish a solid amount of time consistently getting his caloric requirements, so that we can either see him respond and gain weight or use this information to highlight the fact that something just isn't right.

We have our next visit scheduled with the GI doctor in a few weeks, unless she wants to see us sooner due to the recent developments. Our appointment with the Endocrinologist (growth issues) isn't scheduled until the first week of April, unfortunately. We've been trying to get in sooner, but his appointments are pretty well spoken for. My hope at this point is for things to calm down and to get back to what we call our abnormal normal.

Tottenham 5-0 Newcastle

We're almost two-thirds of the way through the season and Spurs are firmly in control of third place. A 5-0 beat down of Newcastle today kept pace with those above us and increased the gap to 10 points below us. Adebayor had four assists and one goal while newcomer Saha scored two in his home debut. Considering Harry's two-week trial ended earlier this week with a non-guilty verdict, the past few days have been good.

To be perfectly honest, the past five months have been amazing. Since September 1st, we've only lost twice in the Premier League. Although I don't expect to win the league for the first time in over 50 years, we still have an outside chance. We've been so good that Harry is probably going to be offered the England manager job in the near future. We've been nothing short of great since he took over, so I can't stand the thought of him leaving. It's probably inevitable though.

We face a tough test in our next few league games. However, after that things open up a bit and there is a possibility we could make a run for glory at the end of the season. Right now I'm just enjoying success and hoping we can build on it for the future. It's a far cry from where we were almost 5 years ago when I started supporting Tottenham.

Dancing King

Jonathan has some pretty sweet moves. Although this video doesn't showcase them, in the past he's shown me that he can move to the beat pretty well. He obviously likes music (as all kids seem to), but I'm sensing that it strikes a "chord" with him more then the average toddler. He's always up for listening to music and dancing.

In the past we've associated making a clicking sound with our mouth with music. He's been able to make that sound for at least six months now, and during sections of this video you can hear him "beat-boxing" to the music. He and Julia really enjoy the opening scene and music for GT5 on my PS3, and playing it for them makes me feel in some way like I actually still have time for things like this in my life (yeah right).

I've really enjoyed watching this video over the past few days. It reminds me of the good days when everything is going well with him. Since this video was taken on Sunday afternoon, Jonathan hasn't been able to keep much food down. Because of that he's been pretty lethargic. We never know if he caught something that is going around, ate something he shouldn't have, or if his system needs a rest. We think this time it's because we started him on new meds.

Spanglesh

Julia can count to ten in Spanish...she's been doing it often since she learned it in preschool. The funniest part comes in the middle, specifically at number four:

"Uno dos tres - squatro cinco seis - siete ocho nueve diez"

Kids Bath

Tonight I finished up the trim in the kids bathroom. The unexpected snow day on Friday presented me with extra time I wasn't expecting. Not counting the laundry room, since the trim is only a piece of a much larger project, all I have left to finish are Julia and Jonathan's bedrooms. This has been a long project. The only casualty was a broken light bulb.

Obviously, the work is never done. At some point I'm going to trim out the mirrors and swap out the light fixtures. The lights are so hot it's like we have eight Easy Bake Ovens in each bathroom. I also finished the loft a week or so ago, but between that and the laundry room we have some unfinished business. I'm getting pretty close to resting my painting tools for a few years, or at least until next winter.

Food Therapy Evaluation

Yesterday Stacey took Jonathan down to the feeding clinic for his initial evaluation. The appointment was mostly informative for them, with Stacey giving them a brief history and answering questions about how things are going right now. We brought food and they also had a lot of food there, so they were able to see Jonathan munching on a few snacks. Overall, not much happened at the evaluation, except that we get to see even more doctors and attend more appointments in the coming months.

We're going to start working with a nutritionist once a month, at least in the beginning stages. I think after a few visits we probably won't need her help, considering the amount of knowledge we and my parents already possess on this topic. I see this visit as more of a confirmation that we are doing things right. Plus, the internet is a pretty powerful tool on this subject as well. She was very interested in working with Jonathan because we'll have to feed him through his tube initially, using what will essentially be our own liquid creations. It will have to be liquid enough to fit through the current button Jonathan has, unless we think it would be better to upgrade the size of the opening so we can feed him a more chunky-style creation. We'll see how the current button works first and maybe continue to only use formula through the pump if he can start eating enough real food on his own throughout the day.

He'll also begin a weekly food therapy clinic with a bunch of other kids. The first pass is scheduled for once a week for about three months. We think he'll do better in a social setting with other kids, so he can observe them eating. More importantly, he usually seems to feel more comfortable when there are a lot of other kids around versus just one of us and a doctor or nurse or both. It sounds like the format will be a little bit like an all you can eat buffet/potluck/party for kids. I think we'll just have to make sure he's hungry when we show up.

One of the pediatricians at the evaluation expressed her concern that we should continue to press on with testing, specifically testing related to growth hormones, etc (with our endocrinologist). She echoed my concern that although things are coming back normal otherwise for Jonathan's GI system, it doesn't make sense that he's not growing and putting on weight. With a normal child, even reaching the 100% daily caloric mark should still cause him to grow (as I would expect). The fact that we're giving him over that amount consistently now and he's still not growing seems suspect. We have a message waiting with the endocrinologist's office asking if we can have some baseline tests done now even if he doesn't think anything is going on. We don't see him for a few months, so we're hoping we can do some testing prior to our next visit.

Career Goals

I asked Julia yesterday if she wanted to be a doctor when she grows up. We had just watched a news story about doctors and she seemed to be pretty interested. She thought about it for a second or two but then responded that she didn't want to be a doctor.

Instead, she informed me, she wants to be a soccer player when she grows up. I can't argue with that. Although we've never mentioned anything about playing soccer professionally (she came up with this entirely on her own), she probably has observed me enough to assume that answer would be well received.

She made it clear that she doesn't want to start playing until she's much older though - specifically, five years old. She is convinced that when she turns five years old this year she'll be ready to play. Glad to see she's already planned out the next year of her life and has specific milestones established.

All In The Family

My cousin Andy emailed the family today. He was looking for an electronic copy of the memorable picture of our grandpa on the Colorado A&M (now Colorado State) track team. My parents had it, so my mom scanned the picture and sent it to everyone. As you can tell from the photo's caption, the year was 1938 and Dave Sudduth had some wheels. Obviously, this is where both my dad and I got our speed (good genes).

On a hunch I Googled my grandpa and Colorado A&M and stumbled across the university's photo repository. They had saved, digitized, and uploaded thousands of photos from decades ago. Searching through the archives I was able to find a few more photos of my grandpa. Some of the pictures that I found and shared with the rest of the family had never been seen before, so I felt pretty good about my discovery.

To put this period of time into perspective, 1938 was also a fascinating time in world history. At the same time these pictures were taken of my grandpa (spring 1938), Hitler had just begun to "acquire" territory in Europe. In March, Austria was annexed and became part of Nazi Germany. The following year war broke out in Europe and the rest, as they say, is history. My grandpa, the college track star, went on to serve in the Navy aboard a ship in the Pacific. Interesting, interesting times, both in our family and in world history.