Feeding Appointment

Mom and I took Tucker to the feeding/motility appointment yesterday at Children's Hospital in New Orleans. Tucker slept the whole way there (he almost never sleeps in the car), and was a little "off" at the appointment. It was the first time I'd ever been to Children's; it seems like a nice enough place. Tucker weighed 15.8 kilograms and was 39 inches tall, this put him in the 22nd percentile for weight and 2nd percentile for height. This cracks me up because he seems so tall and skinny to me, I have to buy him long enough pants and then get them altered to be skinny enough. But according to the growth chart, he is a little chunky. I'd hate to see if he lost any weight, though. So the good thing about this is that he is growing, both height and weight wise. The feeding team includes a GI doctor, psychologist, and an OT. Two students also sat in on the meeting. The whole appointment took about an hour. I went over Tucker's entire medical history....at the end, the psychologist said, "well, it's no wonder that he doesn't eat." They watched him eat a little. He doesn't mind touching or playing with food (many kids get sick from the sight or smell of food), so he rubbed the cheetos crumbs and spaghettios around the plate, and ate a little of each. He also took a few sips of water. The team thought that Tucker actually had more potential than I had explained. They agree with his OT (Tucker had gone to OT Monday afternoon and we discussed his feeding) that Tucker wants to eat but several things are stopping him. His sensory issues are stopping the development of his oral motor skills. They agree with his OT that his food isn't even getting to his esophagus, so esophageal motility is not likely the problem. The doctor actually thinks Tucker doesn't have any motility issues, which was surprising to hear. Many kids with mito have motility issues, and lately Tucker has had constipation and diarrhea so much; the doctor said that didn't sound like motility issues, just sickness. He also looked at Tucker's belly and said that he isn't distended. Hopefully Tucker wasn't just having a skinny tummy day, and this doctor is right about his having no issues. The team all kind of looked at each other, then the OT suggested that Tucker start a medicine to help with his sensory issues. Tucker has been in sensory therapy for 2 years, and I had never heard of medicine to help those issues. The other members of the team nodded their heads in agreement, and the doctor wrote a prescription for Gabapentin, (neurontin), which is a medicine for seizure and pain management. It helps to stabilize membranes, which also helps with sensory issues. It will help to desensitize Tucker's mouth and tongue so that the food is not so hard for him to eat. As I took this information in, I asked if this drug would help all of Tucker's sensory issues. The doctor said it would, and that this medicine would likely help Tucker to improve in many areas. He said that Tucker might have pain every day, and he just can't tell us about it. Giving him this medicine could give him his first experience at a pain-free day, which would make his life better all around. I did not like that idea! To think that my son has been in any kind of chronic pain without us knowing is very discomforting. Tucker pulls his hair and grinds his teeth all the time. He looks like a pretty stressed out kid. Sometimes when he is just "off" with his behavior I will give him Advil or Tylenol and he becomes much happier. This only happens occasionally, but we always wonder if there is more going on with Tucker than what we can see. And of course he doesn't tell us anything. So, if he does have any chronic pain, this medicine should help. The doctor gave us a medical study that he co-authored. It was about using a pain management approach to getting nonverbal tube-fed kids transitioned onto oral feeding. It is a very interesting study. They began with 9 nonverbal toddlers, who had various medical complications that led them to be fed 100% by g-tube. These kids also had obvious stomach pain and issues, such as retching, which Tucker doesn't do. So the kids all got two things-one, they were put on the gabapentin, and two, they switched to a g/j tube so that for 8 weeks they got their formula straight into their intestines to give their tummies a break. Tucker is not getting that part. So at whatever point the kids each started eating better by mouth, the doctors added the megace in (medicine to increase appetite-Tucker was on this for many months with no real progress). After 8 weeks, 8 of the 9 kids were eating 100% by mouth. Months later, this was still working. The last kid was eating 50% by tube and 50% by mouth. The kids were weaned off of the megace at some point, not sure when. The GI doc said that the approach we tried two summers ago (giving Tucker megace to increase his appetite, then basically starving him out) is the second step in this protocol, not the first-that's why it didn't work. Tucker has to have weeks of positive eating experiences to unlearn all of the negative associations he has with food. They expect that once he has a more positive view of food, working with OT and speech once a week (plus the school lunch and snacks each day) will help his oral motor skill level improve. We have a follow up appointment in two months, and by then they just expect him to be trying food three times a day; they want him to take 5-6 real bites at each feeding. Their goal is not volume, just a change in his skill level and comfort. That's fine with us, just seeing a change like that would be great. As we left the office, Mom tried to gauge my reaction. I said the appointment could have been the best news we got in a very long time....IF it works. I am very skeptical of any good news, or any new medicine that is supposed to fix Tucker's issues. I am happy to try anything to help him, but I guess I just don't want to get my hopes up. After actually reading the study last night, I feel much more excited about the new medicine and how it could help Tucker. I will be filling his prescription tomorrow, and starting the med 3 times a day on Saturday. There should be no side effects, but I still want to wait for a non-school day to start the new medicine so I can watch Tucker carefully all day. I would love for him to be able to enjoy food. Having him eat even 50% of his food by mouth just seems unreal to me, but we will see:) It is so funny because Tucker's doctor in Houston is actually the doctor who suggested we see this feeding team. Tucker's therapists in Baton Rouge didn't even know that Children's had re-opened their feeding clinc after Katrina. (Apparently, they re-opened 2 years ago, but I had never heard of them...and believe me, I have asked around!) So we had to go to Houston to get referred back to New Orleans, and hopefully we are finally headed in a good direction.

Feeding/Motility Clinic Tomorrow

Tucker has his first appointment at the Motility and Feeding Clinic tomorrow in New Orleans. Motility is the movement of food from the mouth, on down to the colon and out. Tucker has dysmotility, meaning that his digestive tract doesn't move food the way that it should. We don't really know the extent of this or how it affects him, so we will see if the doctors order tests tomorrow. One big issue we think he may have is esophageal dysmotility, meaning that his esophagus doesn't really push the food down. His OT thinks his problems starts before that maybe, she even mentioned it being some type of nerve problem that affects his tongue and other oral muscles. For those who don't know our history, Tucker has been in lots of feeding therapy pretty much since birth. I think I fed him a total of 2 bottles in his life?? Not really sure of the number...one experience was very positive, during the time he got off the ventilator when he was about 2 months old. Preemies have big problems learning how to eat at first, but Tucker was an amazing eater for about a week. The nurses and therapists were so pleased with him, until about a week later when his little lungs couldn't breathe for him, and he was too tired to bottle feed (bottle feeding takes a lot of energy, and preemies have very little extra energy). He ended up back on the ventilator for years, and for about 5 months he was not allowed to eat orally due to fear of aspiration. So the second time that the doctors let Tucker try the bottle, it was pretty much a disaster. He had no interest in it, and no strength in his mouth or chin to drink. So that was a bust, but we have tried over and over through the years to feed him. We usually have a few weeks of success, only to be moved back by any health issue or due to behavior issues. We have tried starving him out (seriously), giving him appetite stimulant, numerous reinforcements, and the social interaction (i.e. "peer pressure"). Tucker has had amazing therapists working with him for years, and lately we are taking a break from feeding as we are at some type of physical roadblock. His therapists really believe that Tucker wants to eat, but that there are two problems: 1. he has had so much failure in the past that he has just given up. 2. Something is physically preventing him from swallowing his food. None of us like to be forced to do things we aren't good at....in Tucker's case, eating is not a positive experience. Tucker has a g-button, and he gets formula and blended food through this. He is 100% tube-fed. Medically speaking, having a g-button is not a big deal. There isn't an increased risk of infection; Tucker can take baths and swim, and if he pulls it out or it falls out, we can put a new one in very easily. Giving him the feedings is really a piece of cake! Many moms have pointed out to me how "easy" we have it, since we just pour his food and medicines right in, regardless of how they taste or whether or not Tucker is even awake. Socially, though, not eating is a HUGE deal! I never realized just how much of our lives revolve around food. Planning meals, grocery shopping, going out to lunch or dinner with friends or colleagues, birthday parties, weddings, holidays (especially Turkey Day coming up next week), we pretty much plan our lives around when and what we are going to eat next. Tucker could care less what his next meal is; he just knows that he has to sit still while he gets it. He is really hilarious, he even hooks the extenstion tubing up to his button and helps me put his meds in. When you ask him where his belly button is, he points to his g-button. We make jokes about Tucker's feeding issues. Chris says that food is Tucker's cryptonite. Everyone in our family knows when they open a bag of snacks for Tucker, they have to give him a napkin to discard the well-licked snacks....because they aren't going down his throat. They also know to check any opened food, because there is a chance that Tucker has licked food and put it back in! One of Tucker's favorite activities is to lick all of the flavor off of something, then force feed it to someone else. It's disgusting, but also really funny. Missy once joked that Tucker and Samuel would be able to drink their friends under the table by pouring the beer directly into their feeding tubes! :) We joke about everything, but at every meal (especially meals with other people) we realize what an odd situation we are in. Tucker usually doesn't sit down at mealtimes because he would much rather play or watch tv. He behaves well at restaurants and in the cafeteria at school, but it takes a lot of redirection and reminders. When our families get together (which is at least twice a week) we all take turns entertaining Tucker since he does not enjoy sitting with us. Our families (especially the Galatas side!) love to eat, and when we get together, about 80% of the time is spent at the table. Chris and I have talked about Tucker's feeding, and we have changed our goals in this area. We would like Tucker to sit with the family at mealtimes, sit with kids to eat cake and ice cream at birthday parties, and participate in food-centered activities even if he doesn't really eat the food. He doesn't need to actually eat anything, just want to be a part of the experience. We just don't see a point in Tucker's life when he wouldn't have his g-button. That is just not realistic. This is a definite change in our thinking; as recently as July of this year we were looking forward to the day when Tucker would just eat with his mouth. It's partly because it's a battle we are all tired of fighting. It also has a lot to do with Tucker's mito diagnosis. Mito kids need adequate nutrition to get to their cells, and the g-button is a great way to guarantee that Tucker gets an adequate amount and type of foods. Tucker also has to take a good bit of medicine and supplements, and it is just easier to put them in his button than to make any kid take all of that by mouth. We made the choice a few months ago to put Tucker's oral feedings to the back of the priority list. Tomorrow we move it right back up to top where it has been for year. Hopefully we will get some new information to help us form our new plan for Tucker.

Quick Medical Update

Tucker is doing well medically lately, but I need to update on a few issues, mainly so I don't forget when they happened. I haven't gotten a chance to talk about this with anyone, so sorry if you are reading this here and it's the first you've heard about it. Dr T (lung doctor) called Friday afternoon, and he said he is faxing over Tucker's sleep study to Dr K. He is not making any changes for now, but he thought Dr K might have some ideas...why this wasn't faxed over 10 weeks ago when we got the results, I'm not sure...I have been calling the office and wondering what the plan is for my kid who barely sleeps (he goes to sleep-he just doesn't get any "real" or restful sleep, basically making it pointless) who has mito and therefore really needs his sleep. So the plan is to refer him to Dr K, which is fine, especially since Dr K already wanted Tucker to see Dr P in Houston, which is the doctor who specializes in lungs, sleep, and immunology in Houston. That was a lot of waiting for no real answers; we do see Dr T in December, maybe by that point Dr K will have looked over the sleep study and told him or us something. I also got a call on Friday from the motility doctor in New Orleans. Dr K recommended that Tucker see a motility specialist; this is someone who not only specializes in the Gastro Intestinal Tract (GI doctor), but someone who specializes in the motion of the digestive track. You chew and swallow your food, and gravity doesn't just take it through your body-there are many movements, in your esophagus, stomach, small intestine, and colon, that help your body to absorb the nutrients you need and then to excrete the waste properly. If something is wrong with this system, then it can affect everything else. Tucker's pedi had to fill out paperwork so the dr in New Orleans would see us, so I thought it would be weeks before we got a phone call. So I was surprised when the nurse called me last Friday and told us to come in Nov 2nd....I asked, "can we wait a little while?" She must have thought I was crazy! Tucker just missed 2 days of school last week, and he has a field trip this week to the Global Wildlife place, so I just want him to have one full week of school before he misses again for appointments. Not to mention that the motility doc will likely order many tests, and give us new very helpful information....but not information that I am really looking forward to getting..... So I am feeling like a pretty bad mom at this point, as now the appointment is 14 days later than it could have been....We have just been having such a good few days, and our last doctor's appointment actually brought good news. So I am not looking forward to starting up again. This week Tucker has regular school, then November 10th we will see the craniofacial team (8 specialists who come in and out and examine Tucker in a matter of hours, then meet afterwards and write a report on his head and facial issues), which is pretty stressful. Then the following week we see the motility specialist, then a trip to the dentist during the Thanksgiving holidays, then two appointments the first week of December-with his other GI (if we even keep her after the new appointment) and one with Dr T. We also have to fit in a follow-up appointment with the ENT in New Orleans to make a plan in case Tucker gets a cold...he still has a thin and floppy trachea, so I need to know at what point I should call her for steroids. We really only average one appointment per week, and we've had much busier times in our lives, but I am not looking forward to the next few weeks:( We have also been confused by Tucker's blood sugar lately. Just when Dr K said it was okay to just monitor him, his blood sugars started getting even higher. I'm not sure if I already put this in a previous post, but there are times when Tucker acts insane...running around, can't seem to stop himself, shrieking...we had attributed to his ADD/autism/just being a kid, but lately we have checked his blood sugar at that time. The other day it was 340 and just now Chris checked it and it was 347. Apparently, Tucker is having literal "sugar highs." Another time, right after he pooped it was over 360...which could be a bad sign for both his endo and GI status. So I am going to call the endocrinologist in BR tomorrow, to see what he thinks...the charts that both he and Dr K have seen don't have any readings above 300, so I want to see what he wants to do with that new information. Tucker has really been hilarious lately; he still talks a lot, and he is very into money right now! He likes to take money out of Chris's pockets and my wallet and put it in his Tiger bank. He even goes for the quarters, even though we try to keep those for ourselves:) Most of the time Chris just empties out Tucker's bank and lets him refill it with the same money, but I think Tucker has caught on to that trick! Tucker really enjoyed Trick or Treating, going get candy with a tube-fed child is quite an experience! He has no intention of eating any of it, but he is very particular about what he puts in his bucket. He tried to put all of his chocolate into Molli's bucket, but Chris and I put a stop to that! I think that starting the Melatonin for Tucker's sleep has really helped him. It is not supposed to make Tucker's sleep more restful, just help his body to relax to fall asleep in the first place. At first we were giving it to him early, so then he'd fall asleep but then wake up full of energy at 3am...not the best idea! So we have been giving it to him later, but he still falls asleep around 830 at night, and gets up around 7am, which is a huge improvement from his old 10pm bedtime. His sleep has made a big difference in his behavior-I'm not sure if it's affected his actual cognitive function, though. He got a "good" behavior last week (the day he got his eggs for a prize!) and then today he got his first "excellent" behavior ever:)

A little TOO Excited:)

I am probably about to majorly jinx myself but....Tucker has now been diarrhea-free for 24 hours!!! And to add to that, he had a solid stool today!!! I sent out a mass text to announce the news, haha, so sorry if you are my friend and didn't appreciate the text:) Tucker woke up with more energy today; I'd say that "normal" Tucker is at 100%, well today Tucker is at more like 20%, but it's much better than the past two days when he was down to about 1%. Yesterday and last night especially, I was very scared. Tucker had no energy, he just laid in his bed. Tucker has never ever been slowed down by an illness....even when he had an ear infection I wouldn't know, other than the awful smell! He went to school and had therapy, but was fussy....I made sure he had some extra sleep during that time, and then he was fine. But this sickness was just something else....really freaked us all out:( Last night Chris and I broke out the sat monitor to check Tucker's oxygen (100%) and heartrate (99), along with checking his blood sugars more often (stayed in the range of 100-119). Tucker's blood sugar is too high, we all know that. What I didn't know (thanks Missy!!) is that a quick increase in blood sugar can cause "dumping" which leads to diarrhea, especially when it happens after every feed (like Tucker's was) and when his energy is completely wiped out. So when other kids got the same virus Tucker got, they were sick for 2 days then went back to school. But the virus threw Tucker's whole body off guard, and his sugars possibly went nuts which made the problem much worse. To counteract this problem in the short-term, we could have put Tucker on continuous feeds, except we don't have a feeding pump! Tucker has always received "bolus" feeds, which means that we feed him five meals a day in his g-button. If for some reason his body can't tolerate that amount, we would move him to continuous feeds. This means that a bag of formula would be hooked to a pump and to Tucker's button, and that a small amount of food would constantly drip into Tucker's tummy all day...or for many hours a day. Tucker would carry the pump and formula around on his back in a backpack....a very common sight with Mito kids. Tucker's stuffed animal Mito turtle even has a removable shell since so many of the kids have the feeding backpacks. So last night I e-mailed Tucker's mito doctor. She emailed me today and said that Tucker should not be having diarrhea this long. So she suggested we stop his Levo-Carnitine, which I did today. Tucker has been on Levo-Carnitine since September 7th to give his body more energy. Dr. K's nurse said that we can restart it at half-dose once his poop is back to normal, and if the diarrhea returns then we will discontinue this med. It doesn't make sense that this would have caused the problems, but maybe since he had the virus the Levo-Carnitine didn't help matters at that point. She also suggested that we talk to Tucker's GI doctor and make a plan. The GI doctor would be the dr to order a feeding pump, and she is in New Orleans so we could always drive to her office if she needed to see Tucker. I called the GI doctor today, she was probably susprised to hear from me since we hadn't seen her since May. The nurse called me to get all of Tucker's symptoms, and they are supposed to call me back later. I want a plan in place in case this happens again. We are only at the beginning of "sick" season, so who knows what the next few months have in store for us. I am posting the link to an article called "The Poop Chronicles." All new moms know the importance of their baby's poop cycle-it has such a big effect on their happiness and health! Well, moms of special needs kids don't really ever let that fascination with poop go away! One of my main concerns when Tucker started preschool was that I wouldn't know all the details of each BM, which are an important indicator of his overall health. This might sound silly to most people, but it was a big deal to me. The past 9 days have given me a whole new appreciation for the moms and dads of the kids who deal with chronic GI issues....I really hope this sickness is over and not a new symptom for us, as I don't think I'm cut out for this. http://articles.complexchild.com/oct2010/00242.html

Nuts and Bolts Update

Lots of planning is going on for Tucker right now, and I want to get it all out and straight in my head and for everyone. When Tucker got diagnosed with Mito in July, we began questioning every symptom and illness Tucker has ever had, and trying to look at them from a Mito light or a Prematurity light, kind of looking at where it all came from. As we went to follow-up appointments for lungs, eyes, and pediatrics, doctors' reactions to the diagnosis made it look kind of like a lightbulb went off, like "ah, yes, that makes sense." As time went on, we have attributed many of the symptoms that were nothing like mito (being over excited and having lots of energy) to actually being exactly like mito....because that is Tucker's way of trying to compensate for his lack of energy. So it has taken me weeks, months really, to wrap my brain around every issue I wanted to discuss. When we left Dr K's office in July, we agreed we didn't need to come back until February. A few weeks ago, I sent Dr K's nurse a list of about 5 detailed questions, about his blood sugar, sleep, hyperactivity, breathing, eating, and his heart. I also want to discuss his autonomic function (whole new ball of wax, right?). Dr K's nurse always emails me back right away, pretty much instantly. I often wonder when this team sleeps, because when I read other blogs it seems like they are in hospital rooms, at conferences, in clinic, and answering emails simultaneously! Anyways, this time I got no response. I waited about a week, then I emailed her again; she apologized but said she never got it. I re-sent it, and for some reason, I re-sent it about 3 more times before she finally got it. I even sent it from Chris's email, and I check each time, it was in my "sent" folder. So anyways, I finally saved it as a Word Document and sent it as an attachment. I got a reply that they would like us to come for a visit in October to really address my questions. Tucker is set to get more bloodwork then anyways, and he needs an echo/EKG on his heart that must be performed there, so we are trying to get all this scheduled together. Dr K also wants Tucker on insulin....I was pretty sure she would, since Tucker's "normal" blood sugars are fairly high. Since there is no cure for mito (yet), the treatment is to treat the symptoms before they become a big problem if possible. So maybe a regular patient would get insulin at a certain point, but a kid with mito may need it sooner because any extra work the body has to do in order to regulate sugars is really too much stress. So I don't know anything about insulin; I have a suspicion that it involves daily shots....well at least it's not bad enough that she wanted him to start it right away. She also wants to discuss Tucker's sleep study. I am very interested in seeing her point-of-view on this, and to see what she recommends. I need to call Dr T's office to see what he wants to do, since we found out 5 weeks ago that Tucker gets horrible sleep and no real rest, and we have no plan to deal with that yet. I also feel that Tucker does not get enough sleep for a regular 4-year-old, let alone a kid with mito. He gets about 9 hours most nights, and I would much rather him get 12-13. Ideally, going to bed at 8, wake up at 7 (that's 11 hours) then take the one-hour nap at school. So far he has taken a nap at school about two times, and on those days his behavior and energy level were great when he got home. The solution is not for me to pick him up early from school, though, because I don't know that he would nap any better for me! His teachers are trying so many techniques at school to get him to sleep, we are just praying that one works out! I also had questions about Tucker's motility. Motility is the motion of the food in the digestive system. When you chew and swallow, your esophagus moves the food down into the tummy, then the tummy has acid to break it down and push it on through the intestines, where the nutrients are absorbed, and waste is pushed out. That is a super simple explanation, really it is way more than that. So Dr K added GI Dysmotility on Tucker's list of symptoms, and we were puzzled by that. Tucker has regular bowel movements, and when we vent his g-tube before feedings, no formula comes up (if it came up 4 hours after a feeding, that would mean that obviously it had not moved downward to the intestines). Two years ago Tucker had a test to see if his fundoapplication was still in place (the surgery he got at 3 months old to wrap his tummy around his esophagus to prevent life-threatening reflux). This test showed that his fundo was definitely in place, and that his tummy emptied at a perfect rate. So we were very happy, but that test was over 2 years ago, so who knows what it looks like now? Tucker has always had a big gut, and little everything else! When he was 1 and 2, he looked like a bowling ball with little stick legs, my grandma Mimi had to do major alterations to every pair of pants he wore those two winters because he had to have big sized pants to fit over his gut, but then the legs and everything else was WAY too big. Last year he wore size 3T shirts and 18month pants, and Maw Maw didn't have to alter them, this year he looks like he will fit 2T pants and 4T/5 shirts. We always just laughed about it and said it's just part of his anatomy, but now I realize it could be because of slow motility. So anyways, that's something that we are going to look into. Dr K recommended a GI doc at Children's Hospital in New Orleans who specializes in motility issues as well as feeding issues. If a child has motility issues, their food may not move, and therefore eating isn't very comfortable. Tucker had a scope in May that showed he had no reflux, so eating is not painful for him. That is very good, but his lack of progress with feeding lately has got us all so confused! So more testing is in the future for that. I need to call and make that appointment. So on top of all of that, we had the follow-up at the Pediatric Psychology office two weeks ago. Chris and I took Tucker in for his attention issues, and we got the "official" autism diagnosis finally. Sounds weird, I know, since we have been basically treating him like he has autism for 2 years now, but the diagnosis was not formally in his chart. The diagnosis code won't help him get services, though, because our insurance is actually one of the plans in LA that are not covered by the new law that mandates coverage of autism services. I left the office actually kind of happy; the 10 page report they typed up sounded exactly like Tucker, and even had recommendations. Most of the recommendations were already being implemented at school, and much of the literature they recommended for us to read....well, we already have it all, haha! It just once again reminds me what a weird crazy ride we have been on the last 4 years.....when you get told your 4-year-old son definitely has autism, it should devastate you....make you rethink everything.....but it honestly wasn't even the worst news I got this month. One thing that was very interesting, but that I already knew. Mitochondrial disorder is very closely linked to autism. The psychologist said that she couldn't say for certain in Tucker's case, but that the research shows that his mitochondrial problems caused his autism; if he didn't have the mito, he wouldn't have the autism basically. So that hit a nerve, adding to my new mantra "I hate mito!" Sounds like a good motto, right? Last week, in an attempt to get every test imaginable done in 2010 and therefore save money in 2011 (that's my great new plan!), I called Tucker's neurosurgeon to schedule his annual follow-up in November. I said if he needed any tests (CT scan or MRI) I would really like them scheduled in 2010. They called me back the next day and said that Tucker wouldn't need any tests, but the neurosurgeon doesn't want to see us in his clinic; he wants us to come back to the cranio-facial team. This is the 8-specialist team that Tucker saw last October. This is the appointment where we learned that 3 of Tucker's 5 skull sutures are closed, and that basically his head hasn't grown in years, and it isn't trying to. So there was no surgical fix, so we thought we were done with them. It makes for a long day! We wait in one room, while different specialists come in: neurologist, neurosurgeon, geneticist, pediatric dentist, pediatric oral surgeon, pediatrician, speech therapist, and ENT. After they each see all of the patients, they spend the whole afternoon discussing each patient and writing reports with recommendations. We will likely see them in November (they only meet together once a month, so I'm not sure of the date yet). I really don't know what to expect with them-just a repeat of last year where everyone said he looks great except for the neurosurgeon who found glaring problems....I really have no idea! Tucker also has a cold that he can't get rid of. We are giving him his usual Claritin, Nasonex, and Albuterol treatments, on top of which I have added Triaminic. He had a 100 degree fever Thursday night, his usual temperature is about 97 degrees, and he almost NEVER goes above that, even when he is sick. So I was worried about him, but the pediatrician said he is okay. She said it is a "bummer" (really, she said that!) that the meds aren't controlling the cold, but he has no infections, his ears and throat looked great. Also his lungs sound very clear (yay!). If this continues, I will put in a call to the ENT just to make sure she is okay with the situation. Ahhh, and to think....about a week ago I was complaining that I was bored!!!! What on earth was I thinking?? On another note, I am still in shock and so so sad about Samuel. His fight with mito had a direct and obvious impact on how we are now treating Tucker, and it just amazes me how many lives this little boy and his family have touched. Mom and I are leaving for the funeral tomorrow. We will stay in Lake Charles tomorrow night then head to Katy Texas for the funeral services and the celebration of Samuel's life on Wednesday afternoon. Chris has to stay home to work (he uses all of his vacation time for Tucker's appointments), and Mrs. Mia and Mr. Ricky have graciously offered to take care of Tucker in the mornings and get him on the bus, while Aunt Alexis and Aunt Sarah are getting him off the bus and keeping him until Chris gets home. I am extremely nervous to leave him! I know that sounds funny, but I really am. I just really need to be there with the Knight family....as selfish as that may sound....I really need to hug them and be there to celebrate Samuel.