Unexpected Trip

So when I titled the last post "Busy Week," I must have had a psychic moment:) We had several appointments lined up this week, but yesterday we made an unexpected trip to Houston. We had an appointment with the mito doc in March. At this appointment we discussed scheduling a muscle biopsy and lumbar puncture. We thought it would be several months before they put him on the schedule, since they only perform a few per month. So I got a call yesterday from Dr K's nurse, telling us Tucker could be on the biopsy schedule for May 21st, the only catch was that we had to be in Houston the next afternoon to meet the surgeon for a pre-op appointment. I had to decide right then, so I said "ummm...we'll be there!" then I called Chris and told him to come home early and take Thursday off because we were headed to Houston. We packed up and headed to Aunt Kim's in Lake Charles first. Tucker does very well on car trips, but around the 2 hour mark he gets a little crazy! Luckily Aunt Kim, Uncle David, Morgan, and Grace live about 2 1/2 hours away, so we have stopped there on every Houston trip so far. Tucker knew we were going there, but around Siegen lane we realized we forgot his feeding supplies. These are not something you can just pick up at Wal Mart, so we had to turn around to get them from home. He screamed and pulled his hair on the way home, even though we promised him we would turn right around after we got his stuff! Once we pulled out of the driveway, he was grinning like a JackOLantern, saying "Gogan", which we consider a combination of Grace and Morgan! We had fun with them, as usual. Chris and I jumped on the trampoline with Tucker and Morgan while Grace had baseball practice. Grace came home and was so excited to play with my new IPhone....until she realized I was so lame, and I have no apps or music! I only use it to call, text, and check facebook, so it was no fun to her at all. This morning we left Lake Charles and made it to Houston pretty quickly. I have only been to Memorial Hermann twice, but I knew much more about it than Chris, so I showed him all around before the appointment. Tucker had an appointment with the pediatric surgeon who will be performing the muscle biopsy. The doctor wanted to meet Tucker to go over his case, and today was his only free day before May 21st. We showed up early for the appointment, just in case, then we waited over an hour to see the doctor. It was a very crowded room, and the little kids were kind of stir crazy! Some of the highlights included: Tucker rubbing some strange woman's leg before I could catch him (he LOVES legs), Tucker trying to turn the lights off 500 times, then screaming "light op!" when I blocked him, and Tucker and a little girl trying to dig old crackers out of the trash can with the whole room telling them "no!" Tucker spent about 20 minutes listening to Mickey on Chris's Iphone with headphones, but we could not pull out our secret weapon (the laptop with the Mickey DVD) because the kids would have swarmed all over it! So the actual appointment lasted only about 15 minutes. The resident explained the procedure to us. They will make a 1-2 inch incision, then cut out three pieces of muscle from Tuck's thigh muscle. They will put each piece on a slide, and two slides get sent for different tests, and the third slide gets saved for future testing. Mitochondrial disorder is a new field of study, and there may be new tests available later that don't exist now. So once they send the tissue out, their part is done, and we wait for 6-8 weeks for the results. The neurologists will also perform a lumbar puncture at this time to test Tuck's spinal fluid for many things as well. Tucker will be asleep for all of this, so he will not feel any pain. Once he wakes up he will have pain medicine, and we should go home the next day. Because of all of Tucker's past issues, and his possible mito diagnosis, the anesthesiologists want to meet Tucker before the surgery. So we will be up at the hospital a day early to meet with them. At Memorial Hermann, they use different anesthesia protocol for kids with mito to make them safer while asleep. So even though Tucker has been put to sleep many times, this will be a new experience for Tucker and us. For the last two trips to Houston, Mom and Gina have rode with us. We all had fun on the road trips, and they are a great help to me. This trip was also very nice, I enjoyed spending time with Tucker and Chris, and letting Chris spend a little time in my medical day-to-day world! After waiting for the doctor for an hour, Chris said he would rather my mom come with me next time, not him! We often joke about how Chris has the "easy" job since he spends 40 hours each week at work while I am at home and on-the-go with Tuck. I think after this trip he appreciates his job even more. One random story to end the post..... For those who don't know how Tucker got his name-When we found out I was pregnant, Chris said the baby would be a boy, and his name would be Tucker. I laughed, and I asked "what if it's a girl?" He said it was definitely a boy, but if it was a girl, I could pick the name. But I didn't get any say if it was a boy, his name would be Tucker. Once he was born, I made nametags and decorations with Tucker's name and put them all over his NICU room. He had tons of monogrammed blankets and keepsakes, letting the whole world know this kid was Tucker Ray! Tucker has had strangers in his life since day one, so we are always introducing him to people. So many people have told us what a great name "Tucker Townsend" is, how it sounds like a baseball name, or a famous name. When the resident walked in today, he said, "Tucker Townsend-that's a great name!" and he said it a few more times. Chris looked at me, as if to say, "Yes, I am amazing." So tomorrow Tucker is going back to school (which he loves!), and then we are all going to the eye doctor. This is never fun, so we will see how amazing we all feel by tomorrow evening!

More Tests! And a Busy Week

This morning Mrs. Mia and I took Tucker to Oschner in New Orleans for an endoscopy, which is a scope of his esophagus, tummy, and small intestine. The GI dr. said everything looks normal, but she will call me later this week with results from the biopsies of each part of his digestive tract. If she had seen inflammation or anything, that would have helped to explain his feeding issues, at least a little! So we will wait for the results, I almost fell out of the chair when she said she will call me this week. I said, "are you sure? that soon?? And we don't have to drive back out here to get the results?" That is nice, since it is quite a drive. We have done a lot of waiting this past year, and a lot of driving!

This is a pic of him, after he came out of anesthesia. He has been having problems with anesthesia lately, where he almost can not breathe without the ET tube. It is very scary for the docs (and us!), so I was very pleased that everything went well this time. The anesthesiologist woke him up very slowly, and made sure he was making breathing efforts before he extibated him. So that seemed to have worked. Then we waited for almost an hour for him to wake up, he is so peaceful when he sleeps! It's once he's up that is the problem, because they give him Versed, aka "goofy juice" so he is like a drunk kid once he wakes up! He tries to run and climb, but he literally can not coordinate any movement. He refuses to just sit still, though, because he thinks he can do whatever he wants! This makes for a few interesting, but frustrating, hours. Today was not so bad, though.

Chris was on-call last weekend, which meant we could make no plans, just in case he got called out to work. On Saturday we had some very special plans, though, so Gina and I took Tucker without Chris. Our cousin Claire had a "No Mo' Chemo" party Saturday evening, to celebrate her end of chemo treatment. Tucker can be crazy at parties, but we took him anyways to congratulate Claire. She looked great, and it was nice to see that side of the family. There was a pool and an inflatable water slide. Tucker was a little hesitant about the pool, but he loved the big water slide! After one ride, that was enough for me, though! I think all the moms watched us go down the slide, wondering how crazy was I? Tucker loves all of the sensory input from crazy rides like that, he is so small, but he is a dare-devil. So we came off the slide, with me about to cry, and Tucker clawing his way out of my arms to go back. I said "no!" and that was pretty much the end of our party time! We went inside and changed Tuck back into his dry clothes, then headed back home.

Tucker has always loved water, but it has been a "no no" for most of his life due to the trach. For those who don't remember, back in April of 2008 he took a nose dive in the bath tub (dare devil!!), and aspirated bath water into his trach, earning us one night in the ER and one night in the PICU. With the heat here in the summer, having a water ban is pretty cruel, so last year I let him play in sprinklers if the spray did not go above his tummy, and I let him sit in pools and the bathtub as long as the water was not above his g-button. He got his trach out in November, but his stoma (hole) did not actually close until February when the ENT closed it surgically. So this will be our first spring and summer where I can let Tucker really enjoy the water. So far, it has been great. Dad sprayed him and Sophie with the water hose last weekend,

and then Tucker tried the pool and water slide on Saturday. We want to have a "naked neck" party sometime this summer, and Chris has insisted that we rent a water slide. I thought Tucker was too little for that (wrong again!), but it looks like we will be having a party and a slide at some point.

The next few weeks will be crazy busy! Tucker sees several specialists every 6 months, and some of those appointments are due. We are also having an IEP meeting to plan for Tucker's 2010-2011 school year, as well as having meetings with his new teacher. Tucker takes all of this like a pro, though, it is me I am worried about!

Funny Stuff, and Speech Evaluation

Tucker has been doing so many funny things lately, I want to write them down so that I don't forget them! His new thing to do is wait in the front window for people to come in the house. If I know it's almost time for someone to come over, I'll tell him, then he waits very patiently by the window until they get there. When it's time for a visitor to leave, he practically shoves them out the door so that he can hurry over to the window to watch them leave. It is not always a good thing, the other day Gina told him "Go wait for Nana, she is coming," and he ran right to the window and stayed there, even though we knew Mom was at least 30 minutes away! Tucker also has very set gender roles, and I don't know where he got this! He is very observant of everything, and he is just recently showing us how much he pays attention. When the family gets together, whether its the Townsends, Lavignes, or whoever, he likes the women in the kitchen and the men in the living room! He will physically push the adults around or cry until they are all in their right spots. It is hilarious, but also makes me a little worried about where he got this idea! He has also liked to "match" couples for some time now. He gets very confused when a couple does not sit side by side, and he will often pull on your hand to put you next to the right person. Tucker likes many grown-up things, like wallets and keys. One of his favorite things is my purse, he won't go anywhere without it. He takes my stuff out and puts his stuff in, though, so I often end up places with a purse full of screws and potato head pieces, with no wallet! There were a few days last week where Tucker kept hiding my keys. His old hiding spot was his Mr. Strong bag, so we knew anything that we lost usually ended up there. Well last week I found my keys in his Easter basket (he still has it out because he loves it) and in his Mr. Potato head's back. My sister Meagan and her husband Chris moved into their new house yesterday, so we all went over to help. I told Tucker that we were going to see Nanny once Daddy got home. So once (my) Chris came in the door, he yelled at Chris "Nanny, go!" and didn't even want Chris to take a step inside. Tucker had so much fun "helping", by running up and down the UHaul ramp. Thank goodness one of Chris C.'s friends brought his little boy, he is 6 years old, and Tucker followed him around inside. Tucker loves big kids, so as long as Parrish stayed inside, so did Tucker. When the heavy lifting was done, Tucker made himself at home. He dug through Nanny's box and found a comfy robe and pillow, then demanded Mickey on her TV. Luckily we had a Mickey DVD (We never leave home without it:) ), so I put that in. I didn't think I would ever get him to leave! Speech Progress Tucker has so, so many words in his head, it is just often so hard to get him to say them! He says so many things for his teachers and therapists. Last week he said "umbrella" at school. Seriously, I can't even get him to say "Mommy" sometimes! His speech therapist has flash cards, and some of the words are hard, I think, but he can say so many of them. We often don't know all that he is learning at school, because they cover so many words. Tucker has lots of beach-themed clothes since he gets to play on the beach for the first time this summer-yay! So anyways, I put on his shark PJs for the first time tonight, I pointed to the shark and said "what's that?" I thought he might say "fish" or just not answer me, he looked down and said "tark," plain as day. (He is nowhere near having the "s" sound or "sh" sound, due to his lack of air control from having the trach). He has done this before, like once Chris handed him his Toddler Bible and asked "what is this?" We thought he would answer "book," but he said "Bi-buh", he is so cute! Tucker is also starting to say two-word phrases, such as "lite op" which is "light off" and "gee up" which is "get up". The other night Chris was reading a duck book to Tucker, and Chris said "where's mama duck?" Tucker pointed to it and said "na na duck." He also knows animal sounds! I just started asking him sometime last week, and he knows the horse says neigh, the duck says quack, and the monkey says ah ah. It is hilarious! So even with all of his speech progress, Tucker is way behind other 3-year-olds for obvious reasons. Tucker did not qualify for Extended School Year with the public school system, which is okay because we really want to put him at a private therapy preschool called Abilities. It is a great program for 3-5 year olds with special needs. This is a new center that Tucker has never attended, so he went in for his evaluation yesterday so that the teachers and therapists could learn about him. Filling out that paperwork is always overwhelming. When it asks "what are your concerns?" and "briefly describe your child's medical issues" I just laugh! I could write a book for questions like that. So the speech therapist got him to say quite a few things, and we talked a lot about his feeding issues. She said that with that evaluation, his speech mainly falls into the 18 month to 24 month range, and his functional abilities fall between 30 to 36 month old range. That is such a HUGE improvement from where we were last year. It puts him 1 to 2 years behind other kids, which is NEVER nice to hear, trust me! But it is still a very positive sign, and makes Chris and me very happy with our decisions to keep him in so many therapies and to continue his preschool this summer so that he can continue his progress. We spent so many years going to so many hours of therapy, and for so long it seemed like Tucker was not progressing. School has so much to do with his progress, and so does getting his trach out. We are hoping to keep medical issues to a minimum! That way he can focus on talking and learning more.

New GI Doc

Mom and I took Tucker to his new GI doctor last Thursday. Background Story: Tucker has had feeding issues since birth, of course, anyone who has met him knows that. However, he has never seemed to have any GI issues, such as problems digesting food or absorbing nutrients. Preemies are often at risk for all kinds of intestinal and digestive problems, so we felt very lucky. Tucker got a trach at 3 months old, along with a g-button to make sure he got nutrition, and a nissen fundoapplication to prevent any reflux or aspiration. The nissen was the most invasive surgery he had at that point, the surgeon wrapped his tummy up around the esophagus (kind 0f) because the risk of reflux was so bad and could be so harmful to his lungs. So for the last almost 4 years, Tucker has almost never spit up, vomited, or even burped! Kids can grow out of a nissen, but Tucker never seems to have done that. About 2 years ago Tucker gagged hard enough to spit up a little formula, and we totally freaked out. We took him to the surgeon, and they performed an XRay with barium liquid, which showed that his stomach emptied its contents very well, and that the nissen was still in place. Since then we have had no other issues. So the point of saying all this is....he has never really shown any discomfort from feeding. Some kids retch or try to vomit, even though they can't, when they eat too much, or eat certain foods. Tucker has taken everything and anything we give him, and since he never shows any outward signs of pain, we just assumed he is fine. Well, fast forward to last summer, he was 3 years old then. He was eating a little food by mouth, such as yogurt and applesauce, but hating every bit of it. We heard of this amazing doctor who could get any tube-fed kid to eat, so Mom and I took Tucker to see him. Well, he was hilarious, first of all! He joked throughout the whole appointment, and then said he had every hope that Tucker would be eating by mouth very soon. He looked through Tuck's chart and saw that he never had any GI issues, so he thought he would be an "easy" case. We put Tucker's feedings towards the evening, at 2pm, 6pm, and 10pm (with added calories) instead of the 4 feedings he has gotten since he came home from the NICU (8am, 12pm, 4pm, and 8pm). He also started him on Megace, which is an appetite stimulant. I fed Tucker by mouth several times each day, all summer! This may sound easy, but every single feeding is such a fight:( So anyways, he got much better, he wanted the food so much more. He started licking chips, especially! But he never seemed to actually swallow any food, no matter how hard he tried. I kept in contact with Dr Khoshoo the whole time through email, he was very easy to talk to and contact, and he told us to stick with the plan. Once Tucker got his trach out and we went back to 4 feedings a day (due to his need for nourishment in case of mitochondrial disorder) feeding progress backtracked. So we have been meaning to get back to Dr K, but we wanted a true mito answer first. So of course in March we found out that we will not get that answer for quite a while! As it turns out, tragically, Dr K died in a car accident in February. So we had to find a new GI doctor. We decided to go with one at Ochsner since Tucker has so many other docs there already. The Appointment: Tucker seemed to like his new GI doc, especially her legs (he loves legs, he is kind of embarassing at times)! She ordered an endoscopy, meaning that she will put a camera down his throat, look at his esophagus, stomach, and small intestine, along with taking biopsies of each part. She is looking for inflamed cells to indicate reflux and to make sure that his digestive system is absorbing all of the nutrients that we are giving him. Tucker's tummy has always been large and round, while his little bottom and legs are so skinny! She said that could be a sign that he is not absorbing all of his nutrients. I have asked other docs about this in the past, and they just said that was how he was built. He is very hard to buy clothes for! He currently wears about a 4T shirt, but he could fit into 12months shorts if they weren't so short on him! I started Tucker on a blended diet a few months ago. He has had only formula in his g-button since he got the g-button. Kids can live on formula forever, but we have always wanted to feed him "real" food. So a few months ago I found another MOD mom who started her daughter on a blended diet with great results, and I decided to try it. Tucker used to fall asleep after all 4 of his formula feedings, which made scheduling his day challenging! So since I started blending food for him to eat, he has gained about 3 pounds and he no longer fights me for his tube feedings. For those of you who don't know my family, we are all very short, small people! Tucker is still the smallest kid in his class, but to my family, lately he looks like some giant toddler:) A great change is that his food actually gives him energy instead of knocking him out. I can feed him and then go on to other activities instead of waiting for him to have a quick nap. The hard part for us is that we did not realize how hard it would be to get Tucker to bed at night, since his formula feeding obviously played such a big part into why he was so easy at bedtime! So many doctors do not like blended diets, and the new GI doctor was not super pleased about it. She said that most doctors agree that formula provides everything growing kids need, and she is in that camp. She thinks blending up Tuck's food is a lot of work for no real reason. Well, I agree, it is a TON of work! But at this point it seems to be helping him so much. She said she is fine with it, as long as we consult a dietician and go over every nutrient he is getting, which is fine with me. We also complained about Tucker's gassiness. Not the nicest topic, to be sure, but Oh my Goodness, this child is gassy! It is just something that we have always known, but I thought it was normal I guess. We attribute it to his nissen, and the fact that he can't burp, so it has to come out somewhere! His teachers have been really commenting about it lately, and saying how uncomfortable he seems. Now that we are thinking about it, we remember the NICU nurses commenting on how smelly Tucker was. They had to vent his g-button constantly, and even though they did that, he was very fussy and had gas pains all the time. So the doctor said we will look into that as well, but her first step is to have the endoscopy. So that is scheduled for next Monday (not tomorrow, but the next) so hopefully that will give us some answers.

Tonsil and Adenoid Surgery

Yesterday we went to Ochsner for Tucker's surgeries. He got his tonsils and adenoids removed, as well as a bronchoscopy to see his airway, and he had his left ear tube replaced. A few months ago, Tucker had bad sleep study results. The results showed that he had very bad sleep apnea, meaning that he is not getting good sleep at night. He actually kept his oxygen up at night, so the fear is not that his lungs aren't getting enough oxygen (just like Tuck). Kids with sleep apnea have attention problems, hyperactivity issues, and learning problems. Our brains need to cycle through certain sleep patterns to help our memories and to give the brain and other organs proper rest. Tucker spends too long in nonRem sleep, meaning that his brain is not resting enough, even though his other organs are getting enough rest. So the first step in treatment is to remove tonsils and adenoids, especially if they seem large. Tucker's tonsils have always been large, but the ENT did not want to remove them since the risk of putting Tucker under anesthesia and having a breathing tube down his throat could be worse than the risk of having large tonsils. The ENT changed her mind when she saw these results, so we scheduled the T&A procedure. The pulmonologist and ENT noticed that Tucker was breathing very loudly and he was "pulling" around his neck when he breathed, similar to a child's chest pulling when they have asthma or pneumonia. The ENT put Tucker on steroids and then said she would look down into his trachea to see if he had any scar tissue or problems that she could fix. She arranged for Tucker to stay overnight on the general Peds floor overnight for observation. Tucker was very excited yesterday morning to be going to the doctor! We told him we were going to see his ENT, and we think he has a crush on her:) He ran to the car, and smiled the whole way there. He was happy in the waiting room, and even in the exam room before surgery. I was a little worried, to be honest, because he was a little too excited for a surgery day! After they gave him his Versed to make him a little tired and woozy, they rolled his bed away from Chris and me, and out to the OR. He looked up and burst out crying. We told him we would be there when he woke up, but he kept crying and reaching for us. I felt bad, like he did not realize what was happening until that moment, even though we told him all about it. My mom and dad were in the waiting room, as well as Mrs. Mia, Jackie, Alexis, Sarah, and Brad. We waited for about an hour and a half, then they called Chris and me back to recovery. They said it would be at least an hour before anyone else could see him, and we sat and rocked him. He was pretty fussy, so Chris had to hold him and comfort him. He would have pushed me out of the chair! He is very strong, especially when he is mad. The surgery went well.....however...there was no scar tissue or any problems with Tucker's airway. That sounds like good news, but it means that there is no easy fix to his breathing problems. The doctor said the steroids he took last week seem to have really helped his stridor (airway irritation that led to breathing problems), although I had not really noticed an improvement. She prescribed two doses of IV steroids last night to help him as well. She said his airway is just skinnier than it should be, and floppier than it should be, but it is not in a place where she can operate. He just has to grow out of the tracheomalacia, which is what we have been told since he was 4 months old. Until he grows out of that, he may have to take steroids every time he gets a cold so that his airway does not get too inflamed. The best case scenario is that removing the tonsils and adenoids fixed the sleep apnea, and the floppy airway will cause no problems. We will let Tucker recover for a few weeks, then we see the pulmonologist May 10th. He will likely order another sleep study, but it could take months to get into the sleep lab. For those of you who don't know, Tucker HATES sleep studies, as does anyone who has ever been through one! So once those results come in, if Tucker still has sleep apnea, he may have to sleep with a CPAP mask at night. The absolute worst case scenario is that his floppy airway is causing the apnea, and that his breathing problems will keep him from growing and learning, making the ENT really consider putting his trach back in. She said that she does not want to do that at all! Tucker has really blossomed since he has gotten his trach out. He is still years behind other kids his age, but every day he is showing us how much he knows and has been waiting to share with us. Getting his trach out has helped so many areas of his development, and we of course want to continue that. So we have several months ahead of us to.....wait! That is what we do best, after all! Last night was pretty rough! Tucker has had several surgeries and bloodwork lately, but he has not spent the night in a hospital since November. He was not happy when we loaded up his stroller and ended up in a hospital room, not at the car! He cried in the playroom, he cried on his wagon ride down the hall, and he screamed everytime anyone in scrubs came into our room, even when they did not touch him! He pulled out his IV at some point, so last night they had to put in a second IV. Tucker usually charms his nurses, he is such a flirt! Yesterday he did not do that at all, he was such a crab, poor baby. Back in the NICU, Tucker was almost always a crab. By the time we roomed in with him, I had resigned myself to the fact that I had the fussiest baby on earth, and I loved him anyway! It was so nice when we took him home, and he pretty much changed over night. He was the happiest little baby at home. Of course he was on Valium and other "happy" drugs, but he was on those in the NICU as well, and they did not work. The first few times we went into the hospital for testing, my mean Tucker came back, but he would go back to normal at home. He hadn't shown us this personality in quite some time, though, and I had kind of forgotten about it. Today he was in a better mood, but he was still not himself, even on the car ride home. When we pulled into the driveway, he screamed "out out", and once he and Chris walked in the door, Chris said "yay" and Tucker repeated "yay!" It was so cute. Tucker has been in pain today, so we are giving his meds on schedule, but he is still much sweeter than last night!

Strawberry Patch

Tucker had his first field trip today. His teacher, teacher's aide, the five kids, and the parents all went to the Strawberry Patch today to pick strawberries. Tucker was so excited that he got to ride on the school bus! It was a 45 minute ride, and the teacher said that he sat and behaved well both ways.

The parents had to ride in their own cars, so Mom and I rode in my car. We got him off of the bus, and he was very impatient while the kids all followed him! First we went to the barn to pet the animals. Tucker saw a bigger boy climbing on the horse's pen, and within seconds he was climbing up on the pen also. I had to pull him down several times, then he dropped his toy screw in the horse's food, so I had to dig that out as well!

There was a large cow with flies all over it, all the moms thought it was gross! Of course Tucker went and laid on the cow, like it was a big stuffed animal, yuck. He then pretty much attacked a large sheep, which bucked and tried to run away, but it was tied to a post. The next animal got him back, though. He went to "pet" the rooster, and it bit his finger.

We moved on quickly, and Tucker went to pick strawberries.

He did not really enjoy this activity. Mom tried to get him to find red strawberries so we could actually eat them, but he picked a good amount of green strawberries as well. After he picked about 10 berries, he was ready to quit. We took him to the playgroud, where he rode on the swing and the merry go round. This was his favorite part, of course, so I spent over an hour pushing Tucker and various kids on the swings, as well as chasing Tucker around the playground. Needless to say, I am exhausted! I was very happy when Tucker's teacher announced it was time to load the bus! Tucker was happy, too, he climbed right back on.

We hope to get a good night's sleep to rest up from today. Then tomorrow morning we are leaving for Ochsner Hospital in New Orleans, Tucker is scheduled to get his adenoids and tonsils removed tomorrow. Along with that, the ENT is looking in his trachea to see what is causing his breathing difficulties. She is also unclogging his right ear tube, it keeps clogging and giving him trouble. We will stay on the Peds floor overnight, then hopefully come home on Friday. We plan on spending the weekend at home recovering from this active week.

Swallow Study

Tucker went for an outpatient Swallow Study yesterday. A swallow study can be performed for other reasons (I suppose) but Tucker has always gotten swallow studies to make sure that it is safe for him to swallow food and liquids without them aspirating into his lungs. As many of you know, Tucker's lung development was the Number One priority for most of his life, so aspirating was a Big Fear! He did not eat by mouth at all for months in the NICU, due to the fear that he was somehow aspirating food, which would get him sick and keep him from coming home. He had his first swallow study right before being discharged from the NICU at 8 1/2 months old, then he had another one at 15 months old. Both of these studies showed that he could swallow just fine, with no worry of aspiration. Of course, this does not mean that he actually DID swallow for us! We have been in a feeding battle with this child from day one, he has so many issues going on with the oral feeds. Since he got his trach out in November, his oral feeds have pretty much come to a halt. We heard from so many people that getting his trach out would make Tucker want to eat more, but in fact he has done the opposite. He can taste and smell the food better, and as much as he wants the food, he is just naturally very scared to let it in the back of his mouth and actually swallow it. Lately, his airway is irritated, so he is even more hesitant to swallow. He often gags and is very dramatic about not swallowing, even when Chris and I brush his teeth. So his Occupational and Speech therapists have really been wanting another swallow study, just to make sure he physically could swallow. When we went to the Mito Doc a few weeks ago, Tucker choked on some Cheetos crumbs, and Mom and I said "swallow Tucker, swallow," then he finally did. The doctor said that should NOT be happening, so we had to have a swallow study ASAP to make sure he was Okay. So I called the pediatrician, and they got us in at Our Lady of the Lake the next week. Gina and I took Tucker yesterday. He was holding his Fritos, which we told him he could have only AFTER he did his feeding work. He doesn't really eat them, he just licks each one of them until there is no salt left! Then he puts them in a neat little pile. People who know Tucker also know to NEVER take any food he offers you! He often licks all of the taste off, then tells you "open!" so that you will open your mouth and shove the nasty food in...pretty gross! So Tucker's OT Mrs. Terri met us at OLOL. He was so happy to see her. We went in and they explained what would happen. The procedure took place in an XRay room. They fed Tucker food with Barium in it, then they watch on the XRay to make sure the food goes down his esophagus and does not come back in his lungs. Tucker was very obedient, when Mrs. Terri told him to swallow, he really tried. The XRay tech kept saying "he is not swallowing, there is no food going down." If you looked closely, you could see that all the Barium was around his mouth, because he literally does not swallow. For months I had been feeding him applesauce and yogurt...he seems to eat, but 10-15 minutes into a feeding, the bowl is still full! It is very frustrating, and Tucker really does try hard. So anyways, the XRay tech was getting frustrated, so finally Mrs. Terri got Tucker to swallow some of the food. The Speech therapist in charge of the study said that Tucker is physically fine with swallowing, so we can resume regular feeding therapy. She was really concerned with Tucker's lack of oral motor coordination, especially because she knows we have had fantastic therapists working with him since his discharge over 3 years ago. She said that Tucker is just one of those kids you only meet once or twice during your career, who just makes you feel like you are racking your brain, using every technique you can throw at them, and nothing works.....then one day they will just click and start eating. I think that made the OT feel a very small bit better, but not much! So after Tucker's tonsil and adenoid removal this Thursday, along with his recovery, we will go back to serious feeding therapy. The speech therapist said that Tucker's entire world changed when his trach came out, and it makes perfect sense that his feeding would have stopped. He is also very aware of his irritated airway, she said he is a very smart kid who knows that something is going on that is affecting his breathing, and therefore his feeding. Tucker was very obedient during the whole procedure, and did what we all asked of him. Gina watched from behind a glass window so she wouldn't be exposed to the XRays (Mrs. Terri and I wore protective gowns), and she thought it was very odd to be looking at Tucker's skeleton:) She said he has a huge head, which is hilarious since he has been diagnosed with closed sutures and microcephaly (small head, even below the 3rd percentile for heads of other 3 year olds). As soon as we got in the car, I opened his Fritos as his prize, he was so happy!

Appointment in Houston with the Mito Doctor

Tucker went for a follow-up appointment with the Mitochondrial Specialist a few weeks ago. I know many of you are concerned and wondering how it went, and what it all means. Back in June 2009 a specialist suggested that we get genetic tests run on Tucker, by this point he had just turned 3 and it was obvious that his delays and medical problems were not due to prematurity alone. So after months of testing, we ruled out many things. The tests kept pointing to a mitochondrial disorder, but the geneticist was not sure if we should proceed with further invasive testing. Mitochondiral disorders are a relatively new field, they are hard to understand, and very hard to diagnose. The dr. started Tucker on 3 supplements, CoQ10, Creatine, and Calcium. This is the first step in treating mito. There are only a few mitochondrial specialists in the country, one of them being in Houston at Memorial Hermann hospital. A friend of mine (I met her through the March of Dimes) has a son about Tucker's age with mito, and she suggested that Tucker see the specialist in Houston. She said that if Tucker did not really have mito, that would be great to know, and if he did have it, this doctor is the best doctor to help us to manage it. Kids with mito have very specific protocols for being put under anesthesia (which we don't follow right now) and how they get nutrition (which we also don't follow right now), so a diagnosis could potentially change many things. So i made the appointment then waited...In January Mom, Gina, and I took Tucker to Houston. I compiled Tucker's whole life story (which is fairly long for a 3 year old!) and sent every medical record he had to Dr K. After a consultation, she said she thought Tucker was far too healthy to have mito, and perhaps more genetic testing would help. Tucker got blood testing and urine testing that day, but we left Houston feeling okay. We still did not have an answer, but we felt confident. This dr deals with mito every day, so if she said he didn't have it, we felt good about her opinion. So we made a follow up appointment for March. Again, Mom, Gina, and I took Tucker. This time we stayed with my friend Missy and her precious kids in Houston the night before the appointment. Samuel has mito and has to be monitored very closely. We knew there was a chance he could be in the hospital, so we were so glad to hang out with their family. We went to the appointment and updated the doctor on Tucker's new problems. (His airway has been very irritated, he is going in on April 8th to get his tonsils and adenoids removed, as well as getting his airway strengthened, depending on how bad it is. He has very bad sleep apnea and has been having trouble breathing.) The doctor told us the majority of Tucker's tests came back normal, but his Pyruvate level was double the normal rate, which is very suspicious of mitochondrial disorder. She seemed surprised, and she asked if we wanted to continue further testing. We do, because the tests will help to learn as much as possible about what type of mito disorder, as well as the extent, and the possibility of this appearing in future children. The next step is a muscle biopsy as well as a lumbar puncture (spinal tap), which will both be performed while Tucker is under anesthesia. These will hopefully take place in June, then we will get the results in August. So at least two more trips to Houston are in our near future, with lots more waiting. We did not expect this answer at all, the more I learn about mito, the more confused I get. It can take on so many forms, so there are some things that are just so "Tucker" about it, and some things that are not. We have wanted an answer for a long time, but we don't want this answer. We know that Dr K must really suspect mito, because she does not take this invasive testing lightly. You can read about mitochondrial disorder here: http://my.clevelandclinic.org/disorders/Mitochondrial_Disease/hic_Mitochondrial_Disease.aspx Basically, if you remember the model of cells in biology class, the mitochondria are the "powerhouse" of the cell. They do the work. When there is a problem with the mitochondria, the whole cell and organ can shut down. The mitochondria of any type of cell can be affected, so it can lead to problems with neurological cells, muscle cells, etc. Each patient is affected differently, so two cases of mitochondrial disorder are rarely the same. Thanks, Leigh WELCOME TO HOLLAND by Emily Perl Kingsley I am often asked to describe the experience of raising a child with a disability- to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this... When you're going to have a baby, it's like planning a fabulous vacation trip -to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."" Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy." But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place. So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around... and you begin to notice that Holland has windmills... and Holland has tulips. Holland even has Rembrandts. But everyone you know is busy coming and going from Italy...and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss. But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ...about Holland.