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!