Good and Bad Changes

Tucker is a creature of habit, but this week has brought several changes, both good and bad. We went to the endocrinologist on Wednesday, and we got the results I had expected. Tucker's blood sugar is normal almost all of the time, and the doctor suspects that the few times it is too high were due to his mitochondrial disorder. He said he is not ready to change his diet or give him meds since his sugar is only high about once a week. I also told him that the few times it was high, each day had been a particularly long day for Tucker, so we weren't going to push him that hard anymore. The doctor said we could go from checking his sugar 3 times each day down to 4 times each week (yay!!!!), and if I notice any upward trends to call him ASAP and we would make a new plan. As for now, we made a follow-up for late December and we are keeping things the same. At that appointment he will check his A1C again and re-assess. So that was as close to good news as we've gotten in a long time! He said Tucker definitely has the potential to get Type 2 Diabetes, but he's not there now. Another change is that a new kid joined his class. Tucker has been SUPER tired when he gets home from school. On Monday he has OT, well he got off the bus at 330 pretty much crying "night night". I told him we had to go to therapy to see Mrs. Terri; usually he lights up and says "Te-ee, Te-ee" but this time he pretty much screamed bloody murder the whole way there. I had to carry him from the car to the building, then when Mrs. Terri wasn't in the waiting room Tucker flipped out. I told him he had to wait just a few minutes; he tried to play with the blocks, but some other kid wouldn't let him have any:/ I suggested to the kid that he share....he refused, and his mother didn't help me out at all.....so Tucker went all out crazy right there in the waiting room, and I decided we were quitting therapy....I'm kidding! sort of;) Once Mrs. Terri had him in the back room he was all smiles, but he was still exhausted. He again cried the whole way home, took a quick bath, then crashed in his bed. On Tuesday and Wednesday I took him off of the bus at 330 and pretty much rocked him in the recliner until 530 when Chris got home. Then Tucker had a few hours of playtime before he took his bath and went to bed around 9. Yesterday (Thursday) I met with Mrs. Amy, Tucker's teacher, and the first thing she said was that they got a new student. Well, that alone explained a lot! Tucker doesn't like change, and so this new student put a dent in his little routine. Mrs. Amy then explained that this child is too loud for Tucker....my goodness, Tucker and his preferences, lol. She said by Thursday Tucker was really getting used to the new kid and being much nicer, except at naptime. This little boy doesn't rest, and I guess he is kind of loud....so the other 4 kids in the class go to sleep regardless....but not Tucker. While the teacher and aides try to help the other little boy go to sleep and get used to his new classroom routine, Tucker shouts at him: "shhhh, night night!" The little boy continues to not sleep, so Tucker continues to boss at him....So Tucker gets no rest. The teachers have tried several techniques, but today they tried putting headphones on Tucker. His note today said "did not rest" so I am assuming they did not work....I am hoping the other little boy gets used to the classroom soon! Mrs. Amy totally understands how important it is for Tucker to rest, so they are really working on that for me. It is so funny, Tucker sleeps in the reading corner all by himself! He doesn't even lay on his mat; he sits on the beanbag chairs. On Monday the other kids joined the class, so I am sure that was rough on him as well. As of last week, Mrs. Amy said he is adjusting well to the classroom, and he is even sitting at lunch and licking all of his food:) For the first time today, he even got an "excellent" behavior rating! I may have to email the teacher and double-check on that one:) Another change-For the first time in Tucker's life, he is having trouble pooping...yes that is gross to talk about, but the poor kid is having a very rough time going! :( It hurts to watch him really, so I am going to switch one of his cans of Pediasure at school for the kind with fiber. He is usually on a blended diet at home and then gets 2 cans of pediasure at school; maybe his belly doesn't like the introduction of Pediasure, or maybe his belly has just been tired this week. At least we got an explanation for his lethargy Thursday night. On Thursday night after Tucker's bath I was rocking him (again!), it was about 630 and he was in A MOOD. Chris worked late, so I just decided to rock Tucker as long as it took to calm him down. By 7pm he was asleep. As I was rocking him, I noticed the nastiest smell! It smelled like really nasty feet, but it was coming from Tucker's ears:/ I went to the bathroom, and checked his custom-made ear plugs (he has custom-made ear plugs to block out water from his ear tubes when he bathes). They smelled exactly the same. So I assumed some water had gotten stuck in his ear and made the smell. Well about 30 minutes later the ear plugs smelled fine, and so did Tucker's right ear. His left ear, though, was still pretty gross! I called my mom, she told me to call Tucker's pediatrician in the morning since he had no fever. So the next morning I called, and the dr called in some ear drops. After a weekend of drops and Ibuprofen, as well as lots and lots of rocking chair time, Tucker is back to his "old" self. I asked my mom today "Where is my lazy Tucker when I need him?" lol, I was very worried about him last week, but man, he can wear me out during the few hours he is home at night! Tucker went to the eye doctor today (the last of his dr appointments for a few months hopefully!!), and there are really no changes with his eyes. She dilated his eyes and checked for pressure in his skull (his skull sutures fused too early, so if his brain is trying to grow, the skull won't let it, which could lead to increased pressure). No pressure! So that's good and bad news....good because there's no pressure in there, bad because his brain is not even trying to grow....sad, really, since his brain pretty much hasn't grown in two years, getting closer to three. We have the annual follow-up with the neurosurgeon over Thanksgiving break, I have a feeling he will just check him out and leave him status quo since his brain is not growing. The eye dr is one of the specialists that has followed Tucker from the NICU on out, so she always likes to get the health updates on him. When I told her he was diagnosed with mitochondrial disorder, and the mito doc suspects it has nothing to do with the prematurity, just two totally different problems, she asked, "wow, you guys ever think of playing the lotto?" I smiled and said "maybe in that case the odds would work in our favor!" Tucker's friend Wes is in for some big changes as well, he is going to join Tucker's class sometime this week, and he became a big brother today! Lauren and Kirby had their baby girl today, it was an exciting day. I had to leave before Kate was born to run home and get Tucker for his appointment, but Chris and I plan to go up to the hospital tomorrow. I won the baby pool, I guessed that it woudl be a girl, and that she would weigh 7 pounds, 3 ounces, which she did. I am still not sure exactly what I won! :) Tucker saw Kate's picture on my phone and said "baby" and tried to kiss her:) We found out last week that Chris's sister is having a girl in February, so Tucker will add another girl cousin to his long list! Maybe my sisters will have boys one day to help him even it out:) Or maybe Tucker just won't notice that his little cousin is a girl; he has a strict "no girls allowed" policy for his clubhouses and tents....seriously, I don't know where he gets this stuff!! I just re-read this post and realized it's all over the place and rambling, I need to post more often, then maybe I wouldn't try to sum up a whole week in a very short post. I will have to work on that.

Tucker the Hurricane

Tucker has been busy over the weekend, and so have his parents!

Last Wednesday a plumber came out and fixed our pipes, so we now have water pressure! I can not overemphasize what a big difference this has made in my life:) We have a little old house, and we have just "gotten used to" a lot of the problems it has....which is not a good idea! When we moved in we totally redid the place, and got many professionals to come in and fix things. Chris is so laidback, which makes him a perfect for my neurotic anxious self, but sometimes the overanxious and proactive personality is needed! So with this water pressure thing, it has been slowly getting worse over the last few months, and of course I see it the most since I do the clothes and dishes. I finally reached my breaking point and demanded that we call in a professional! We had a fear that it would cost thousands of dollars to fix; it was actually quite affordable and only took a day to fix:) So on Friday the guys came over to finish up, I had a mini-celebration which I know seems funny, my brother Dylan told me "welcome to the 21st century!"

Friday night we took Tucker to do a little shopping. We are really getting used to the idea that Tucker is exhausted all the time. I have consulted the Mito/Metabolic parent board and realized that I am not crazy, lol. Tucker is showing us, in his own way, when he has reached his limit. Many mito kids have the ability to voice "Mom I'm too tired" or "I need a break", Tucker is not able to do that. He goes into the opposite mode-hyper energetic tornado mode! So at that point, it is our signal that he needs a break. He has been like this for years, but I always chalked it up to toddler tantrums, when really I think it has always been a cry for help...so anyways.

Friday night we had some errands to run since all day we had waited at home on the work to get done on our house. Tucker was fine at the first few stores (we looked for him some new school shoes-no luck, but we did find him a few pairs of school pants-yay!).

Then we went to Whole Foods to look for his supplements. Dr K has put him on 4 supplements: CoQ10, Levo-Carnitine, Folate, and B12. The B12 and Levo-Carnitine are prescriptions, but we are going to buy the other 2 over the counter. I have to find them in liquid to go in his g-button, and I have always bought his CoQ10 at Whole Foods along with his multi vitamin Pediavites. I personally LOVE Whole Foods, although almost everything in there is so expensive! The selection of food is incredible, especially the already prepared foods. Tucker started crying when we walked in, I guess he thought we were going home? I grabbed the CoQ10 then tried to show Chris around, we made it to the Bakery section before Tucker was throwing an all-out fit. We picked up a Double Chocolate Bread Pudding...yes I am serious! Of all of the healthy things at Whole Foods, I walked out of there with 4 bottles of CoQ10 (a 1 month supply), 1 bottle of Pediavites, and 1 double chocolate bread pudding:) Chris had to take Tucker out of the store, he was crying "home" and "night night" it broke my heart! When I had paid and got out to the car, Tucker still had tears coming down his face. He continued to request "home" so I told him we had to drive home, so enjoy the car ride. That didn't work, so I said the magic words: "Rap song." Again, Yes I am serious:)

Tucker is IN LOVE with the song "Turn it Up" by Chamillionare. I am not even kidding. It's an older song, it reminds me of high school or college, I think...I am usually very good at dating a song almost down to the month it came out. Anyways, Chris had that song on a CD, and Tucker "dances" and grins like crazy when he would play it. So the other day at my parents' house I pulled up the song on YouTube and Tucker went nuts! It was so cute, he dances as stiff as a board, he has absolutely no dance moves! I need to video it, but the lyrics are really not the best to post....you are welcome to look it up on your own, I am embarassed to post the link to the song! So Chamillionare also sings "Ridin Dirty" which Tucker loves, so at least we added a little variery.

So this has gotten so bad that Tucker cries for "rap song" when we get in the car, even though I explain that Daddy has that CD, not Mommy. Well, in true Leigh fashion, I bought and downloaded "Turn it Up" onto my IPhone....anything for the kid, right? It was the first song I ever put on my IPhone, and I've had the phone for 5 months! So now he knows that it's on my phone, he requests "rap song" and holds it up to his ear, it's hilarious. So anytime he is past the point of tantrum, saying "rap song" shuts him right up, and he holds his hand out for the phone...yes I realize we are creating a monster, whatever works right? So the poor kid listened to his two rap songs all the way home, (we downloaded Ridin Dirty to Chris's IPhone so we each have a song now in case of emergency).

Then as soon as we got home, he put on his PJs and fell asleep in his bed.....no fuss.....no fight.....so NOT my Tucker. I tested his blood sugar once he was asleep...it was 208, way too high:( It was the highest reading he has had in days, which leads me to my next point: Tucker's blood sugar has been much better! It is still not in normal ranges, but it is definitely manageable. This points to the theory that Tucker's blood sugar is going to go wacko when his body is too tired to regulate it, not really because of what he eats. So maybe he had those super high readings when we were in Texas because he was tired from the trip, and then he had super high readings the first few days of school, but then he got settled into his new routine and the blood sugars leveled out. So last Friday we pushed him too hard and his sugars were way too high. Tucker sees the pediatric Endocrinologist for the first time Wednesday, so we will see what he says about everything. I am still thinking we will get a Type 2 diabetes diagnosis, whether or not that is exactly what's going on.

Saturday was great! Chris and my good friends Lacy and Steve are getting married in October, and Saturday was their big couples wedding shower. Saturday morning I went over to Lacy's parents to set up, they had a luau theme and went all out with the decorations and food, it was fantastic! They even had a tiki bar, as you can see from the picture above:) After setting up I went to WalMart to get ingredients and last minute wrapping stuff, then headed home to cook the potato salad. At the same time, Chris headed over to his friend Steven's to cook the big jambalaya for the party. So I had Tucker at home while I needed to cook and get ready...doesn't sound too hard, right? That's what I thought;) Not so easy! At one point Sarah called, she and Brad were bored and wanted to drop by, I said Please do!! So they did, and Brad rocked Tucker, Sarah cut and boiled potatoes, and I wrapped gifts. Domestic goddess, I am not..... Thank goodness for help:)

Mom and Gina picked Tucker up around 5, then Chris came home with the jambalaya in his truck and we headed over to the party. Saturday night was a blast, it was a great night with great friends. Just the distraction we needed!

On Sunday Chris and I attended the Ascension Parish Inclusive League (APIL) TBall meeting. This is a local league for kids with and without disabilities, from age 4-14. I was nervous about it, and I was especially nervous for Chris. Chris is very athletic (unlike me!) and played baseball pretty well back in highschool, he also taught his younger brother all about baseball. So I of course always looked forward to Chris teaching Tucker how to play sports; but Tucker lacks the attention span and coordination to do pretty much anything athletic! I like to put Tucker in many activities because he likes them and benefits from them, not necessarily because he will be very good at the activity. There will be 4 games, 1 each week in September, so I thought it would be a good way to see how he likes it to help us decide whether to sign him up for the longer spring season. The meeting went well, Chris seemed happy about it. There will be 2 teams, the kids aren't divided up by age. Depending on their ability, they will hit off of a tee or be pitched to; they will also have shadows if they need one so that the parents can just sit in the stands and cheer! Tucker is on the blue team, which is named the Hurricanes. The green team is called the Tornados, which is what we often compare Tucker to:) The kids get uniforms, and Chris and I ordered adult size shirts to wear to the games. They encouraged us to bring out as many guests as we'd like....I hope the park can hold all of the Lavigne/Galatas/Townsend crowds:) After the meeting we went up to Betsy (she is in charge of the league) and explained that Tucker has no sports experience and that he will definitely need a shadow as well as lots of patience! We are just hoping that he enjoys being with other kids and maybe behaves himself. We will see. I think I may cry on the first day, I was almost crying at the meeting. I feel very grateful that there is a league like this so my sweet boy can have a chance to play sports; hopefully he enjoys himself and doesn't scream "home" the whole time:)

Sleep Study Results

Two songs played through my head this afternoon: "I'm still alive but I'm barely breathing" and "I'm not a princess, this ain't a fairytale." Because I feel like this and so much more sadness after today's pulmonology visit. Tucker had a sleep study last weekend, he seemed to sleep very peacefully, but I knew it would not be good. Tucker's lungs have always been his big issue, and it took him a long time to get off of the vent at night. He got off of the vent in March 2009 and got his trach out in November 2009. We had his Naked Neck party in July. So today the dr said Tucker's sleep is very bad, he does not get restorative sleep, meaning his brain is not resting. This can really explain his neurological symptoms; he has always had these sleeping problems, but the hope was that getting his tonsils and adenoids removed would help. With his mito diagnosis, we knew that proper sleep and rest are SUPER important, life-saving in fact, so we know that he needs to get good sleep. I went into this appointment knowing that we would probably leave with a BiPap machine. Most people with sleep apnea get a CPAP machine, but people with mito do not have enough energy for the CPAP machine. They do better with BiPap, which Tucker was actually on through his vent for over a year. The doctor said "surprise, surprise" Tucker is too complicated for just a BiPap machine. He very likely wouldn't keep it on, which would make it ineffective; plus his oxygen levels are good at night, so he doesn't need just extra oxygen. The dr said there are 3 solutions that he knows of, but he is going to discuss these with the ENT and Dr K in Houston. These are: take out more adenoids (apparently there are more than just the ones already taken out, but they usually are not the answer and therefore are not taken out easily), put him on BiPap, or .....catch your breath....put his trach back in. Dr. T actually said that if he knew about the Mito diagnosis in November, he wouldn't have recommended we take it out.... He said for years Tucker's issue has been his airway, not his lungs....and with the Mito and the low muscle tone, his airway either won't get better, or could even get worse. I told the dr that Chris and I would MAKE Tucker keep the BiPap mask on if that meant keeping his trach out. We want to do EVERYTHING we can to help him rest, but we really don't want to even consider putting the trach back in. As in...if it really happens they may have to lock me up with security so I don't try to stop the drs....and someone else will have to take over the training and trach changing and dealing with nurses and doctors and telling my son he can't swim....because I've had my turn....just saying. There were two "good" parts to the appointment. I was scared that Dr T wouldn't understand Mito and maybe question the diagnosis. It turns out that he does research in the area of neuromuscular biology and how proper sleep affects performce in sports....meaning he understands a lot about mitochondria and energy in the muscle. He also knows enough to realize that he needs to consult Dr K....Dr K said the doctors who call her before acting are the best kind of doctors. So I am glad about that, I would hate to have to switch all of our specialists to Houston, although I have heard Mitoville is very popular (just kidding!). The other good part, finally an explanation for his staring spells. Tucker has episodes, many many per day, where he stares off in space, and no matter WHAT you do, he does not come out of them. We have tested for seizures, but that was negative. With the autism, the neurologist said it could be avoidance behavior, meaning that Tucker stares off to avoid things he doesn't want to do. Which honestly, I could definitely see that as a possibility! But anyways, I had been wondering lately if the staring episodes were a way for his body to try to rest, like he wasn't getting enough rest at night. I learned in psychology class (years ago) about the effects of sleep deprivation on the brain, and how after two days without sleep, the body tries to save itself by letting you "microsleep" while still awake. Dr T said that must be exactly what's going on. The bad part....Tucker has had these episodes for years, even when he was on the vent, so I don't know how much would have to be done to fix it. So Chris and I are crushed, no other way to say it. So are our parents, we have been through a lot, and getting his trach out was a huge burden lifted for us and Tucker. He is talking so much lately, of course only to boss us around! He also loves the water, as in LOVES, like a fish, and I am going to do everything in my power as a mommy to get Tucker some good sleep and keep the trach out.

Letting Go...

These past few days have been very hard for me. I had been looking forward to Tucker's new school year for a long time! I know that being at school all day is what he needs for his development and therapy. He really needs a teacher in charge of him who makes him follow set rules and a routine, unlike being at home with me! And I have been looking forward to a break! I mean, really looking forward to it, this summer was a killer for us....20 minute rides to and from preschool 5 days a week, Gymnastics therapy over an hour away, two OT sessions each week, swimming therapy about 30 minutes away, and two speech therapy sessions...by they end Tucker and I had both had enough, and my poor car probably never sat in the driveway! But at least I was with Tucker for most of his sessions, so I knew what he was doing and learning. Tucker's new teacher writes notes about his day, but now there are 8 hours unaccounted for, which is a bigger deal than I thought. It really makes his lack of conversation VERY noticeable...he can't even answer "yes" when i ask him if he had a nap or if he liked the bus ride? I can't ask him "what's your favorite thing about school?" or "tell me the name of your friends"....the stuff moms live for, right? All of the moms who sent their little ones off to kindergarten last week were very heartbroken I'm sure (and I'm not minimizing those feelings), but at the end of the day they got to hear all about it from little ones bursting with stories....me, not so much. Of course, what did I expect? Nothing really, but I did not expect it to hurt this badly. My poor sister (I know, which one?? Sarah) called me yesterday, and cheerfully asked, "How was Tucker's day?" I snapped at her, "I don't have a clue! He can't talk, did you forget that!??" I apologized to her, and she encouraged me to email the teacher, which I did....I just didn't realize how much those questions would bother me.... Parents are so proud to hear their kids' stories, I am 26 and I still crack my mom up with my crazy stories....I love listening to the craziness that comes out of my cousins' mouths, they think the funniest stuff are the most important things in the world, and I love to hear all about it! So this year I will not be just letting go of my son (yet again) but I will be letting go of so many dreams....dreams that I thought I had grieved and gotten over....obviously not. Tucker also rides the "short" bus, which could be its own conversation I know. Tucker LOVES any kind of transportation, and last year they spent time on the bus outside (it was parked) to get used to it, and Tucker was so well-behaved. He rode a bus last year for his field trip, and he sat still the whole time and loved it. The bus ride from our house to the school is really less than 5 minutes, there is a driver and an aide, seatbelts, and less than 5 kids....really there is no reason for him to NOT ride it. Did I mention he loves it? lol, he runs to it every morning and doesn't even hug me good-bye! That all being said, it really hurts my heart....I know how other kids make fun of the "short bus" and yes I really do care how my son is treated at school. I know that this should not be an issue throughout primary school (hopefully!), but kids can be really mean to kids that are different, and I am not looking forward to that. I think I have always viewed "letting go" of Tucker in a completely different light than other moms. Letting go in Holland must not be the same as it is in Italy....my child was rushed away from me at birth, I did not see him again for 48 hours, did not hold him for 7 weeks, and did not take him home for 8 1/2 months. From that point we had home nursing for almost 3 years, and he had so many therapy appointments and medical procedures that I had to let him attend without me. This was all done with the hope that he would one day be "better." I have been letting go of many dreams this summer and I think I will only have more of this. The idea that MY child would not learn to read and write and just love books(because honestly I'm about the biggest bookworm/nerd ever!) or say "I love you, Mommy" and actually mean it are dreams that will be especially hard to give up and grieve. I have been looking at the bright side and for the silver lining in the clouds for 4 years....I have become very good at it, and honestly it's exhausting. I have been letting go of that need to constantly make everyone else feel better about my son's condition(s), it has made for some pretty sad conversations, and also a feeling of a huge burden being lifted. But it has also opened the floodgates for so much sadness, which is what I'm muddling through right now. I'll end with some lyrics from a song that has gotten me through some tough times, and continues to mean more to me as time goes on: "I was sure by now, God you would have reached down, and wiped our tears away, rushed in and saved the day. But once again, I say 'Amen' and it's still raining" "I remember when, I stumbled in the wind, You heard my cries, You raised me up again, But my strength is almost gone, how can I carry on, when I can't find You?" "As the thunder rolls, I barely hear you whisper through the rain, 'I'm with you' And as your mercy falls, I raise my hand and praise the God who gives, and takes away." "I will praise You in this storm, and I will lift my hands, for You are who You are, no matter where I am. Every tear I've cried, You hold in your hand, You never left my side, and though my heart is torn, I will praise You in this storm." Casting Crowns, Praise You in this Storm

Tucker Ray at OneTrueMedia.com

I am posting Tucker's Naked Neck Video. I put this together for his Naked Neck Party in July, it has pictures of him from May 2006 to May 2010, complete with music so make sure you pause my Music Playlist so you just hear the music for the Video.

Photo and video editing at www.OneTrueMedia.com

Blood Sugar Issues

Tucker's first day of school went well. Yesterday I picked him up early for an appointment with the Diabetes Educator; the teacher came up to me and told me how well Tucker was doing that day:) He was already used to the routine and he is getting used to the rules. That is great, he is such a big boy! Sometimes I think he changes personalities on the school bus, haha, he turns into Tucker Ray, Model Student, on the way there. Kind of like the transformation that occurs when he stays at his grandparents, he is always "good as gold" and "such a sweetheart" with them! Tucker had high blood sugar three weeks ago in Houston, then last week in BR he had a regular reading. So we were all hoping the one in Houston was a fluke. Yesterday the nurse gave us a meter (we picked a purple one-that's Tucker favorite color....meaning the only one he knows!) with some strips and the whole get-up and taught me how to use it. It is not a hard concept, and she gave us a new model with a very small needle so the stick doesn't even hurt Tucker. The problem is that the needle is so small and delicate that barely any blood comes out:/ We have to "pump" his finger for the blood, and Chris is much better than me at this. Maybe because I am too scared to squeeze his finger as hard as it needs to be squeezed?? Yesterday afternoon his blood sugar was 205, (way too high), then last night before his last feeding it was 83 (perfectly fine), but an hour after his last feeding it was 348 and then 298 (we took it twice because we thought we messed up with that high of a number!). This morning it was 88 before breakfast and then 247 right before he got on the bus (which was also an hour after his first feed). The original plan was to monitor his blood sugar 3 times a day for 4 weeks and then report back. Well the Diabetes nurse called me last night; she said because his sugar was 205 yesterday, the dr wanted us to just monitor it for one day and then they would take immediate action. Thank goodness, because that 348 last night really freaked me out. I called the pedi nurse at 8am, I listed off all of the numbers, and she is supposed to call me today. They will likely change his formula to a diabetic formula. I actually blend up his food once a week and feed it to him in his g-button at home (he gets fruits, veggies, soy milk, grains, fats, and meats), and he has really put on weight since we started this (in a good way!). He gets Pediasure twice a day at school, the blended food has to be refrigerated and it's thick, so we thought Pediasure would just be easier at school. But I guess now he will have to just do the diabetes formula?? We will see. Ugh, this is so overwhelming right now. I know in the grand scheme of things pricking your kid's finger is NOT a big deal, we've been through much worse! But today I had to prick him about 8 times, and use 8 meter strips (which are supposedly ridiculously expensive) to get a reading. Tucker is going to start hating that little purple meter! And of course with sugar readings that high, this is definitely an issue we should be monitoring and acting on. Unregulated sugars can cause horrible damage to the body's cells, and obviously Tucker needs his cells as healthy as possible. ----------------------------------------------------------------------------------------------- In other news, Tucker has been hilarious lately! He uses his words so appropriately, and really surprises us! He is starting to use 4-word and sometimes even 5-word sentences, which if you know him, means that he can boss all of us around even better than before! For example, he used to just scream "tent! tent!", well now he says "get in the tent." He loves opening and closing things, for the longest time "open" was the only sign he knew. Well now he says "open box peez" (please) or "put it in poos" (meaning put something in my purse). Sometime last week I had a particularly hard day and I laid down with him that night to cuddle before bed. I hugged him and he looked at me, pushed me and said "get out my bed." I was surprised and kind of proud of him, and of course I obeyed. The other day he called my brother "Unca Dylan" instead of just Dylan, it was so cute. I made a Naked Neck Video for Tucker's Naked Neck party a few weeks ago, it is about 7 minutes long, and it's pretty good if I do say so myself! So I ordered DVDs of it for us, my parents, and Chris's parents. Well this video has replaced Mickey and Barney as Must See TV in our house, at least once a day Tucker climbs on my lap and demands "baby moobie." I ask him who is the baby? He tells me "tucker" even though I don't think he really understands that's him. Tucker also still LOVES my blue purse. He sleeps with it most nights instead of a stuffed animal. On our last trip to Houston, we stayed in a hotel (according to Chris, a seedy hotel, I am NOT allowed to book our trips anymore) and Tucker had a hard time falling asleep. We were exhausted, so after about 30 minutes of fighting I said "you've got your pillow, you've got your purse, now GO TO SLEEP!" Chris asked me "are you serious? did you really just say that?" And the worst right now....well for me at least....Tucker just loves when Chris plays his PS3 video games:/ Chris walks in from work, and Tucker brings him the controller and says "game". Of course Chris has to take a shower and eat first, but Tucker does not like that arrangement! Chris keeps the games out of Tucker's reach, but Tucker points up to them and says "open game." As I often say about hunting, and now with the PS3, I am so outnumbered in this house!! I don't think Tucker's vote should actually "count" yet, he is just a little kid, but Chris insists that it does. The bad side to this (for Chris) is that Tucker has now realized that when he presses the eject button, the PS3 game comes out and Daddy has to stop playing. So he now controls when Chris starts playing, and when his gaming time is up! Oh, what are we creating here?? A spoiled little monster! No wonder why he behaves so much better at school:)

The Cutest Monkey in the Jungle

Today was Tucker's first day of preschool. The anticipation was much worse than the actual first day, thank goodness! Chris went into work late so that he could watch Tucker get on the bus. Altogether there were 7 people waiting with him: me, Chris, Mom, Sarah, Mrs. Mia, Mr. Ricky, and Maw Maw Mimi! A neighbor passed by while walking his dog, and he asked us if we were all going to ride the bus to school:) Tucker climbed on the bus and didn't even look back! All the women had tears in their eyes, but not Tucker. The bus driver later told me that he whimpered when the bus pulled into the school...well of course he did, he probably wanted a longer ride. Mrs. Amy (his teacher) said that he walked into the lobby, which was swarming with kids and parents, and he cried a little then as well. Once he got into this classroom he was fine, though. There are 4 kids in the class right now, these are the kids with special needs. After a few weeks about 6 typical kids will join the class, which makes this an integrated classroom. I had to go to school at 10am and I will go back at 2pm to feed Tucker. The nurses and teachers can't feed him until Dr B's nurse faxes over orders for it, so I am going to feed him today. At 10am he was sitting at snacktime, he ran over and hugged me, but then went back for his snack. Mrs. Amy said he is listening to what they say, but he is having a hard time staying away from their purses and Mrs. Amy's desk! I told them yesterday on our visit that Tucker will just have to learn that classroom rules are different from the rules at his grandparents' houses! Mr. Tucker is used to everything going his way, so school will teach him otherwise. Mrs. Amy told me yesterday that it's hard for every mom to bring their kid to school and leave them with the teacher. She said someone told her when her son was born: "every mommy monkey in the jungle thinks her baby monkey is the cutest one in the jungle. It's very hard when you send them to school or daycare and realize that every other mommy feels that way, too, and they are in the hands of other people." I thought to myself, "well that makes sense, but MY baby really IS the cutest monkey in the jungle!" :) I just like them all to know that Tucker has a lot of love at home, and we will be there to support the school as well as hold them accountable for meeting his needs. God bless his teacher, and all of the teachers who have to deal with parents like me! Most of my friends are teachers, and I have heard some real horror stories of parents who would NOT let go, so I am definitely not the worst that's out there! ------------------------------------------------------------------------------ On another note, Dr B (Tucker's pediatrician) called me today, they finally received his lab results. His blood glucose was 95, which is normal. The problem is that glucose was present in his urine, which is not good. Also, his A1C level was elevated, at 49.4 (normal ranges from 1-31). The A1C checks his level of insulin over time, meaning that even though his current blood sugar is good, it doesn't mean that he doesn't have insulin problems. His body seems to be putting out too much insulin, and is not able to absorb it back. So the Endo said that we need to test it 3 times a day for 4 weeks, then we will take in all of those results to our appointment with him. I am going to see the nurse and get a meter along with education about all this. My mom took care of a little boy with diabetes (don't you all remember Zane? :) ), so she knows all about this stuff, but the dr said she would still like me to come by for education on it. We will hopefully get a free meter out of the deal, so that's fine. So the suspicion is that he may have Type 2 diabetes, but hopefully that is not the case....just add the Endo to the list of specialists and checking blood sugar to the super long To-Do list, I guess! We are hoping to monitor this and not let it turn into a big problem. We are also on the list for an Echo/EEG in Houston to check out Tucker's heart. If it comes back abnormal, we will be followed by a cardiologist here at home. If it is normal, then Tucker will wait 2-3 years to have another one, and that will be that. So another trip to Houston is in the near future, but hopefully it will yield good results.

Dreams Come True?? If Only....

Warning...this will be an emotional post. One of the first things we thought of when Tucker got his diagnosis two weeks ago was signing him up for a wish. I have actually thought of it before then....I knew that "whatever" he had was not good, and that he would likely qualify for a wish at some point. And we have given him so much over the years, but there are some things he might wish for that we just can't give him right now....which is what those wish organizations are for. So I knew about the local Dreams Come True organization, they give wishes to kids who are 2 1/2 or older with life-threatening conditions in Louisiana. Chris and I want to give Tucker every opportunity in life that is available, whether he is with us for a short time or for 90 years....we will take every opportunity available. That being said, it felt kind of funny to fill out the dream application. Here was my 4-year-old boy, running around at my feet, happy as can be emptying out and refilling my purse-why was I bothering this Dream organization with my kid's problems? Surely there are kids and families out there more deserving than us and in greater need....kids who actually "know" that they are sick and live with that fear everyday....Tucker lives life with no fear ;) and he wouldn't know if he missed out on a wish. Chris and I filled out the application, Chris actually wrote it since my handwriting is atrocious. So we faxed it over to Dr. K's office and waited for an answer. On Monday morning I had an email in my inbox from Dreams Come True (DCT) saying that Dr K marked that Tucker's condition is not life-threatening, therefore they could not give Tucker a wish. My heart leapt for a moment, thinking the last two weeks was just a bad dream....there is a song on Christian radio where one line is "you're wide awake, in the middle of your nightmare, just believing that your situation's unfair" well I have been thinking that a lot, just hoping it was a nightmare. So maybe Chris, Mom, and I all had a hallucination and misunderstood the doctor? I replied to the email, saying that of course we hoped Tucker's condition was not life threatening, and I apologized for the misunderstanding. Then I emailed Dr K's nurse. I explained that my family has been dealing with this diagnosis for nearly 2 weeks, and we were fairly sure it would take his life....so to hear the opposite from DCT was very surprising. Then I waited for a reply, while we all silently hoped for good news. My friend Missy (saving the day with information as usual!) explained that Dr K often defines life threatening differently than other docs, so just keep that in mind. Well, she was right. The nurse emailed me back, she said that Dr K only labels kids as "life threatening" when they have a year or less to live. At this time, Tucker seems to be in a healthy state, and barring metabolic crisis or infection he should stay that way for a long time. Any of this could change at any moment, and if that time comes, they will re-apply for us. So I sent this information on to DCT, and I again apologized for any confusion and wasting their time....but really, in the back of my mind, I "knew" that Tucker was eligible for a wish. Because by the time his illness gets that bad, he may be too sick to actually go on a wish trip....so I think Tucker is exactly the kind of kid they are looking for. So today I was sitting on Tucker's bed watching him play toys (per his instructions!), and I got a phone call. It was Becky with DCT saying that Tucker's wish is approved. We chatted for a few minutes, and she said Tucker's condition is definitely eligible, and Dr K's nurse was happy to explain more about mito to the DCT committee so that they could grant more wishes to mito kids in Louisiana in the future. The DCT lady thanked me for helping to open doors for other kids to get wishes. Two people will be coming out to our house next Tuesday to meet Tucker and "interview" him to decide what his wish will be. We are not really in a rush for any of this, I am sure that many of you are wondering if we are moving too fast or are jumping the gun....we know how quickly this disease can change and/or progress, and if Tucker had greater medical needs I just don't think we would feel comfortable going on a trip at that point. Back to my original point that we want to give Tucker every opportunity as it comes, not wait around... Well I have so many emotions about Tucker getting a wish. I'm kind of happy, but not really. That would just be bizarre. No parent ever wants their child to be eligible to receive a wish. I have so many dreams for Tucker, so many wishes....and this organization can't grant any of these. They can help Tucker, Chris, and I to create some happy memories by granting us a wish, giving us a chance we would not have had otherwise....but our real dreams, that mito will go away, that we will be guaranteed a happy and healthy son that we can watch grow through the years....not so much. On the other hand, if DCT had denied Tucker a wish, I would have been upset also. I would have felt that they didn't really understand his condition and its severity. Also, DCT can give our son a wish that we likely wouldn't be able to give him for a long time, whether that's going on a trip or whatever else. So right now I am just grateful that organizations like Dreams Come True exist. Our family is going through a rough time right now, and organizations like this are there to give these kids and families a wish, to help them have good memories, and maybe a chance to be more "normal" for a short time. I think knowing that Tucker was granted a wish makes this whole situation seem more real...and along with the fact that Tucker starts 4 year old preschool tomorrow in a class for special needs kids....I have had just about as much as reality as I can handle today! Look for more updates about school and the wish process, I am sure Tucker will love both!

Another Day, Another Test

We still haven't heard back about the blood sugar testing. I have been harassing the ped's nurse, but so far she just told me that Tucker is not in any danger. The ped has a call in to the Pediatric Endocrinologist to get some clarification on some of the enzyme tests, but he seems to be okay. I will not take that as good news until I hear the whole story, but for now I am okay. On Thursday afternoon my cousin Tyler graduated from high school. We are so proud of him! So on the way there, my phone rang...I was hoping it was the pediatrician, but it was the nurse for the pulmonologist. Tucker has been due for a sleep study since July, but the pulmonologist's office is always busy and running behind. The nurse said either we could come in the next night for a sleep study, or it would be over a month before they could fit us in. Tucker has a hard time with these studies, so they needed to have him in the sleep lab on a night when there were two lab techs available. So we scheduled a sleep test for the next night. I was a little wary of having so many tests in such a short time, poor Tucker had been through enough lately! But at the same time, I am very worried about his sleep at night, so I wanted to have this test ASAP. If Tucker isn't getting restful sleep (which he has always had a problem with), then that would make all of his cells work overtime during the day, and obviously that would not be ideal with his mitochondrial disorder. A few months ago I was dead set against him getting a CPAP mask to help him sleep at night, I felt like it was a step backwards. But now I would get it in a heartbeat if I knew he needed it so we can help him to get some good sleep. After I made the appointment, the freak-out started. Tucker HATES these sleep studies!! Last time we went, he cried so pitifully the entire night, barely got any sleep, and his results came back terrrible:( So then he got his tonsils and adenoids out to help, and we are hoping that worked. I told Tucker we had to go sleep at Dr. T's office, and they were going to hook up all that stuff to his head again. He was actually excited, he is so goofy sometimes! We packed our stuff (only one person is allowed to sleep over, so Chris didn't come), and headed out. When we got in the room Tucker turned off the light and said "night night." I told him we had to wait for the nurses to put all the stuff on his head. When they came in, he started crying:( It was so sad, he started crying for his Paw Paw! The lady told him she would call his Paw Paw to make him sit still, that way she could be done and out of his way. I didn't say anything, but I know that if Tucker's Paw Paw came in, he wouldn't be holding Tucker down, he would be kicking those ladies out! Haha:)So he cried and cried, but then as soon as they left the room he asked for "light off" and "night night." I brought him Cheetos and Chili Cheese Fritos, I asked him which one did he want? He just looked at me, so I said, "do you want both?" He answered, "yes." That is great because he usually just repeats the last word he hears, so when he anwers a different word we are very excited. So we started with the Cheetos. Look at this picture with all of the stuff he is hooked up to! Really the worst part about it is that Tucker pulls and rubs his hair to go to sleep. So the cap is in the way and he gets really frustrated when he tries to rub his hair. The lab tech remembered him from his last test, so she pulled some hair out of his cap at different spots! It looked pretty silly, but it helped!

He had belts around his chest and tummy, too, which he hated, but I told him he had a belt on like Daddy, and that seemed to work! Tucker is always trying to hook Chris's belts into his own pants, which obviously are too big. Sometimes we wrap Chris's belt around Tucker's tummy and tie it, it makes him so happy! So Tucker licked the cheese off of every Cheeto, minus the ones that I ate. He also watched a Kipper DVD on the laptop, I can not imagine how we would have gotten through the last 4 years and all of the tests without the laptop and DVDs!

So Tucker slept all night, it was so great. I am hoping that means he will get great results.

I have a feeling this is not our last sleep study. As we left at 5 am yesterday morning, the techs said "bye Tucker, see you later!" and I said "yes, hopefully much much later!"

High Blood Sugar

Yesterday afternoon Tucker's pediatrician called me. When I saw the number on the caller ID I assumed it was the peds psyhchology department calling to confirm our appointment for today. I was surprised to hear the voice of the ped's nurse. And yes, we are on a first-name basis (sad, I know!), but she still rarely calls me. She explained that Tucker's labs in Houston showed that he has high blood sugar (224, normal is under 120 I think, and 200 and above indicates Diabetes). She said we needed to come in and take care of it. I explained that Tucker has school and therapy on Wednesday, and we're pretty much booked up this week, so could he come in next week? She said no, that we have to come in as soon as possible! So I asked her what a high blood sugar reading could mean exactly? She was taken aback by that question, I think, and she said it could mean he has diabetes. I know a lot about medical conditions, but not really diabetes, and I wasn't sure if high blood sugar or low blood sugar indicated diabetes! I looked at a few diabetes websites and realized that this could definitely be associated with his mito. I don't think it's something he has had for too long, though, because I am fairly sure that he has this tested every few months and this is the first high reading. It could be the start of a new problem, or the reading could have just been a fluke. So today Mom and I took Tucker to the ped's office. They took 4 vials of blood and another urine sample. Wow was that unpleasant!! Last Tuesday Tucker sat so quietly to give blood, then on Friday when we went back he totally flipped. Today was at a different lab, but he lost it when he saw the chair and the needles. I had to lay on top of him and hold down his lower body and head, and three lab people held his arm so they could get the 4 vials off of one spot and not have to re-stick him. He tried to claw my face off, but luckily I had cut his nails last night! One of the lab techs remarked, "wow, you're a great mom to hold him down for us, we need more moms like you,"....well I didn't really take that as a compliment! I'm sure Tucker wished I was not holding him down! He also kicked the nurse when she laid him down to get his urine sample. Very unpleasant for all of us! The urine came back with glucose in it, which is not a good sign; the bloodwork is not back yet, but I should hear something by tomorrow morning. If the tests are still high then we will go to see the Endicronologist, likely tomorrow. In my last blog post I mentioned that we keep adding specialists instead of losing them....well we may be adding Endo to the list....not exactly what I had in mind! I don't know much about diabetes, but I know that options to control it include injections, diet, and checking blood sugars. Because Tucker is tube-fed, the Endo could make the decision to put Tucker on continuous feeds to regulate his blood sugar. I would rather not go with this option for the sake of mobility and feeding issues, but I guess we will cross that bridge when we get there. In other news, my sister Jessica is going into the hospital tomorrow for a kidney surgery. It may be considered just a "procedure", I don't know all of the details. She has large kidney stones, too large to pass, so they are going in to remove them tomorrow. I will be praying for her, please everyone else pray for her, too! I called her tonight, she was in bed watching the Cooking Channel (her favorite!) and we all told her good luck. Tucker even told her "hi" on the phone, which made her so happy:) Tucker has 6 days left until he gets on the school bus and goes off to preschool. We are very excited, and also nervous. I am meeting with the school nurse Tuesday afternoon to discuss everything, hopefully we are not discussing diabetes.

Conversation with Dr. K

I think I am ready to explain the entire Mito appointment, trying to repeat the conversation with Dr. K as closely as possible. Of course you won't be able to hear my heart actually fall out of my body and hit the ground....but you can imagine it. I have had a lot of conversations with doctors in Tucker's 4 years....but I have never actually cried at one. This is not something that I am bragging about, it's just the truth. I think with all we have been through, my first reaction is always "Okay, so what do we do?" or "Tell me the plan, let's get started." So my reaction shows two things: 1. the level of sadness and emotion I felt at this appointment, 2. the empathy and compassion Dr K offered us. Dr. K walked in and took Tucker to get his Mito Mike, the stuffed turtle. She came back and sat down with us. She said that she could see that Tucker's muscle tissue was abnormal as soon as she had it under the microscope. This could point to a muscular problem or a mito problem, but the main point is that it was obvious. So she cut up the muscle fibers and looked at the cells. The first thing she noticed is that Tucker's mitochondria look funny. The mitochondria usually have squiggly DNA and Tucker's DNA float around in circles. Tucker also has double the mitochondria in each cell than a normal person. We thought maybe that was okay, like his body was making up for his mito looking funny by producing more of them...Dr K said no, his body is working way too hard to make the same amount of mito. So the next step is to test the 5 Complexes in the Energy chain. A regular person takes in sugars (food) and the body takes it through a chain to make energy. A person with mito could have a problem in any part of the chain. Tucker actually had increased enzymes in most of the complexes, and he had 87% of normal in one of them. For example, a person with a complex II deficiency might only have 15% of enzymes at the Complex II part. At Complex V Tucker had almost 400%, which is obviously way too much. So up to this point, I thought it wasn't THAT bad....so his mito is not doing its job, but his body figured out some way to make up for that, by making tons more. So then Dr K said she actually "counts" the mito DNA (I'm sure that's not what she really said), because the mitoDNA tells every new cell how its mito should work. Tucker's mitoDNA is only 56% of what it should be. This means that as each new cell is formed, the mitoDNA is copied wrong. In theory, Tucker started out with each mitochondrion in his body having 100% DNA, and over time it copies worse and worse, making new cells function worse. As time goes on, the mitoDNA continues to deplete, and things get more messed up. This is the point where I cried and asked "you mean he's going to get worse?" She said "yes, that's exactly what this means, but I can't tell you how long that will take or how it will happen." Technically a person with 50% or less mitoDNA has a Depletion Syndrome, so Tucker does not meet the actual criteria, but Dr K really believes that if we were to re-test Tucker in a few years, he would have less than 50%. I know that I typed most of this information in last week, but I think as time goes on the conversation and the information gets more real. I have noticed many things this week with Tucker....things that I have been blaming on his prematurity, things that I have been dismissing as "quirks", but they now clearly relate to his mito....each one of these symptoms is like a kick to the stomach, a knife in the heart, making it harder to breathe.... I have suspected for some time that Tucker has autonomic problems, which are a whole other ball of wax that comes with mitochondrial dysfunction. This explains so many of his issues, like not sweating even in extreme heat, extreme light sensitivity (Tucker screams "light off" any time a light is on!), and some other sensory things. I do not really know how to deal with these emotions or the feeling of anticipation of the worst....Chris usually calls me the pessimist, but really I think I have always been the realist. And now I am too scared to be the realist, I don't want to deal with this new reality. I don't have the fight or energy in me that I need....that Tucker needs. Later this week we should receive a packet of materials from Dr K's office, it will have a list of vitamins and/or meds he should start to boost mitochondria function (Tucker already takes 7 meds each day, and I know that there are many other kids out there on many more), and every time we add meds to the list...it is again a new reality and a reminder that none of these meds are ever going away. We also have to schedule an echo for Tucker' heart with the cardiologist...the ONE specialist we actually ever got discharged from! When you leave the NICU, you have appointments with a million specialists, and over time, you get discharged and cross them off the list....except not Tucker. 8 specialists still follow him, and we actually add more each year instead of taking them away....so to add the cardiologist back is completely necessary but also a big let-down for me. I used to look at Tucker's prematurity and NICU stay as a "wake up" call, as a reason for us to cherish every moment and advancement with Tucker, that we were somehow luckier than other families because we truly appreciated every second with Tucker and every milestone we thought he would never reach...well now I feel like we are still very appreciative of every moment, and we did not need to add another diagnosis to just really cement our feelings that every moment is precious, and that we are not guaranteed anything in this life, not even things that most people take for granted. I am kind of sick of wake up calls and reminders at this point. Thanks everyone for reading as I adjust to this new reality...I have a feeling it will take awhile.

Busy Weekend

I think "Busy Weekend" should be the title for almost all of our weekends! This summer has been crazy, we keep grabbing every opportunity for Tucker to swim and have fun, since now he can get wet:) Well Friday was not a "fun" day, we made the trip to Houston and back in one day. Mrs. Mia and Mr. Ricky drove us, so it was nice to spend time with them and have a few stops along the way. But Tucker was NOT happy to be in his carseat that long! He slept for the trip there, but on the way back he was wide awake. He talks a lot now, but about 70% of the time we don't understand him! So he was screaming "hotoa, hotoa" for a long time, and we all laughed, guessing what he was saying....over halfway home, I realized he was crying for a hotel! He wanted to stop and get out, poor baby. I told him "we're not going to a hotel, we are going home." He was not pleased. We also hit roadwork twice on the way home, he kept screaming "go! go!" and "get out truck!". For those of you who don't know, Tucker has NEVER asked to get out of a truck before, haha! So we knew he was tired of traveling. The reason for two trips in one week: a screw-up at the lab. They did not get the orders from me on Tuesday, but in my defense-they did not ask me for the orders on Tuesday! So we went to admitting on Friday, and they informed me that the lab was likely closed....I said "okay, we'll go to the ER. We are not coming back another day!". So it turns out the lab was still open, but we had to wait awhile for someone to be called upfront for us. Tucker was pretty happy to be there, but once Chris and I took him to the back, he freaked out! The lab people had to call around to see if they had any of the blood from Tuesday...apparently not! On Tuesday they took 5 vials, so we were hoping they would only take the other 4 they needed....but the guy re-took all 9 vials, along with a urine test....which brought out Tucker's best friend, the "pee bag." Yes, it is pretty gross! On Tuesday the blood draw was super easy and quick, but since that blood was nowhere to be found....of course the stick on Friday was rough. The blood came out so slowly that the guy asked us if Tucker had a clotting disorder. Um....no, unless there is something going on that I've never heard of. Tucker cried big tears and screamed "ow" the whole time, so Chris promised him a new toy and a bag of chips afterwards. Missy met us in the lab (her son Samuel is still inpatient) and took us up to Samuel's room. The lab guy didn't have a urine collection kit, so Missy got one from one of the nurses upstairs. Chris and I attached that to Tucker, and he played with Samuel's toys for awhile...Samuel was too tired to get out of bed. After awhile we collected Tucker's urine, which was a task in itself! Then Chris called the lab guy, and met him out in the hall to give it to him. The guy had to call us back to let us know if it was enough, luckily it was! We said our good-byes, then we headed home. We stopped at Red Lobster for dinner...the one in Baton Rouge closed years ago, so it was a treat to eat there! It really was yummy, although Tucker did not appreciate it one bit! He did like looking at the live lobsters, though:) The Red Lobster was right next to a ToysRUs, so we took Tucker over to stretch his legs and pick out a prize. Chris kept disappearing and coming back with 3 or 4 toys at a time!! Mrs. Mia and I told him "it is not Christmas!", but Chris can not help himself! This is why I do the Christmas shopping, haha:) Chris has such a big heart....he would buy out the whole store if we let him. We ended up with two toys; we bought one and Mrs. Mia bought the other, and we left the store. We got home around midnight. Saturday was my brother Dylan's 18th birthday. Our family waited for a little brother for a long time, and I will never forget the day Dylan was born! I was 8 years old, and we didn't know if the baby was going to be a boy or girl. My Daddy came out to a full waiting room and announced "It's a Boy!" and no one believed him! My Aunt Wendy asked to see him personally to confirm, haha! That really was one of the best days in our family's collective history. We celebrated Dylan's birthday at Maw Maw and Paw Paw's house. Morgan and Grace had spent the week there, and it was time for them to go home. Tucker played with his cousins, he always loves that! On Saturday night my mom took me to see the Baton Rouge Little Theater's production of the Sound of Music. I had been wanting to go all summer, but I was always busy! So we ate at Zea's (yummy!!) and then saw the show. It was great, and I will be singing the songs in my head for awhile:) Chris stayed home with Tucker, and Justin and Jackie came over to watch horror films with them....yes I am serious, but luckily Tucker did not watch the movies, he just made huge messes in the kitchen while the movies were on. So after spending the evening with Tucker, here are Jackie's and Justin's thoughts: Jackie: "Tucker is like a little tornado." Justin: "It must be hard to keep things cleaned with him around." Yes, it is! That is why sometimes the house looks like it does....some days I just pretty much give up! On Sunday Brad and Sarah's friend Kyle took us all out on his boat. Tucker was very excited to go, but he was not excited that we made several stops on the way. He cried at WalMart, the gas station, and the Ice place (because no, we could not get ice at the gas station, it was too expensive), but he grinned from ear to ear as soon as he was sitting on the boat. We rode around Blind River, I don't know the area very well, but we spent several hours there. Kyle drove us to the Sand Bar, which is a shallow area where even I could touch. We got out there and floated around, and once again, Tucker amazed both Chris and me with his swimming! He just floated all around with his little floaties, kicking so hard like he was actually going somewhere:) He did not like it when Chris or I would try to pull him around and carry him. We got back on the boat and rode away, but then we passed my Uncle Joey and Aunt Susan in their boat, with Gina, Addi, and Molli on board. So they turned the boat around and we all went back to the sand bar to swim with them. I told Tucker we could swim with Molli, and he jumped up, then said "Mohi, pool." He calls any water a pool! I told him it is a lake, but he still called it that. We all swam for a little while, but then we were ready to call it a day. Being out in the heat all day was pretty exhausting, and we all got kind of sunburnt. Tucker rarely shows sun on his skin...as pale as he is, you think he would burn easily. Of course we put sunscreen on him! But I also put sunscreen on us, and the sun just comes through. With him, it's like his skin literally can not hold pigment, we have always joked that he is albino, but yesterday for once his cheeks were a little red. When we got home I put Aloe gel on myself and Chris, so Tucker requested "lotion" and put his arms out for me to apply it. Then he put his face up to me, so I put the aloe on his cheeks....about 10 times later, I finally told him it was over! So after this weekend I have decided Tucker needs more rest! The new issue of Complex Child Magazine came out today, and as timing would have it....this month's edition is about Mito, just days after Tucker was diagnosed. So one of the articles is all about Mito kids seeming to be okay, then getting run down and having something minor set them way back.....well, hmmm, that is NOT something we want to happen! We really do run on all cylinders, almost too much for any kid, let alone a kid with energy problems. I think Chris and I just want Tucker to experience so much, and he just loves so many activities, so we never say "no" to any ideas. Our fall calendar is already jam-packed, but luckily many of those activities are "adult" activities, so maybe Tucker can spend some quiet time with his baby-sitters:) Tucker is going to be attending school 8 hours on the weekdays, and I'm sure that will be enough activities for him. My mom told me the other night that Tucker has experienced more in his 4 years than any of her kids did by age 10....and he spent the first 9 months of his life in the hospital, and the next 3 years on a vent!! So I guess we could dial it down a bit, it would do us all some good:)