Big Blessings=Lots of Work

“Yes, He, who is in me, is greater than I will ever be, and I will rise”

“I will lift my eyes to the maker of the mountains I can’t climb”

“Oh Father, give me the strength to be everything I’m called to be.”

Our little family has been handed some major blessings in the last few months, and as any good blessing will, they have brought along tons of work. I struggle with all of this as I am only human, after all, and sometimes it all seems like too much work. I know that God has given us all of this because we can push through and it will all be so worth it….but some days it is so tough, I admit it! For any KLOVE listeners, you’ll see from the above quotes that Christian music has helped me through many tough days and reminded me of our blessings.


Blessing One: More Amazing Feeding Progress
Tucker’s feeding therapist came for her second visit in late February. Tucker was amazing, and did great with the new foods: avocado, tropical fruit mix, mashed potatoes, and hummus. He also did great with learning to drink chocolate milk and coke out of a cup. We use Simply Thick to thicken the liquid up considerably, but we were still surprised at how well he did.

So, with Tucker doing so amazing, we now have a whole new list of foods to add to his list. Tucker also gained 2 pounds since we started oral foods, so Jennifer said we need to cut out more tube feeds! She said if he stays on that path, he will end up at fat camp, hahaha.

It is seriously a very delicate balance to manage Tucker’s diet. I organize most of our lives on spreadsheets…..but Jennifer takes the spreadsheet to a whole new level with the meal plan :) This is not a bad thing, by any means, because it’s really the only way to look at everything at once. It’s just very hard to piece together meals with the right sugar content, the right fluid content, and the right mix of preferred foods and not-so-preferred foods. (Picture Tucker seeing white beans coming at him and screaming “Mo! Abocado! Abocado!” because he wants the avocado instead of the beans, hahaha.) Also, funny story-most kids will hang around the kitchen when you’re mixing a cake, hoping to lick the bowl. Tucker hangs around when we blend up avocado, he puts his little fingers all over the bowls and licks it up, he loves avocado!

Because Tucker has mito, he needs some type of food or fluid in his body every few hours. With tube feedings, this was easy, because even when he is asleep we can feed him. Now he takes in so many calories by mouth that we have cut his tube feeding back to just two per day-one can of Diabetasource formula at school, and one 8 ounce cup of blended food before bedtime. While this is amazing, and such a blessing, I can not stress what a HUGE change this is, as I have spent the last almost 6 years feeding my kid through a tube. When he had sugar issues, it was scary, but we just cut the sugar out of his blend and put it through his tube. Now, his absolute favorite foods are pudding, yogurt, and any fruit…of course all of these foods are full of sugar, in particular the pudding which has the most and of course is his absolute favorite food. Thank goodness that avocado is low in sugar.

So right now, Tucker’s list of food includes: avocado, sweet potatoes, hummus, white beans, applesauce, tropical fruit mix, chocolate pudding, soy yogurt, mashed potatoes, and Boost Glucose Control shakes. He really loves the chocolate Lactaid milk, but I swapped that out for the Boost Glucose control because it has more nutrition and much less sugar. He didn’t even react to the change, so that’s great. We are hoping to get the Boost covered by insurance after we see the nutritionist.

Just a few months ago, I couldn’t have imagined that Tucker could eat so many foods. We are excited, but just so that everyone understands (and so that I can look back on this time and remember how far we have come), Tucker’s feeding sessions are not easy or like regular dinner time. They are very structured, and Tucker expects certain things to be done before and after he eats. All of the food that he eats is blended down to the point where there are no grains or pieces. For most foods, this means that we have added quite a bit of Lactaid milk to get it very smooth; then we add Safflower Oil to some of the food to add some good fat calories and to get it even smoother. Even something that you’d think is a good “baby” food, like applesauce, is WAY too gritty for Tucker to eat without getting blended first. This is not how it will always be, we will work to build his texture tolerance up over time; but for now, the blender stays out on the counter, and at least two foods are blended up each night. I’ve said this before, and it is even more true now…I feel like I spend more time blending Tucker’s food than actually being with Tucker. He is actually scared to death of the blender, so when I blend up his food he is at least one room away. My goal is to have at least two weeks of each food blended and frozen into ice cubes in the freezer, because we have got to get over the constant blending and move onto some sort of family night time routine. I think that we will actually buy a little freezer for the kitchen that will just hold Tucker’s foods. That way I can blend up a bigger batch, pour it into ice cube trays, then the next day pop out the ice cubes and seal them up into big Ziploc bags. That way we always know what we have and when to make more.

Even though the blended food is so smooth that you can’t see any texture to it at all, we still don’t just feed Tucker as it is. We set up one of his favorite videos (the current one is Mickey Mouse Goes to Wonderland), set out the two foods for that meal (one preferred, one not preferred), and the cup for the chocolate shake. We have a visual of two bowls, and one cup. Tucker has a book of Mickey stickers, and for each empty bowl or cup, he gets to put a Mickey sticker on the picture of the bowl or cup to signify that that part is over. He is very proud and happy when he gets to put the stickers on. Chris was pretty sick on the second day that Jennifer was here, so he missed the part of training about the visual aide. So on Tuesday morning, he started feeding him breakfast, and Tucker threw a fit….it was ugly :( I went in the room, and noticed there were no pictures of bowls laid out. Once I drew out the pictures for Tucker and told him he’d get his stickers, he was fine and started eating for Chris. Only a few people are actually trained to feed Tucker, there is just so much that goes into it.

We feed him only a certain amount per spoonful, and we have to use a particular spoon. He sits in his special chair with the buckle on it, and the tray in front, because when he feels more secure he does much better. He can also have a toy or two to hold or play with while he eats. He usually has one or more teddy bears watching the meal as well. We feed Tucker the non-preferred food first, so that he is still interested in eating the second bowl even if he is not very hungry. So really the first five minutes of each feeding are the worst, as I think Tucker is still testing us to see “wait, they expect me to do this again? They aren’t over this whole eating by mouth phase?” then he has to take a few bites to remind himself that no, it really isn’t going to kill him, and that the faster he eats the non-preferred food, the sooner he can get to the good stuff. Right now his meals are taking us about 30 minutes, and it’s pretty hard for him to sit for that long. We are hoping to get the time down soon. He has 3 big meals-breakfast, snack after school, and dinner time. He also gets two smaller meals at school during the day. I am trying to change the meal plan so that he’ll get more food at school, but so far we haven’t been able to figure out which foods to send with him other than his two favorites, yogurt and pudding.

Tucker’s regular ABA is going well, and his ABA therapists help feed him his afternoon snack. We have been short one ABA therapist for two months now….so Tucker has ABA two or three afternoons each week instead of the desired five afternoons per week. We have had several great therapists apply, but then fall through at the last minute. Thank goodness that my mom gets him off the bus on Tues and Thurs, otherwise I have no idea what he’d do after school. He is still making progress, but it would obviously be better if he had more therapy. So please pray that our family can get used to the new eating routine, and that we find a new ABA therapist that fits in with Tucker’s program and schedule.

Blessing Two: Check out Tucker's Picture :)

Yes, we are expecting a new little one at the end of September! SOOO exciting!!


So you may wonder (as I do every day), “well Leigh, you are hardly pregnant, how could a very small baby in your tummy be work?” This little one has zapped every ounce of energy in me, and has turned me into a nausea machine as well as re-igniting my childhood asthma….it is not pretty! So I am now on the 8th week of needing 10 + hours of sleep at night, plus 6 different meds just to get through the day. Thank God that I have had some energy return in the last week. I lost 4 pounds, but have now gained one back, so that’s good.

I have already been to the doctor more times than I can count, and had lots of labwork done. All is normal at this point, yay! I will be seen by the high risk doctor starting at 18 weeks, and we will do everything in our power to get to full term this time. Tucker deserves a healthy little sibling to hold and love on. For people in our area, pretty much every baby born from 1967 on was born at Woman’s Hospital….including Chris, Tucker, and me. That is where Tucker spent the first 8.5 months of his life, and it’s where I now volunteer for NICU parent to parent support. Well, a new hospital will open in June, right when I should be at 24 weeks. We are praying to get way far past that, and deliver in the new hospital. That will be exciting, though confusing for all of the visitors, I’m sure, as everyone is so used to the current hospital.

Tucker has been asking for a "sistah" since before I was even pregnant....what we all think he really wants is for his cousin Baby Kinley to move in, haha. I guess he wants a sister because then he can keep his daddy all to himself and the baby can hang out with me. My heart has broken as I haven't had the energy to care for Tucker the way that I like to lately. Chris, my mom, his therapists, and Chris's parents have done a great job, but when I hear Tucker at my bedroom door "Mama, come play wit me" my heart breaks! So please pray that my energy comes back and we have a long, boring, healthy pregnancy. Tucker has enough changes coming, he needs his mommy at her best for the next 6 months.
 
One last thing: Tucker has an appointment with the surgeon to check his leaky g-button this week and a follow-up with the ENT as both of his ear tubes are trying to fall out but refuse to, and he is on his third ear infection in three months. I hope to update on both of those issues soon. Tucker also starts T Ball this Saturday, let's all hope he stays on the field this season :)

Day Two of the Trip

On the second day of the Houston trip, we got up pretty early. We got dressed and packed up, then we went downstairs for the free hotel breakfast. It was pretty good, the best part is they had boiled eggs. Tucker got an egg in a bowl, and he was so excited!

Once we ate and loaded up the car, we headed over to the doctor's office. It was about a 5 minute drive, and we were quickly in the office. We signed in and then settled in for the wait, it ended up being over 2 hours!! Every ten minutes or so I would go to the desk and ask for an update, they were just running very behind. Tucker was SOOO good, poor kid.  He listened to Jason Aldean on the IPhone, watched Kipper on his little DVD player, and looked for bears in all of the magazines in the waiting room. We took him for a few little walks around the office, but he mainly just sat and was very still.

Then we went in and they didn't need to get his vitals since Dr. K had just seen him the day before.  Dr. P came in pretty quickly and apologized for the long wait. She asked us to tell her all about Tucker's lungs, from the beginning. Well, that is a long story! When I told her that he was born at 27 weeks and spent 8 1/2 months in the NICU because he couldn't get off of the ventilator, she asked, "wow, and you all are still functioning?"  Well.....that is up for interpretation!  It is always an odd experience to have to meet a new doctor, and even though they have the chart, they like to ask the parents to tell the kid's story. It brings back bad memories and reminds us of how far Tucker has come, so it is very emotional.

The dr. is double certified, meaning she is a lung doctor and an immunology doctor. So she ordered labwork for Tucker to get all of his blood levels and immune levels to be checked, to check to see if his vaccines worked to make him immune to those illnesses he was vaccinated for, and to run a lab panel to see what he is allergic to (he is on 2 allergy meds each day, plus over the counter cold meds almost every day). She also ordered a chest X Ray because she said his lungs sounded coarse. I told her that Tucker's doctors at home say his lungs sound great, she said they probably sound great compared to where they used to be, but they were still coarse. So she wanted a baseline Chest XRay while he is healthy, so that she will have a baseline to compare it to if he comes back in with some type of lung problem. I thought she was going to give us some answers on Tucker's sleep issues, but she is not a sleep specialist. So she referred us to her colleague, and we will be seeing her in September.

By the time we were done with the appointment, it was noon. We went to the lab (right next door, not across the street! haha), and they were just closing for lunch. So we had an hour to wait, so we went downstairs to eat lunch. Again, Tucker was so good. At this point, I was tired, frustrated, and I think coming out of the nice little denial I have been in for the past few months....the summer has been very busy at work, and very busy for Tucker, and he is just doing great with his therapy and health. He sees about 10 specialists, but he hasn't had any appointments this summer except for his regular 5 year old checkup until these 2 days.  So I had kind of let my guard down and let him be a "normal" kid, well normal with autism, I guess.

So to be back at the doctor's office, and to know we had to come back soon for another appointment with a new doctor, and also come in soon for a 24 hour  EEG to check for seizures....it kind of just knocked me out of my comfortable denial place that I had been in all summer. 

So Tucker ate his chips, then we went over to the imaging center to get his chest X Ray. Once again, he did a fantastic job, he stood very still so that the XRay tech got a good picture of his chest.  Then we went to the lab to get blood drawn. This lab is a lot smaller since it's only for the pediatric clinic.  There were two older boys sitting outside the lab, I guess around 7 or 8 years old. They each had to get blood drawn, well the first brother was fine and it only took a minute. The second brother was crying before he even went, and then he was pretty hysterical when the lab tech pulled out the needle. The mom was talking to him like he had gotten labs drawn many times, and he knew that it would be over very quickly if he just stopped yelling.  I told mom "get Tucker out of here!" lol, because if that big kid was screaming and in hysterics, Tucker was going to think the lab tech was beating him up or something! Mom took Tucker for a walk down the hall until the boy was done. Then it was Tucker's turn, and we went in. He did really well, I put his Teddy Bear song on the IPhone, and he sat very still while the tech drew a few vials of blood. After this, we left the office, and drove away into Houston traffic.

We were ready to go home, by then it was about 3pm. Tucker fell asleep pretty quickly, and about an hour later he woke up "Morgan! Grace!" We hadn't planned on stopping in Lake Charles because we were tired and ready to go home, but we had to stop to eat anyways, so we changed our minds :) Aunt Kim and the girls met us at Logan's, and Tucker was so happy to see them.  He licked all of the peanuts and the girls fought over who got to sit next to him.  Then Grace had to go to the bathroom, so of course Tucker and I followed. Tucker pee peed on the potty, well mainly the floor, but some of it made it in!  He was so proud of himself again, so we made a very big deal out of it.

So now it has been two weeks since the Houston visits.  Dr. K called to let us know that Tucker had glucose in his urine, meaning that his blood sugars are too high, so it is spilling over. I was pretty adamant with the nurse that her results had to be wrong, as Tucker's blood sugar readings at home have been low.  She told me that the test was right, and I needed to follow up with the endocrinologist. So that night Chris bought a new battery for the glucose test meter we have, and the reading was 253....so wow, maybe we have been taking the blood checks at the wrong times, or maybe we have been using a near-dead meter. I don't know. So we have gone back to monitoring his blood sugar a lot more often, and luckily we haven't had a reading over 200 again, and nothing near the readings in the 400s that we had last October when we learned about this problem.

I have gotten in touch with the sleep specialist, and we are scheduled to go to Houston to see her, and maybe stay overnight for a sleep study. It is a Friday so I took off of work and Chris and I will go together. Then in October, Tucker will have his 24 hour EEG. I did not take off of work, and Chris will be going to Houston with Tucker for 2 days for that.  So we will have been to Houston in August, September, and October of this year. Hopefully after that we don't go back until February for follow up appointments, we are hoping that everything looks good on the tests.

I haven't heard anything back about any of the other lab work, so I think everything must be fine :)

Tucker's button has also been leaking a lot lately, which in the old days used to mean that he was sick. Well it hasn't leaked like this in years, and we keep changing the buttons out (we usually change them about every 3 months, it's not hard at all to do). So the other day Jackie was watching him and she changed his button out because his food was pouring out all over the place! So I called the surgeon, whom we hadn't seen in over 2 years (!! wow, that is embarassing), and they said of course his button is leaking, he is wearing the same size as he has for 3 years. Chris took him in to the see the surgeon last week and they ordered a new longer button. We just changed insurance over to my work insurance so we get to move back to our former DME company (yay!) to supply all of Tucker's food, so I got the orders faxed over to them. We got a new button on Saturday, and Chris and I switched it out on Sunday. He is still leaking a lot, but by next week he should be doing much better.

I hope to update soon about the AMAZING progress Tucker is making with speech and behavior, and the new feeding protocol we will be working on, I promise you, Tucker is the hardest working 5 year old around! :)

Mid November recap

I am glad to report that for the moment, we have Tucker's blood sugar under control! I was so frustrated and upset for awhile, having no idea what's going on with your little guy's blood sugar and tummy/intestines is not a fun place to be! Tucker ended up having diarrhea for 11 days and it's still not really over....seriously....BUT it is only once a day instead of 4-5 times a day, so I'll take it! This diarrhea started right when we changed to Glucerna (diabetic formula), so I was pretty mad that we traded one problem for another, and that Tucker missed two days of school (including a fun field trip) for no illness. He is now at the point where he just goes once a day, and luckily he poops at home, so he attended school 4 days this week:) After one week, we finally got the paperwork sorted out with the insurance, dr, and DME, and we now have one week's worth of Diabetasource, which is another diabetic formula comparable to Glucerna, but with more calories (yay). The DME can't get Glucerna for some reason, but the dr and I read all of the nutrition info, and it seems exactly the same. Tucker certainly reacted to it the same...fantastic blood sugars, and more diarrhea. I also switched out a few of the fruits in Tucker's blended diet (I mix his food for 3 out of 5 of his daily feedings), and his blood sugars look great with that as well. The diabetes nurse and nutritionists were very impressed with the nutrition Tucker is getting, they asked me where I got his feeding plan. I told them I started with the USDA.gov food pyramid, made it gluten-free and lactose-free, and ta-daa! Tucker's blended diet. Assuming his gut actually absorbs all of the nutrition, Tucker is the best-fed 4 year old around...too bad I can't say the same for Chris and me! Having all of this figured out really took a weight off of my shoulders. I picked up the order from the dr saying that the school can feed Tucker Diabetasource, so I'll drop that off Monday with the new food. Tucker missed school on Wednesday for a trip to the Craniofacial Clinic. This was quite an experience for us last year, as this is the appointment where we learned that Tucker's skull was fused shut in 3 of 5 places, and that his brain likely wasn't really going to get too much bigger...ever.... We also learned that there was really nothing we could do about it, so I thought we wouldn't go back to the clinic. Since last year, Tucker got diagnosed with mito, and microcephaly (small head) is actually quite common for mito kids. I called the neurosurgeon's office a few months ago to schedule Tucker's annual visit, and they asked me to see him in the craniofacial clinic instead. So on Wednesday, Mrs. Mia, Mom, and I packed Tucker up and headed to New Orleans. Tucker was seen by the ENT (who switched him to Zyrtec for his allergies, and told us she would almost never consider retraching Tucker-yay!), plastic surgeon, pediatrician, speech therapist, social worker, geneticist (recommended some new supplements for Tucker), and neurosurgeon. Both the pediatric dentist and oral surgeon had seen Tucker last year and said his jaw looked great, so I guess they didn't need to see him this year. That made for a long morning! It was actually a good day because the neurosurgeon discharged us. Tucker has not lost a specialist since September 2008 when the cardiologist discharged him...and lately we have been adding specialists left and right, so saying "adios" to one of them was fine with me! Speaking of "adios," that is one of Tucker's favorite words, we should have gotten him to say it to the doctor! Tucker was extremely well-behaved for the whole day, except for one point when he found all the buttons that moved the patient chair up, down, and made the head rest move:) He just loves pressing buttons and watching what will happen. I found the whole process exhausting. The doctors all had to ask us the same questions; at one point, I asked "did you read his chart?" When a doctor walks in and asks, "So how has Tucker been since the last time we saw him?" I want to say, "Well, a lot has happened in a year, so get out your notebook." The pediatrician and speech therapist were very impressed by all of the services Tucker receives and the progress he is making. He receives everything he can at school (OT, speech, PT, and Adaptive PE), along with private OT and speech. I recapped the summer of therapies, which made me tired just talking about. After I summarized our entire year for the social worker, including 4 hopsital stays (though all minor, thank goodness!) and a ridiculous amount of doctor and therapy visits, I came to the conclusion that we all deserve a vacation! :) In case anyone forgot, we actually have a vacation coming up right after Christmas. Tucker was awarded a Dreams Come True trip to Disney World, Universal Studios, and Sea World. None of us has ever been to Orlando, and we really have no idea what to expect or any real checklist of what to see, other than Mickey Mouse and the Potato Head store (you can buy all kinds of Disney character parts for the Potato Head there) :) Tucker doesn't really like shows, but he LOVES rides and music. He also loves fireworks and parades, along with spending as much time as possible with Chris, so a trip to several theme parks will honestly be a Dream Come True for Tucker. I recently learned that the Playhouse Disney characters have a show at Hollywood Studios, it only lasts about 20 minutes, so Tucker should be able to sit through that. The Playhouse Disney characters are the ones that he loves (Mickey Mouse and all his friends, Handy Manny and the tools, Agent Oso, and the Imagination Movers); I doubt he would recognize Peter Pan, Aladdin, or any of those characters...but he generally loves anyone in a costume, so it should be a fun trip. We haven't really talked about Disney very much, I think we are waiting until it's closer to really believe that we will make it! It's really hard for anyone to believe it when their child is granted a trip like this; we always planned to take Tucker to Disney, and we are thankful that we will get to have this experience with him. Please keep us in your thoughts and prayers as Tucker sees the GI (motility specialist) next week, the dentist the next week (always fun, right?), then the pulmonologist the first week of December.

Frustrated

Well I should have known when I wrote that Tucker would have a "full" day of school this week that I was jinxing him...this week was the only week that we had no planned appointments. I really wanted him to have 5 full days with his school routine before we go into several weeks of appointments and holidays. Tucker's blood sugar has been higher lately, but it has been correcting itself. Both the Endo and Mito drs were fine with monitoring it, but this week it started skyrocketing. On Tuesday evening it went up to 420 after he ate. You are not supposed to check blood sugar right after you eat because it is higher than usual, but no matter what time it's tested it should never reach 400. I called the endo afterhours, and then re-checked, by this point it was down to 380. The dr said that if his blood sugar didn't get down to 250, we'd have to go to the hospital for insulin. If it didn't get down to 150, we had to call the dr back and see what he said at that point. So we checked it every hour, and it went down by about 80 each hour. He got down to 66 after 3 hours, then back up to 98. The next morning I fed him before school and his blood sugar got up to 491. I decided to keep him home long enough to check him after 30 minutes and 60 minutes to get a good pattern for the doctor. I called the endo at 8am, then waited for them to call back. I brought Tucker to school late and explained the issue to his teacher. I also apologized in case Tucker had been acting wacky due to his high sugar. The teacher told me that he has been amazing lately, and that they are so happy to have him in the class. She even thanked me for sharing Tucker with the class:) I was so thrilled at that point...I always feel like Tucker slows the other kids down or doesn't fit in. But he really is fitting in well with the kids and working so hard to be his best...I am such a proud mommy!:) As I walked back in the door at home, the endo called. They told me to bring Tucker in at 145 and we would be changing his feeds. When I went to pick Tucker up from school, he was NOT happy. I had to drag him out of the school until he saw my car and Sarah waved to him. Then he was happy and ran to the car, thank goodness! We went to the drs office, and Sarah kept Tucker busy while I spoke to the nurse practitioner. She and I had a long talk about Tucker's issues, his sugar readings, his feeds, and his mito. They gave me more of a schedule, a prescription for ketone strips to test his urine when his blood sugar is high, and they changed his formula from Pediasure to Glucerna. I usually blend up food for Tucker and feed that to him 3 times a day at home (fruit, veggies, grains, soy milk and yogurt, meat, and fats) then he gets 2 cans of Pediasure at school. Tucker's sugars were skyrocketing equally high no matter if he got the blended food or Pediasure. The NP said that the dietician will look over the blended food and change out the simple sugars for more complex sugars, then we can re-start blended food next week. For two days (starting Wednesday), Tucker will get Glucerna formula. It has fewer calories per bottle than his blended food or Pediasure, so he has to get a lot more of it. Starting yesterday evening, he got Glucerna, and his sugars came down considerably. So I was thinking it was successful after the first feed! Of course nothing is that easy...last night after Tucker was in bed, Chris and I heard him cry out several times. We ran into his room, and he was asleep. We watched him writhe for awhile, and we thought he was having a nightmare. Chris felt his tummy, which felt kind of hard, but he was still asleep so we just left him alone. Today I had to go into Tucker's school at 930 am and feed him the Glucerna. The endo faxed over the orders to change his formula at school, but they didn't get entered into the system quite in time for 930. So I went in and fed him and told the teacher and aides about the formula change. Again, this is at 930. By 11am, I was back at home, and finally starting some housework. I actually vacummed (I know, hard to believe!) and when I was done I noticed two missed calls from Tucker's teacher. I didn't check the message, I just called her back. She said he had horrible diarrhea, and I had to pick him up from school. The school nurse said it was likely from the formula change (endo agrees) but he still had to go home just in case. So I went back to school, and took Tucker home for the second time in two days....again, he was NOT happy! Once he got home, he ran around and was acting fine, so we are thinking it is definitely a formula issue, which the doctor thinks will resolve. The diarrhea came back after his afternoon and evening feeding, I am still waiting for it after his 830pm feeding. His sugars have looked great, by the way... I am incredibly sad and frustrated right now....it seems that as soon as we get one issue figured out, or even a little bit better, something else pops up. This is the nature of mito...I should not be surprised, in fact, I should expect this. It's just different from saying that we know he'll have more issues, to actually experiencing the issues. Tucker's tummy is huge tonight, and I am worried about him. Tucker's class is going to Global Wildlife tomorrow. The kids have spent all week learning about the animals they will see, and they are so excited about it. No, Tucker doesn't come home talking about animals or anything, but I know that he realizes what is going on at school. Mrs. Amy told me that she really doesn't want him to miss the trip; neither do I! Chris and I tried to figure out how we can go, but he pointed out that we'll spend most of the day on a covered wagon feeding animals....no bathroom or changing area nearby! So I don't think we really have a choice. I am going to stop his Levo Carnitine again tomorrow to see if that helps stop the diarrhea at all, and then call the Endocrinologist's office at 8am to get a new plan if the diarrhea doesn't stop. I really don't want to "wait out" the diarrhea, but I'm not sure what other option they'll give us. Another thing that hit me today was that I realized that Tucker actually missed more school in October than he attended; I really do not want the same to be true for November. And these are supposed to be his "healthy" years, before his issues get worse. (At least, the way we understand depletion syndrome...maybe we're totally off the mark). Even with all of this, Tucker has been hilarious. Today Mrs. Joy came over for speech, and she said that she could tell he was bored! He went through the whole box of language cards and was "reading" a book when Chris and I went into the therapy room at the end of the hour. He told Chris a whole sentence "I want de teye-gah bank". He had to say it a few times before we understood what he was saying, we had never heard so many syllables come from his mouth that actually made sense. I feel much better about Tucker's blood sugar, especially now that we have the urine test strips to get more information and know if he needs immediate attention. I just hate that fixing his sugar issues has led to the tummy issues. Hopefully we'll get it all figured out tomorrow. Please keep Tucker in your prayers!

Quick Medical Update

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

Nuts and Bolts Update

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

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.

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.

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.