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!"