The Last Day:(

Tomorrow is Tucker's last day of school:( Tucker started school at age 3 due to his developmental delays, and wow! what a difference school has made for him! He started last August in a small class, with 3 kids and 3 adults, one of the adults being his own specific aide since Tucker had his trach. The principal, nurse, teacher, and two aides made us all feel so welcome at school, and learned all about trach care so that our son would be safe at school. I spent the first two weeks at school, because we had certain training protocol to complete before Tucker could be left at school. I think they said Tucker was the first trach kiddo the parish had in about 9 years, so the whole district came around to get trained on Tucker. Tuck has always been such a "model trach kid," so he was great for them to train on. I would sit in the next room, so Tucker would think I wasn't there, and listen to the teachers with their class. It was at times hilarious, and at times frustrating, as the teachers required certain things of Tucker that I had never thought to try. When Mrs. Mary would come into the back room, I would give her "advice" about Tucker! She would explain that they were getting the kids used to the classroom, and that Tucker was doing great. After a few days, I felt totally great about leaving Tucker, and he loved school! He learned so many things this year, and I was always up-to-date with the units they were covering from the class newsletter. When someone would say one of the vocabulary words, Tucker's eyes would light up. Around Halloween, my mom pointed out some "jack-o-lanterns" and Tucker repeated after her and loved it. They had a great Thanksgiving dinner at school, and a fun Christmas party. After Tucker got his trach out, Mrs. Nicole was no longer in the class, so Tucker had to step it up! After Christmas break, Tucker started going to school 5 days a week instead of 3. Having the same routine every day, and having his "feet to the fire" everyday (as Mrs. Mary called it) made so many huge changes in Tucker. Admittedly, Chris and I spoil Tucker rotten. Mrs. Mary has given us many tips and rules to help carry Tucker's good classroom behavior into our home. Mrs. Mary did not let Tucker use his "Cuteness" to get out of any tasks, even though he tried! As a preemie mom, I was nervous about having Tucker in school. I knew he needed socialization and to be taught things I could never teach him:) However, many preemies can not handle the germs of so many kids all together, and I know many medically fragile kiddos who take years and many absences to get used to school. Tucker missed quite a few days this year (we had way more surgeries and specialist appointments this year than I ever would have thought!) but almost none of them were due to illness. That is a HUGE deal to me, and gives me hope that Tucker's immune system is pretty great, and therefore he will not deal with chronic absences. Two of his missed days were Thursday and Friday of last week. I was so sad that he was missing those last few days, as well as the big class Water Fun Day on Thursday. So last Wednesday Mrs. Mary and Mrs. Angie held a parents' luncheon for us to all get together one last time. We ate together and discussed summer plans, and watched the class video they put together. They made individual videos for each kid, and then one big one with all the kids (over the year, the class grew to 5 kids). Tears were flowing (of course!) as we watched the kids progress from the year set to music. I want to post it to the blog, but I haven't figured it out:( Tucker's teachers and classmates have become like family this year, it will be really hard to leave them for the last time tomorrow:( Tucker has no idea, poor kid, and he really loves going there every day. We will keep in touch, of course, once someone gets to know Tucker, they are ours for life!

Muscle Biopsy and Lumbar Puncture

My laptop officially died last week, so it has been tough to update! I am at Mom's right now, typing this update...I can't believe we are leaving for Houston tomorrow and are going to be away from computers until Saturday:( Very hard for me! We usually bring the laptop along...something crushed it...very suspicious! I am fairly positive that Tucker stepped on it... So I am up late, laughing with my mom and sister Sarah:) Trying to forget that we leave, yet again, tomorrow. It freaks me out everytime we go anywhere, or put Tucker under for any procedure, no matter how small. He will see the anesthesiologist Thursday afternoon, then go under for the Muscle Biopsy and Lumbar Puncture Friday morning. He will then stay overnight at Memorial Hermann, then hopefully we will leave Saturday morning. We will get the results 6-8 weeks later. My current problem is the waiting, as usual. We have been waiting on one thing or another since Tucker was born. So maybe once these results are in, we will have some answers. Tucker's second-to-last day of school is tomorrow:( He will miss two days while we are in Houston. I am in denial about the school year being over, May 24th will be a very sad day for our family:( Keep us in your thoughts and prayers!

A Boy and his Screw

Our marathon of doctor's appointments is almost over! So we have been relaxing a little, I have so much to update on, but I wanted to put in a fun post today. Babies and kids often have comfort objects, things they have to have with them at all times, or when they are scared. When Tucker was a baby in the NICU, he had the stuffed hands that "held" him when we couldn't be there. He had his Rainforest mobile and Rainforest landscape/music toy, and his pacifier that all soothed him. For awhile, when Tucker was 2, we went through a succession of Bears. Chris bought Tuck a little brown bear at Cabela's, and after that they were inseparable. Once the bear got way too dirty, I washed and dried it, and it came out so ugly! We called it "crispy bear," because the dryer scorched the fur. We went and bought several "extra" bears to replace it, but Tucker would only accept Crispy bear! Tucker has had some odd comfort objects in the past, including suctioning kits, diapers, and my Coach purse (really, the kid loves that purse, and only that purse!). Lately Tucker has become very interested in anything tool-related. He follows Chris around (as always!) and likes to "help" him when he does small repairs around the house. He sometimes goes into Chris's tool drawer, takes the screwdriver, and tries to open all of the battery compartments of his toys. He has not been successful, but he really tries! Chris usually comes home with pockets full of screws or other things like that, and Tucker would love looking at them. He would leave them on the ground, and later I would step on them-ouch! So I banned the little screws. Tucker walked around "srew, srew, srew" looking for his screws. You can imagine the jokes the teenagers make about Tucker and his affinity for "screws." Chris got the idea to give him a very big screw, that way I would see it and not step on it. He got out one of the big screws that used to hold the crib together. Tucker's face lit up and he screamed, "srew!!" He held onto that one for several days, which really freaked out Mrs. Mia (Chris's mom) because it was kind of pointy. So my dad gave Tucker a rather large screw that was totally safe (how odd that I am going into this much detail!), and Tucker loves it! Last Saturday we lost it, so I called Mom, asking for more "back-up" screws. She found several in the shed, so now we have a large supply. Even with the large supply, Tucker loses them quickly and then demands more. This morning he wanted to rock with his screw. I looked everywhere and could not find one...bad news....In my head, I thought, "a screw, a screw, my kingdom for a screw," then thought, SERIOUSLY?? This has gone a little too far! I offered him Mr. Potato Head as a subsitute, and low and behold, two of the large screws were rattling around inside Mr. Potato Head's body:) So I thought I would record this tidbit of our lives, to remind myself of the day-to-day craziness of raising this sweet child. I am still very proud of Tucker, because any time I say, "we can't bring the screw to...(school, therapy, climbing on the playground)" he hands it right over without question. This is a completely different child from the diaper-obsessed kiddo we started the school year with. ------------------------------------------------------------------------------------------------- I would like to ask all of our readers to please say some prayers for a few families, or just keep them in your thoughts. I am usually reluctant to share others' stories, because they are not mine to tell. However, there are two families who have really touched my heart lately, the Knights and the Wheats. Cooper Knight is a strong little boy who has had a very hard road. He recently underwent a small bowel and colon transplant in an effort to help him get off of TPN; despite early success he is now in rejection of the new organs. His mommy is a friend-of-a-friend, and I know they provide so much inspiration in the "sick kid world" (as Missy has named it so well). You can read about him at www.cotaforcooperk.com The Wheat family are also friends of friends...they are related to Jackie, our good friend. They just welcomed their first child into the world, Tristin was born at 1 pound, 8 oz, at 26 weeks. His family has a long road ahead to get him well and home with them. I know that literally hundreds of people whom we have never met have been touched by Tucker's story and have prayed for us during our darkest times. It has made a world of difference to us, and I hope prayers and love make a great difference for these two families.

Three Appointments and a Haircut

Our busy week continued with an eye doctor appointment Friday, a dentist appointment Monday, then an ENT appointment yesterday (Tuesday). We had a pretty relaxing weekend, but on Sunday we really stressed Tucker out with a haircut! Tucker was so well-behaved for the doctors, who knew the haircut would be the worst?? Tucker has always hated haircuts, so we have been letting him grow his hair longer between each one. This time, his hair looked very Justin Bieber-ish, what a cutie:) For those who don't know our family, it is full of so many girls! And right now, most of them have Justin Bieber-fever! Gina got a CD for Easter, and a poster of Justin Bieber came with it, so it's on Mom's fridge. Then last week we stayed with the Poches in Lake Charles, and they have the same poster on their fridge! Chris asked, "geez, is this guy everywhere?" So we finally decided it was too much hair! And on Sunday Aunt Alexis cut it for us. He squirmed and squealed! Uncle Andrew had to hold him down, I don't know why Chris gave him that mean job! After about 30 minutes, and a few breaks, they were done. After that he would not sit still for a picture! So I will have to get a good one and post it. So as for the doctor's appointments: Eye doctor: Tucker had mild ROP due to his prematurity, but it regressed without any treatment. He had bad strabismus (eye crossing from weak muscles) until he was 2, which is when the eye doctor fixed it with laser surgery. Anatomy-wise, his eyes are fine. The problem is that he has such a hard time looking at what he is doing! It seems like a very bad attention problem, but his teacher and therapists really think it is a vision problem. His teacher is writing his IEP this week, and every person keeps telling her, "If he would just LOOK at what he is doing!"....fill in the blanks. Even his PT at school called me today, saying that she thinks he could "graduate" from the PT program, but he does not look at what he is doing, so he seems too unsteady at times. So anyways, the eye doctor looked at Tucker for quite a while on Friday, she just watched him walk around the room. Tucker watched Mickey Mouse on Chris's phone, he watched a part of Nemo on the doctor's TV, and he played with different toys we had brought. The doctor said that his head tilting and eye squinting is very inconsistent, and if it was a vision problem it would be very consistent. Also, when it is something Tucker WANTS to look at, like Mickey, he pays great attention and looks right at it.......So, as Chris said, cross another one of Tucker's medical excuses off of the list!! Unfortunately, it may not be that simple! There is a type of therapy that's available, its vision therapy that helps the eyes to work together. This is for kids whose eyes seem totally fine, but they just can't see words and things the way they should. This is very controversial, eye doctors apparently do not believe in this therapy one bit. So we will see about that, I guess. We have been hearing about this type of therapy for a long time, but lately it just seems to be such a huge problem, so we may be starting that up soon. Dentist: Tucker has been to the dentist's office three times now. The first time was pretty bad, but the second time was fine. The dentist likes to just check his teeth and count them, and make sure nothing crazy is going on. Tucker has a high, skinny palette from being intibated so long, so we have major orthodontic work in Tuck's future, how fun! Well this time we did not get an appointment with his regular dentist, so we met one of the partners. We walked in and the hygeneist had all of the tools set out. I asked, "you are not using all of that, are you? He will freak out!" She explained to me that she was going to do a cleaning and give him fluoride. I can not overemphasize how much Tucker HATES brushing his teeth! Every morning it is a fight, when I say "time to brush your teeth" he starts gagging. He gags and fights me the whole time, and then gags for several minutes afterwards, until he gets every bit of toothpaste out of his mouth. His teacher sings a funny song at school about teeth brushing, she said Tucker loves it. I even tried singing that, and he still cries! So anyways I was pretty worried about getting a cleaning. I told Tucker the nurse was going to brush his teeth with her tools, and that he had to be a good boy and lay still. She let him play with the tools first, and feel the sensations on his fingers. When she put the brusher (I don't know what it's called!) in his mouth, he just laid there and let her polish every tooth. I was shocked. He was terrified of the sucker thing, though, so he jumped up at that point. Then she put some fluoride on a toothbrush and told him she had to brush his teeth again. He screamed "No!" at her, and I was so proud that he said "no!" He has started shaking his head for "no" lately, and he says "no no" sometimes, but this is the first time he said it so clearly:) So I smiled to myself, but told him "yes! you are doing what the nurse asks." So he sat down and let her brush his teeth with the fluoride. The dentist came in after that and looked at his teeth. He whimpered through this, probably wondering when all of these people would get their hands out of his mouth:( They had asked me if Tucker had any major changes over the last 6 months. I replied, "none that I can think of"..... The dentist looked at his throat, and she said that having his tonsils out was kind of a big deal. I failed to mention that Tuck got his tonsils and adenoids out three weeks ago, not to mention getting his trach out in the last 6 months! So now you see why Mom usually comes with us! She would have waited for me to answer the dentist's questions, then said "actually, he did have a few recent procedures....remember, Leigh?" ENT and Audiologist: On Tuesday Tucker saw the ENT for a follow-up on the tonsil and adenoid removal. She said he is looking great, and she may not have to do anything to him anymore! So that was exciting, since she has put Tuck in the hospital three times in the last 6 months. She did have to adjust his right ear tube, though, because it was trying to dig into his skin. She did that in the office with a long needle, it looked pretty scary! The nurse held Tucker's face, and I held his arms. We told him he had to be good, and then he would get a prize. He cried a little, but stayed pretty still. When she got the tube back in, he screamed pretty loud! I was kind of happy, though, because she said that part hurt, and I was glad that he actually felt and responded to the pain. He has such a high pain tolerance that he usually ignores things like that. The dr said that Tucker was one of the best behaved kids for that procedure. He got off of the exam table and said "bye." It was so cute! He did not even hug the doctor, and this is one of his favorite docs. So I guess she is not his favorite anymore, but that's okay since we will not be going back for 6 months, yay:) We went to the audiologist's office today to get Tucker some new custom ear molds so that his ears don't get wet in the tub. That was a breeze, it barely took ten minutes. Afterwards I took Tucker to Target and finally got him a prize! He got the new Mickey Mouse Clubhouse movie, Minnie's Bowtique. The 3 movies he already has are pretty worn out, they are skipping and it is kind of boring (for Chris and me) to watch the same ones over and over! Tucker also got a BIG bag of chips, what we call the "Bag of Bags". It is one of those variety pack bags, with 22 small bags of chips, Fritos being his favorite. He held onto that bag like he thought it was going to run away! So tomorrow we are going to relax! Then on Friday we have his IEP meeting, and we will meet his new teacher for next year, wish us luck!

The Mother at the Swings

I just found this story on another blog last night. I think it is very powerful....I have had many encounters with the "Mother at the Swings", and I have also been that person many times. It has taken me a long time to realize that Tucker is more like other children than he is different. And anyone who has seen him on a playground knows that he loves to swing! Thought I would share this story. SPECIAL NEEDS MAMA, WRITER, PROFESSOR, ADVOCATE AND PEDIATRIC EPILEPSY PROJECT (PEP) CO-FOUNDER VICKI FORMAN SHARES WHY HER SON LOVES TO SWING It's a Sunday afternoon. My nine-year-old daughter Josie is at home drawing cartoons with my husband and I'm swinging my six-year-old son Evan at the park. Evan laughs and giggles and with each wide arc of the swing, his smile grows ever larger. The mother next to me smiles herself and says, "Boy, he really loves that, doesn't he? I mean, kids just love to swing, don't they?" Yes, I think, kids do love to swing. But the reason my son loves to swing isn't the same reason her daughter, in the swing next to us, loves to swing. My son loves to swing because he is blind and non-verbal. Swinging gives my son the kind of stimulation other kids, those who can see and talk and run and ride a bike, get by simply being and doing. And, yes, he also loves to swing because all children love to swing. I smile back at this mother and I swing Evan higher and he laughs louder, his squeals of delight growing bigger with every push. "He really loves to go high," the mother at the swings says. "He's not afraid at all." "He's not afraid because he can't see," I say. "He has no idea how high he's swinging." "Well, he must have other ways of knowing," she says. "Because he definitely loves it." My son was born at twenty-three weeks gestation, weighing only a pound. His twin sister died four days after birth when we removed her from life support. Evan was hospitalized for six months and came home blind, with feeding difficulties, chronic lung disease and global developmental delays. Soon after that, he developed a serious seizure disorder and was on medication until his fourth birthday. He did not walk until he was five, still does not eat anything other than pureed baby food and formula from a cup, and has only a word or two—variations on "muh muh"—which he uses indiscriminately for "more" or "mama" or "open."And yes, he has a beautiful laugh and a beautiful smile which grow only louder and wider on the swings. When Evan was still in the hospital, a social worker gave us a handout, a road map for the potential reactions of friends and family members to our new status as parents of a super preemie. Potential support people came divided, according to the handouts, into the following categories: the rocks, the wanna-be-theres, and the gingerbread men. It warned us that people we might think were "rocks" could unexpectedly turn out to be "gingerbread men." Just like the story, they run, run as fast as they can from you when they hear of your baby's birth. I quickly found that the guide was right, that I was supported by only one or two rocks, and that the rest of my friends and family members had become gingerbread men. As Evan's disabilities became more obvious, after he left the hospital and in the time that followed, I found new rocks and said goodbye to the gingerbread men. And I found a new category for the characters in the social worker's handout: the mother at the swings. The mother at the swings wants to know. It's why she makes her observations, and why she pretends there is nothing different, nothing dissimilar about her child and mine. All kids love to swing. The mother at the swings would like for me to tell her what it's like, how my son is different, and how he is the same. She wants to know about the cane he uses, and the challenges of having a non-verbal child, and how I manage to understand my son and communicate. She'd like to ask, What does his future look like? And How are you with all this? She wants to know but she doesn't know how to ask. And so she tells me that all kids love to swing. It has taken me years to know what to say to the mother at the swings, and how to say it. To reveal the truth, graciously. To let her in and help her understand. To tell her that yes, all children love to swing, and my son loves to swing and the reasons are both the same and different. That it's hard to watch her daughter, with her indelible eye contact and winning smile, and not mourn for what my son can't do. That some days my grief over my son is stronger than my love. It has taken me even longer to appreciate the mother at the swings, to know that she and I have more in common than I once thought. To know that her curiosity is a mother's curiosity, one borne out of love and tenderness and a desire to understand a child, my son, one who happens to be different. That her compassion and thoughtfulness mean she will take the knowledge I share and use it to understand other mothers like myself, some of whom could be her neighbor, her cousin, her sister, her friend. And, finally, that she wants to know so that she can teach her own child, who also loves to swing, how to embrace and treasure what makes us different. And the same.