The Last Few Days

Sorry I have not gotten around to posting the specific medical details....once we got home from Houston we resumed our usual business!! I have to remind myself to breathe some days, I swear we are so busy. My two cousins Morgan and Grace are staying at my grandparents' house this week, so we have taking every chance to see them. The other day we all watched Billy the Exterminator (on TV) try to catch a raccoon....well that's something I never thought I would watch! We also ate with the Townsends Wednesday night for Justin's birthday (he is 25....we are all getting so old!!). Yesterday I had two visits with "old" friends. I met my friend Meredith in college, and we have stayed in touch ever since. Talking to her is like getting a breath of fresh air...she is funny and so blunt...she has been teaching in Memphis public schools for 4 years, so she always has some interesting stories to share! Then I ate dinner with three friends....Lacy, Melissa, and Lauren....it is so weird, I have to say! We all were best friends in middle school, then lost touch over various times in our lives, and now we all have at least one child, all around the same age, and we all needed a night out. It felt so natural to change topics, bringing up Tucker and different facets of his diagnosis, right along with every other topic under the sun. Tucker's issues and delays are often the "elephant in the room." People don't know how to approach the subject until I do, and I often don't or can't approach it because I don't want to kill the conversation or cry at the dinner table.....so last night was perfect for me in so many ways....we even made jokes about Tucker, because, well, he is pretty funny!! On Wednesday Tucker's new teacher Mrs. Amy emailed me, saying that it was okay for us to drop by the new classroom any afternoon this week. Well Wednesday was the only good day for us, so we went over. Tucker was SO excited to go to "big school." He walked in like he had been there for years....of course holding his Daddy's hand gives him confidence:) The teacher let him explore everything in the classroom while Chris and I talked about Tucker and his new diagnosis, along with his "old" problems, like eating and potty training, as well as his complete lack of an attention span. I have to say, Mrs. Amy already knew everything we told her! Mrs. Mary must have given her some good notes on Tucker! My cousin Amanda teaches at the school, and she had even stopped by and told her about the mito diagnosis, although I explained it in more detail. It really won't affect the way Mrs. Amy teaches Tucker, but I do want her to watch for any symptoms of overtiredness. I also have to file some paperwork with the school nurse, but that's about it unless his symptoms show up this year....praying that they don't!! Tucker spoke several three word sentences to Mrs. Amy, but she didn't understand any of them!! We had to translate, but I figure after a few weeks she will understand him, or maybe he will start talking more clearly! I love the way the class will be set up, because there are supposed to be 6 kids with special needs, and 6 typical kids....they structure the day like a "typical" preschool, and take lots of time and extra effort with the special needs kids. So I think this will really push Tucker, which I love. Also we hope his friend Wes gets to be in his class, because Tucker likes to follow Wes around and do what he does....except eat!! Today we are getting ready to go back to Houston. I mentioned in my last blog that the lab had a mess-up, so we are bringing Tucker back to give more blood....fun fun! I wanted to get all the details of the last few days out, because they are all important. But as for the emotions of the last few days....they have been hard to handle. One of the hardest things I heard from the doctor was that Tucker is going to get worse, and we don't know how. The other hard thing she said was that most of his problems can not be explained by mito, but by his prematurity....such as his sensory issues and refusal to eat. For those who don't know, since I may act like it doesn't bother me, these feeding issues are my true nemesis!! Eating factors into almost every routine and every part of the day, so when your kid doesn't like to eat, it affects every part of your life. I was SO hoping that his feeding issues were a "mito" thing, that way I could at least have something to blame! That might sound horrible, but Tucker has had such great therapists and feeding plans for years, with way too slow progress.... So to hear that so much of what Tucker has been through has been due to prematurity, over 4 years later....and now we have so much ahead of us due to mito....it really makes me want to scream!!! Like "this is not fair!!!! we got hit from the beginning, got a little better, only to be hit with all of the neurologic issues?" With prematurity, as bad as it was, we always had the hope that each day we were moving in a positive direction...every day his lungs got bigger and stronger....every day we got closer to getting the trach out.....we have no experience going the other way... Today I am just thankful for our support system, there are so many people praying for us and Tucker, and that just has to be enough for us right now.

Yesterday...Aside from the Appointment

So yesterday was bad...we are all agreed on that.

But the weird thing about us....we actually had two very important visit to make in Houston before we left. We know two kiddos in the hospital there, one 3 year old boy Samuel, and one year-old baby girl Gaby. So we decided to still make both visits, and I am so glad we did.

I found this quote years ago, and I know am mutilating it, but here goes: "experiencing suffering is like learning a foreign language...it allows you the opportunity to talk to people you otherwise would have no access to, and to discuss your lives in a common language."

So that is what yesterday afternoon did for me, and my mom, too....as for Chris...well he was in his own world, poor Daddy, but Tucker sure did enjoy lots of hugs from him.

Samuel was born at 33 weeks gestation (I think I'm right about that) and has had many medical problems since then. He was diagnosed with mito in January 2009 while he was literally fighting for his life on ECMO-they gave him a 10% survival rate at that point. I knew his mom through the March of Dimes; although obviously Samuel's medical issues were not all related to prematurity, at that time that is all I thought I shared in common with her.

Tucker and Samuel's mito affects them in completely different ways, which shows how very hard it is to compare any two mito kids.

But still, Missy has been an absolute lifesaver to me over the past few months.

Some direct quotes from her last night:

"All forms of mitochondrial disease are a 'death sentence'. Some forms outlive others, but there is no hard and fast rule. Some kids with a mito complex disease will live to be 40 and others won't turn 1. Even in the same family, there are no clear cut paths. It depends on what 'systems' are affected. So, yes, it may end his life earlier than we would like, BUT, it may not be until he is 75 years old with grandkids. Plus, they are coming up with treatments right now and in 10 years, depletion (what Tucker has) may have a cure. That's why mito sucks, you get to live life without a percentage to hope to beat and always waiting for the other shoe to drop that delivers devastating news."

"But with time, you will see that you are all still living and Tucker has a life to live and a story to tell. The grief cycle never ends though....you keep spinning circles. You think you have a handle on things only to fall apart again. You have to remind yourself that you have one of the best doctors in the world fighting for him and he 'fits' somewhere. For me, that restores some of the hope that is lost in my kids diagnosis."

So wow, you can see why seeing her and talking to her really helped me!!

We went up to Samuel's hospital room, and Tucker immediately freaked out:( He refused to go in, even though we told him we were only visiting, not going to put him in the bed!! Chris stood in the hall with him until he was ready to come in with us. Samuel was still asleep from anesthesia (he had a procedure yesterday), but when Tucker started screaming he woke up! Finally we coaxed him inside with the promise that he could play with any of Samuel's toys:) He was much more interested in all of Samuel's medical paraphenalia, though, in true Tucker style.

Once he got really comfortable, he went and closed the door to the room....which is Tucker's way of saying "okay, I like this, let's stay awhile." So we were trapped, haha! He climbed up on the bed next to Samuel, and patted his head, and said "night night baby." I told him that Samuel wanted to wake up, and that Samuel is NOT a baby, haha, he is probably bigger than Tucker! So then Tucker climbed down and inspected the toys. He chose a Buzz Lightyear notebook, he is really into notebooks and paper lately.

After our visit Missy directed us down the road to the other children's hospital to visit Gaby. We rode the metro train to get there, which of course Tucker loved! It was a super short trip, though, because it was only one stop away.

We got out at that stop and Mom and I went into visit Gaby. Tucker was too young to visit her, so Chris took him for a walk for about 20 minutes. We were all exhausted so we agreed to keep the visit short. We met Gaby and her parents last fall. Gaby was born in June 2009 at 24 weeks gestation, and she was at Woman's Hospital, the same NICU as Tucker. We met her parents to discuss Gaby's getting a trach. Her parents wanted to see an actual trach, and see all that came with it, so of course we obliged. We would have loved to have this opportunity ourselves 4 years ago....there were several moms that I talked to lots over the internet, but seeing a trach kiddo in person would have been great. So anyways, we talked to them for a long time last fall, and about a month later Gaby got her trach. Her mom became a trach pro very quickly, and got used to everything as well as she could. But in April 2010, Gaby got transferred to Houston because her lungs were so bad that they said she needed a transplant. She was way too small for that, though, so they waited for months. By the time she was big enough, her lungs had gotten strong enough to not need the transplant.

So I hadn't seen this mom since last fall, and I knew she had been in Houston for months with no one to help her (her husband went there every weekend, but of course he has to work during the week). It was their last day in Houston, because today they got an air flight back to Baton Rouge, they will be at Our Lady of the Lake for a few days or weeks, then Gaby will finally get to go home!! :):) So it was so nice to get to see Gaby, complete with trach and vent, and of course it was nice for Jasmine (her mom) to see Tucker jabbering away and running around! Jasmine even had a bunch of lunch coupons, so she treated us to a cafeteria lunch:) She said she rarely leaves her daughter's side, so it was nice for her to get "away" for a while.

This family has quite a story....I hope she starts a blog if she hasn't yet....there was actually a point where they unhooked Gaby and told her parents to say their good byes....only to have her fight to wake back up after much time had passed....and her mom said "once she died and came back, she was a totally different baby...much happier and more of a fighter." I tell you, no matter how many of these stories I hear, they always amaze me.

Talking to Jasmine also was like a wake-up call of how lucky we are. We really did have some of the best trach care available, I think. Both Woman's Hospital and OLOL treated us so well and took our every concern very seriously...Tucker never had an infection in either of these places, which is pretty much unheard of for a trach kiddo.

So we finally had to say goodbye to Jasmine, after making her promise to call me with any questions about OLOL, (my cousin is the charge nurse in the PICU there, I told her to let them all know that!! haha) home nursing, or anything else. We hopped back on the train for a too short ride, then headed home in the storming rain.....allowing yesterday's news to sink in.

I will very likely update tonight with the medical explanation of Tucker's mitochondrial disorder....just so everyone can print it out as a reference, myself included. I will also touch on the silver linings I found yesterday, which actually are many.

This morning I got a call from the RN at Dr K's clinic. She told me they didn't get enough bloodwork from Tucker yesterday. They only took 5 vials, but they forgot 5 more, along with the orders!!! So we have to go back ASAP, which will likely be Friday with Mrs. Mia and Mr. Ricky.

The "funny" thing...yesterday my mom and Missy sat outside and waited while we got Tucker's blood drawn....Mom remarked that it was way too quick, did they make a mistake?? I said "no, the blood draw lady was just very good."

Ugh......when Mom says things like that, she is ALMOST ALWAYS right!! Why did that remark not click in my head??? So we have to go back.....no ifs, ands, or buts....because the 5 things they did not test for are of course the most important tests that cannot be put off.

So, hey, at least I will see Missy and Samuel again, (and maybe even her husband Ben and daughter Lauren) and maybe it won't be storming and Tucker will be able to play in the huge Hermann Park and ride the little train again:)

"We wait for peace, to no avail; for a time of healing, but terror comes instead." Jeremiah 14:19

From the title, maybe you can guess how our appointment went today. I was hoping against hope that Tucker did not have Mitochondrial disorder. After waiting for over an hour to see the doctor, she walked in and got Tucker his very own Mito Mike...a turtle they give to kids with Mitochondrial Disorder. Its shirt says "slow and steady wins the race", which if any of you know my mother, that comes out of her mouth every 3rd sentence. So anyways.... Tucker's lumbar puncture came back normal, which is great news in and of itself, but a lumbar puncture doesn't test for mito-it tests for other things, and can indicate the severity of mito. The muscle biopsy is what they look at for mito. So it is about a 30 minute conversation (which I will reproduce here when I'm up to it, graphics included or your head will spin), but the basic point is Tucker has mitochondrial disorder. The mitochondrioa throughout his body do not produce enough energy to make his body run properly, and in Tucker's case it manifests in neurologic symptoms (developmental delay, speech problems, autistic features, microcephaly). Tucker's body produces double the amount of mitochondria it needs to get the same amount of work done. Over time, a normal person's mitochondria copies itself to other cells so that the body can grow and live as old cells die. Well as Tucker's mito copies itself, there is some kind of mistake going on. Theoretically, he was born with normal mito in his body, but over time, the mito gets worse and worse as the copying mistake repeats itself. This is called a Mitochondrial Depletion syndrome. There are many of these syndromes, so the Dr took more blood and urine today to try to isolate the actual gene so that she can give us a more acurate prognosis. Bottom line...Tucker has Mito, and it will get worse as time goes on. Some mito patients die before their first birthday, many die at a very old age....the problem as a parent is the "wait and see" game, because you never know which organ will be affected next or how severely. The Dr is pretty certain that Tucker's lung issues were caused only by prematurity and not mito, because if it was mito then his lungs wouldn't have gotten better. All mito patients are monitored closely for problems with their heart, liver, and kidneys because these are typically problem areas. We have been blessed with the fact that all of these seem fine on Tucker...it is just his neurologic symptoms that are very concerning. Bad part-it could all change at any time. No peace of mind on the way. There is also a 25% chance that this could occur in future children...just throwing that out there, as that of course is a big concern of ours. I will update much more in detail in the near future. But right now Chris and my heads are still spinning...I have to get it out there tonight, but it is not nearly as detailed as it needs to be, and I'm sure you will all have questions that I left unanswered. So many people have emailed, texted, called, and facebooked us. Thank you all so much for caring about our family! We will need that support even more in the future, trust me.

A Little More Fun, and a trip to Houston

I am posting twice in two days, crazy I know!

Yesterday was a little rough....Chris was pretty sore, but I think he feels even worse today. He had to go to work for a half-day, though, I hope it's not too bad. Chris is coming home at lunchtime, we are going to finish packing, then Chris, Mom, Tucker, and I are leaving for Texas. We are spending the night in a hotel about an hour outside of Houston, then tomorrow we will leave early to get to Tucker's 830 am appointment with the Mito specialist. Some people have asked me "what are you hoping to find out?" or "what is the best/worst case scenario for Tuesday?" Hmmmm....I have no idea! I think I have focused on the party, and the happiness surrounding that, and now we are switching gears back to reality....back to the future and the diagnosis, or non-diagnosis, if that makes any sense.

As Mom told me last week, and Chris told me last night..."Whatever is going on with Tucker has always been going on...we will just have a name for it now." "Whatever happens on Tuesday...Tucker is still our little boy, and our love for him is still as strong as ever."

So, we will see what happens on Tuesday, we will deal with it, and I will update about it! We hope to at least get some news, though...we have been living with the "no news is okay" for a long time....maybe we'll have a change in that situation.

Yesterday was supposed to be a restful recovery day...well it was for the most part.

I had to ride to WalMart for a few necessities for the trip, and Chris had to do a little more clean-up from the party, but we mainly sat around all day.

Around 3, my sister Sarah called to invite us to go swimming. Our neighbors and cousins are out of town for the week, so they told my sisters they could go swimming in their pool. Brad got a new crossbow, so he wanted Chris to come shoot with him while we all swam. Well, all of a sudden the tiredness and soreness went away!! Haha, nothing would keep Chris from shooting his bow, let alone a new one.

So I packed all of the swimming paraphenalia, fresh out of the dryer from yesterday, and we headed over. Sarah, Gina, Tyler, Susan, Molli, Tucker, and I ended up swimming, and Chris and Brad joined us later.

I told Tucker we were going swimming, so he had to get his swimsuit on. He started yelling "Fim" and "poo" which I hope means pool, haha!

He got into the water and acted like he had been swimming his whole life! The pool had a large shallow section where both he and Molli could walk around, and he floated around on his floaties in the deep end. His head went underwater several times, and he came up laughing each time. Gina played a game with him, where he would get on a raft, and she would count to 3, then dump him off of the raft. He would splash down and then float right back up, and scream "again" or "get on". Molli tried it once, but she didn't care for it! When Tucker had his floaties off, he clung to us at first, then ventured out more and more as time went on. He could reach in about half the pool, so once he realized that he walked all over and cried to have his floaties off. He tried the whole "in the pool, out of the pool, in the pool, etc." game, but I told him he had to stay in the whole time, because I wasn't chasing him around. Chris and Brad came in and threw him around, as well as helping him to "jump" from the side (really just falling).

This is Molli showing us how she can swim underwater! She did this about 100 times:)

Some dark clouds were out, and when we thought the lightning was going to start, we all got out. Molli threw a fit, but we promised her we would come back later. We went back to Mom's for awhile, then Molli was really angry when she had to go home. Chris offered to help Susan carry her swimming stuff and Molli to the car, but she said she had it under control. A few minutes later, we saw Susan chasing Molli down the driveway! Haha, she really didn't want to leave!

Tucker went to bed around 9 last night, like usual, but it was so hard to get him up and ready today. He slept the whole way to preschool. I think he will sleep for most of the drive today, which is good...he needs to rest. If we get to the hotel early enough tonight, we may take him swimming in the hotel pool. Past experience tells us that Tucker goes stir crazy in a hotel room, so that would be a good distraction. Tomorrow we have our appointment, then we plan to take Tucker on the train ride in the park a few dozen times (he LOVED it last time), then either meet my friend Missy for lunch or bring some lunch to her. Her little boy Samuel has mito, and he is having a tough time right now in the hospital. It will be nice to see her and give her a hug in person, although it stinks that the kids won't be able to play together:( Please pray for them as well as us!

Naked Neck Party

Wow, yesterday was Tucker's Naked Neck Party, and it was amazing!! This will be a long post...I am trying to write down as much as possible so I don't forget:)

I don't have many pics, I only took a few with my phone. We hired a professional photographer to take pictures of the party, so I will get the disc from her in a few weeks and post them. I am so glad we splurged on that decision, because I wouldn't have had any time to take any pictures, and it was such a great day! I am so glad that we will have the memories captured on film:)

Our family loves to get together, and even when we just hang out it's kind of like a party. At the end of the school year, Tucker's teachers threw a thank you lunch for the parents. When the teachers set out the chips and cokes, Tucker went around saying "party party". Mrs. Mary said he must go to a lot of parties....well he does!

So of course getting his trach out was a big reason to celebrate! We always said we would have a big bash when his trach came out, and we would get a waterslide since he could finally be on one. Well his trach came out in November...not exactly waterslide weather! So then the stoma didn't even close until February, then in April he got his tonsils and adenoids removed....and the ENT warned us that if his own trachea did not get stronger there was a chance his trach would have to come back:( Talk about a major freak-out on that day! But now, 8 months after the trach came out, we can finally take a deep breath (pun intended) and celebrate!

We rented a 17 foot waterslide for the day. We were supposed to have it from noon until 8 pm, but we ended up getting from 8 am-9pm....and we definitely got our use out of it!! It was so nice because Chris, Tucker, and I had it all to ourselves for about an hour. So we took it slow at first, letting Tucker ride with us, then he slid on his own. There was a wading pool at the bottom, so we also just splashed around and played with the water hose. Then Chris's brother Andrew and his friend Clint got on the slide with Chris, and Tucker and I took a break. They went crazy, racing down, and going headfirst. I blew up a floaty boat for them to ride down the slide. Chris had wanted to bring it, but I thought it was way too big to fit down the slide. Chris had seen the slide in person, and he promised it would fit. Wow! They all loved it!! At one point later in the day, 4 kids were on the boat at once.

Then around lunchtime my good friend Lauren and her little boy Wes came over. Wes and Tucker are the same age (Wes is almost 4), and they have always played very well together. Wes has a pool at his house, so he is much more used to water than Tucker! Lauren is expecting a baby in September, so the slide was offlimits for her. Chris and I took turns bringing the boys up and down the slide, and then they just splashed for the longest time in the little pool. They even took turns jumping off of the side into the pool. Well, Wes jumped, Tucker mainly fell! But they both loved it.

After lunch Susan brought Molli, Morgan, and Grace over (my cousins), and soon after that Meagan brought Aliyah over (my niece). These girls are scared of NOTHING!! so I knew they would love the slide. They basically mobbed the slide, running up and down over and over. Molli is only 3 years old, but she went down the slide with no help, no floaties...faster than anyone!

Two of my favorite quotes of the day:

Morgan (she's 10 years old): "Chris, did you get a turn yet?"

Chris: "Yeah, I've been on this all day."

Morgan: "Lucky-y-y-y!!!"

Morgan: "Why don't we do this every day?"

Then the teenagers showed up....that would be my sister Gina (15 years old), my brother Dylan (17 years old) and my cousin Tyler (18 years old). So they had a blast, riding on the boat, diving headfirst, and helping the little ones do crazy stunts. At one point Tyler and Morgan rode the boat together, and went so fast that they flew out of the pool and onto the grass!

Another quote...from Wes....who really enjoyed the quiet time on the slide....

"Mom, I'm getting out of here, I don't like sliding with the crazy people!"

Poor kid, the steps to get up the slide were slippery, so at one point Gina fell on top of him!

At another point, Morgan, Aliyah, and I had this conversation:

Morgan: "so what is this party for anyways? Tucker's birthday already passed."

Me: "It's to celebrate his trach coming out, because that's very exciting."

Aliyah: "Oh right! Like his naked neck, I saw that picture of him" (I sent out invitations with pics of him on it.)

Aliyah: "Did you know I have a naked neck, too?"

Then she looked up and pointed to her neck so I could see!!

My friend Lacy showed up with Josh a little later, and then Christina brought Brycen and Slade (Chris's cousins). Brycen and Josh joined the kids, but Slade is way too little (only 6 months old).

We had the party at Chris's parents' house, and pretty much everything was taken care of ahead of time so that we could enjoy the day. Mr. Ricky prepared the hot dogs and set out the tables for us...by the end of the day we were calling him Betty Crocker since he was such a good cook and party host!

By the time the actual party started, there were about 15 kids....Tucker, Morgan, Grace, Aliyah, Brycen, Molli, Peyton, Cole, Josh, Michael, Samuel, Lily, Julia, Daniel, Sophie....I hope I didn't forget any! Wes had to leave early because they had another party, but he had hours of fun first:)

Tucker's teacher Mrs. Mary came, and she gave him a train set...he loved it, and he sat with her for a few minutes, but he ran back to the slide as soon as he could! All of Tucker's aunts and uncles came, all of his grandparents, and all of my grandparents:) It was such a long day, but every bit of it was fun! Right around 6 (the party was from 5-7), the slide fell down, with all the kids on it! We called the company, and they came out right away to replace a piece that was broken. By that point, though, many of the kids had been there awhile, so the parents got them dressed and ready to leave. Right when it got fixed my friend Kristin arrived with Kamryn and Kinley. They are the cutest little girls, and she had them in matching swimsuits:) By this point only about 4 kids were there, so the girls got to slide over and over. Kinley rode with me a few times, and even Chris....these girls aren't scaredy cats either, luckily!

We got the kids off of the slide and dressed (by this point Tucker had changed clothes about 4 times. He HATES being wet, so I had to change him into dry clothes as soon as he got out of the slide each time). I told Tucker that was it for him, since we were going to let the big people have a turn. While I was helping put Kamryn in her car seat, my mom came out to me. She said Tucker was freaking out, watching the men slide and act crazy, could he put his swimsuit back on and ride with them?

I said "yes, but we are out of swim diapers...just let him wear his swimsuit." Well Tucker was waiting for that, apparently, because he started stripping immediately!!

The guys did NOT hold back...they raced up the steps, trying to push eachother down...they wrestled at the top of the slide, with the winner being the last one standing....they slid down head first....all kinds of craziness. These are 20-something-year old guys, so it was nuts. Jackie and I joined in, as well as Tucker, Brycen, Samuel, and Lily. Tucker's favorite time was when Justin was carrying him up the steps, he slipped and fell, and took down Andrew and Clint with them. Tucker laughed hysterically!! Samuel said "don't you know Tucker should be crying?? That should freak him out!" I told him, "I know! Tucker loves crazy falling and action, that's part of what makes him special."

I finally had enough, and told Tucker that was his last turn. I took him in and changed him and fed him. The guys stayed out another hour, and I'm sure it just got worse!

Chris was on the slide pretty much nonstop all day. He rode with kids, carried kids up the slide, sometimes two at a time!, and even let kids ride on his back down the slide. He is definitely feeling it today! I don't know if he will up off of the recliner at all, hopefully he can make it to work tomorrow:)

One more quote to sum up the day....Once Meagan finally got Aliyah off the slide, they were getting ready to leave, and she asked "so when are we coming back to do this again?"

Haha, we will do it again when Tucker gets his feeding button out! I promise;)

No Mom Allowed! and other Craziness

The bond that Chris and Tucker share has always amazed me. They have always "hung out" together, watching TV and rocking. Tucker was Chris's perfect companion for so long, because they could watch hunting shows or Spiderman movies...Tucker didn't care as long as his daddy was holding him! As Tucker got older, he craved movement (he still does!) and Chris loves tossing Tucker around, letting him ride on his back like a horse, and wrestling and tickling him. Tucker says "fight", then he lays on the ground! That is how he fights, he just surrenders and waits for Chris to "beat him up." It is terrible, I hope he never has to get in a real fight, he will be in trouble. Well this is all cute and good, but lately Tucker has decided Mommy is not allowed in on the fun! Maybe I talk too much (that is what Chris would say!!). Tucker takes Chris's hand, and they go to the toy room, outside to the truck, or into his comforter tents that Chris builds him, and tells me, clear as day "get out!". I thought he was kidding at first, but he says it over and over until I leave the room. Several times he has closed the door behind me, just to make his point clear! I thought after a few minutes he would miss me, but no, I was wrong. Maybe it's because I do all the boring Mommy stuff, like take him to therapy, feed him, and bathe him. Chris does a lot of this care, too, but even I have to admit he is more fun:) This new anti-Mom sentiment is just one of the ways Tucker is showing his independence lately. He does some funny things, but most of the time I think it's just at home. Lately I feel like I am telling Tucker constantly: "you are not the boss" or "stop being so bossy!". Today his teacher told me, "wow, he sure has become bossy lately!". He just has no problem telling us what he wants, and how he wants it! Even if that hurts your feelings:( So we are working on being nice, the poor kid really just started talking a few months ago, and now we are already making him use manners. We figure that if he screams "get out" or "light on" at someone, the least he can do is say "please" along with it. Right now he just says the same thing louder and louder until he gets it. He really likes Barney right now, so he says "Bonny" when he wants to watch it. If I tell him "no" or "not now" he just says "Bonny" louder and and louder! I have to take the tape out of the VCR (yes we have a VCR, haha, and tons of old VHS tapes, that has saved us a lot of money!) so that he knows I am serious. If I don't take the tape out, he pushes it in and presses the buttons, or plays with the remote, trying to make Barney come on the TV. Because how dare I get in the way of anything he sets his mind to?? Tucker has been doing some other funny things lately, like taking off his pants at random times. So apparently he is in the naked stage, which I guess most kids go through around age 2?? We noticed it about 2 weeks ago, when he took off his shorts at my mom's, and then the next day at our friends' house when we were over for dinner. Yesterday we came home, and I told him "we are home, you can take off your shoes." He started pulling off his shirt, had a hard time with that, then just pulled off his shorts! His teacher mentioned that last week, she asked "Mrs. Townsend, have you noticed Tucker just randomly takes off his shorts?" I laughed so hard! I understand walking around with no shorts at home, but at school that is a no-no! Maw Maw Rose sent Tucker some books, so I was looking at them today. Gina had read one about a pig, she said it was pretty scary. I looked at it, and each page had pop-ups, which I have to admit, were a little scary! The pig had a long nose, and it really didn't look like a pig at all. So I asked Tucker "what's that?" thinking he would have no idea...he says "gig," so I asked "what does a pig say?" to which he replied "onk, onk." Gina and I cracked up! Then I turned the page, and there was a Toucan bird. I said, "look it's a bird, what does the bird say?" He looked at the page, thought about it, and said "teet, teet." Gina and I were so excited, and I hugged him a little too hard! Geez, and I wonder why he has a "no mom allowed" policy, Chris doesn't ask him silly questions and then squeeze him too tight when he answers correctly:)

My Fellow Passengers

For those of you who have not read the story, "Welcome to Holland", read it here: www.our-kids.org/Archives/Holland.html I read that story soon after Tucker was born, and I have been coming back to it more and more often lately. It really does describe how it feels to be Tucker's mom on most days. I am not going to focus on that today; right now I want to focus on the fact that I did not make this trip alone. In some ways, anyone who lands in Holland lands there alone....it is hard to not feel lonely in Holland even in a room full of people, even when your husband and family are there for you....it still feels lonely. I have been reflecting on the past a lot lately, both the good and bad. One thing that strikes me is how much our whole family has suffered, not just the 3 of us, but our extended family as well. There have been some very happy times since Tucker's birth, but our whole family lost the dream of a healthy baby right along with us. I just want to acknowledge the loss that so many others have felt, not just mine and Chris's...but the loss of our parents and siblings. Tucker is the first grandchild on both sides, and the news that we were pregnant brought great joy to both families. I remember when I was about 23 weeks pregnant, Mrs. Mia and Mr. Ricky (or Rickay as we call him when he decorates, haha) brought Chris and me to Babies R Us to pick out Tucker's baby furniture. That was such a happy day, looking at all the stuff we would buy for Tucker, knowing that he was on the way! (Once Chris put the crib together, it sat empty for 8 months....we often feared that he would never get to use it.) When my mom found out we were having a boy, she brought home about 15 outfits, including one preemie outfit...which we were sure he would be too big to wear! The Townsend babies are usually born huge, so my mom joked that I would be too wimpy to carry around my own baby:) My Mom also went to a craft fair and came home with Tucker's first booksack, which had trains and his name embroidered on it. We were all so excited! Chris's parents and my parents raised (or are still raising, haha) a total of 10 children, so we knew they were ready with the advice...colic, feeding, potty training, how to throw a baseball or shoot a rifle...they knew it all! I know they were nervous for us, parenting is hard, after all. But they were excited to get to love a new baby....and maybe happy that they could send it home with us when he was fussy! My co-workers joked that Tucker was going to be the most spoiled and loved baby ever born, and that the nurses at the hospital wouldn't know what to do with so many relatives in the delivery area:) When I was 26 weeks, 4 days pregnant, these dreams came crashing down. I was admitted to the hospital due to dizziness and very high blood pressure...the doctors told me I wasn't leaving until the baby was born. We all though that was insane, didn't they know my baby was not due for over 13 weeks?? At exactly 27 weeks the doctors delivered Tucker by c-section. The waiting room was definitely packed...but the crowd did not greet Chris and me with a newborn...they waited patiently to each have their turn with Chris to see Tucker in the NICU. I slept for almost 48 hours, so almost everyone had seen Tucker before I ever did. They all tried to look cheerful, but I could see the shock on their faces when they visited me in my room. My cousin Morgan was born at 32 weeks in 2000, so I vaguely remembered the NICU. I remembered that she had a nametag on her isolette, it was an Easter Egg. So I told my sister Meagan (Tucker's Nanny) that I wondered what Tucker's name tag would be, maybe a flower since it was May. That must have sounded bizarre!! When they all came in to tell me how he was, I didn't want to hear it, nor did I want to see his pictures. Meagan said, "his nametag is on a fish," to which I replied, "oh that's perfect!" and went to sleep. Our families really came through for us over the last 4 years....anything the doctors or nurses mentioned that he might need-well it was there in a second. Tucker had more blankets than he could possibly ever use (mostly thanks to Mrs. Lynae!), micropreemie clothes my Mom ordered online so I could feel like Tucker was a "real" baby (which was hard to believe), and toys and so many other things to keep us going. Chris and I waited 7 weeks to hold Tucker for the first time, and everyone else waited much longer. Instead of holding our son on the day he was born, his grandparents, aunts, and uncles literally waited months. His grandparents usually were not allowed to hold him unless we were present. After a particularly hard night, and an ugly phone call from me, the charge nurse agreed to always let Tucker's grandparents hold him when they were there. I had to make a large sign that read "Tucker LOVES his grandparents to hold him, please encourage them to do so." Talk about landing in Holland, you would only need a sign like that in Holland! On the day we finally came home from the hospital, my mom and Mrs. Mia had gotten us everything we needed...a double stroller (for Tucker and his vent), all of the organizing supplies the DME company said we needed, my grandparents had got us a wooden rocking chair, and they even had a balloon bouquet in the driveway. Over the last 4 years our parents (and other family members) have spent hours (and hundreds of dollars) traveling to see Tucker in several hospitals, and taking him to doctors appointments and therapy appointments. They still get him anything the therapists suggest. None of this has been easy on them....they have never been able to just go to a toystore and pick out something for Tucker, knowing that he preffered chip bags and medical equipment to anything at Toys R Us....they have never been able to just drop by to visit Tucker, or to even pick up Tucker to take him to their house, as Tucker has always had an overloaded schedule of nursing and therapy visits that they are not allowed to interrupt. And as for the advice they all had ready to dispense....oh how I wish we could have used more of it. Instead of asking my mom for advice on how to care for a newborn, I was instructing her on trach care...instead of bathing Tucker together for the first time at home, Mrs. Mia needed the help of his nurse to bathe him in the hospital for the first time (when he was about 4 months old). Mom attended vent and trach trainings with me, calming me down when I told her I just couldn't do it. All 4 grandparents attended CPR class before Tucker came home....I doubt that is something they thought would be required before getting to see their grandson at home! I have read and been told that grandparents (and other relatives) often have double the grief of the parents....they have their own grief over the problems their grandchild faces, and they also have the grief of watching their grown-up children go through all of this. As a mom or dad, you want to try to make things "all better" for your child, or to make the pain and sadness go away....just as Chris and I can not do this for Tucker, our parents can not do this for us....and I am sure that must be devastating. Through all of this, Tucker's grandparents could not love him more...anytime I complain I get the standard "well he behaves so well for me" or "but he's so stinking cute, how can you be mad?". It's funny how Tucker does certain things that frustrate me and Chris, but everyone else finds them so cute! They all waited years for Tucker to start talking, and now he says "NaNa" "Poppy" "Sissy" and "Pops" fairly well, and of course "Paw Paw" for Paw Paw Ed! He even says "Nanny Bagan" to the point where you can almost understand it! He still has a hard time with Justin (he can't do the "j" or "s" too well), but we all know what he means! Tucker really loves his aunts and uncles...seeing him with them is really something:) Tucker has more love from our family and friends than any child could ever ask for....and for that I am truly thankful.

Stop Staring at Me!! :)

I can sometimes be paranoid about Tucker and his condition(s).....cue Chris's eyeroll if he even reads this! He thinks I am always too worried! But one thing I have never really worried about or even noticed is when people would stare at Tucker and all of his contraptions. I would either assume that they were staring at him because he was so cute, or maybe the denial in me just wouldn't even notice the stares. Many people asked honest questions, which I was happy to answer. I know there were a few times when we went places and his nurses would notice people staring and get angry. I either didn't notice them or laughed it off, saying they just didn't know what else to do. Now that Tucker's trach is out, it is not (very) obvious that he is different. If you try to talk to him or ask him a question, it becomes obvious. If you try to make him pay attention to you, it becomes obvious. Sometimes I think it is obvious by the way he walks and runs, he is definitely less steady than other kids his age. But....just walking around somewhere in public holding my hand, we usually get polite smiles, or maybe someone will say he has a cute shirt. So the other day I was a little concerned when people kept staring at us and staring at us. I had taken Tucker to the hospital to bring the NICU a copy of his naked neck announcement. I had not brought an updated picture of Tucker to the NICU in probably two years, and I wanted them to have the pics of him without his trach. One of his primary nurses was there, and thought he looked great. He was not too happy to be there and kept saying "home" and "car", even though we weren't going home, we had therapy next! So on the way out we took the elevator, (Tucker said evaytah, it was so cute!), and Tuck sneezed. EVERY time he sneezes, I have to check his nose to make sure snot isn't everywhere.....ahh the joys of a trach free kiddo, haha:) So this time I checked and he seemed to be snot-free. As we left the elevator, crossed the courtyard, and walked through the physician's plaza, people were staring at us. I thought it was odd, but kept walking. I stopped by the gift shop to show Tucker some stuffed animals; when I looked down he had the hugest, greenest snot all over his face! And he was just smiling away:) So Chris said that should definitely get my Mother of the Year award on lock! I told him I've done much more deserving things this year, leaving snot on his face in public is pretty mild, haha.

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We have several countdowns going now....one for the end of the summer of therapy (Tucker and I are getting pretty worn out!), one for the new school year, one for the Mito appointment, and now one for his academic testing. The Mito testing comes first on July 27th, the academic testing is scheduled for Aug 4th, the end of the summer therapies is Aug 6th, and Tucker's first day at big school is Aug 11th.

The psychologis called me this evening to say that they decided to pursure further academic testing for Tucker. Her supervisor (a well-respected PhD with years of experience) agrees with her assessment that Tucker likely has autism and MR, and they feel it would be best to do the testing and get a diagnosis now. Once that is done, they will very likely recommend putting Tucker on stimulant medication for his attention issues.

I have made my feelings and emotions about all this pretty clear in my last post. It felt so good to get it all out! It would have been so hard to have that conversation with each one of my friends and relatives just out of the blue, but something about blogging made me feel better.

One of my best friends read the post and told me that it was so refreshing to read how I really felt, to not feel like she was reading the sugar-coated version. She said it was nice to know that I do struggle and have hard days...of course I do! But I didn't realize just how hard I have been working to hide that fact....that can get pretty exhausting! So I am glad that I was honest.

Hard Week....

I started this blog a few months ago to share Tucker's story...the ins and outs, ups and downs, and all the details. Well I have been leaving out a few details lately....and that's not fair to me, our family, or my devoted readers, all 5 of you;) I have read about grief, and tried to learn as much about it as I can, and one thing I have learned is that you can grieve for a child even if the child is still alive...you can grieve for what your child could have been, might have become, but for the circumstances your child has been in....but for the disability and/or medical conditions he or she has. To just say "well he is alive with me, so that is good enough" is very unrealistic, no matter how much we thought his being alive would be all we needed or wanted. I have also learned that grief comes in waves..you go through the whole denial, shock, anger, overwhelming depression, kind of acceptance, only to start back again. Really makes me feel like I'm on some insance roller coaster, which actually I am....Right when I feel like I have my feelings together, I lose it all again. Over the past 4 years, I have seen my positive attitude fade, my hope fade, my beliefs that things work out for the best...well that's slipping away as well. I have more sadness and anger in my heart than I have ever had. The people closest to me, who deal with me almost daily, never know what kind of mood I will be in or what comment or remark may really set me off. I don't like being this person....not one bit. All of this anger and general "mean ness" comes out when I am at my lowest...and I have been there this week. Tucker has very severe attention issues, that's just a fact. I have heard this from his teachers since he was 2 years old, but of course you don't diagnose a 2 year old with severe medical needs as having ADD or ADHD. We have found that as Tucker got better medically, his attention has not really improved. If you get him to actually look at you, he can learn lots of things, but out of an hour, you might get 5 minutes of him concentrating. So I have been thinking about getting an ADD/ADHD evaluation, or at least seeing what age that should be done. When we went in for his 4 year old checkup his Pediatrician said it was a good idea to get the eval done now by the psychology team there. I didn't know if they wouldn't even treat the ADD/ADHD for him since he has so many other issues, but the dr said that we want to help Tucker in any way, so helping pay better attention is a good way to help him in everything else as well. So the psychologist called me on the phone a week later, and I laid out our concerns for Tucker. During the conversation, she mentioned the words "autism" and "mentally retarded" several times. Now, we have been down the autism road, but back then Tucker was ridiculously inward...no eye contact, no speech, lots of stims....now he is progressing, but not nearly where he should be. The funny thing is (not funny haha), the more he progresses, the more weird "ticks" come out...he develops, but his development is just so weird. So the psychologists did a screening with just Chris and me, then last week I took Tucker in for a screening. Again, all I really wanted was to know if he had ADD or ADHD, because I assumed that would affect the treatment. The psychologist said that she can spot ADD or ADHD within 5 minutes.....so what about Tucker??? She said, "Well.....he's complicated...." Cue the steam coming out of my ears...and the tears threatening to stream down my face! If I hear one more "expert" tell me my child is too complicated, or that they have no idea what to do.....I really am not sure what will happen. She said she would score all of the questionairres that Chris and I filled out, meet with the whole team, and get back with me. She also recommended that we come in for further academic testing, which I agree with. I asked her if after seeing him, did she have any other concerns, such as autism or mental retardation? She said, yes she was concerned about both.....I wanted to vomit at this point, and I have not actually lost this urge yet. I know in my head and heart that our sweet boy is so different and special, he is not just a little behind other kids, he is a whole different ballgame....but to hear profressionals say it....well that's a different story....when they say it, it could really be true. She also said that his mito testing should bring valuable information out about his case, information that could explain autistic characteristics and mental retardation. (We have been waiting for these results for 6 weeks now, we just got our appointment date of July 27th.) So I think at this point I was just stunned. I thanked her, took Tucker home, and cried my eyes out. I think in the back of my mind, I had convinced myself the mito testing would reveal nothing....which really makes no sense, because you don't subject your kid to all of this testing for no reason. I just feel like if the mito testing comes back that he has any type of mitochondrial disorder or a metabolic problem, then again...it is real....it is not just a few quirks that we have noticed in our son...it is real profressionals telling us what is going on is not right and not normal. I think really I am just very tired. I am tired of dealing with a lot of this, and I am very tired of waiting. We began the genetic/metabolic testing on June 1, 2009, and here we are on July 10, 2010...still waiting. We have ruled out many, many terrible illnesses and conditions, but this waiting is killing me. It really wears us all down, and Chris and I often snap at eachother for no other reason than that we are stressed out. We have also had some wonderful times this week, which I will blog about later....amazingly, as we go through all this, life goes on around us! Who knew, right? So as life goes on, we celebrate weddings, births, and birthdays, and we are truly happy for our family members, but our "monster" is always present in our house and in our minds. This week, that monster has just been a little bigger, and a little louder....I don't see it going away anytime soon:(

Feeding Time

I told Tucker it was almost time to eat. He looked up at me, then ran into the kitchen.

I found him in there like this....

I wasn't sure whether to cry, laugh, or tell him "good job!"

He got pretty frustrated when he couldn't figure out how to hook the extension to his g-button. Then the syringe came out of the extension, and he got even more upset!

His OT put "self feeding" as one of his therapy goals, I don't think this is what she had in mind....

Something Beautiful

I love music, I made up a playlist to add to this blog. The 8 songs I put on it should automatically play when people open up the blog on their computers. So if you check it at work, be sure to turn the volume off:) The song that has been running through my mind lately is Something Beautiful by Need to Breathe. I am posting it here:http://www.youtube.com/watch?v=ueP05bkWVvQ The part that really speaks to me today is "And the water is rising quick And for years I was scared of it. We can't be sure when it will subside, So I won't leave Your side, No I can't leave Your side... Hey now, this is my desire, Consume me like a fire, 'Cause I just want something beautiful" There is so much beauty in our lives, even on our hard days. I hope I convey that to others.

Weekend at the Lake

Chris, Tucker, and I spent the 4th of July weekend at Lake Concordia. It is about two hours away from our house, near the Mississippi border. My sister Sarah and her boyfriend Brad invited us, they go every year with a bunch of their friends and they thought Tucker would enjoy it.

From the pictures I am posting, you will see they were right!!!

Chris and I went back and forth about the decision to go....usually when we have the option to go somewhere, we err on the side of staying home!! Chris is definitely a homebody (that's the Townsend side in him), but he also loves outdoors activities and hanging out with Brad. Sarah promised us our own room (I wanted to make sure Tucker had a quiet place to get away from the grown-ups, and a place that I could take Tucker to in case he aggravated the grown ups!!), so we decided to go. There were 14 adults and one kid...Tucker! Kyle brought his bulldog Bo, and Christine brought her Doberman Samson, so Tucker at least had some playmates:) Tucker tried to ride Samson a few times, and he of course fed both dogs until I had to take his food away!

The three of us have spent a few nights in a hotel before, but we have not taken a "vacation" in years. We took Tucker to the beach with my whole family when he had just turned one. He just layed around (haha), and was therefore very easy to keep track of!! Both my mom and Chris's mom have warned us several times that this weekend would be more work than fun, and as my mom said "look for the small moments of fun, don't expect the whole weekend to be fun."

Well, they were not kidding!! Tucker had the most energy I have ever seen him have, and that is saying something! He barely wanted to sleep, let alone nap! Our room was upstairs, and he loved going up the stairs just to turn around and go back down. There were a lot of "no"s and "don't touch that"s!! The house was right on the lake, so he wore a life vest any time he was outside, but since he is literally fearless, we had to keep a very close eye on him!!

Nick and Kyle brought their boats, and Tucker LOVED riding on them! Here is a picture of Chris and Tucker on Nick's boat. My daddy took us boat riding all the time when we were little, but of course riding on a boat was not an option for Tucker for a long time due to his trach.

Chris and some of the guys jumped out of the boat to swim a little, and of course Tucker was right behind them!

Brad and Sarah had joked about putting Tucker on a tube, so he could go tubing behind the boat. I had objected to it of course! Daddy and Brad are the fun ones, not Mommy! But when I saw that the tube fit 4 riders, I thought it would be okay as long as Chris and I both went along. To say Tucker loved it would be an understatement:) I tired of it much sooner than he did!

We also took turns riding on Kyle's boat. Kyle and Brad do a lot of wakeboarding and kneeboarding, so they have all kinds of contraptions on this boat, including a stereo system to hook the IPod to. The guys took turns on the different boards, so of course they would have to stop every once in a while to change riders. Tucker would scream "go! go!" to Brad or whoever was driving. When they didn't listen right away, he decided to take matters into his own hands!

We all thought it was funny until we realized Tucker knew EXACTLY how to make the boat go! He tried to turn the key, then he went to move the throttle (I think it's called that) into forward motion. That's when Chris grabbed him and gave him a firm NO, while everyone else laughed at him.

On Saturday night Chris spent some time fishing off the dock. This was a slight problem, as Tucker wanted to be right with his daddy the entire weekend! So I had to be right behind both of them so that Tucker wouldn't fall or jump off the dock. I tried to take Tucker inside to play with the toys we brought...that lasted about 5 minutes:) So the two of us came back out and fed the fish lots of "Tuckerized" cheetos. Well they must have worked, because Chris caught a "big" fish!

Chris and I went to bed early, luckily Tucker fell right to sleep Saturday night! I asked Chris if he wanted to go back downstairs and hang out with everyone. He laughed at me, and then we both fell asleep too! Sunday morning Tucker woke up at 730 am, ready to go again! We told him that no one else was awake, and he had to stay inside for awhile. A few hours later he got to ride again.

This time we let Chris tube by himself so that he could go a little faster!

Tucker was a little upset at first, but then the boat took off...and he was at peace. I just love this picture!! Tucker is so happy and at peace when he is outside and in motion, and he was totally at home with the wind in his hair and the sun in his face:) He climbed on the boat like he owned the place.

After awhile it was really too hot to ride out in the sun. The guys went swimming in the shade, and of course Tucker joined them. He did not like wearing the life vest, but we kept it on him just in case. He floated around on the noodle with his Daddy and watched the brave adults swinging on the rope swing. Tucker cracked up each time someone jumped in the water. He also enjoyed floating in the Club 300, a blow up boat that Brad brought along. Brad is one of Tucker's favorite people, so he really enjoyed floating around with him.

Right before the 3 of us left, we took one last ride. Chris was pretty sunburned, so he sat this one out. Tucker enjoyed it, of course! We had a good weekend, but I am glad it is over. I need a rest, hahaha. So to add to Tucker's long wish list....a big boat, some tubes, and lakefront property:)