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TUCKER RAY-OUR FIGHTING TIGER

tucker'smom

March 2010

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TELLING IT LIKE IT IS

Mar 13, 2010 10:46pm (EST)

As usual, I have many thoughts floating around tonight! I will eventually get to Tucker's doctor's appointments...eventually.

Since Tucker has been born, I have been tempted on so many occasions to tell big fat lies...

Lies about his birth, his progress, my feelings...it would just make things easier. Unfortunately, I have this very bad habit of telling things exactly how they are...even when it is putting my foot in my mouth, even when it is telling people I don't even know way too much, even when I should just keep my mouth shut and keep on walking...

Like when people called Tucker's trach a "feeding tube".

Or when people who did not know me discussed their preemies who breezed through the NICU and how really it was nice to have some time to sleep without the baby at home. Yes, I have heard that more often than I care to remember.

Or now, when I am loading the grocery cart with enough baby food to feed a small baby army, planning to go home and blend it up for Tucker...Tucker will be in the cart and the checkout girl will ask "oh how old is your other baby?" And I say, "well he's my only child." Then they look at the baby food and think I'm a little crazy.

I never even realized I had this habit until one day Kristin pointed it out. I actually had been feeling very rude, like I was telling people too much, or trying to make a point of sharing too often, and Kristin said I am not mean...I just tell people exactly what I'm thinking, whatever that is..

Not that I'm socially awkward, I know how to be polite! Those of you who have met me know that.

So my tactic has mainly been to avoid the subject of Tucker when I need to. Imagine that, there are people who actually do NOT want to hear me talk about my kid nonstop...I know, that's hard to believe! For two years I was in graduate school, and I mentioned Tucker sometimes, other times I just talked about class material and other interesting topics. After all, there is more to me than just my son, right?? After I got comfortable with some of my classmates, I told them much more of Tucker's story and kept them updated on his progress.

But lately, I find that all I have to talk about is Tucker. I have been staying home with him for about 10 months now (so hard to believe it's been that long), and even when I consciously try to focus on other topics of conversation it always comes back to him! And even with acquaintances or complete strangers, his delays and issues come up after only a few questions. So when they ask, I tell them the truth....not in an emotional way, I just say things.

So this habit of mine did not help me the other night.

DH has a new work friend, and they are expecting their first baby. We all know the emotions that come with this, right? But even without the emotion, my pregnancy and "new baby" conversations never go well! We went to eat dinner with this couple and she asked about my delivery. I told her about Pre-E, and she assumed I had high blood pressure my whole pregnancy. I explained that actually my blood pressure was perfect up until about 26 weeks, then it went haywire and they had to deliver Tucker in a matter of days. Wow, that was smooth......that could have been a moment where I lied, at least a little. What pregnant woman wants to hear that???

So maybe my brutal honesty has some purpose?? I sure do make DH laugh at least.

Posted by tucker'smom | Comments: (4) | Permalink

MY "REAL" KID

Mar 11, 2010 10:46am (EST)

I have been MIA lately, so many things have been going on, and I don't have as much time for the computer as I would like.

DH finally got off from his turnaround, he worked 60 days in a row. I had NO idea how much that was going to affect me, I was such a mess! Last weekend he was home for three whole days, and my life felt like it was back to normal finally. Today is our 5th anniversary, so I guess it is good that he was absent for awhile to help me realize how much I appreciate him and love him. It is kind of hard to look back over the past 5 years, because where we are today is not at all where we thought we would be! I do love my life, but looking back at all we have been through is not always easy.

As Tucker gets older, he acts more "real." My family has jokes about real kids and perfect kids. When you hear a mom brag about her newborn who sleeps through the night, or her toddler who never has tantrums, we always say, "oh wait until he or she becomes a real kid." Some kids have the terrible twos, Tucker kind of waited until the terrible threes.

He used to leave my stuff alone, and not get into too much trouble, but that has changed!

One big difference lately is that he is not going to bed right on time at night, and I never realized how much that really helped me. A few people joke with me "Give him Bendadryl" which I would never do! But then I realize I have no room to talk at all, because for over 2 years we gave Tucker Valium every night. Along with that, he has always been tube fed. His formula literally knocked him out, 4 times a day. So he took about two naps a day, along with going to sleep at night right after his tube feeding. I always had time with DH, or time on the computer or to watch TV. I asked his doctors if that was normal, for the formula to make him sleepy, and they said it was fine.

I never agreed, but what else was I going to do? So pretty much since Tucker came home from the NICU, we got lots of sleep, so I never understood what it was like to be up all night with a baby.

Well lately, Ta Da!, I started Tucker on the blended diet. DH and I have been wanting to feed Tucker real food for a long time, but I had no idea how to do that. It never occured to me to use a blender until Kristina posted it on Share. So about a month ago I started blending food for Tucker. I looked on the Food Pyramid website, and our goal is 1400 calories per day. I will not lie, it is time consuming and sometimes very messy to tube feed Tucker with real food. But so far it is very worth it. He gets three veggies, three fruits, 4 dairy, lots of grains, 2 meats, and enough fat to keep him healthy. He eats much better than most 3 year olds now!

There are a few things that have not changed, though. I was hoping Tucker would not be as gassy with real food....but that didn't work!

A lot of times a blended diet will make tube fed kids more interested in oral eating, but that has not worked either. I think it's because Tucker never associated eating with belly pain, which we thought was possible. We are going to schedule a GI workup sometime soon, because Tucker has always been the gassiest kid ever, and there really may be something going on there. I just heard that his regular GI doc died in a car accident.

This is a man who has gotten many tube fed kids transitioned to oral foods, so I felt kind of lost. My sister said maybe he can be Tucker's guardian angel and help Tucker to eat.

There are several very good things about changing to a blended diet.
1. Tucker does not fall asleep after every feeding! This is great, because we literally used to not want to feed him. We would schedule activities around feeding times, because we did not want to make him too tired by feeding him. On two occasions I was sick or too tired to blend his food in advance, so I gave him formula. Both times his teacher complained about how tired he was in school, so I haven't given him formula since then.
2. Tucker does not resist tube feedings anymore. I think he used to resist them because he knew it would make him go to sleep, and he always likes to be active.
3. Tucker has gained TWO pounds in the last 8 weeks!!! He has also grown about 1 1/2". He does usually have a growth spurt around this time of year, though, if I remember correctly. Everyone has been commenting on how big he is, and how he looks so grown up.

So, the one really bad thing I have found---food can no longer be used to make Tucker go to sleep! How horrible that we actually got used to depending on that. I don't think we really knew that, we were just so used to him going to sleep right after eating. Now we have to fight him to go to bed, which is never fun. The other night, I laid with him until I thought he was asleep. Then I went into my room (the "big bed" as Tucker calls it) and laid next to DH. Not a minute later, we heard stomp stomp stomp, Tucker ran into our room, shut the door, and laid in between us! He even put his arms up and crossed his fingers behind his head, like "yay, slumber party time!"

My mom just laughs at me and tells me that's just one more way that Tucker is a "real" kid. He is such a mess.

I have lots more to update on, we have had some depressing doctors appointments lately. So I will get to that soon...

Posted by tucker'smom | Comments: (4) | Permalink

JUMBLED UP, SUPER LONG POST

Feb 21, 2010 06:44pm (EST)

I have several mini-posts floating around...so here goes!

Tucker was feeling much better, but now I'm not sure. He felt better by Wednesday morning, which is when I started feeling horrible

. I got a bad cold, and five days later, it is not really gone. For a few days the cold medicine was worse than the actual cold! I laid on the couch all day, with Tucker crying all day for me to get up and play with him. At least he was well enough to go to school for a few hours!

So yesterday (Saturday) Tucker seemed back sick. He was in SUCH a bad mood all day, then he took a long nap. I have been giving him pain meds, alternating Tylenol and Ibuprofen every 4 hours, and when I skip a dose to see if he's better, he is miserable....even over a week later! So I think I will take him to the pediatrician again tomorrow, just to see if he has something going on. Of course DH got home at 530 today, and he was all smiles

, wrestling around on the floor, and running around. So I never know what is going on with him!

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Tucker has been doing some Hilarious things lately!!

We have a big dog, Buck, who usually stays outside. Since it has been cold lately, he stays in his kennel in our kitchen at night. During the day his kennel is empty, and Tucker loves to play in it.

The other day he had an early bath, and I found him laying on the dog's old quilt in the cage. I was so mad! I told him to get out, then a few minutes later he was back in there, and he had locked himself in.

I sat him down to have a "talk." I explained to him that the cage is for a dog, and Tucker is a boy. Boys sleep in a bed, and dogs sleep in a cage. I asked him "who is that cage for?" and he looked at me, pointed to himself and said "Tucker."

I cracked up at him and told him "no it is not!!"

He also loves his nebulizer treatments lately. He asks for "teet ment" about 100 times a day, but he is only supposed to get 2 each day. For those two times when I give him his treatment, he holds the mask by his mouth and grins so big.
I know that some kids sometimes "fake" being sick just because they like medicine, or the attention they get from it. Tucker gets about 9 meds each day, along with two treatments, nasal spray, and an inhaler. So I had hoped he would never actually ASK for medication! But he does, all day!

Along with nebs, he is obsessed with babies lately. Anytime he sees a picture of a baby, or a real baby, he screams "baby baby" until the baby looks at him, or someone acknowledges him. Today I saw some old friends at Target, they have a 2 year old boy and a 5 month old girl. I saw the Dad and the boy, and Tucker was screaming "baby baby baby". I said, "no he is almost as old as you, that's a boy, not a baby." The Dad said "actually my baby is in the cart, too, she's in her seat in the back." So then I felt pretty silly:)

Tucker has been hanging out with Molli a lot lately, she is almost 3 years old, but she is actually my first cousin. They are both only children (Molli has two older half siblings, but for most of the time she is the Queen bee), so you can imagine how that goes. They fight constantly, even though Molli says Tucker is her best friend! Molli's daycare was closed for Mardi Gras, so GiGi watched her, and I brought Tucker over there. Basically the whole day was Molli following after Tucker and telling him "no no Tucker Ray" to everything he did! He does a lot of "no no"s, so she was quite busy. She informed a grown up of Tucker's every move, even the good things he did, wanting us to tell him to stop. Today we went to my grandparents' house, and she did the same thing. He does not seem to mind it one bit. Maybe he is the laid back one in the relationship, thank goodness.

I have a feeling he will eventually smack her, though, out of the blue one day.

I have mentioned before how well my sister Gina gets along with the kids. Well she is pretty mean to me. Today all the cousins were on the outside swing, and I sat with them since Tucker wanted me to. Gina told me I was too heavy, so I should get down. She asked Molli, "Isn't Lee-Lee too big, big like a whale?" And Molli said, "No, she's not a whale, just a pig!" Wow, way to come to my rescue, Molli!
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So onto the bragging part of the post...or just the COMPLETELY amazed part....Tucker said 35 words the other day in his 45 minute speech therapy session.

This is a kid who had barely any words a few months ago. It is so neat to watch him in therapy now. For over three years, therapy was such a torture to him. The speech therapist spent most of the hour fighting to get him to sit still and/or look at her. Now he is so excited when she pulls in the driveway, and he goes right to his table and chair to do his "work." She works on actual sounds now, like the "f" sound and "s" sound, it is so great to see that. He has so, so, so far to go, but he is finally making progress!

His teacher called me on Friday afternoon. They have discovered that Tucker has a knack for computer games...kind of shocking to me, as he only bangs on my laptop, or steps on it.

She had a hard time getting him focused on Friday, so she put on this program, Jacob's Lessons, on the computer. It is an ABA type program, and it works on many skills depending on what lesson you pick. So she said he was just a pro at it. He sat on her lap and pointed to the answers on the screen, then she would move the mouse to click on his selection. She said she really thinks we have been underestimating Tucker's receptive language and how much knowledge and language he has in his head. She says that he has really been soaking so much in over the last few months, and the computer may be a way for him to show off what he knows.

I tried the program with him at home, and I honestly was shocked. He got all the answers right...granted it was at the most basic level, so a much younger kid probably could have done the same thing. It will just be a great tool to help us to figure out what Tucker knows, and give him a way to express himself while he is working on his speech.

It also makes me realize that we should NOT have been letting him watch so much TV with us. We sometimes watch shows that I would NEVER let any other 3 year old watch, we just felt like he wasn't paying any attention.

So that will have to change!
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Last but not least, I really need to get started on my M4B stuff! I have been feeling so rotten lately, but I am so excited about this year, and so is my family. They are ready and just waiting for me to get it started, so hopefully this cold just goes away, and I can have all the energy I need to get it going!

Posted by tucker'smom | Comments: (2) | Permalink

SICKNESS...AND OVERREACTION

Feb 14, 2010 09:00am (EST)

Tucker has an ear infection and a pretty nasty cough...poor baby!

So the bad part is that I didn't even think he was sick. He didn't talk for two days, and he kept trying to stick his finger down his throat (to get the snot..gross!). I thought he regressed badly, both with speech and eating. Eating therapy on Tuesday was terrible, and his OT and I had a long talk about what could be going on. That night DH said "Leigh, did you ever think that maybe his throat is killing him and he is full of snot? Maybe that's why he doesn't want to talk or eat!" Thank goodness for him and his common sense!

So on Wednesday I sent him to school, but I told his teacher to call me if anything was "off" about him, since I gave him Tylenol and he really did not have any other symptoms. She called me near the end of the morning, and said he coughed towards the end of the day. Other than that, he was very engergetic and listened well to the teachers.

I took him to the pediatrician, thinking that nothing was really wrong, just a little cold. So he has an ear infection, and "snot for days." He is on an antibiotic and ear drops. Since Wednesday, he seems to have gotten worse, not better. Maybe it's because the meds are helping him to break up the mucus, so he coughs nonstop. He needs his pain meds right on schedule or he is miserable.

So I feel bad, of course, for thinking it was nothing! And for thinking Tucker just decided to stop talking one day! Which is really one of my big fears, that we will lose all of his progress he has been making, that we will wake up and it will all have gone away.

On Thursday his Speech therapist came to the house, like normal, because Tucker missed the last two weeks. He coughed almost the whole hour, but he worked so hard! I was so proud of him, he said everything she asked him to, even "air pwane" for the airplane toy he wanted! By Monday (we are off of school for two days due to Mardi Gras) if Tucker is not feeling better I am taking him back to the pediatrician, because the coughing is getting to be too much for us all to bear! DH and I have been forcing Tucker to drink orange juice and water to break up the mucus, and it really works. However, it is such a fight to get him to take a single swallow, and I am worried that we will set his feeding/drinking progress back by literally holding him down to drink liquids.

So we'll see how it all goes...
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In other news-Happy Valentine's Day!!

I am not really into Valentine's Day, it's even less fun since DH is working late today! We will probably just exchange cards, since our 5th anniversary is next month and we have a big night planned for that.

I think it's so neat, though, and I want to share-I found out this week that my college roommate is engaged. Also, she lives in Boston now, but her fiance' lives near me, so once they're married she's moving back here. I am so excited.

Also, we "think" my BIL is going to propose to his long time girlfriend sometime soon. They have been dating since Tucker's birth, and we love her, so we are hoping my BIL gets around to proposing soon.

I also found out my best friend is perhaps dating a new guy, which I have secretly been hoping would happen for a long time, since the guy is really great.

So I found all this out in the last 24 hours, and I think it's so appropriate for Valentine's Day. DH and I have been dating and/or married for over ten years, so it's nice to experience "new love" vicariously.

Posted by tucker'smom | Comments: (7) | Permalink

SURGERY AND SLEEP STUDY

Feb 08, 2010 09:53pm (EST)

Tucker had his surgery to close his trach hole last Wednesday. It went well, we thought he had to spend the night, but we ended up going home that same day.

The ENT cut a straight line, then stitched up the skin around it, that way he will have a very straight scar once it's all healed up. It looks pretty nasty, but it's getting better. He does not really touch it, so that's good. I still give him pain medicine almost every 4 hours while he's awake. He never complains about any type of pain, but he certainly gets fussy if I miss a dose of medicine!

Tucker was so cute on the day of surgery. I told him he was going to the doctor's. He kept saying "docker." Then when we got in the pre surgery area, he smiled and got on the scale, then went to his exam room. Once we put him on the bed and the nurses started examining him, he said, "go" and "car." We told him he had to see the doctor, and he was not too happy.

He made it through all right, though. It took him awhile to wake up from the anesthesia, the nurses said that the kids were all taking hours to wake up that day. When he woke up he asked for "ya ya" over and over. We thought he wanted my sister Sarah, because he calls her that, but it was a liitle odd. We thought of anyone he'd ask for, it would be GiGi. Anyways, he meant my mom's wallet! He tried to get up and walk to her purse, and he almost fell twice. I had to tell him loudly, "sit down!" He would not stop trying to walk. He reached my mom's purse, then she realized he wanted the wallet. She got it for him, he hugged it and collapsed back into my arms. He really does like the oddest things!

I am glad that we got to go home the same day, but I was kind of hoping for an overnight stay with monitoring. Tucker had a sleep study in the sleep clinic a few weeks ago, and I was hoping to get another night of monitoring inpatient to compare to that test.

I am 98% confident that Tucker does not need oxygen at night. We hook him up to the pulse ox every once in a while and he sats around 98-99% on room air. That being said....the sleep study in the clinic was horrible. For those of you who have never had that experience, it is hard to describe. They hook wires to literally every part of the kid's body-head, arms, legs, tummy, chest, all over the face, including IN his nose and mouth! This was his 4th study, I think, and everytime I swear they add more wires. I don't know how he slept at all.

So he fell asleep easily, but after a while the machine said he wasn't breathing. At this point he could still breathe out of his trach hole, but there was not a monitor on that, because he doesn't have a trach! So at some points the machine would say he had not breathed for over 5 minutes, when clearly he was breathing, and snoring pretty loudly

. So at one point the tech came in and tried to put the tube more in his mouth so that the machine could pick up his breathing. He woke up screaming, it was so terrible. She said there was nothing she could do but put the tube in, and he had to keep it on. So I told him "Tucker lay down and go night night." Tears were coming down his face, but he listened and laid his head back down. I couldn't pick him up or even pat his back because he had to lay on his back perfectly still for the wires to fit right. It is hard to explain the way it is without showing diagrams!

By the end of the night I was just so angry.

I understand that this is the test they use, but there are actually easier ways to go about this. There are machines we can use at home, and there are machines we have used on an inpatient basis to monitor his breathing and O2 that the sleep clinic does not have. I know that the dr. has a hard enough time getting the insurance to approve sleep studies, let alone overnight hospital testing, but I really never want to go through another sleep study again. If the tests come back indicating that Tucker needs oxygen at night, I will be very upset because I don't really think the test was accurate. He was hooked up to a pulse oximeter also, so I think that will show that he had good oxygen all night. We will go back to the pulmonologist in a few weeks to get the results.

Hopefully we have a few quiet weeks where we can focus on school and behavior issues. Every time Tucker gets anything too "medical," we go through several days of Mommyitis, and it takes us several more days to get back to our normal routine. This time, we added the fact that DH is still working everyday and late hours, so I go to appointments alone or with Nana. So by the time DH is home to help, Tucker wants nothing to do with him! DH feels terrible, and I feel even more frustrated, and of course guilty for needing a break. Thank goodness for Nana and GiGi, or we would be even more Looney Tunes than we already are.

Posted by tucker'smom | Comments: (4) | Permalink

HARD TOPIC

Jan 29, 2010 09:50pm (EST)

Okay....some things have been swirling around in my head for months...literally...
I have had a hard time actually typing them out because I don't actually know who reads this, I know that it is public, so more than just my supportive Share family has access to it. I do NOT want to hurt anyone's feelings, I just really need to discuss this topic.

DH and I were young when Tucker was born-we were both 22 and had been married for about 18 months. DH had NO idea about babies, LOL, so in that way he had no idea what we missed out on with Tucker. I "knew" since I have been around so many babies. I am the second of six siblings, have many younger cousins, and my mom ran a childcare business in our home for years. I had not experienced the whole pregnancy and childbirth experience from the view of an adult, though. A friend of mine had a baby a year before Tucker, and that's the first time I got a glimpse of the "ugly" side of pregnancy, including heartburn, hemmorhoids, and big stretch marks. I guess the other women kept that a secret!

Then I got pregnant with Tucker, and if you read this often, you know how that whole story turned out! So most days I am okay with that. When other people get pregnant, though, I always cringe just a little, for many reasons. Most of you feel that way, I won't go into that either.

Last spring we found out that DH's aunt was pregnant. She is just a few years older than DH, much more like a sister than an aunt. He pretty much lost it at that point, and has just gotten worse. This is the first baby in his family since Tucker, and it is a boy, which some how just makes it much worse. I tried to reason with him, and reason with my self, saying that their situation has nothing to do with what happened to Tucker. I just don't think he could stand hearing about the pregnancy or anything, while I am of course always hearing about pregnant people through other women. So I am more used to it, and more practical. I point out that of course we want every baby to be healthy, we don't want anyone to be in our shoes.

As time went on, I tried to explain to his family the sensitivity this needed to be dealt with for DH. He does not ask for much, from me or from life in general! He is a pretty easy going guy. As conversations turned to ultrasounds and newborn's sleepness nights, DH got more negative. And everyone brushed it off.....so I don't think anyone understood what he was really feeling but me...and of course he thinks I am over analyzing it.

So the baby was born today, perfectly healthy, thank goodness! Over the past few years we have not been as close with DH's aunt, and I think it's fine that he does not want to go the hospital. We have discussed future births, such as when our brothers or sisters have kids, or even good friends of ours that are now 10 weeks pregnant. He says he will let me know how he feels then, but right now he is not ready.

So this whole time, I have been trying to coach him through this, and I am actually still very hurt. I thought I was much more "healed" than this. Births happen all the time, they are generally happy occasions! So I would like to be happy with the family, not the people who remind everyone how bad it can really be. I am just not there yet, even after 3 1/2 years.

Since Tucker's birth, I have visited three newborns in the hospital. Two were babies of my very good friends, and the third was my cousin Molli, just a month after Tucker came home from the NICU. I did not get these feelings with those births, at least not nearly this strong! And they were a while back, so I thought by now my feelings would have gotten better, not worse! Maybe it is because we are finally far away enough from the life or death danger that Tucker has been in, so far away from those days that I can actually grieve for what we lost. Maybe it is because this baby is a boy, and I understand that the dreams we had for our son during pregnancy are much different than the dreams we have for him now? Maybe it is because I thought we would be ready for another baby by now, but Tucker's uncertain medical issues have made that questionable......regardless, I am having a hard time with this, and I just needed to finally blog that out.

Posted by tucker'smom | Comments: (5) | Permalink

MAKING PROGRESS!

Jan 28, 2010 08:30pm (EST)

After a few rough patches, Tucker is making great progress at school and at home, with his behavior and speech. He is actually eating worse, if that's possible, so I won't discuss that further.

Since the beginning of January, Tucker's teacher noticed he has even less of an attention span, which we didn't think was even possible.

Attention has always been one of his biggest problems. Once we can get him to actually focus on something, he learns it. But it could take ten minutes of fighting to get him to pay attention for two seconds...so you can imagine how much he learns....not too much. So I was very upset that his attention had actually gotten worse. She hasn't mentioned it in the last few weeks, though, and I have noticed him spending longer times on tasks at home and at therapy.

They started using a token economy about a week into the semester, which means that the kids have to work for tokens, which then get turned into prizes. So if you don't do the work, you don't get enough tokens to get your prize. I understand the concept, it sounded like "happy faces" or "sad faces" that kindergarten kids get. But that's not quite it. The kids never get sad faces, only positive reinforcement. Also, they are given many opportunities to get tokens in a short period of time. This way, they are getting rewarded constantly at first, so that they can get the idea. At the beginning of each school day, Tucker chooses what he wants to work for-mainly he chooses going outside! There are also a few toys that he likes, or the trampoline that's in the PT room.

There are several problems with Tucker and this system. Number One: kids are supposed to be rewarded quickly, then return to work. All of the things that Tucker likes take a relatively long time. You can't just go outside for one minute, or jump on the trampoline just once and feel like you've been rewarded! The other kids often pick candy, so they get a small treat, like one M&M for each full token board. Clearly, that is not a reward to Tucker.
Number Two: It's hard to decided if the reward is actually causing the good behavior, which would mean that it is a good reinforcer. Sometimes the kids behave well because it's a coincidence, or after a few times of getting the reward it is old to them and not worth it. Tucker's behavior is often so erratic that this is a big problem with him.

So on Monday, I went into the classroom while class was in session. My mom went to a grandparents' workshop about autism and behavior techniques last weekend, so I wanted to share the ideas with the teacher, and ask her advice about them. I observed about 15 minutes of the class behind the two-sided mirror. It was pretty bad

All of the other kids were outside with the teachers' aide, but Tucker was inside having a huge fit. His teacher kept offering him chances to do his "work", which consisted of labeling five pictures by saying their names. He already had two tokens on his board, but he needed three more to get to go outside. At first I felt bad for him, until I realized he was even refusing to say "truck" which he says about 100 times a day. The teacher cleaned up the room, telling Tucker that whenever he was ready to work, she was ready to listen. He just screamed until the other kids came back in. He tried several times to put tokens on his board without doing the work! I thought this was hilarious but also very bad! The teacher would just take them back and tell him he has to do his schoolwork to get a token. The teacher later told me that he had already been outside for 30 minutes for PT and adaptive PE, so she was not keeping from his only outside time.

So on the next day, when it was time for his seatwork, he labeled five pictures right away, and he got to go outside!

During these past few weeks Tucker has really been talking better. He can repeat most words, like today I told him his diaper was "stinky" (no, he is not near potty trained

), and he smiled and said "tink." He says "blow" when bubbles come out, and he can name almost all of his family members, which is quite a feat with our large family. He says them all in babytalk though, like my sister Sarah is "yaya." The cutest thing right now is that he constantly asks for my sister Gina, or "GeeGee". The other day I told him we were going to "big school" to pick up Gina, and he said "geegee cool" over and over until we left. Then for the next few days after his naps he would walk around asking for GeeGee, even though I told him we do not see her everyday!

We all hope his progress continues when we get his "blowhole" closed next week. I am of course referring to his trach stoma, which after over two months has not closed on its own. He still coughs out of it, blows air out of it, and sometimes sticks things in it....

He sometimes covers it up while he talks to help stop the air from coming out (seriously, even when the BandAid is on it, air still escapes.).
So we have that surgery scheduled for next Wednesday. He will stay in the hospital overnight, and the surgery will make his neck look like he never even had a trach. Of course we will all remember anyways! If I ask him "where's your trach?" he still points right to it. Yesterday we were listening to the Veggietales song, "I don't have a belly button," so I asked Tucker to point to his belly button. He pointed right to his g-button! Oh goodness, well that is his button on his belly, so I told him good job. So Tucker has learned all kinds of body parts that most toddlers do not!

So.....as much progress as Tucker has been making, his speech therapist and teacher both asked me last week....why isn't he doing a number of things, including: calling me and DH by name, following the same rules as at school, asking for things before getting them. The answer to all of this was that, of course, his two parents are pushovers. He barely has to work for anything around us, and he still gets whatever he wants.

I protested at first, until they both caught me in the act of meeting Tucker's needs before he even knew he needed anything.

So the last few days have been pretty rough, with DH and I both trying very hard to give Tucker nothing until he voices his desires at least semi-correctly. It is already working very well, with Tucker speaking much more often, and using a bigger variety of words. So I guess he will need us to push him very hard in order to progress, but he does have the ability to say more than he has been saying.
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Tucker also had an ER run this week! While it was bizarre, it was so funny to be able to take him to ER for a crazy kid reason, not for a scary medical reason.

On Monday, while his teacher and I were discussing the behavior techniques, Tucker came up to me with the teacher's clipboard. He was hitting me, and we told him to "use your words." Well, he didn't have any words for "my finger is stuck in the clipboard!" He got his middle finger stuck in the ring on the clipboard. We could not get it out, even with butter, dish soap, and ice. It swelled pretty quickly. Instead of freaking out, Tucker sat there as calm as he could be, just watching us all freak out. The principal and school nurse sent us to the ER. His teacher rode in the back seat, holding the clipboard steady.

The security guard rushed to help us when we got there, and they sent us right to the back for help. I think it must have been a slow day. The RN came in and cut the metal ring off from around his finger. Tucker sat perfectly still for the car ride and the cutting. When the tech came in for a temperature and a sat reading, that's when he started screaming! We calmed him down and the tech took a few quick vitals. The doctor checked him out, then we were out of there. It was the quickest, and least stressful, ER visit ever.

Posted by tucker'smom | Comments: (3) | Permalink

SPECIALIST APPOINTMENT

Jan 17, 2010 12:08pm (EST)

Ugh...I have been approaching burnout on so many fronts lately....being home with Tucker, and his behavior, is just starting to get to me. Maybe it's cabin fever, since we did not get out of the house for awhile, except for therapy and school.

DH has been working a turn-around at work, meaning he will work 10 hour days (plus travel time) for the next 8-10 weeks. We consider this a blessing, of course we need the income since I am staying home now. I just always underestimate how much Chris helps out with Tucker.

He has been coming home, eating, taking a shower, then going to bed. And we have about 7 weeks left.

Also during the freeze last week (which sounds ridiculous, we live in Southern LA!), we did not take proper precautions and our water pump froze up and broke. So we did not have running water for seven days.

We only had ourselves to blame, really, then we had to wait several days for the repairman to come out, since so many other people did the same thing! So we spent a lot of time at my parents' house last week, which is already pretty crowded! Tucker loved it, of course.

So amidst all this, we packed up for Houston, going to see the mitochondrial disorder specialist. My mom and sister came with us, and we spent Thursday night in Lake Charles with our cousins. It was so nice to see them, and Tucker behaved himself, sort of.

He had to go in time out once, and my aunt and cousins thought it was so funny. Most people think he's funny when he acts up, except me of course.

The next morning we headed to Houston. I had already wrote up an 11 page story of Tucker's life, and all of his medical records had been forwarded to the office. So we spent a few hours there, spoke to the resident, then waited for the doctor. She brought in a whole team of residents, and Tucker of course showed off for them! She was wonderful, so nice and professional, seeming to be truly concerned and want to find out what is going on with Tucker. She said right away that despite the test results, she does not think Tucker has mitochondrial disorder. He is too healthy, and the markers that keep coming back high can be easily affected by a kid crying while blood is being drawn. She says he very likely has a genetic issue, there are several she wanted to test for that the previous genetics doctor did not test for. She also said, "you're young, you want more children, right?" I said of course, so she said we will get this figured out so we can make a plan.

We took Tucker's lab orders downstairs, the lab was closed, so we had to go to the ER. Tucker had two grown men hold him down, along with a nurse to draw the blood, and me to hold his feet. I almost lost it, honestly. He has had this done several times, but each time he catches on quicker, and fights harder. My mom and sister stayed outside, the room was small, and my 14 year old sister really couldn't take Tucker's screams. As soon as it was over, we walked out and he ran to my sister and held out his arms for her! He clung to her for quite a while!

Luckily for us, (not Missy) Missy was already in the ER with her daughter. She heard my voice in the hallway and came out to see us. She of course knew we were coming, we had planned to spend the night at her house. So we came out from getting the labs and I saw Missy.

I was so glad to see her and get her opinion of the appointment. She pointed out that mitochondrial disorder is not a diagnosis we want for Tucker. I agree, of course, but it felt kind of good to have a supposed diagnosis for a while, and a direction to look at. We go back in March to get the results of the genetic and metabolic testing, so maybe then we will have a plan?? We started all this last June, June 1st to be exact, and I would just like to feel like we are getting somewhere.

I know no one has a crystal ball, I don't expect anyone to know the future for us. I would just like to have some type of plan in place.....to have some idea about Tucker's future. At this point, I really don't see him ever being in a typical classroom or living on his own. I know anything could change, but we may have years of planning and care ahead of us, it would just be nice to know what we are looking at.

Posted by tucker'smom | Comments: (4) | Permalink

BEGINNING OF 2010

Jan 08, 2010 10:25pm (EST)

Christmas was fantastic, Tucker loved the presents. He has been playing with his toys, of course he likes me to play with him or sit right next to him while he plays.

My in-laws got Tucker an activity table with storage drawers, his Rufkin therapy chair is the perfect height for the table. He pulls his chair up to it, straps himself in, and waits for me to play with him.

My parents got him a train set, it barely fits on the table. When we opened it, his eyes lit up and he said "Ane!" I had no idea he even knew what a train was, let alone that he would like it. There is a train table at the kids' hair salon where Tucker gets his hair cut, and he always liked it. But I still was not expecting that.

Tucker is still making lots of speech progress. He sometimes says words that totally surprise me, but he does not say some words that I would so expect! My sister's husband was out of town for the holidays for work, so my sister stayed at my parents' house for a week, along with her dog Ziggy. Tucker had barely spent time with the dog until last week, and he didn't seem particularly interested in him. Tonight we got together for a welcome home party for my BIL, they walked in with the dog and Tucker screamed "Iggy!" like they were best friends. The cutest thing right now is when he says "icky beebee," which means he wants Mickey on the TV. What is confusing (and frustrating) is that Tucker does not say some everyday words that would be so helpful, such as "music" or "more" or even "no." It is hard to figure out what he wants much of the time. He will sometimes say things, and I have no idea what they mean. So he says the same thing, louder and louder, and it still makes no sense. He gets very frustrated! And so do I.

In health news, Tucker's trach stoma is still open.

It was supposed to close in 24 hours-3 days. It has been over a month. The ENT said it still may close, but I don't think it will! It is barely open, but it is still enough to freak me out when I'm bathing him and to make him wear a band aid. The ENT will do surgery to close the stoma in the spring, it will close the stoma and reconstruct the area so that it will look like he never had a trach. Right now it looks like a belly button where his trach used to be.

We are going to Houston next week to see a specialist in mitochondrial disease. Tucker has a diagnosis of mitochondrial disease, and we are looking to find more information about the diagnosis and what that means for Tucker, as well as future children. Tucker is such an only child, not in a good way

so we would like to know as much as we can about genetic issues, which will help us with decisions about when to have another baby. I had to get the records sent over from every doctor Tucker has ever seen. I also wrote Tucker's life story, my goodness, going through that all in one story was overwhelming! It was hard to believe all of that happened in the last few years.

Tucker just went back to school on Wednesday, then today school was cancelled due to cold weather. It is very cold for Louisiana, but I was pretty surprised they closed school. Starting next week, he will attend school five days a week, for three hours each day. I am excited because school has made such a big difference for him, so I think being there more often will help even more.

I am looking forward to 2010, hoping it's great for everyone!

Posted by tucker'smom | Comments: (5) | Permalink

CHRISTMAS MEMORIES

Dec 24, 2009 11:04pm (EST)

Tucker spent his first Christmas in the NICU. He was almost 7 months old. His due date was four months earlier. Needless to say, we did not plan on spending his first Christmas in the hospital.

Of course, no one plans for that, but when he was born on May 26, I NEVER would have thought we would still be there for Christmas.

That year was dismal. We bought gifts, put up a small tree, made tons of preemie clothes and bought a box of gifts for the NICU babies. By December the NICU had just become a part of our lives. If Tucker had been born right before Christmas, that new-to-the-NICU haze might have still been upon us. But by then, we were very used to being there, almost as if it could not be any other way. I over-decorated his little room, it was a little ridiculous! He had a felt tree with ornaments from all of my cousins, his exersaucer from my mom, already put together. At that time he had his own "room" with a door we could close, so we planned to spend Christmas in that room hanging out in the rocking chairs all day.

Several days before Christmas, the doctor called to tell me Tucker had coded. They had to perform chest compressions on him to get him to breathe again. At this point Tucker had been trached and on the highest vent settings for months. He had never coded before, and this was of course a horrible sign. They moved him out of his big room so he could be more easily accessible, right in front of the nurses station. This removed any sense of privacy and quiet. The pulmonologist ran some tests and realized Tucker needed a longer trach. Once this was fixed Tucker did so much better, but we stayed in the new spot. Well Christmas was terrible of course. Tucker didn't even wake up the whole time we were there on Christmas day, and when his grandparents came in to see him, either DH or I would have to leave because only two people were allowed at the bedside.

That was such a sad time, and every year at the Holidays I have a special place in my heart for those families spending their babies' first Christmas in the NICU.

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I have already wrote so much about this Christmas in other posts. This year is the first year that I feel Tucker is enjoying Christmas. He repeated "anta" tonight for me. Pronouncing the "S" sound is really impossible for him, so I was shocked that he even tried. He has been shaking all of the Christmas gifts, even though none of them are for him!

We put out cookies for Santa (just two of them, DH and I got to them too soon

), and he said "cookie" clear as a bell.

The sweetest moment by far.....today he took DH by the hand and said "BiBuh, BiBuh" over and over. leading him to his toddler Bible on the dresser. He said "BiBuh" the other day for the first time. My sister got him a Toddler Bible last Easter and he just loves it. Each story is about three pages long and the pictures are really great. So I always call it his Bible and apparently he has been paying attention! Anyways, he pulled DH to the BiBuh, and once DH had it, he pushed him down to sit and read it to him. So I sat down and read him the story of Jesus's birth. He actually sat and listened to the whole story. He usually doesn't sit still for two seconds! So that was one of many Christmas presents Tucker has given me this year.

Even if tomorrow is crazy (we have two parties back-to-back) and Tucker hates the whole day (which is always possible) this Christmas beats every other year by far

Posted by tucker'smom | Comments: (5) | Permalink

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