School Days

Liam loves school. Every school day we show up early. It's part of the routine and routine is important. That and I don't do it purposely. Lanie has to be dropped off first then we drive across town to Liam's school. Today he only had to wait 5 minutes before being able to go into class. 

Are you ready for Liam? Cause he's ready for you!!

School days put Liam in such a happy mood in the mornings. And doesn't he look adorable in that popeye shirt?! Ironic I know since he's a skinny boy but that's probably why I like it. 

At pickup I snuck into the room so I could watch him interact with the other kids and teachers. 

Today they were singing a song about a whale. Last wensday it was circles. (There are other kids there but I cropped the picture where they wouldn't be seen)

Liam loves music time. Today he seemed a bit tired even during this time. 

Liam made some art work today. It's so exciting to finally have art work come home from him to hang. 

Wensday they worked on hands, counting fingers. 

This came home today but was worked on wensday. 

Today they focuses on feet and counting toes. 

Try actually traced Liam's shoes to make these. Even thought this is his shoe size his feet are much smaller. His shoes just have to be big to accommodate the braces. 

I love having art work to show off. 

After getting home Liam spent some quiet time playing in his room. I had just changed his bedding this morning. 

Have I ever mentioned what a lucky little boy Liam is? For his birthday he received not one but two Thomas the train blankets. Liam loves Thomas the train so when I changed his bedding this morning and took the last Thomas blanket off his bed I decided to put another one on. This made him very happy when he came home. 

Liam would carry both blankets around the house every day if he could but he's been good and settled on snuggling with them in his bed. 

We've been so blessed that Liam has come so far. We know it could have been way worse than it was. We love our monkey boy. 

Struggling With Over Stimulation

          I spent many nights worrying over Liam going to school. There were many reasons and fears running through my head:

He's too young.

I didn't get enough time at home with him.

What if he freaks out being left there.

What if he catches a virus.

What if his Gtube got pulled out.

What if he shut down due to over stimulation.

          Liam started coming home over stimulated last week. He was fine during class but as soon as I picked him up, he begun to shut down.

          Today was no exception. He saw me and at first wasn't ready to go. He wanted to finish singing the song about circles. Of course I wasn't in a hurry so I patiently waited for him to be ready. When he was he walked up to me then immediately shut down. His eyes glossed over and he got a blank stare on his face. At this point he refused to make eye contact with anyone. 

          He wouldn't say good bye. Wouldn't wave. Wouldn't acknowledge anyone or anything.

          He cried the whole way home this afternoon. Luckily we live 5 minutes from his school. Once home he wasn't much better. I had to resort to tactics I used when he was a baby. I laid him on my bed, pitch black, no lights, no noise. After 45 minutes in the dark and a bolus feed, he finally calmed down. 

          I hated to see him like this. At that moment I wanted to show his teachers what happens every day after school. How he shuts down. They had just stated how he was ready for a traditional preschool. He can't hardly handle two days a week with a day to between the two, there's no way he can handle five days a week. 

          Today one of his teachers told me that it got pretty loud during one of the activities they were doing and that Liam stuck his fingers in his ears and told them "too loud". I am very proud of him that he is able to communicate verbally and tell us how he feels and what he wants. He's come so far.

          I wish he could handle stimulation better. I wish I had a way to help him process better. Baby steps. Slow and steady wins the race. 

*note: there will be no pictures of the meltdowns and shutdowns caused by over stimulation. It's too heart breaking and personal to share. 

Proud Of Our Tubie

          I sit here laughing because the gauze came off Liam's gtube and he came and showed me. "Mom mom" he said as he lifted his shirt and pointed to his button. "It's ok Liam your fine" I said. Then he goes and shows his dad "dad dad". "Liam put your shirt down no one wants to see that!" I told him playfully. You see Liam is very proud of his button. So proud he will randomly pull his shirt up and show anyone including strangers. Of course it doesn't effect us because we are used to it. But Liam does this for a reaction so we tend to play with him a little.

          We playfully crunch our noses and in the silliest voice we say "eeewww Liam no one wants to see that but that thing away" and we proceed to tickle him and we all have a good laugh. This is what I did tonight, only as I said this Lanie walked into the room and says "eeww" because she plays the game as well. Only this time Liam runs toward her with his button in plain view laughing every step. Lanie gives him one of her fake screams and then proceeds to 'run away'. Liam starts laughing harder and chases after her. They ran in circles around the living room laughing until they couldn't breathe. Now you have to realize that Liam is a boy who spends 90% of his time in just a diaper because its hot and that just how he likes it. He is very proud of his button and he also enjoys these games we play.

           None of us are grossed out by it in any way at all. In fact these games are what helped him be ok with it because we turned him showing it off into a joke. We take the feeding tube itself very seriously. We never tell him its gross. We only joke with him in a way he gets. The "eww nobody wants to see it" always comes with smiles, tickles and laughter. The feeding tube saved his life and is allowing him to have a more "normal" life.

          Without the feeding tube I don't know that he would have lived to see the age of three. How long could he go on TPN without being a shadow of yourself? That would have meant growing up in a hospital completely. With the feeding tube he gets to do what other kids his age do. He gets to play and run and experience all that any other kid his age gets too. Sure we have to wrap his stomach with an ace bandage at times so that his Gtube doesn't get pulled out but it's all worth it.

          Liam gets to start pre-school this month. He gets to play in sand, go swimming, swing and climb. He gets to laugh and run and grow. With the feeding tube he's finally thriving. He's finally doing well. Sure it was rocky there for awhile but now his feed is dialed in and he's growing. So thank you to the Ancient Egyptian's who started finding alternative ways to feed people who couldn't eat the traditional way.

The following are pictures from Liam's Feeding Tube Journey:

Liam's Sick Again

Liam has been sick since mid-December. His pedi diagnosed him with a sinus infection on Jan 2nd and he has been on antibiotics since. He hasn't been tollerating night feed even at 35 mls per hour. I had stated doing boluses of blended diet through the night just to give him more cals since blended diet was all he's been tollerating. It's been rough on our little guy. 

Liam had another cranky day today. That's two days in a row now that he's seemed miserable. Lots of whining and lot of cuddles. Even from daddy who says Liam's just being a whiner and we need to my baby him. Hahaha funny daddy! I caught him in the act of coddling our little one.  You've seen his face! It's impossible not too. I felt like I had a tail today because he would follow me from room to room and just watch me and randomly grab my leg and hug tight and say "moooommmieee" I pat his back and say "Hi baby" or "yes Liam" or "love you too buddy" and he'd let go and continue to follow. It was really sweet. One he asked "moooommmieee up" so I picked him up and carried him into the living room where we sat on the couch and cuddled. After maybe 5 min he was ready to walk away from me for about 5 min the. He became my tail again. He melts my heart. This continued until about 6:30pm when he lost the battle and fell asleep on the floor with my fuzzy pj pants that he decided to carry around all day today. I laughed when he walked out of the bedroom with then held tight in his little arms. He looked up at me smiled and had laid his head down on them and said "aahhh". He has this new thing he does when he's hungry. He grabs his tube and says "eat". When I was preparing the syringe of food I let him stand on the step stool in front of me because he likes to watch now (also a new thing) and today I opened the container of blended diet and he immediately grab the syringe and sticks it in the container. Daddy was shocked and I just laughed. Liam already understands that the tube goes Ito his belly port and that the syringe goes into that port so why wouldn't he pick up that tr syringe has to go into the food first. Silly boy wants to do it all himself now. I applaud his smartness. It really shows that he understands how things work. Another he now likes to do is hold your hand while you walk. Even though we're just going to go grab a diaper and change him or go sit to do a feed, if its something for him where he knows he has to go he wants to hold your hand. I love it. Unfortunately the diaper rash from the antibiotics got bad and I did everything I had on hand including nystatin from his last rash. It didn't help. I went to the store today and got A&D ointment and after one use it looked 100x better! No bumps, not as red or as large. So happy I decided to try it. Liam hasn't been coughing anymore than he normally would. That icky cough is gone for about 2 days. No running nose either. I have him on the feeding pump right now at a reduced rate of 55mls per hr. praying he tolerates it because he gets more cals in the long run at night this way. If he tolerates tonight ill increase it tomarrow night. We also haven't been letting Liam outside the past few days because of the air quality. I've gone out to the store a few times this last week and I'm so stuffed up from it. Liam does NOT need to be out there. Also more good news no extra breathing treatments have been needed over the weekend! So happy little lamb is feeling better. 

Liam coloring: