Christmas Collection

Luke made out like a bandit this Christmas. We had 3 Christmas' this year. Luke was able to make it to two. It was so nice to be able to see everyone this year. Hopefully next year the little man can go meet the rest of his family at the Watson side's Christmas. Luke received lots of clothes, some toys, books, and many other things including his own Riley red wagon. For the time being Luke will only get to ride in it in our basement, but watch out this summer. He also got his high chair from my parents. I think he likes that almost the best. It allows him to sit up high and see what is all going on. Not to mention it helps us now that we are feeding him real food twice a day. My mom got us a Baby Bullet, so just this morning I made our first batch of bananas and sweet potatoes. He likes bananas in his cereal, and tonight we shall try the sweet potatoes. Jonathin went back to work last night for the first time in almost 2 weeks. It was like things were back to normal for Luke and I. It was night with Jonathin being here all the time, but it kind of threw off our schedule a little. I through in a few pictures of the past few days for everyone, I am sorry this is kind of short. I am currently on the phone with insurance over our Synagis shot....yay! Let me tell you, this little baby makes you grow up real quick and take care of stuff you know your parents usually take care of.

Yummy cereal and bananas in his new high chair.

Luke's new wagon with a side of Vader cat

Luke's new giraffe hat from Uncle Calvin

Finally sporting his Superman shirt that Denise bought him when he was 3 pounds!

Jordan

Merry Christmas!

Since Monday, Luke has been wonderful without his oxygen during the day. We still don't have a pulse ox at home so we don't know exactly how his numbers are, but he looks comfortable. Tonight Luke got a visit from Santa since he couldn't go see him. We just thought we would pass some pictures along and to wish everyone a Merry Christmas!

Jordan, Jonathin, and Luke

Cordless...during the day

Long story short...NO MORE OXYGEN DURING THE DAY!  Starting tomorrow morning, Luke will be completely free of any tubes or wires during the day. It might not seem like much, but wow the freedom that is in store. He will still have to wear his oxygen at night and when he is in the car, but not when we are awake and around him. On occasion we will have to spot check him with a pulse oximeter, but his NP was pretty happy with the little man. He also decided to perform today unlike Thursday. He was all about lifting his head to look at us when she asked him to. He also did well eating while we were away and did well in the car. Hopefully things will keep this way since we are back home. We are scheduled to see the pulmonary department at the end of January. Before that appointment we will have a sleep study done. Luke will have to spend the night and one of us will stay with him while the other spends the night in a sleeping room. That will be down here soon. Also, as soon as we are done with oxygen, Luke can have his hernia surgery. It will be nice to cross another thing off our list. So, right now we are relaxing after being gone for nearly 9 hours. I've thrown in a picture just to brighten your day. Luke's Great Aunt Pam crocheted him some cowboy boots and we decided tonight was the day to break them in once we got home.

Jordan

Cereal Testing

After Luke was told he might have to go back on NG feeds we are determined to prove the doctor wrong. Today we started working with a spoon. I can't say it went fantastic, but he gave it a good try. I am ecstatic that Luke actually opened his mouth for the spoon. This is huge to me. All I have heard is how preemies, that were on ventilators, can have oral aversion. He however did well with this originally when we moved to the bottle. I think there was more cereal on his face than in his mouth, but hopefully we can work on it more daily.

Also, after being told that Luke was weak and couldn't hold his head up that is all we have been working on. He has been blowing it out of the water. If we are holding him up, his is looking all around. Hoping that maybe by the end of the year he can sit in his bumbo.

Tomorrow we go back to Riley for a pulmonary visit. Fingers crossed that things will go well. I am 99% sure we will get turned down to .25 liters, however a bigger turn would make me jump for joy. I am just hoping for a good visit and that Luke behaves. We aren't telling him where we are going tomorrow. Maybe we can catch him in with surprise. The good thing is it is only a day trip and we will be back tomorrow night.

Hope for good news!

Jordan

Don't Treat Us Like Failures

I know your wondering about the title, but let me start at the beginning. Today we FINALLY had our first appointment with developmental pediatrician. However, our day started yesterday actually. Yesterday morning we went to our regular pediatrician for Luke's 6 month shots. They went pretty well. The big news was Luke's growth. As of yesterday Luke is 9 pounds 14 ounces and 22 1/4 inches long. He is sooo close to 10 pounds. After the little man's shots were came home to pack for another trip to Riley. It seems like forever since we were there. When we left Luke slept most of the way to Indy. We stayed in a hotel over night since our appointment was at 9am. To put it lightly, Luke doesn't travel well. Sure, he does great in the car, however everything else not so much. To cut to the chase, we were up all night. Every time Luke would fall asleep it would only last a short time, then back to crying we went. He also doesn't eat well. We were lucky to get a feeding in before we left for the hospital. 

At our appointment, I was less than happy when we left. To begin with, the doctor had no idea about Luke. I understand that he sees hundreds of kids, but if you are coming in to talk to a parent at least read the chart. He thought Luke was born in July and came home in August....HELLO! That is how it started. Luke is already uncomfortable and this guy just kept going. Luke's legs are still sore from all of his shots yesterday and this guy is bicycling his legs so Luke is crying so hard that he is holding his breathe. Then he just kept going. He wanted to see him eat. So instead of waiting for Luke to settle down he tried shoving the bottle in his mouth, leaving Luke to choke and cough. This then leads the doctor to just to the conclusion that Luke needs thickening and maybe back to NG tube!!!! What the heck! He said that because Luke was fighting the bottle it wasn't because he wasn't hungry, it was because he chokes regularly! Isn't it funny that speech passed him with his swallow test and he does fantastic at home without coughing or choking. I just sat there and stewed in anger. Jonathin thinks I am getting worked up over nothing. However, I feel like he attacked me and Luke that we are failing. He wasn't too excited for what Luke has overcame and accomplished. I thought the first 6 months were hard, but now I feel like we have a hard couple years a head of us. I didn't go into a lot of detail from today, but I am steaming still. I feel like we were attacked.

So now today we are home and Luke is back to his normal self. Once we put him in his carrier to come home he relaxes and is back to his old self. It is so funny. We get home and he eats all of his food, pooped, and got a bath to get off the hospital germs. He is comfortable and so are we. Hopefully we have better luck on Monday with pulmonary. 

Here are a few pictures that my cousin Bryan ( Bryan Chris Photography ) took of Luke at 5 months. He is too cute if you ask me!

Luke with his cousins Riah, Brenden, and Quin. You would never know Quin is 3 weeks younger than Luke.

Luke looks enthused in his spiffy outfit

Happy 6th Months Superman!

6 months ago today at 9:16 am our life was blessed with a handsome little man. What started as a normal pregnancy took an unexpected turn, however I believe God only gives you things you can handle. What started as a 1 pound 1 ounce miracle is now a bouncing 9 pound 5 ounce baby as of 2 weeks ago. He has slowly moved from newborn clothes to 0-3 months. They are still a little big, but otherwise he is a little cramped. He has begun to hold his head up on occasion and hopefully by Christmas he can be more steady. More and more Luke is noticing things. He is more alert and is taking in the world more. I know this Christmas isn't going to be too exciting for him, but I'm excited for our first Christmas with him.

This week we will finally be going back to Riley for the first time in 2 months. We should have went while we were in the hospital for Luke's abscess. Thursday we will FINALLY see the developmental pediatrician. Hopefully they will put us in the right direction. Our pediatrician here doesn't want to change anything. Hopefully we can start moving towards baby food. I know it won't be right away, but hopefully he can take more cereal. Also a week from today we go back to Riley to see the Pulmonologist. If we would have stayed on schedule we would be working down to oxygen only at night and in the car. However, I'm pretty sure we will only be going to .25 liter all the time. I will be so ready to finally be off the oxygen. He is breaking out all the time from his patches on his face. We are also fighting either an extremely dry head, or cradle cap. He can't decide. 

Hopefully today will be uneventful. He has already scratched himself with those daggers of fingernails across his forehead. He now resembles Harry Potter. Hopefully that is all that goes on. I swear I cut or file his nails every couple days. 

We took a picture of Luke with one of his many giraffes to measure him up. I wish we would have started this earlier. Then I put the giraffe by his giraffe in his room where hopefully we can measure him as he grows up. And yes we know his giraffe only has 3 legs, it matches an alphabet picture in his room.

Jordan

Mommy's Sick Day

Well the dreaded stomach flu has hit our house, and thank goodness it has not got to Luke. I am the unlucky victim. I woke up in the middle of the night and then banished myself from any where near Luke. Jonathin had to take care of night and morning duty, while I slept on the couch. Jonathin has to work tonight which means he sleeps throughout the day today to stay awake all night long. So I can not thank my mom enough. She took the day off from work and came and rescued Luke. I'm not big on Luke leaving the house, however it was the only option. There is no way I can keep an immune deficiency child around me. So Since 8am this morning we have been Lukeless and it is not just a little weird...it is A LOT weird. I keep thinking I hear him throughout the house. I keep looking in his playpen. The dogs even seem a little funny. This is not how I wanted a night without interruption. I just hope I can get sleep and this can leave my system before Luke comes home tomorrow. The nice thing is Mom has tomorrow off too, so if we need to he can stay till Friday. Slowly I am starting to feel a little better, however I swear there is still something living inside of my by the sounds that are going on. I have never used Lysol and Clorox wipes so much. Everything I touch gets a spray or wipe. Praying this goes fast. I hope to post some pictures tomorrow, no not of sick me, but of Luke living it up at Gammy's.

Jordan

Technology week

Wow, it has been a long week. Luke had his CT scan on Wednesday for his hearing aids. It went pretty well I would say. Luke wasn't happy to begin with, but then he fell asleep and make it all the way through the scan asleep. It only took 5 minutes or so. I really don't know exactly why we had it done. It was brought up after our last hearing appointment and had been pushed back since we were admitted to the hospital last month. I can only think that we did it just to check the anatomy of Luke's ears. However, the techs kept asking if he had surgery on his ears already. I don't know what that means exactly. I guess it makes me wonder if there is more going on than just antibiotics.

Then on Thursday we were finally able to get our RSV prevention vaccine, Synagis. It is known to be painful, however Luke took it like a champ. He was more into the bottle right afterwards. The next shot can't be given for another 25 days, so we will be back right after Christmas for another dose. He was approved by the insurance company for 5 total shots. They are $2800 a piece...eeek, I know! I just hope they work their magic. Hopefully things will work out for the best and we will be approved for them again next year. It all depends on how Luke's health is beforehand.

Like I said on the last post, Luke has been way more active. He is awake more and stronger. He has knocked off glasses this week and is all over the place. I keep trying to work with him more on the tummy mat, but he isn't too happy about it. There is so much I want/need to work with him on. His therapist said this week to start with link rings and different textures. I feel like there is so much I want to do, but not enough time in the day. I think that is my biggest worry when I start up with school again. I feel like I am going to let him down. I am going to have to do so much to pass my classes after being away for so long. It was tough to begin with and now it will be even more work. I just hope that I can give him all the time I can and still be able to work with him. These are my worries now.

Now to something that has taken over my life...technology! It started with the blog and I have been a Facebooker since 2004. However, the past few days I have started Tweeting and today I started Pinterest. Don't ask me why I started Tweeting. It isn't like we have an exciting life. I think it is just something else to use to get out Luke's story or what goes on in our life. Then there is Pinterest! I was bullied into it by a good friend. After 3 hours tonight, I have found 196 pins so far tonight. It is an awesome site, however I'm pretty sure it is just another thing to take time. I highly recommend it for ideas for everything, food, crafts, anything pretty much. I have found some great ideas so far for Luke as he grows. You can follow me on there also.

That pretty much sums up tonight. Luke is a little restless tonight, hopefully he will get some sleep along with myself.

You can follow me on Twitter and Pinterest with the name of Suprmansmom.

Jordan

Picture Catch Up

Luke's CT scan went really well yesterday, he slept through the whole 5 minutes. We finally are getting our Synagis shot today for RSV...fingers crossed he takes it well. Here are some pictures from the past week to catch you up.

Still a little sick on Turkey Day

No worries, Dad and Zbi slept right along with Luke

The Great Tree

In awe of the tree

Putting the pickle on the tree, the last ornament

If I haven't talked about it lately, Luke is all of a sudden a mover and a shaker and will hardly hold still. Hopefully I can update on that more later tonight.