End of March

Today is June 26 and I am trying to play catch up on our blog.

Kai moving around with his AFO's (leg braces) on
In a previous post, I wrote that I would get a picture of Kai in his braces with just a onesie on, so you can see how they are on him.


Kai in his stander, playing with Gavin and Jace

Below is a picture of Jace's head. About a week after I cut my head open, Jace cut his head open and had to get a staple. He was such a tough cookie about it.

Can't get caught up

I just can't seem to get caught up on everything. I've been meaning to attempt to get caught up on our blog, but just never seem to find the time to get to it. We are all doing well. Levi is still working lots of hours. We are loving our new house. The boys are enjoying living in town and being across the street from the pool. Kai is doing wonderful and is doing more than what some had expected. Well until next time!

Will I...

Will I ever get caught up on our blog? I've been hoping to get caught up soon. I just can't start from what is going on now....I have to backtrack.

We have moved!!

For those who don't already know, we have moved! We moved into our new house almost two weeks ago. It has been really busy with trying to get things unpacked and organized. I hoping to get our blog updated soon.

Behind

I am so far behind on blogging. One of these days I will get caught up. It just has been crazy busy around the Selly house.

Tender Tape

It's a little hard to see in these pictures, but this is what we use when we hook up Kai's night time feeding. It's called Tender Tape. We wrap it around his tummy to help hold the feeding tube in place. We could use other things, but most things, you would have to tape to the skin. This we just wrap around and it doesn't stick to the skin, just to itself.

It's that time of year!

We are heading into tornado season. My advice...get your storm shelter area ready and be prepared. Don't put it off, you never know when you are going to need to take shelter. I know, I know...some are probably get sick of hearing about it from me. But when we just barely survived the tornado of 2006, it's going to be constant reminder every spring/summer of that very traumatic event in our lives. My biggest advice is to take this severe weather stuff seriously. We always thought that "it's not going to happen to us" and it did! God took care of us that evening and had angels guide through each step of that tornado!

Genetics

Kai had a genetics appointment at Children's today. She was impressed on how well he is doing. He is doing better than what doctor's had expected. She seemed like she just isn't quite sure about her clinical diagnosis that Kai has DeBarsy Syndrome. Because there isn't a blood test to confirm it, there isn't a way to know for sure. She just seemed like she wasn't completely convinced, but that is what she is going with right now. He does however for surely have a connective tissue disorder and cutis laxa. She had brought up the idea of a possible progeria syndrome, but didn't really think so. So when he sees her again in 6 months, she is going to do this bone test on him to see how his bones are aging. I don't even like to think about this. It would not be good if Kai had some kind of progeria syndrome. Kai does have some progeriod features (for instance, he looked like a wrinkly old man when he was born). For those who don't know what progeria is...it is premature aging. So anyway...I think I will try to tuck that idea in the back of my head until we revisit that subject with genetics in the fall. So bottom line...we don't know for sure what Kai has...some kind of connective tissue disorder and something VERY rare. I think he has the doctors a bit puzzled! Maybe it's just "Kai Syndrome".

Me and Levi

Well, there's not a whole lot to tell about me and Levi. We have been keeping really busy. Levi is still on 12 hour shifts. For those who don't know how Unimin works....they work 19 days on and 2 days off. That's a lot of 12 hour shifts!

I have been really busy with everything, especially running all over the place for the kiddos. There have been moments where I forget what day we are on. I think I need a vacation...ha!

It's not going to slow down anytime soon. Hopefully after we move and we get settled into our new place, we will get some time to relax.

My head injury

There are two staples

Last Thursday, I had a little accident. I was at a friend's house and cut my head open. I bent down to pick something up and smacked my head on a display box as I came up. Boy did it hurt! I touched my head and realized I was bleeding. It was bleeding pretty good, I felt lightheaded and shaky. I called Levi at work to come and bring me to ER. Gavin had to get to Taekwondo. Luckily, my friend's son walked him over (they just live a few blocks from there). I had the girl that I watch with me, so her mom had to come and get her. Then my friend watched our boys while I went to ER. I ended up with two staples with no numbing medicine. I also had to get a tetanus shot since I could not remember if I had gotten one after the tornado or not. The shot actually hurt worse than the staples. Maybe because my head hurt so bad already. My head feels better now. It gets sore every now and then. This Friday, I get the staples removed. I have a feeling that it is going to hurt. I just need to stop worrying about it until that day. "Stop being a worry wart " as my sister would say.

Kai is 17 months!

Kai turned 17 months on March 14th. Today he is weighing in at 17 lbs 5 ozs. He is STILL in size 2 diapers! Kai is very much a toddler along with the toddler attitude! He is crawling around and getting into everything and gets extremely mad when you take something away from him. He's been going through some separation anxiety and at times gets very upset when I am out of his sight. Kai likes to tag along with Gavin and Jace, but some times the boys get frustrated with Kai getting into their stuff. Kai is pulling himself up into standing position (without his braces). He has a harder time maneuvering with his braces on. Nothing is really new with the feedings, pretty much the same as the last post about it. He still has no teeth. His dentist has looked over the chest x-ray that showed his mouth. From what she can tell, he has NO baby teeth, just adult teeth. She hasn't seen anything like this. So at his next dental appointment they are going to do some more in depth x-rays to get a better look. So I am not sure what this is going to mean. Is he not going to have teeth until like age 6 ish (when most kids loose their baby teeth)?

Kai playing "peek-a-boo" with the cupboard
Kai digging in the cupboards

Kai's button fell out during a feeding...the button had deflated on it's own due to a small leak. Luckily, we know how to replace these and we had a spare.

Kai in standing position without braces

Peg to Button

On March 12th, Kai had his J-tube peg switched to a button. So now Kai has two buttons. The top one is the G-tube and the bottom one is his J-tube. This is much nicer than a peg. He doesn't have a tube constantly hanging from him. Although, it does make the night time feeding a little more challenging, but I have come up with a solution. I will post a picture about it in a future post.

Gavin and Jace

Gavin and Jace--Silly boys!
Gavin

Jace

Gavin has been keeping himself busy with school, taekwondo and helping with soup supper at church. One of Gavin's new things is trying to spell words. He is just a sponge! At the beginning of March, Gavin had kindergarten round-up. He was pretty excited and yet a little overwhelmed. Gavin will be attending kindergarten at our church (the Lutheran Elementary School). Gavin is still enjoying Taekwondo. He goes twice a week. I need to get some new pictures of him there.

Jace has been keeping himself busy as well with school, speech therapy and play therapy. His speech is continuing to improve. It's been a little rough lately trying to figure out Jace. Now that his anxiety is being taken care of, he seems to be now going through toddler stage (at age 3 1/2). So at times, it can be difficult. But I think with the help he is getting, he will get through all of this. He enjoys school very much. He will be attending summer preschool for 4 weeks this summer. Next year, he will be going to the same preschool (ECSE) as he is now (Mon-Thurs, the first half of the day) and then in addition to that he will be attending preschool at Little Lambs (at our church), 3 afternoon days. So 3 days out of the week he will pretty much be in preschool all day. I think this will be good for him and really help him.

Both the boys have really been enjoying the nice weather and playing outside. Sometimes it is hard to get them back indoors!

SOLD

If you haven't already heard...we sold our house. So the last month has been extra busy with house stuff. Luckily, we were able to find a house that we like. We don't have an official closing date yet, but it has to be on or before May 1st. It is going to be a big change for us, but a good change. We are going from an almost 4,000 sq feet open floor plan, lake house built in 2006 to about 2,200 sq feet old Victorian house right in town, built in 1890. We are very excited and yet sad to leave our neighborhood. It's going to hard on the boys to not be able to just walk over to grandma's (Levi's mom lives right next door). Although they are excited to live right next to the pool in town and we will be just a few blocks great grandma Roxie. Word is that our new neighborhood is really nice as well. We have been very busy taking care of this or that for our current house to our soon to be new house. We have already started packing and trying to downsize. So the next month or so is going to be really busy with house stuff. I will keep everyone updated as to when we officially move.

The last time I blogged, I wrote that I was going to post a picture of Kai standing up with the walker in a onesie. So here it is...although Kai has an odd look on his face.

Walker

Kai just got a walker to use at home (thanks MVED!). He isn't walking with it quite yet, but he can pull himself up to standing position using the walker. We have the walker pushed up against the two step stairs so that Kai has something to sit on. Some of the pictures are hard to tell that he is standing all the way up because of his pants. I think next time I will take some pictures of him in just his onesies, so you can get a better idea of how his legs are. He is wearing his AFO's (leg braces) when he does this.

So excited to be able to pull himself up to standing position by himself

"Look at me!!"

"This is getting easy, how about just one hand?!"

Sleep study

Last Tuesday night, Levi had a sleep study done. The picture above was at the sleep study. It has been concluded that Levi has mild sleep apnea with hypersomnia. Some interesting information from the study showed that the first part of the night Levi was moving his legs about 39 times per hour and his sleep efficiency was only at 69%. The second part of the night they put him on a CPAP machine and he didn't move his legs and his sleep efficiency was at 77%. There was definitely a difference with the machine. So yep, Levi is now on a CPAP machine at night. Hopefully, he will be getting better sleep.

White Belt

Gavin earned his white belt at TaeKwonDo Thursday. He was so excited! The above picture was taken afterwards at home. I didn't have my camera with when he actually got his belt, so the pictures below were taken with my phone. Yay, Gavin!!

Kai at therapy

Kai standing on his own here with the support of the walker.

Picture Quality is not the greatest; pictures were taken with my phone

Kai is working with a walker at therapy. He did a really good job today. He was grabbing onto the handles more and he even stood on his on for a brief moment.

Three boys

It's hard to get a good picture of all of them together. They don't all want to look at the camera and smile at the same time.

The boys are doing good. Kai's update is in the previous blog. Gavin is almost 5 years old (well next month), but he is already planning his party. He is getting so smart. We are looking at sending Gavin to kindergarten at the school at our church. He has kindergarten roundup on March 4. Jace is improving all the time, but is still our "wild child". We just had his school conference. He is doing good in school. He has made improvements in speaking and in socializing. He is a busy boy and keeps me on my toes all the time!

Life at the Selly house is always busy. It's never dull around our house. There are days that I am completely wiped out and just want to hibernate in my bed, unfortunately that is never an option. We had a house showing the other day, even though our house is technically off the market right now. The showing went good. These people would like to come back and see our house when the snow is gone and it sounds like they have house of their own that they would have to sell. I'm very anxious for spring. I'm done with winter and want to let the fresh air go through our house. I'm also anxious for the boys to get more outdoor time.

Happy Valentines Everyone! Until next time....

Kai is 16 months old!

Kai is 16 months old today! At his last weight check, he weighed 17 pounds 7.5 ounces! He keeps gaining, yay! Kai is doing really good. He currently is pretty healthy. He is moving faster on his hands and knees. He tries to keep up with the brothers sometimes. He is pulling himself up on his knees and not hanging onto anything. He can stand up against something for brief moments. He is also working on sit to stand and vice versa. It was suggested that we look into the start of getting a wheelchair for him. On Friday, we met up with the rehabilitation doctor at Gillette. She feels that he is not ready for one yet and because he is somewhat mobile on his own, that we would revisited the idea in August. As far as feeding, not a whole lot has changed. Kai recently had a feeding clinic appointment. They suggested to concentrate more on purees than to try chopped and bite size foods because he doesn't have teeth yet. He can have chopped and bite size, but to try not to focus the meal on that. It takes him longer to chew the food up and takes more of his energy. As far as teeth, Kai went to a pediatric dentist a few weeks ago. They want to see him in 6 months and if he still doesn't have teeth at that time, they will do a certain kind of x-ray to get a good look at his teeth under the gums. Not a whole lot else is new with Kai. Typical toddler stuff...gets into things he shouldn't, gets mad when something is taken away from him, says the word "no" and doesn't like it when he is told "no".

Randoms

Kai
Kai so sleepy after a car ride home

Kai getting into things

The Two Peas in a Pod!

Jace and Mya

I don't know how he slept like that!

Gavin, Cousin Charlie, Jace and Kai

Just like dad!

Jace admires Levi so much! He wants so much to be like daddy. He likes to dress up like and daddy and pretend that he going to work. Here in the picture he has his work jacket, pants and boots on. Usually he has a lunch bag packed just like daddy. He will fill it up with some of the same things as dad, including the Mountain Dew pop. He usually has his play keys, phone and glasses as well. And then he tells me that he going to work. It cracks me up every time! Jace is such a daddy's boy and I'm not kidding you! For awhile it was pretty bad, but it had tamed down some.

Kai's stuff

Just recently discovered that we had decals for Kai's hearing aids. So we put the soccer ball ones on. They sure now how to make these things more fun for the kiddos.

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We were recently trying to figure out Kai's crib situation. For whatever reason, there is a little gap between the mattress and crib. Probably wouldn't matter for a normal toddler, but for Kai it does. Since his legs and arms are so tiny, it wouldn't take that big of a gap for him to get a limb caught. With his connective tissue disorder and hyperextensibility, he could probably hurt himself pretty good if he got a limb caught in a gap. So after several hours of searching on the internet and pondering different ideas, we came across Cozy Wedges. We thought this would work great for Kai's crib. We got them a few days ago and I finally got it set up in Kai's crib. He also recently got a wedge for his crib to help him be a little elevated while sleeping. So yesterday, Kai's crib kinda got a little makeover. Below are a few pictures. The Royal Blue around the inside of his crib are the cozy wedges.

Maintenance

Levi's work has been picking up. They just opened up the new plant out his work. The guys got a chance to bid on a different job. Levi had bid on maintenance and has decided to take it. He used to work maintenance until almost 3 years ago. He had switched to operating a loader so that he could get on first shift. So now he is back in maintenance and still on 1st shift. Beside it being hard physical labor, I think Levi likes being back in maintenance. For those of you who know Levi, he doesn't like to sit around, he likes to be constantly doing things. Running loader was a very monotonous job, not the kind of job Levi really wanted to do. And what better way for Levi to do one his favorite things, he gets to tinker with things and fix them! It's been busy out there. Levi has been on 12 hour shifts and it sounds like that could last awhile yet. For those of you who don't know how Unimin works, the guys work 19 days on and have 2 days off. So if you do the math with the 12 hour shifts, that's a lot of hours! His work is also hiring about 25 guys, that's like doubling the amount of workers out there. So for now, we don't get to see Levi much.

Taekwondo

Gavin has recently joined Taekwondo (well, he is still in the trial period). He was so excited about doing Taekwondo, he just couldn't wait until his first day of it. The first day, he was very excited, until the group started doing things he didn't know how to do. He got very upset and quit for a little while during class. We explained to him that it was okay that he didn't know what he was doing...it was his first day. We also explained that the others have been doing it longer and that he will get the hang of it. After sitting out for awhile, he saw that they were doing something he knew how to do, so he joined the group again. Gavin is probably one of the younger ones because this group is the 5 and 6 year old group; Gavin doesn't turn 5 until next month. Even though Gavin sat out for part of the first class time, he still caught on to some things. After we got home, he kept saying "Yes, Sir!" LOL! The second class time went a lot better. He still didn't know what he was doing all the time, but he gave it his all. He had one of the instructors working with him a lot and he kept trying hard. It is so fun to watch him. I think once he gets the hang of it, he is going to enjoy it more than what he already does. He trial period is up this week. I'm positive he will still be interested in continuing. He goes twice a week and always looks forward to going. He is excited about getting a belt. At first he didn't understand why he didn't have a belt and the other kids did. We explained how he has to earn his belts. So hopefully soon he will earn his white belt.

Gavin (2nd time at class)

Gavin's first time at taekwondo