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.