It's hard to get a good picture of all three boys; they all of have kind of a goofy look on their face
Kai

Kai standing by himself without braces

And he can't stand like that for long at all. It was surprising that I was even able to get a picture.

The boys are all doing well. Gavin is working on math skills already! I can't believe that he can do some adding and he's not even in kindergarten yet. I think math is going to be a strong area for him. For the past few months, Gavin has been working really hard at learning the alphabet in the correct order. Last night he says to me, "mom, I can sing my A,B,C's". So I listened and he did it! ALL the letters and in the correct order. He is still interested in games. Grandma has been teaching him how to play solitaire on the computer. And of course he still loves checkers. Watch out, Gavin is good too! Jace is doing good. His speech keeps improving all the time. He has become Mr. Chatterbox. It's great to hear him talk so much. Last week, he finally got to go back to school (he was out for awhile after having his tonsils and adenoids out). He was very excited. He loves school. He is learning so much all the time. The other day, he brought me letters for all the kids in his class; M for Mya and Miss Mariah, P for Paul, R for Riley, C for Connor, E for Emily and Eve, J for Jace and John, O for Osvaldo. It was great that he was able to pick out the first letter for each kid and then tell me their names. Jace has come a long way. I'm glad that Jace is getting all the help that he is getting. He is still quite the handful. He can be a very busy boy and takes a lot of my energy. Some days he takes all the energy right out of me. He is still going to speech therapy every week, but is not longer doing occupational therapy. We are also working on pottying with Jace. He is making it a little more challenging. He is very well capable of going potty on the toilet and be in underwear. Heck, most of the time he changes his own pull-ups. So the last few days, since we didn't really have to go anywhere, I made him wear underwear and said that he couldn't wear a pull-up. He has been doing pretty well. Hopefully this will continue. He really thinks that it is okay to pee in his pull up. Jace has also gotten better with his anxiety (with the help of his medicine). He is more social with people that he doesn't know that well. We have Jace's conference coming up in a few weeks. It will be interesting to see how he is doing in school. Kai...what an amazing little boy! It makes me so happy that he is progressing so well. Right now he is healthy! He is doing very well. He made some good weight gain. He will get weighed again on Wednesday, so hopefully he has gained some more. He is doing well with feedings. We are slowly working on some table foods with him. It will take time. Still working on liquids orally. It's hard for him since he doesn't really have mouth control. He is crawling around, chasing his brothers. He is pulling himself up onto his knees and sometimes on his knees without holding onto anything. Right now we are also working on sit to stand and standing (both with and without braces). He is just doing absolutely wonderful right now. It's just amazing how well he is doing considering all of his issues. This week he gets to see the neurologist, the feeding clinic and urology (post opt appt). It's going to be a busy week with appointments in the cities and everything else that we have weekly. And on top of all of that....getting ready for Super Bowl!

Random

Kai enjoying some garlic bread and spaghetti
Two peas in a pod; Mya and Jace

Gavin is enjoying helping with household chores

Eating is a lot of work!

It's a lot of work to eat!

All wrapped up

This is how I found Kai this morning....all wrapped up in tubing.
This is why we use this blue tubing for Kai's overnight feeding. He sometimes gets himself all wrapped up with his feeding tube. The feeding tube goes in the blue tubing. The blue tubing is flexible so Kai can still move around, but yet doesn't strangle him when he does get caught up in the tubing. I'm so glad that we use this blue tubing. I feel better when I go to bed at night.

Coloring and getting messy

Kai coloring

Kai's finished product

Kai getting messy with his food

Little Boy, Big Attitude!

Kai giving Gavin attitude
Kai thought it was fun to take all the wipes out of the container

Kai may not look and move like 15 month old, but he definitely has toddler attitude! Developmentally Kai is probably at a 9 month level, but cognitively he is about right at his actual age of 15 months. He will get mad at Gavin and Jace if they get in his space or take something from him. If the boys get too close to Kai when Kai is having one of these moments, Kai will try to attack them. The boys are great about it and don't do anything back to them. There are times where it seems like Kai is chewing you out. It's great! This is an indicator of his cognitive level. So inside Kai really a toddler and thinks a lot like a toddler. He does not like the word "no" . Even yesterday, he had mimicked the word "no" after Jace had said it. Gotta love the toddler stage! With Kai's condition, it gives me a different perspective on ages and stages.

Kai is 15 months!

Kai turned 15 months on January 14th. He is weighing in at 16 pounds, 10 ounces!!! We just can't believe how much he has gained since he was discharged from the hospital at the beginning of the month. Kai is about 29 inches long. His height to weight isn't even on the charts. Kai has really bounced back from when he was sick. He is doing very well right now. It took a little over a week after being home from the hospital to get him back on track with feedings. I'm not sure what it is now, growth spurt or something but he is very interested in food and is eating quite a bit. He doing 132 mls bolus feeds on the G, four times a day and 24 mls/hr for 6-8 hrs drip feed on the J overnight. He is also eating orally 4-8 ounces at least 3 times a day. We are still working with oral liquids. He has a hard to with control of his mouth. He does some liquid orally, but not much. He is working towards some table foods. In the last week he has tried; pancakes, bread, cheese, chicken nuggets, french fries, fish fillet, mac-n-cheese, lasagna, garlic bread, cream of wheat, cheese and gold fish. He is a little hesitant at first with a new food, but eventually will try it. He still has no teeth. Next Thursday, he is going to see a pediatric dentist. I think once he gets teeth, he is going to be even more interested in food orally. Kai is doing so well right now. He just started crawling on hands and knees. Before he would just tummy crawl. He gets to where he wants to be, but sometimes takes a break in between. He is pulling himself up and trying to stand up. It's hard for him to maneuver his legs. They don't always cooperate with him. About a week ago, he sprained his foot some how. So he has had a swollen foot. Hopefully the swelling will go away soon. Kai is working on sit to stand. It is hard for him. He is so motivated and has the strength. He is lacking in stability. With his connective tissue disorder, everything is loose inside. Then he has all his joint issues, his joint always pop in and out. Kai will probably never be able to walk completely on his own. He is going to have to have some kind of assistance, whether it's some kind of braces or walker of some sort. He is also going to probably have a wheel chair. This would help Kai move around in the world a little easier. We are meeting up with the rehabilitation doctor on Monday to start the process of getting a wheelchair for him. Kai is always saying specific sounds for specific words. This is absolutely wonderful because he is starting to communicate more than just baby babble and crying. He also will mimic rhythm. It is just awesome how well he has bounced back from surgery and being sick (he was in the hospital for about 16 days total). He is an amazing little boy! Very happy, determine and self motivated. He is not going to let his condition stand in his way.

Life is busy with 3 little boys

It's never dull around the Selly house. Gavin will soon be 5 years old! He is doing so well. We just had his conference at school. His teacher said that he is doing wonderful and is a great helper at school. He loves school and really enjoys the bible stories at school. He even tries to following along during church service. Each day it seems like Gavin is learning something new. He is on a game kick right now and is learning how to play new games. His favorite right now is checkers. And watch out, he may be young, but he is good. Another thing he has recently started doing is math. He is always asking what x+x is. And he is actually learning it as well. He is just getting so grown up already! Jace is doing pretty good as well. We don't have his school conference until February. Jace really enjoys school too. He loves riding the big yellow school bus. In December, Jace was evaluated by the Development and Behavior Clinic. It was concluded that Jace basically has some anxiety with OCD features. So in January, Jace started on some meds to help with that anxiety. So far we think it is really doing him so good. He seems more relaxed and comfortable around people he doesn't know too well. He has also been talking more. I am just amazed at how much he has taken off on his speech. It's still hard to understand him especially if you aren't around him a lot, but he talking ALL the time now. He is still going to therapy every week. He will be also starting some play therapy in February. We are hoping that between the meds and the tonsils and adenoids out that this will help Jace, especially behavior wise.

Tonsils and Adenoids

Mommy and Jace
Kai riding in the wagon with Jace before surgery

Jace before surgery

On January 13th, Jace had his tonsils and adenoids removed. He wasn't sleeping very well throughout the night. His tonsils and adenoids were large, so we moved forward with surgery. We are hoping that once Jace completely heals, he will be sleeping better at night. Jace is doing pretty surgery. There are a few moments out of the day that are rough for him, especially right away in the morning. Soon he should be healed and feeling better.

Since he has been home

Picture of Kai's new tube. He has special dressing that goes on his site to help it heal. Just to the left of the dressing you can see his scar where his incision was.

Kai was still pretty weak when he got home from the hospital. He wasn't back to his total amount of feedings and wasn't moving around like he was prior to surgery. Each day he made nice gains.

Kai is home!

Kai is home now! He got discharged from this hospital this afternoon and is doing well. He's clingy, probably from being held so much when he was in the hospital. We will still have to work on getting him back to the amount of feedings he was doing prior to surgery. Since Christmas when he was admitted in, he has lost about a pound, which for Kai is a lot. So we will be working very hard to help him gain that weight back. He also has to build his strength back up as well. Gavin and Jace were very excited to see Kai. They were almost too much for Kai, right in his face all the time. I'm just so glad Kai is back and our family is all together! Now now more hospital visits for awhile.

House Update

We have decided to take our house off the market for the winter. We have so much going on right now, it's hard to keep up with the house and it's also a dead time for the housing market. If our realtor comes across someone that might be a fit for our house she will call and we can still do a showing. We will put our house back on the market in April.

Kai is still in the hospital, but is doing really good. It looks like he could be discharged tomorrow!!!

Happy New Year!

Happy New Year Everyone! We normally don't do a whole lot for the New Years. This year has started out with Kai still in the hospital. Today, Levi visited Kai by himself while I stayed behind with Gavin and Jace. We figured out how to chat to each other through web cam. This was pretty exciting for the boys, especially they aren't allowed to visit Kai at the hospital. I wish we would have figured this web cam stuff sooner.

Web cam visiting

Yesterday Levi and I spent the whole day with Kai. You can tell that he is feeling better. He played with some toys and showed some smiles.

Yesterday, they tried this idea on Kai to help with leakage. Yes, it is a bottle nipple. I don't think this was a great idea for Kai, maybe a newborn, but not Kai. It seemed to have irritated his site more than anything. They did take it off today.

Today cardiology saw Kai and said that everything looks good with his heart. So they took him off of the heart monitor. They have increased his pedialyte and plan to start with formula tomorrow. If things keep going good, hopefully Kai will be home with us soon.