Kai's chest x-ray picture

We got a picture of Kai's chest x-ray. I thought this was interesting.

Kai's in the hospital

Kai was admitted into the hospital this morning. He is on oxygen and is just being monitored at this point. He has a little cold and cough and has been working a little harder to breathe. Now that Kai has been on oxygen, he is doing better. He is on a low level of oxygen and they are going to be observing him. He has that darn nasty cold...pretty little guy. They tested him for influenza and RSV and those both came back negative--so that's good. They also did a chest x-ray and that looked good. This afternoon they gave him an antibiotic to be on the safe side. It sounds like they are going to observe him for a few days. It sounds like if he stays the way he is then they will probably send him home, but he will probably be on oxygen. If he gets worse then he probably will go up to Children's. On Thursday, Kai had several appointments in the cities. I will post more about those in the days to come. But one appointment was with the genetics doctor. She had two major concerns about Kai right now. One---if he gets sick, it could potentially be life threatening for him. Two---is his breathing. He uses a lot of energy to breathe. He's not gaining enough weight to burn off so many calories. So I'm not sure exactly what the plan is. I believe once he comes home, he will be on oxygen at home. He is a very fragile baby.

Kai is 2 months!

Side view of Kai's head...it is somewhat hard to tell in the pic how flat his head is on this side

Trying to hold Kai up in sitting position

Kai--2 months old

Well today Kai is 2 months old. He now weighs 8lbs 12 ozs. Last Thursday, the home care nurse was here and plotted out his measurements. His head was at 50%. His length and weight were at 5-10 %. So his limbs are not in proportion to the rest of his body. And you can tell this by just looking at him. Tomorrow he goes in for his 2 month check up, so we will see what they have to say. On Friday, Kai saw a doctor from Gillette for the flattening of his head. From what I understand, structurally Kai's head is normal so that is a good thing. The back right side of his head is very flat and is shifting his forehead and nose in the front. The doctor highly recommends a CranioCap for Kai. He has to wait until he is about 4 1/2 months old before he can get this CranioCap. He is too little and his head is too small right now for one. So he will be getting this when the time comes. He also thinks that Kai has torticollis (tightening of this particular neck muscle). So we have to do some specific neck stretches on a daily basis with him. The good thing is that he is starting to look his left. This Thursday we have 3 appointments in the cities. We meet with the eye doctor, neurologist and the genectics doctor. We meet with the orthopedic doctor on the 30th. Hopefully we will get a better idea of what the plan for Kai's hips are. Otherwise Kai is doing good. He is more alert during the day. He is doing the same as far as feedings. We will probably up his feedings soon. He does seem like he may have acid reflux, we will see what his doctor says about it tomorrow.

Gavin and Jace are doing good. They are excited about Christmas. Hopefully we will make it to see Santa this week.

Until next time!

Kai...the day of reaffrimation of baptism

Great Grandpa and Grandma with all 3 boys

Kai on his new positioner. This positioner is awesome...it's like playdough!

Time Flies!

It has been awhile since I last wrote. It has been crazy busy around here. I can't believe how fast time flies! Kai is almost 2 months old already. He is doing good. He now weighs 8 lbs 6.5 ozs. He has been taking about 20-30 mls from the bottle and is at 65 mls for total feeding at each time. He is start to have a little better head control. He has the home care nurse who has been coming weekly. After next week she will be coming monthly. He has OT/PT coming every week. We just got a new positioner for him. It is so nice to have this because there are so many ways we can position him. Kai has his 2nd hearing test in Mankato and needs further testing. He has slight hearing lost in one ear and moderate hearing lost in the other. Kai also has been developing a flat head. It is getting to the point that it is shifting things on the front of his head. He is seeing a doctor from Gillette Hospital on Friday. It sounds like he will have to wear a helmet to shape his head back. On the 18th Kai sees the eye doctor, neurologist and the genetics doctor. Lots of appointments! Last weekend we had a reaffirmation of baptism for Kai. We had a bunch of people over after for lunch and cake. It was a very nice day.

Gavin and Jace are doing good. Gavin is almost done with this round of ECFE. He has been going to practice at church for the Christmas program. They seem to get bigger every day! Jace is learning more words and talking more, although his words still aren't very clear. He is doing such a great job with it. His teacher comes every week and works with him. They are getting excited for Christmas. Hopefully one of these days here we will take them to see Santa.

Levi has been busy working his life away at Unimin. He has been working a lot of 12 hour shifts lately. As far as me...busy, busy, busy as always! This past week one of my daycare families lost their home and belongings in a house fire. We have been trying to help them in any way that we can. We feel for them. As it wasn't that long ago, we were in a similar situation with the whole tornado disaster. God bless them!

Our Family

We had our family pictures done today. For some reason when I scanned them into the computer, they turned out a little grainy like. Pictures went well, except that Kai wasn't happy. Gavin and Jace did very good. Jace ended up with some kind of rash on his face today. At first I thought it was from one of the daycare kids who pinched him in the face, but then it started spreading a little. It seems like that also happens right before pictures. Just like Gavin got a little bit of a fat lip yesterday (you can't really tell in the pictures). Him and a daycare kid were goofy around and Gavin got a foot in the mouth. Silly kids!!!

Kai is 6 weeks old!

Today Kai is 6 weeks old. I just can't believe it has been that long already.

Kai is doing good. He now weighs 7lbs 4 ozs. He is growing out of a few newborn sleepers. His feedings are improving. We bottle him about 3 times a days and he has been taking on average 20 mls from the bottle before he gets tired. His total amount at each feeding is now at 60 mls (30 mls = 1 oz). When he is awake and not fussing, he is very alert. He started OT (through early intervention) this week. She worked with some positioning. One of the positions is him in this bean bag. He is leaning somewhat towards his left side. He favors his right side a lot. His head on that side is get very flat :( She also worked with some range of motion. Hopefully by doing these other positions, this will help him to not favor his right side. The other night we had an interesting bath night. We gave Kai a bath. Towards the end when we were getting him diapered and dressed, he started vomiting. It was kind of scary for me considering he is so little. I held his head and chest up a little and tilted him to the side so that he wouldn't choke. At first we thought it was because he had eaten right before his bath and he was crying a lot during bath time, but his vomit was not formula. It was yellow and foamy. We finally figured out why he vomited. I clean around his G-tube with peroxide. Some must have gotten in the hole and into his stomach! It couldn't have been much considering I just put some on a Q-tip and then cleaned, but I guess it was enough. I felt so bad after that. I think we will just stick to soapy water when we clean that area. Gavin and Jace are doing good. Jace is improving on his speech. His teacher comes out every week now. There are times that he really searches for the words to use. Both of them are growing up so fast already. We just can't believe it! Gavin is almost done with ECFE. I'm sure he will be disappointed, but at least he will still have Sunday school to go to. We are getting our family pictures done on Tuesday. It is hard to pick out clothes so that everyone matches. Soon we will be putting up our Christmas tree. I can't believe how fast time is flying. The boys are getting excited about Christmas. Until next time!

My Boys!

Kai is 5 weeks old!

Kai is now 5 weeks old already! I can't believe how fast time is flying. He now weighs 7 lbs 2 ozs (according to the clinic's scale). So it is good that he is gaining weight. Yesterday he had an audiologist appointment and he did not pass the hearing tests. He has to go back for another hearing test. This one tests the different pitches. We know that he can hear some sounds because he is startled by loud noises. The doctor said that some may have a hearing loss in certain pitches. So we will see how he does on that particular test. Otherwise Kai is doing good. He will have occupational therapy (through early intervention) every week. He will continue to have the home care nurse come to our house every week.

Gavin and Jace are doing good. They are growing like weeds. I can't believe how much Gavin knows for his age. We have started potty training Jace. He is very interested. It would be wonderful to get him out of diapers.

I start daycare back up tomorrow. Although it may be challenging at first, I'm ready for the routine for myself and for the boys. Levi just got put onto 12 hour shifts for like almost the next week. That's a bummer. He basically works and sleeps then.

Until next time!

Kai is now almost a month old! I can't believe how fast time goes. He is doing good. It is so great to have that feeding pump. I think it is better for Kai as well. We have increased his feedings a little and will increase again soon. He currently takes 55mls (30ml=1oz) per feeding. We had a home care nurse here on Monday and she is coming again on Friday. Tomorrow Kai has to see the surgeon that put the G-tube in for a check up, so we are heading to the cities tomorrow. On Monday Kai has to see an audiologist, he didn't pass has hearing screening so needs to get rechecked and then he has another regular follow up appointment at the clinic in Mankato.

Gavin and Jace are doing good as well. Gavin is pretty much potty trained now, just a pull up at night! Jace is starting to potty train. He has gone on the potty a few times. I can't believe how much they have grown just recently! Time sure flies.

Next week (Wednesday) I start daycare back up. My time off has gone be fast! As much as I would like to have more time off, I am eager to get back into routine. It is going to be a little challenging at first, but once everyone adjusts again, it will be fine.

Gavin and Jace playing out in the yard
Jace

Gavin

Great Grandpa Robert and Kai

Kai

Mommy and Kai

Kai had just a regular doctor's appointment on Thursday. He now weighs 6lbs 11ozs. We talked to his doctor about this electronic feeding pump. The clinic moved fast and we had someone out yesterday to set us up with this feeding pump. What a great device! This is going to make things easier for us and for Kai as well. He will get continuous feeding throughout the night (yeah...I don't have to be up all night). During the day we will still use the pump, but it won't be a continuous feed. We will still also continue to try bottle feeding him a few times a day. This feeding pump will make feeding a lot easier for when we are out and about. Before yesterday when we got it, I was trying to figure out how we were going to do feeding when are out and about. Before this feeding pump, we were pouring small amounts of formula into this 60 ml syringe that had to be above Kai so it could have gravity flow it into Kai's tummy. We were just so happy to get this feeding pump. The nice thing about it also, is that it is small and has a little backpack to carry it in. Technology...what great things that are made! It has been a bit overwhelming with everything. Kai has so many "peoples". It is sometimes hard to keep everything straight. I think I need to look into getting a PDA. Otherwise Kai is doing good. It is so fun to just hold and snuggle with him. Gavin and Jace really enjoy holding him as well.

Yesterday morning we got about 2 inches of snow. Gavin and Jace went out and played in the snow. They had a great time! Gavin was disappointed that the snow had melted away. We told him that there will be plenty more snow to come.

Yesterday morning the boys got a new baby cousin. My sister, Tina had a baby girl yesterday. And what a cutie! It will be nice when we all can get together.

Well Gavin and Jace sure like their little brother Kai. Gavin wants to be the big helper and Jace wants to hold him all the time. The first thing that Jace did when he got out of bed this morning was to look at Kai in his crib, it was very cute! It was kind of a rough night with Kai. I barely got any sleep. He does feedings every 3 hours and his feedings take about 1 hour to do (about 1/2 hour to feed and then another 1/2 hour to vent his tube). He was a little on the fussy side and I'm not totally sure why. He seems to be a little bothered during his feedings. They have him on a 24 cal formula feeding. Levi called tonight and talked to one of the nurses and she suggested to go down to the 22 cal formula feeding and see if that makes a difference. Kai has a doctor's appointment tomorrow so we can ask about it then also. I'm hoping that tonight will be a better night. We are suppose to keep doing his wrist splints and hand rolls. He does not like his wrist splints and always wiggles his hands out of them, so it is hard to keep them on him. We are also suppose to work on some positioning things with him and some range of motion things, but we haven't gotten to those yet. We are just trying to get situated and figure out his feedings and cares first. For those who don't know ( I can't remember if I wrote in a previous blog about this or not...I have brain overload right now), Kai is no longer in his harness. They took it off when he had surgery and the orthopedic doctor said to keep it off since there was no progress. It sounds like he will have to have surgery on his hips and then will be in a body cast for 12 weeks. They want to wait until Kai gets bigger, stronger and more stable before they go ahead with surgery. We had talked to the genetics doctor on Monday and she really thinks that Kai has Type II Cutis Laxa (cutis laxa is latin for loose skin). This falls under Connective Tissue Disorder and is extremely rare. I don't remember all the scientific things about how it is tested and how long it will take to determine if he has it. She said that because it is so rare, it is hard to find enough information on it. I know that some people had mention Ehler's Danlos syndrome and she said that Kai does not fit under this. So we are still left with the question...what does Kai have? Kai has about a dozen doctors and specialists that are working with him. He has many follow up appointments. He will be starting early intervention and the follow along program. We do know at this time that he will pretty much be delayed in everything. Otherwise Kai is doing pretty good. I have been trying to bottle feed him a few times a day. He seems to take anywhere from 5-10 mls from the bottle (he takes 52 mls total each feeding) and then the rest is tube fed. Tonight he went in the swing here for the first time. He liked it for the first 5 minutes and then started to fuss. He really enjoys to be held! Well until the next post!

Jace and Gavin with brother Kai

Kai's first day home

Kai is home!

We got to bring Kai home today! What an exciting day! So far Gavin and Jace have really been wanting to hold him. We are still getting situated. His feedings are different than a regular baby feeding. We are welcoming visitors, but please call ahead of time. We also ask that if you are sick to not visit right now. It is very easy for Kai to catch things and get sick easier.

Kai is doing well with his tube feeding. Every couple of feedings they up the amount to get him back to the amount that he was at before surgery. Last night was the first time that I participated in tube feeding him. Kai now weighs 6 lbs 4 ozs. It was so nice to sit and hold him last night. We didn't go up there on Saturday so it had been a little longer. When we were there last night, we had looked through his chart and found that the genetics doctor had stopped in on Friday. In the notes in his chart, it says that she believes that Kai has Type II Cutis Laxa. We have not actually talked to the doctor about this, nor have we been actually informed about this. We knew about the cutis laxa, it is latin for loose skin. So hopefully we will find out a little more about this when we talk to the doctor. I talked to his regular doctor yesterday and he said that it is possible for Kai to be discharge on Tuesday and if not that day then Wednesday. We are also waiting for the orthopedic doctor to see Kai. I am attaching a couple of pictures. The one is of Kai tube feeding. His arm is not in a cast, it is just bandage up to hold the IV in. The other picture is of the boys on their new bunkbeds. We moved Jace back into the same room with Gavin. Until the next post!

Gavin and Jace dressed up for Halloween

Kai after having surgery to put a G-tube in

Kai in his little pumpkin hat

Kai's surgery went good!

Kai's surgery went good! He also got circumsized at the same time. We had decided to have him baptized right before surgery just in case things didn't go well. We will then have an affrimation at our church. They ended up having to take Kai's harness off to do the surgery and had talked to the orthopedic doctor. He told them to just keep his harness off and it sounds like Kai will need to have surgery on his hips. The orthopedic doctor is suppose to see Kai in the next few days. Since we were up at the hospital with Kai, we missed out on taking the boys trick or treating. Luckily Levi's parents were able to take Gavin and Jace out, so they didn't miss out on trick or treating. Well tomorrow we will be hanging out at home and getting things ready for Kai to come home. We are hoping that he will be able to come home on Tuesday.

Kai has a surgery date

Kai will be having surgery Friday afternoon to have the G-tube (gastrostomy) put in. We are praying that everything goes well. He should be able to come home 3-4 days after surgery. We will have to learn how to feed him with this tube. Today he is having an ultrasound done on his hips to see how they are doing. The orthopedic doctor is suppose to see him sometime today as well. He will determine what the plan is for the harness that Kai has been in. Kai is also suppose to be looked at by the pain team. He has been experiencing pain with having this harness on. Otherwise we have been just keeping busy with Gavin and Jace and driving up to see Kai. Since Levi and I will be there for Kai's surgery tomorrow, we will be missing out on taking Gavin and Jace trick or treating. But they won't miss out, Grandma and Grandpa will be taking them. Until the next post!

Things are finally starting to move along. They have officially decided to do the G-tube (gastrostomy) with Kai. They have not given us a surgery date yet, but they said it would either be at the end of this week or early next week. Then he has to stay 3 to 4 days after. So Kai should be able to come home sometime next week. There is a lot that we are going to have to learn in order to take care of Kai. He has been having fussy moments between cares. The nurses think that he is experiencing pain. So the pain team is suppose to have a look at him sometime here. I am now back in St. Peter and am just going to drive back and forth. Until the next update.

Kai is no longer in intensive care

Last night they moved Kai out of intensive care to their next step down nursery (the ICC). I was in St. Peter Sunday night so I have not seen him since they moved him to the ICC. He has been having some fussy spells. The nurses think that he is some pain. Today they are suppose to have a pain specialist look at him. Hopefully I find out a little more information about the plans for Kai today. I had to post this picture of Kai because they had him in such a cute outfit. He looks a little bigger than what he really is because of his harness. Well...until the next post!

Great Grandma Roxie and Kai

Kai with his wrist splints on

There hasn't been a whole of changes since the last blog. They are running some more tests. Kai had a MRI done on Friday, but we haven't heard anything on that. They will be taking some more blood from him on Monday to run some additional tests on top of ones that they are already doing. He has had a little progress with the bottle, but not a lot. It is going to take him a long time to grasp onto bottle feeding. It really sounds like he is going to have to have the

G-tube put in. We should know a little more on that at the beginning of this next week. He is getting his hips looked at again on Thursday. So there is a chance that he could possibly go home at the end of next week. I hope it is soon!

For those who are leaving comments...please email me (selly2517@msn.com) your email address (if I don't already have it) so that I can send you a comment back....Thanks!

Thanks everyone for all your support, prayers, contributions and kindness!

We got some good news!

We received some good news today. Kai does not have Menkes disease or occipital horn syndrome. This is such a relief! Now we are back to square one...what does Kai have??? They are working on trying to figure this out. Whatever the case is...it is rare. They know that there is something wrong because of his loose skin and his joint issues. Tomorrow they are doing a MRI and x-rays on his arms and legs. This will give them a better look at Kai.

Yesterday Kai had a swallowing evaluation done. The good news is that when he swallows the formula, it goes down the right way. He does good for the first handful of swallows and then after that it becomes really hard for him. It gets to be a lot of work to feed from a bottle. This is something that they will be working with him on for the next handful of days. They will re-evaluate early next week and then go from there. If the bottle feeding does not go well, they may have to do tube feeding through the stomach. Also yesterday they put the harness on Kai to help his hips. I believe the plan is for him to have this harness on for about 3 weeks and then they will look at his hips and see how they are doing. This harness is on him 24/7. He seems to be uncomfortable with it on and I think he may be in a little pain from it. I think he will feel better about it once he gets use to it. Today they put splints on his wrists. They are having them on for 1 hour and then off for 2 hours and again same thing. He doesn't really seem to enjoy them either. It is really hard to not be able to comfort him. I'm not sure exactly when, but they are talking about moving him out of intensive care and moving him to the infant care center ( which is a high level of care, but not as high as intensive care). So Kai just needs to get this feeding down and then he will be able to come home. We are so anxious for the day that Kai gets to come home. I suspect that he will still be in the hospital through next week. Well, until the next update!

Grandma and Kai

Kai in his harness

Today I got to spend a lot of time with Kai. I just cherish every moment with him. He had kind of a busy day. He had some blood drawn for the copper level tests. He had an ultrasound done on his bladder and that came back looking normal. The occupational therapist worked with bottle feeding him today. At first he was doing good, until the formula sat in the back of his throat and he wasn't quite sure what he was suppose to do with it. He had a real difficult time with it and had to work really hard to eat. They only did this for about half of his feeding and then did the rest of his feeding through the tube. They are doing a swallowing evaluation on him tomorrow morning. Depending on what they find will determine what they are doing next with his feedings. This evening Levi joined us (he had to go back to work today). Levi and Kai snoozed again in the recliner. They seem to really enjoy doing that together. This evening the orthopedic doctor came and looked at Kai. He wants to try this little harness thing on him for his hips. This may help put his hips back into place, which we are really hoping that it does. They are probably also going to be doing x-rays on his wrists again to get a better look at his bones. It sounds like they are going to do some splints on his wrists also. So it was a busy day for Kai.

Tomorrow I am heading back to St. Peter after I visit Kai in the morning. I will be staying down there until mid-day Wednesday. I really miss Gavin and Jace. It is hard to be away from my family. I wish I could be in both places all the time. Hopefully we will be able to bring Kai home soon. It doesn't sound like it is going to be this week :( Although it is going to be very challenging when Kai does come home, I am very anxious for that day to come. We will have to learn how to take care of him and make sure that we meet all of his needs.

Gavin and Jace have had a lot going on in their little lives. Gavin is going to the eye doctor on Thursday. He didn't pass his vision test when he had his Early Childhood Screening. He has also been squinting (sp?) and complaining that he can't see certain things. So I guess we will see how that shakes out. Next week we meet with Jace's teacher and the speech therapist. We should find out what the game plan is going to be with Jace. The boys are sure keeping us on our toes!;)

Well, this all for today.

We still don't know what is wrong with Kai, but whatever it is, it is rare. It could be awhile before we know anything. They are taking some blood from him tomorrow to send off for some tests. They are looking at his copper levels and then testing for Menkes disease or Occipital Horn Syndrome. Levi did some research on connective tissue disorders and came across Larsens Syndrome. Kai has a lot of characteristics of this Larsens Syndrome. This would be a question that we would have to ask his doctor.

Every day Kai seems to be doing better and is looking better. This weekend we held him a lot. Levi and him snoozed together in a recliner a few times. It was really nice to be able to do that. I have also been taking part in his diaper changes. The first one that I did, I was so scared to do it. I have never been so scared to change a diaper before. Now I feel comfortable doing it. It is definitely different than changing a regular diaper. He has been breathing good so that is checked off the list of things that he has to accomplish in order to come home. He has been doing good with holding his body temp. Tonight they are starting to wrap him in blankets and turn off the warmer. So this is a step closer to checking this off the list. We will see how well he can maintain his body temp on his own. Tomorrow they are going to re-evaluate his feeding and possible try to nipple feed him. Hopefully he will do well it. Once he can do well enough with bottle feeding then he should be able to come home. We are hoping by the end of this week, but we will have to see how well he does. It has been so nice to sit and cuddle with him. Hopefully soon we will be able to do that with him in our own home.

Thanks again for everyone's support, prayers and thoughts,

Kai's first day in clothes