Weekend of urgent care!

Well, it's been the weekend of urgent care. First we had Kai in Saturday for his sickness. Earlier today Levi cut his hand in 3 places from washing a vase and had to get 3 stitches for the one cut. This evening, Jace was in for pink eye. And he very much has pink eye in both eyes and it's bacterial. So he is on drops. Now Gavin's eyes are goopy and red. We just put in some drops from a previous time until we can get him into the doctor tomorrow. So it's been quite the weekend around here. I really hope that Kai doesn't get pink eye. Tomorrow is going to be a challenge to bring all 3 boys to the clinic by myself. I really hope that Gavin and Jace behave themselves. We have a really busy week this week and events planned for the weekend. Hopefully this sickness stuff will pass before then and won't interfere with our plans. Never dull around our place! I want a vacation!!

Kai is sick again! We had him into urgent care yesterday. They ran all these tests and basically came up with nothing. They did decide to put him on antibiotics just in case they were missing something. I feel so bad for him especially when he has a coughing attack. He is going back to the doctor tomorrow to follow up with his regular doctor.

Rolling

Kai has been doing rolling down the big wedge. He seems to do better for PT :) He also was doing tummy time on the big wedge. Today was the first time for him to do these things with his helmet on. The last picture is of Kai sleeping in his tumble chair while he was eating. On that note...Kai still hasn't been doing well with bottling. He is still doing baby food about 3 times a day. So far squash and pears seem to be more of an interest to him. As far as his helmet...it seems to bother him at times, especially if he has had it on for awhile.

Kai got his craniocap

Kai and Jace

Side view of Kai's craniocap

Kai wearing his craniocap

Kai admiring his hand

Kai got his craniocap today. So far he doesn't seem to mind it. He has a follow up appointment next week and then he will need to have it adjusted every 2 weeks. He needs to wear it for about 22 hours a day. Gavin and Jace are going to pick out stickers to decorate Kai's helmet. Gavin made some comment after I put the craniocap on Kai about that he can now go ride 4 wheeling ;) Kai is still battling a cold and a nasty cough. I feel so bad for him when he has a coughing attack. He still isn't bottling much, but he is taking to baby food. He gets baby food about 3 times a day. He doesn't take a lot, about a tablespoon or more. I'm excited that he seems to like the different flavors. Today he tried squash and just a little less than half of a #1 jar! I hope this will help with his weight gain. He got weighed on Monday and is now at 13lbs 7ozs.

It is nice that the weather is starting to be nice. The boys are enjoying outside time. Until next time!

Kai eating pears

5 months and pears

Kai is now 5 months old. He weighs 13 lbs 3.4 ozs. He got his RSV shot on Friday. He is doing good, with the exception that he has a little cold right now. Today he tried some pears. So this was the first time. He seemed to enjoy it. He probably ate about 1 tablespoon. It is a lot of work for him to do oral feedings. We just keep working on it.

RSV shot

Kai rolling down the wedge

Tummy time

Levi's health insurance finally approved for Kai to get the RSV shot. It has been a 2 month ordeal. They were saying that he doesn't meet the specific criteria. So Kai will get his shot tomorrow. Kai had physical therapy today. He did very well and did a variety of things today; tummy time, rolling, sitting, lifting his legs and worked on grasping at toys. I get so excited to see him do so well.

The latest at the Selly house

Jace

Gavin showing his muscles

Kai--smiling for the camera

It's been awhile since I have posted so I thought I better write an update. Kai is almost 5 months now. He weighs just a little over 13lbs. He is growing, but at the bare minimum. He continues therapy weekly. He is working with bottling, different positioning, tummy time, rolling, head control, trying to grasp at toys and looking to his left (he favors his right side). Did I miss anything in there? It's a lot of stuff that he is working on. It's very exciting to see him try new things. When he was working on rolling at therapy (he was rolling on a wedge to have gravity to help), I was fighting back the tears. We are working really hard with his feedings, but unfortunately bottling is not going very well at all. I can't get him to even take a few swallows. It makes me sad that he isn't doing any oral feedings. Hopefully with the help of therapy, he will be able to eventually do some oral feedings. We are also working on trying to diminish his overnight feeding. This is going to be very tricky. That amount somehow has to be added to his day time feedings. He is only taking a little under 3 ounces (85mls) per feeding (every 3 hrs). We also want to get away from the overnight feeding for another reason. Kai is moving quite a bit in his crib during the night and is getting wrapped in his feeding tube. One morning his feeding tube was up by his neck. I'm worried that some how it will get wrapped around him tight or get stuck on something and his button get pulled out. It just seems when we have progress, then Kai gets sick and we take a few steps back. Kai was sick last week with some kind of stomach virus. It takes so much out of him and takes him a little longer than the norm to get through it. He seems to be doing much better this week. Yesterday Kai got scanned for his craniocap. He will get fitted for it next Wednesday. He is required to work 19-22 hrs per day. He will have to get it adjusted every 2 weeks. He also met with the rehabilitation doctor. At this point there is no addition equipment that Kai will need. He will probably have to have leg splints when the time comes. This will give him a little more support since he has such low muscle tone. Otherwise Kai is enjoying watching all the kids play around him. He is a very happy and content little guy who loves to be talked to and most often will crack you a big smile!

Gavin and Jace....they fight like crazy right now. Hopefully they will grow out of it soon. Gavin will be turning 4 at the end of the month and is very excited about his birthday. Jace has been improving on his speech. Every day he is saying new words. He also has had a sensory assessment done. He does seem to show some kind of sensory disorder. He with have the early intervention OT (the same one that works with Kai) that will work with him twice a month.

Levi's work has laid off 8 guys. Levi and the rest of the guys have gone down to 40 hrs per week, 10 hr shifts 4 days a week. So right now he just work M-R. Income wise it kinda sucks...he has worked 60-70 hrs per week for the last 8.5 yrs so this is a big change for us. It nice to have him home more and the boys really enjoy it as well. And I think Levi is enjoying just working 40 hrs a week and having some down time.

A lot of people already know this but I am downsizing daycare and cutting back. It was a tough decision to make. I have decided to do this because I need more time to work with Kai on a daily basis. I have let one family go to lower my daycare numbers. My plan is to continue to do daycare with the remaining families until I am no longer needed. It will allow me more time to do some of Kai's cares. There is such much to do with him and I feel bad that I don't get to everything on a regular basis. And then I also feel bad that Gavin and Jace don't get the quality attention that they need.

One last thing...we have a new baby boy in the family! Levi's sister had her baby yesterday (17 days early!). Lots of boys!!

Kai and bottling

After about a week of trying to bottle Kai, last night I finally got him to bottle a little. He took about 5-10 mls. I was so excited! We had such good progress with bottling before he get sick mid-December and ever since then, he doesn't bottle much. Now since he has been battling a nasty cold, it has been really hard for him to bottle. It's like he doesn't know what to do with it. It makes me sad. I don't want him to loose interest in any oral feeding. We also do some oral stimulation with him as well.

Kai has some new things

Kai has some new things to work with. PT from early intervention brought a tumble chair for Kai to use and a wedge for Kai to do tummy time. She also brought a few toys for him to work with. He seems to enjoy both. He can only tolerate tummy time for a short period of time, but does well with it. He really needs to work with head control. This is going to be a little challenging since he has low muscle tone. He will be starting weekly therapy at Pediatric Therapy Services in Mankato. I'm excited for him to learn to do new things. Today, he discovered his voice and was really talking up a storm! It was so nice to listen to him.

4 months old

Kai is now 4 months old. I can't believe how fast time is going. Kai has his 4 month check up tomorrow. Right now he is battling a nasty cold and his feedings aren't going the greatest. He just a little under 13 lbs. Kai has just recently really taken an interest in his hand. He likes looking at it. Kai has therapy at Pediatric Therapy on Wednesday. I'm hoping that we will come up with a set therapy plan.

Here is a tidbit about DeBarsy Syndrome...Debarsy syndrome was first described in 1967, since that time 28 further cases from 22 different families have been reported WORLD WIDE, making Kai the the 30Th DeBarsy case on earth, That's pretty darn rare !

The latest on Kai

The genetics doctor is going to clinically diagnose Kai with DeBarsy Syndrome. There is no blood test to confirm this. She is confident that he has this by ruling out other syndromes with similar features and that all the features that he does have, fall under the features of a child with DeBarsy Syndrome. DeBarsy Syndrome "is a rare, autosomal recessive syndrome characterized by a progeria-like appearance with distinctive facial features and cutis laxa. Ophthalmological, orthopedic and neurological abnormalities are also typically present. " (De Barsy syndrome: a review of the phenotype; Clinical Dysmorphology 2008). So this doesn't really tell us a whole lot since this is so rare and there isn't that much information on it. I'm hoping to connect with some others that have children with DeBarsy Syndrome. I have been in touch with one woman from Nevada that has a 19 year old with DeBarsy. This will hopefully give us a little more insight about this syndrome.

Today he saw the orthopedic doctor for his hips. His hips are still dislocated and the only way to correct this would be by surgery. Since this can be a complicated surgery and may not benefit him, we are waiting awhile to decide what to do. He is to go back in 6 months. The good thing is that he has no limitations right now. At this appointment he also got fitted for MicKie splints for his hands. He is to wear this during the day. He also had a swallow study done. That went well and he did not aspirate. They also tried a little bit of baby cereal and he did good with that (even though it was just a little bit). This is the latest on Kai. The next major thing so far is for him to get fitted for his craniocap (at the beginning of March).

Call from the genetics doctor

Today I received a call from the genetics doctor. She believes Kai has Debarsy Syndrome. I am meeting up with them on Monday to discuss it more.

Pictures

Levi and I

Gavin, Jace and Kai with their cousins

Gavin

Jace

Kai

Update on Kai

It's been a little while since I have posted an update about Kai. Kai is doing good. Kai is weighing in at 11 lbs 13.4 ozs and is 22 1/2 inches long. Last week Kai had an echo done on his heart and a scope procedure done. We have not heard the results on those yet. On Monday, Kai had another ABR hearing test done and that came back the same as the previous time. We are waiting to hear back from his ENT doctor to see what she wants to do with him. There has been some talk about possible hearing aides, but we won't know until we talk to the ENT doctor. Today Kai had appointments up in the cities. His first visit was with the pain doctor. They upped his Tylenol (as needed basis) dose. We talked about the plan with the tramadol and going to try the same dose the next time it is needed and see how he does with it. At this point, the pain medicine is only going to be used on a needed basis. Next he visited the developmental doctor. I think this doctor was a little surprise on how well Kai is doing. Cognitively, Kai seems to be pretty much on track with a normal 3 month old. This is a huge relief! This doctor would like us to work on have Kai more propped up (in like almost a sitting position) and work with build his head control. The last and longest appointment was the feeding clinic. There Kai worked with a nurse, dietitian, occupational therapy and speech therapy. They would like us to work back into the every 3 hour feedings and start decreasing his overnight drip feeding. We are to continue to work with bottling him. He is having a swallow study done on Monday. We are to do gentle range of motion with his hands so that he can use them to start grasping. They are suggesting for him to get McKie splints for his hands. I have to talk to his orthopedic doctor about this on Monday. We will be working with a few different oral stimulation. We also need to work with positioning with him. On Monday, he goes to the orthopedic doctor for his hips. I am very anxious for this appointment. I am eager to find out what the plan is for his hips. We have also added another person to his team, the deaf and hard of hearing early intervention teacher. Otherwise right now Kai is doing good. Majority of the time, he is a happy content baby. He smiles a lot, coos and loves to be talked to.

Gavin and Jace have both started ECFE. They each have their own night to go. Gavin just loves any kind of school. He is still going to Sunday school as well. He is all registered for preschool for the fall. He will be going to Little Lambs Preschool that is at our church. Gavin loves to ask a lot of questions. Right now, he is really into the days of the week and feelings. Jace...ahhh, where do we begin with him ;) He is definitely our wild child. He is a very busy boy and keeps us on our toes at all times. We have been concerned about a few things with Jace, so we have reached out for a little help. Jace just had a sensory assessment done on him. We don't know the results of that yet. It seems that Jace doesn't know how to burn off the energy that he has. One suggestion is for him to jump on a mini trampoline. So the other day, we went and got one. He loves jumping on it. This could also be an alternative to his hard core rocking that he does. Today he had visited his regular doctor for the concerns that we have. Autism was brought up as a possibility. So we are going to be looking into having an assement done on Jace for this. Otherwise, Jace is doing good. He is learning more and more words. I think his speech has really improved (thanks Becky!).

As far as me and Levi.....well, it's never a dull moment at our house and we are wiped out!

Kai is 3 months old

Kai is 3 months old today! He is just a little over 10 lbs.

Kai's surgery

Kai and his MicKey button
Kai excited about not having a tube hang from him all the time

Kai's surgery went good yesterday. We are still working him back to his normal feedings. This MicKey button is going to be much nicer. We have to go back in 3 months to change to a new one. That's a very simple procedure and I'm assumming a very quick on as well.

Pictures from today--Me and my boys

Kai smiling!

Look at his loose skin on his back side...it kinda reminds me of a puppy

Bath time...and legs stretched out (it's not very often that he has his legs uncrossed)

How Kai is doing

Kai is doing okay. He is now almost 10lbs. He smiles, coos, looks around and loves to be talked to. After the last time he was in the hospital, we have been trying to get him back on track with his feedings. We have come to the conclusion that right now he cannot handle large amounts of feedings. So he has a feeding about every 2 hours instead of every 3. He still does his continuous feeding throughout the night.

On Friday we had an appointment with the upper extremities doctor at Gillette. His right elbow is dislocated. Also his radius bone in his right arm is shifted down towards his elbow, so it does not line up with his ulna bone. At this point, they aren't going to do anything about it. She does not think Kai needs to do range of motion with his arms because he is moving his arms fine on his own. This doctor does not believe Kai is in pain because of it and will be seeing him again in 6 months.

Tomorrow Kai is having surgery up at Children's to switch from the G-tube to the Mickey button. This will be much comfortable for Kai. So we pray that everything goes good.

On Thursday, Kai will be seeing the ENT doctor. The will be doing a procedure called a scope (I think that's what it is called). Friday he has an assessment for physical and occupational therapy at the Pediatric Therapy Services. He continues to have early intervention in home every week along with his home care nurse. She now comes twice a week and helps out with some of cares.

I will try to keep more on top with blogging. It got so crazy busy at the end of the year. It is never dull at the Selly house. Both Gavin and Jace are doing good. I think they are a little stressed by everything that has been going on. They both start ECFE at the end of January.

Until next time!