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!