Eleven Months old!

Wow, time really flies when you are busy and have a lot going on!  Colton is 11 months old. Yes, that means that in 3 weeks (from today) we will have a 1 year old. I can't believe it. More on that later, but here are his 11 month pictures.

In the last one he is holding one of his new favorite toys. It lights up and has many different colors. 

There have been lots of things going on this past month. We haven't been back to vent clinic, but we have been able to wean Colton's vent settings down quite a bit. So much so that if he weren't sick, I was thinking about trying him on CPAP where he would do all the breathing, but he would get support with each breath. That may come in the next couple of months or so.

One of the biggest focuses this month has been on Colton's head. The first helmet that was fashioned did not work out. Something happened to the scan when they were doing it. When we put it on it didn't fit right. We spent close to a day trying to make it fit. The final decision was to re-scan Colton's head and wait for another helmet. That took a week and a half. When we got the new one it fit pretty good. After a few tweaks, we left the office. Throughout the next week we worked up to Colton wearing the helmet 23 hours a day. He doesn't seem to mind it. The worst part is putting it on and taking it off. He gets it off when we wash his hair every night. He is a sweaty boy when his helmet comes off. Hopefully it will be only a couple of months of wearing the helmet and it will be all done. He goes the Monday before Thanksgiving to have his head re-scanned and we will see how far we've come. We are already seeing a change when we take his helmet off to wash his head. Here's what his helmet looks like. Right now its all white, we are working on getting it some bling.

The other thing that happened this month was that Colton had surgery. We've been waiting for this surgery for a while and had hoped that we could get it done this year. Colton's testes were not in the sac when he was born and they need to be down in the sac before he is two years old for hormone production. We were hoping that it would be the last surgery he would need to have. Unfortunately, Dr. Smith was only able to get them down part way. He had to position his testes in his pelvis and then in 6 months he will go in and pull them the rest of the way down so that they rest where they are supposed to. Colton came through surgery really well and we came home about 3 hours after the surgery. By that night he was acting like nothing had happened. We had our post-op visit last friday and everything looks great. The stitches and steri-strips that were over his incision were removed. His incisions look great! The plan is to get an ultrasound in 3 months to make sure the boys are happy and then surgery again in 6 months.

At this same time we had wanted a bigger feeding tube placed to make it easier to give Colton his blends. Colton's stomach was not big enough to hold a bigger feeding tube. So we got a replacement tube. It will have to work for now!

Halloween was so much fun! Colton was dressed as a Doggie and we dressed Marley, the doggie, as a pumpkin. I went as a witch. We had a good time trick or treating around the addition. It was a little chilly but I'm glad it stopped raining.

As I mentioned earlier, Colton is sick. About a week and a half ago we noticed that he had blood coming from his right ear. We took him in to the pediatrician's office and lo and behold he has a double ear infection. So we were hoping after 10 days of antibiotics that it would all be cleared up, but he spiked a fever Friday night when I was at work and has been pretty sleepy all weekend. So back to the doctor we go tomorrow.

We've been working with physical therapy and occupational therapy as well. Things are going good on that front and we are stepping up how often we get physical therapy. Carrie, his pt, is going to be coming once a week. Every other week we will be going to the pool and the opposite weeks will be at home. Speech is going good as well. We are going to be switching things up to better coordinate with our schedules. Instead of us going to speech twice a month, speech is coming to us twice a month. We will still go to feeding clinic once a month, but this way we don't have to drag big C out during the winter.

We are hoping this winter goes by without Colton getting sick. Next up Thanksgiving!

9 Months!

Holy crap, 9 months has flown by! I can't believe all of the progress Colton has made lately. Here are his 9 month pictures:

We weren't too happy during those pictures. I don't really have a current weight as we haven't been any where recently to get one. And I just realized that I never scheduled his 9 month appointment with the pediatrician. Oops... Better get that done!  He has outgrown his infant car seat though. So, we went car seat shopping the other day... This is what we ended up with.

He still needs some positioning aids, but it seems to fit him pretty good. It's definitely a new thing trying to get him in and out of the car. No more putting him in his seat in the house, waiting for him to get settled, and then leaving. Now we carry him out to the car and put him in his seat.

We haven't been to vent clinic since August. We got to skip a month for once! And then of course, Colton got sick. He was on oxygen for about a week and a half. He finally came off of it again last night, but then had to be on it again today for about 5 hours. As of right now he is off the oxygen again, but we will see if that lasts. We started him on Albuterol treatments every 4 hours during the day to see if that would help his breathing. We think it has.

Our biggest achievements in the last month have come on the physical therapy, occupational therapy, and speech fronts. We started doing some physical therapy at Spiece fieldhouse in the therapy pool. Colton loves it! It allows him to not have to work as hard against gravity to move his spine and legs. We are hoping to be able to do this a couple of times a month.

We are now reaching for things with both hands, switching hands with toys and being able to chose between two toys. Today for the first time, he reached for me with both hands. He is in love with his little elephant named deli. We should have his bath chair and Special Tomato in the next couple of weeks! So excited about those! We are talking so much now. Almost constantly. It's so great to hear all of the baby cooing around here. We laugh and giggle too :) 

Colton had a swallow study on September 2nd. We found out that we are making progress. We can get him to swallow when we are working on it at home, but he wouldn't do it for the swallow study. The front part of his mouth is working well, but the back part that moves food down the esophagus doesn't work well right now. To get this part to work we need to work more on his tongue and get him to use it more.  We are going to continue to give him little amounts of food on a spoon so that he can taste every new thing we give him. We are slowly working up on the food that he's been exposed to. He's getting quite a variety now!  I am still working on trying to figure out his blended diet. I bought a book that is supposed to help with figuring all that out, I just haven't had time to read through it! 

Colton also had a visit to Midwest Ortho last week. He was scanned for possibly getting a helmet to help fix the shape of his head. Here is a picture of the final scan. 

As you can see, his head is pretty narrow. This is actually pretty classic lissencephaly. The problem is that Colton's soft spot on the front of his head may be closed. If that is the case, we may  not be able to use the helmet to reshape his head. In order to see if his soft spot is closed, Colton is getting a CT on Thursday. Here's to hoping that it's still open and we can do the helmet. The other piece of equipment that was suggested is called a TLSO. Not sure what it stands for, but its supposed to help support Colton's torso so the he can work on head control. It's made of really thin plastic with a liner. Super excited about that as well. 

The big change in the house is that Colton no longer sleeps in our room in the pack and play.We were able to get the den repainted and all the furniture moved. Here are pictures: 

He sleeps so much better in his crib and in his own room. We no longer have to move him out into the living room in the morning when his nurses get here. He gets to sleep in until his breakfast. It's so much better for him. 

This month we get to see Dr. Bader the geneticist, more feeding clinic, vent clinic on October 1, and finally going to the dermatologist. Hoping that he has some ideas about Colton's skin. He is constantly itching. Should be an interesting month!