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!

Productivity

I apologize for the long time between posts. We have been very busy between me going back to work and all of Colton's appointments. I will try to get ya caught up.

The biggest thing that has happened in the past month is that Colton's Medicaid was approved! We kind of found out by accident. I received a phone call from our home care company asking for our work letters to send in explaining when we work. We are excited that we now qualify for his home nursing and won't have to pay out of pocket for it. We had to call all of his Doctors and give them his number so that everything can be put through Medicaid to get the rest of his bills paid for. The waiver was applied for on March 2nd. That is supposed to take 1 month to go through.

Colton turned 3 Months on March 6th. We had his 3 Month pediatrician appointment on March 9th. At that appointment he weighed 11 pounds 9 ounces which is the 5th percentile. However, his length shot up to 25 1/4 inches which is the 90th percentile. His head is 15 1/2 inches (25th percentile). His pediatrician appointments some how got scheduled funky so he got his 4 month shots at this appointment and we go back April 6th for his 4 month appointment. Here are his 3 month pictures :)

We had an appointment with Dr. Khan, his neurologist on February 24th. She is glad that he isn't having any seizures. She is also happy that his head is growing so far. I tried to pin her down and get her opinion about Colton's Lissencephaly diagnosis as to whether it is mild, moderate, or severe. She wouldn't really give me an answer. She did give us referrals for the eye doctor and for orthopedics for Colton's feet. We went to the eye doctor on March 2nd. He basically said that he couldn't really tell anything since he's so young. He did dilate Colton's eyes and said that he is far sighted, but that was about it.We will go back in 3 months for another check up. I will tell you about the orthopedics visit later.

We also saw Dr. Ghazali, the cardiologist on February 25th. I really like that man! On the last echo that was done before we left the hospital Colton's atrial septal defect (ASD) was really small. The other thing that they noted was that Colton's pulmonary pressures were ok. Those are measurements of the pressure of the blood in the vessels going to the lungs. Sometimes those can be high in babies with lung issues. We go back to Dr. Ghazali in August. 

Occupational therapy and physical therapy have continued to come and work with Colton on a weekly basis. They are giving us so many exercises to do with Colton to increase his strength and motion. We went and bought an exercise ball to do some of his exercises on. He seems to like those. 

Last Tuesday we made out first trip to Riley Children's Hospital in Indianapolis for our first visits with a pediatric pulmonologist (lung doctor) and pediatric orthopedics (bone doctor). It was a very long but productive day. First up was pulmonology. I'm not sure if I mentioned in another post, but we had problems with the doctor that we were seeing here in Fort Wayne so we requested a change. Boy are we glad we did! Dr. Cristea is wonderful. She listened to what we had to say and looked at Colton. We tried to give him a bigger trach while we were there, but the one they wanted would not fit. We are going to try a cuffed trach to see if we can get rid of the leak around the one that he has. As of now we can hear him crying up stairs when he is down stairs. With the cuff that will be gone :(  We won't be able to hear him anymore. That makes us sad. But, in the long run, it should help us be able to wean his ventilator. Another big change that is coming is that we have to change his ventilator. Right now he is on a Trilogy ventilator. It is so easy to use and is very portable. We are going to change to the LTV because Riley has no experience with the Trilogy. This does not make us very happy, but it is supposed to be a short lived change. Riley is going to be trialing a new ventilator called the Astral in a few months and we should be at the top of the list to try that. It's supposed to have a built in pulse oximeter so we would have one less piece of equipment to carry around. We are excited about that part. While we were there she requested that we have another echo to look at those pulmonary pressures. We also had some labs drawn while we were there. I got a phone call the very next day telling me that Colton's labs were great and the echo was perfect! Yeah for some good news! We will go back to Riley on a monthly basis for ventilator clinic. When we were there Colton was weighed and we found out that he really hadn't gained any weight in the past 3 weeks and had actually lost a few ounces. Dr. Cristea requested that we talk to the nutritionist. She came and saw Colton and gave us the recipe to make his formula 24 calorie. Since we've been doing it, he seems to have more energy. 

The next appointment was with Dr. Kishan the orthopedic doctor. He took one look at Colton's feet and said that they are not club feet. He thinks they are just positional from the way he kept them while in the womb. So we got Colton some new shoes. Here's a picture of his new sandals.

The bar between his feet is only on at night. The shoes themselves are on for 23 hours a day. He's had them on for less than a week and we can already see a huge difference in the way he holds his feet and how much more flexible his legs are. We go back to see Dr. Kishan in 3 months. 

Another excited thing that is happening around here is that we have formed a team for the March of Dimes walk for Babies. We are called "Colton's Cool Crew." If you would like to join our team of walkers or donate toward our team I have added a link on the right side of the page for you to be able to do either. We appreciate everything everyone does for us. 

Two Months!

Our little man turned two months old on Friday. We had our selves another photo shoot...

 This is my favorite one!

Weight: last time he was weighed he was 9 pounds 12 ounces.

Likes: Music, my bath, and people talking to me, especially my mommy. 

Dislikes: Wet and dirty diapers, getting new clothes on. 

Over the past week or so Colton has been moving more and interacting more. He really likes to have people in front of him and talking to him. He has the greatest facial expressions. He likes to lift his eyebrows and make his eyes wide open when he likes something. This week he will start occupational therapy and physical therapy. These are being done through first steps. They are coming twice a month each. We also got a speech evaluation done this past week and they are recommending speech once a month for now. Last night we tried a formula soaked mouth swab to see what he would do. He loved it! He went to town on the swab and even tried to swallow which is something that we haven't really seen much of. We are also hearing more crying when he gets upset. It's kind of cute :) 

Yesterday we ventured out into the real world and not for a doctor's appointment. Nick and I took Colton to the baby fair at the Coliseum. We got to see some friends and talk to some new people as well! It was a good time getting out of the house. Last night we had family over to celebrate my brother's birthday and Colton was loved on. Today we had some friends come over and do Colton's newborn pictures. He tolerated everything so well and we can't wait to see the final products! 

Quick Update

Colton had surgery this morning for his tracheostomy and feeding tube. He also had a nissen fundoplication done. See more about that Here. He did very well during the surgery. The surgery was supposed to be done laproscopically, but when the surgeon went to try to move Colton's liver it didn't cooperate like it was supposed to so he had to make a bigger incision and open Colton's belly to do the surgery. The surgery went great from there on out. The entire surgery took about 2 hours to do. When Colton got back to his room he was very sleepy. They put him on a fentanyl drip to help control his pain. He pretty much slept the whole day until about 7 pm when he started to wake up a little bit and get his characteristic scrunched face and kicking his leg.

Now we are going to try to see if we can get Colton off of the ventilator or at least get him on the lowest settings that we can. In a couple of days we will start Colton back on feedings and hopefully get him off of his IV fluids. We are hoping that we can get him home in the next week or two. We have been working to get set up for home care and get all of his equipment in order. We are sure the first couple of weeks when he comes home are going to be full of adjustment and changes, but we can't wait to have our baby home.