Sunday, March 22, 2015


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.