Happy October!

A lot has happened in the last month. Colton is now 10 months old!

We finally had his 9 month appointment. He is 17 pounds 13 ounces ( 17th percentile), 30 inches long (95th percentile), and his head is 17.75 inches (48th percentile). He got his first flu shot and will get the second one of the series next week. 

We had ventilator clinic at Riley on the 1st and finally switched to Colton's new vent, the Astral. We went to the clinic on the a 1/2 a liter of oxygen and came home on none! Colton loves his new vent. We have had to wean his settings twice since coming home and we are still off of oxygen. He has also been a different baby; more alert and more playful. We are loving it! And the best thing... we don't have to go back to Vent clinic for three months!

He got his new chair; the special tomato. He fits so go in it and it gives him the ability to sit up. Here is sitting in it at the table with his TLSO on (you can't see it in the first picture). Oh yeah we got that too :).  That's the second picture. 

The last picture is the TLSO. It squeezes his middle together and supports him so he can sit up. He wasn't digging it at the time, but he's only in it for one hour a day for now. 

We got his CT done and it showed that Colton's head plates aren't fused yet so the helmet that we looked into will still work. So, when we picked up his TLSO we got his second scan for his helmet.  His helmet should be here next Wednesday. He will start with wearing it one hour the first day and then we will work up to it being worn for 23 hours a day. I'll post pictures when we get it. He continues to have physical therapy and occupational therapy every month. We are getting to increase the physical therapy to once a week so that we can go to the pool more! He absolutely loves the water.   Speaking of water, we got his bath chair and tried it for the first time the other day. It's still a work in progress but we'll get it. When I have decent pictures I will post them. 

Colton had a big first this week as well. He got his first hair cut!  

We also had our dermatologist appointment the end of last month. Colton was diagnosed with eczema, which is what we thought he had. We were given a special lotion to help control the areas of greatest concern. It has helped soooo much. He isn't as itchy and scratchy anymore. 

Nick and I got to attend the March of Dimes Signature Chef's Auction this week and we had a good time, but missed our bubby. I have also been asked to be on a special committee for the March of Dimes to help with family teams and fund raising for next year's walk. Save the date!  The walk will be on April 30, 2016. We are always looking for walkers for Colton's Crew. We love the company on the walk and would always welcome more fundraisers for the mission! 

We can't wait for Halloween to come around. Colton is going to be a doggie! We are also planning his 1st birthday party. Yeah, me too.... 1 year old already?!  Time is gong too fast and he is growing and making so much progress. More updates later this month!

5 Months Old!

Once again I apologize for the long time between posts. Spring is finally here and we've been working on some things around the house. Nick and my brother Dan have been working on a new everyday table for our house. It's about done and I can't wait!  They have built it for red oak and it's extremely heavy. It just needs to be sanded, stained, and polyurethane applied. We are still debating on which stain we like the best.  Since Nick and Dan have been working on the table, Nick has been getting the wood working bug. We now have a pretty good set up in the garage with some new tools. Haha.. I now have a new potting bench and a honey do board on Pinterest!  Nick thinks I'm funny :)

Now on to why you are actually reading this blog... Colton is 5 Months Old! Here is our biggie boy....

So the last time he was weighed he was 13 pounds 3 ounces. That was about a week ago. He is totally amazing us. You can see from the pictures that Colton is starting to sit up better. He is getting so strong in his arms and legs. He now pulls things towards his mouth especially his bunny that he got for Easter. He is constantly kicking his legs. When occupational therapy was here last Monday we put him on his belly and he started pushing him self up with his arms. He now sits in his bumbo, but we have to hold his head. He likes it if you put something fun in front of him to play with. 

Here is my favorite thing that has happened in the last month!

I am absolutely in love with his smiles. He loves to look in the mirror and smile at himself. 

In the last month we had appointments with Dr. Smith the surgeon and had a visit with our Pulmonologist at Riley. Dr. Smith said everything looks good. His g-tube should last for another year or so before we need to change it out to a new tube. Nothing changed at the Pulmonologist this month. We finally got Colton's new trachs on Wednesday. We have decided to wait until the Monday before we go to Riley again to put in his new trach. I know that we are going to have to adjust his ventilator settings, so I want him to have the least amount of time possible on the wrong settings. So he gets his new trach on Monday May 18th. The goal is to be able to wean the settings on the ventilator but we can't do that until his leak is gone. So when he gets his new trach we won't be able to hear our boy anymore. Hopefully it will just be a temporary thing.  

Recently we've been having problems with our nursing care. One of our nurses that covered a lot of our shifts quit. Our company is having a hard time finding qualified nurses (RN or LPN) to work with Colton since he requires a higher level of care due to the ventilator and trach. If you are interested in helping please contact either Nick or I. 

I want to thank everyone who walked, raised money, and spread the word for our March of Dimes Campaign. Even though it was a rainy day and somewhat cold, we had a great time! As of right now, Colton's Cool Crew is the number one family team for the Fort Wayne walk!  

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.