Wednesday, December 30, 2015

Colton is 1 year old!!!

Wow, time really flies. I can't believe we have a 1 year old in the house. Colton is getting so big and has come a long way in a year. The picture on the left is when he was just born and the one on the right is his one year picture. He has changed soo much!

At his 1 year appointment on December 8th, he weighed 20 pounds 4 ounces and was 32 inches long. A lot has happened over the last month and a half. I mentioned in the last post that Colton had spiked a fever and we were going back to the doctor. Well, he still had his ear infections so we got a different antibiotic and they finally went away. 

Thanksgiving was a good time with my side of the family. We were able to get together and eat some great food and place a very bad game (Cards against Humanity). Here are pictures of Colton in his 1st Thanksgiving outfit...


Nick and I were able to do some Black Friday shopping thanks to my parents and Kirsten, our night nurse, volunteering to work that night. We were able to get 99% of our shopping done by doing that. 

Next up was Colton's 1st birthday party!  We had a blast and he had a great time too! Here are some pictures from his party. The cakes were done by a nursing friend's daughter. She did a fantastic job!

Colton's Smash Cake
Big People's Cake

Here is a video that was taken of us singing Happy Birthday to Colton. He was doing a fantastic job sitting up in his special tomato!

Colton was blessed with a ton of gifts for his birthday! We want to thank everyone who was able to make it to share in his special day. We appreciate it so much and he had a great time seeing lots of new people! If you check out my Facebook page, we made a video of Colton's first year and it is posted for everyone to see. 

We took Colton to see Santa Claus at Jefferson Pointe this year. The Santa was wonderful with him and knew just how to hold him. Colton is so in awe of his beard!

After we saw Santa we went and watched the Christmas tree that is synchronized to music. It was a neat show. 

Colton got to have two Christmases this year. On Christmas Day we went to Nick's side of the family to do some present opening and brunch eating. Here are some pictures of Colton opening gifts. 

He loved pulling the wrapping paper off the presents. He was pretty tired after all the opening though. He got a lot of new toys and a few books to read. 

Then we had Christmas with my side of the family the next day at our house. He got a ton more presents, including a new iPad holder! This will allow him to start working on some fine motor skills with his hands and be able to choose between things and eventually talk to us through an app. He also got a lot of new clothes that he needed since he is now in 18month clothes! 

Colton and his new iPad holder

Now on to the other stuff. Colton has has a a few appointments in the last month and a half. On December 4th we got another scan of his head to see where we are with the helmet process. He has made some progress, especially in the back of his head. We have another scan on January 6th. We are secretly hoping that we are done with it soon. We went to the eye doctor again and he was able to tell us that he thinks Colton can see (which we already knew). Colton still does not track with his eyes. We got back to vent clinic on January 7th. We are thinking there may be more changes in store for us then. 

He continues to do well and make progress in PT and OT. We are now getting to go to the pool every other week, which Colton thoroughly enjoys! Here are some newer pictures at the pool. 


He is now pulling our feet up to our mouth and trying to stick it in. Colton has also discovered that if he pulls on his helmet, he can make his head go where he wants it to go. He trades things between hands and if he puts something somewhere, he remembers where it is and gets it later. 

Lastly, I can finally announce that there is a big change coming to our household. I am changing jobs. I have taken a position with Dr. Smith, the pediatric surgeon. I will get to assist in surgery and see patients in the office and many more things. I am excited about the opportunity and chance to learn some new things!  I won't start until April as I have to give a 90 day notice at my current job. I am sad to leave Parkview, but I need a change. 

I am not sure how posting is going to occur from now on as Colton is a year old. I am going to try to keep up with every month to 2 months as things occur. They may not be as long of posts, but I can guarantee there will be pictures! 

Sunday, November 15, 2015

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!

Thursday, October 8, 2015

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!

Tuesday, September 8, 2015

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!

Friday, August 14, 2015

8 Months!

Yes, Colton is 8 months old. I can't believe it. A lot has happened in the last 2 months since I've had the chance to post. Here are his 8 month pictures that mommy and daddy took in the living room.

He is so big!  He was weighed at his neurology appointment appointment yesterday. He is  16 pounds 9 ounces and 29.5 inches long!  Only a 1/2 inch more and he will out grow his car seat!

Since the last post we have been to vent clinic twice, Dr. Smith, had Colton's bronchcoscopy, Orthopedics and on vacation for 10 days!  We are tired!

Vent clinic went well in July. We ended up given Colton a new trach as we felt like the one that he had (4.0 neo shiley) was too small. Colton got a 4.5 pediatric Shiley. This trach is wider and longer. He loves it!  He is tolerating the ventilator wean well and we are hoping that we will be able to wean it further when we have our next ventilator clinic appointment. He continues to be off of oxygen.

His bronchoscopy was done on July 29th. The procedure lasted about 30 min and Colton had to be put under anesthesia for the procedure.  We weren't too thrilled with the anesthesiologist that did it, but everything went well. Dr. Reddy looked at his trachea (windpipe) and said the trach that we are using is a good one for him. He would prefer that we not use a cuffed trach again as it can cause too much damage to the trachea. He also said that we could go up a size to a 5.0 if we truely wanted to get rid of the air leak. Not sure how I feel about that.

Vent clinic yesterday was great. We finally have the right trach for Colton. Dr. Cristea didn't think we should go up to the 5.0. We weaned his ventilator rate down to 20 and his peep down to 6. Yeah!!! Finally some movement in his ventilation. And we are going to get our new ventilator! Since our home care company has the Astral ventilators and the trial is done at Riley, we are going to get our Astral and put Colton on it at our next vent clinic visit, which is in 2 months!

Orthopedics was on August 4th. Dr. Kishan said that Colton's feet look really good and he no longer has to wear his shoes. Haha... he hasn't been wearing them in months :). We were able to donate them back to be sent to someone who can use them. He does want to keep watching his spine and bones as he grows. Since he doesn't move entirely, he is at risk for having brittle bones. We are going to start giving him more Vitamin D to help with that.

News on the PT/OT/speech front... Colton is getting stronger and stronger. He pulls his legs up and moves his hips. He is grasping toys and loving to shake them, especially his new rattle that grandpa got him. We have also ordered a new seat for him called a Special Tomato Seat. Here is a link to see what we are getting him!  Special Tomato  So excited to see how he does with this!

We are starting to feed him regular food. He loves his rice cereal. We have been able to give him a few tastes of cereal a couple of times a week. He has also had tastes of oatmeal, sweet potatoes and carrots. He is swallowing more and more, so much so that he is going to be getting another swallow study sometime the end of the month to see if we can do more. In the mean time, we are going to be introducing more food through his g-tube and eventually transitioning to a blenderized diet so that he gets real food and not formula. That is mommy's next big project.... trying to figure all that out! Luckily, I have some great resources including a facebook group and a friend at work whose son is on the same diet.

Vacation was a wonderful thing. It was a good time to get away. We went to Montana to visit my best friend. Marylou and her family were very hospitable. We drove the entire way. Colton did excellent in the car. He did end up back on oxygen during some of the trip due to the altitude in Montana. We spent a day in Glacier National Park. Here are some pictures from our trip.

We have been working on a couple of new projects around the house as well. Nick made us a set of Colts corn hole boards. We got to play with them last weekend when my family came over for some family fun.  Here is a picture of those!

We have also been refinishing a dresser for my craft room. Nick found this dresser on facebook and bought it for me for $45. We sanded that whole thing down, took some of the drawers out of the bottom and added some boards on the bottom to hold baskets. We painted it a bright color and are now in the process of looking for pulls and knobs for it. We found crystal knobs at Anthropologie when we were in Indianapolis yesterday. Still looking for the pulls though. Pictures to come when it's finished.

Our next big project is moving Colton's room. Right now his room is upstairs and ours is downstairs. We are moving his room to be in the den so that he can be on the same floor as us. We are going to re-paint the den to match what his current room looks like. Can't wait for him to be able to sleep in his own crib instead of the pack-n-play that he's been in since he came home from the hospital.

I know this post is getting long, soooo  until next time!

Wednesday, June 17, 2015

Half Birthday!

I can't believe that Colton is 6 months old already. Time really flies. It has been a while since I posted. I meant to post the night after his 6th month appointment on the 8th. Things have been crazy busy around here. Here is what our big 6 month old looks like:

Like I mentioned earlier, we had his 6 month appointment on the 8th. Colton weighed 14 pounds 2 ounces (3rd percentile), length was 27.5in (84th percentile), and head was 16.5in (12th percentile). At least his weight is staying on the same curve. His length has slipped slightly and his head is growing. For that we are grateful. 

Poor boy had a very busy day of appointments that day. We also saw the eye doctor again and we went to our appointment with Dr. Reddy the Ear, Nose, and Throat doctor. The eye doctor looked at Colton again and was impressed that he made facial changes when he was looking at me. He still does not track, but he does react to what he sees. He wasn't able to tell us much more than that for now. 

The big appointment of the day was going to see Dr. Reddy. We wanted him to take a look at the growth on the side of Colton's neck. We were initially told that it was a bronchial cleft and that it would have to be removed at some point because they always get infected. Well Dr. Reddy took one look at it and said that it isn't a cleft and that it's more then likely just like a big skin tag and that we could have it removed if we wanted to but that it shouldn't cause any harm since it wasn't in the path of any nerves or vessels. Some good news!  We also talked about the fact that Colton's trach is too small and that he didn't tolerate the bigger one that we tried. He agreed to do a bronchoscopy on Colton. Colton will be put under anesthesia and Dr. Reddy will insert a camera on a long tube down Colton's airway to look for any abnormality in the airway. This should give us a better idea of why he didn't tolerate the new trach and possibly why he even needed to be given a trach in the first place. We have to schedule this procedure yet, but I'm hoping it will be sooner rather than later. Colton needs some answers! 

Since that day, we have been lucky enough to hear our boy talking and singing along with me. He has had some great days lately. He's done some new things with physical therapy as well. See.....

He is putting more weight on his feet. When he's laying on his side, he will try to push himself over to his belly. He also has been pushing up on his feet and trying to get his hips away from us when we are trying to change his diaper. Progress! 

We are excited about Colton's progress lately. He has been having some bad days as well. His top 2 front teeth are on their way to coming in and he's been miserable. Tylenol has been his friend the last 2 days. Hoping he gets over this soon, we are going on vacation!