When life gives you lemons....

Make Lemonade!    

Ok, yes I know its a cheesy saying but that how I've felt the last month. The last 3 weeks have gone by in such a blur. We have been so busy between appointments, Nick and I getting sick and starting a new meal and workout plan. So here goes,

The first week of January consisted of multiple appointments for just about everyone, except for Marley the dog. Nick and I both had orthopedic doctor appointments. Nick's was for his elbow that had been bothering him for many weeks and min was for the ever present carpal tunnel syndrome in my wrists. We figured that Nick would be getting a cortisone shot in his elbow, but what was up in the air was how they were going to fix mine. We were correct and Nick did get a cortisone shot in his elbow and so far that has made the pain better. My appointment went like this.... I got shots about 7 or 8 years ago and they lasted me this long. I could get the shots again or do surgery. Shots had the least amount of recovery time and cost less. If I did the surgery he couldn't do both wrists at the same time so I was looking at being off of work for about 6-8 weeks. Not something I could afford to do at this time, so..... cortisone shots it was... so far they have worked great. I'm not dropping things and I can actually grip things. Then the next Tuesday night Nick was complaining about his knee and I made him go to the walk in clinic. Well, that turned into another Orthopedic doctor visit the next day. This one may be a little more tricky. The current theory is that he has a meniscus tear. They gave him a cortisone shot, but if it doesn't get better in the next week he may need to have surgery. That is not something that he's looking forward to at all. We are hoping the cortisone works, but surgery is in the back of our minds.

Colton had another ear infection. (If you are counting, this is #2). He has finished his antibiotics for that and seems to be doing well. On the 6th, we had another scan of his head for the cranial remodeling helmet. We were pleasantly surprised that he no longer has to wear the helmet!  So happy!  He will have a final scan of his head on February 3rd just to make sure that nothing has moved and we are still in good shape, haha. Then on the 7th we went to Indianapolis for Vent Clinic. Colton had such an air leak around his trash that we were getting alarms on the vent saying that the air it was putting in wasn't coming back out. So Colton got a new trach! We didn't put it in until Monday evening and then noticed that the air that was going in was way too much! We had to decrease his vent settings even further. He is on such low settings that if he were in the hospital we would try to take the ventilator away, unfortunately Colton does not like to breath on his own so for now we are stuck on very low settings. We don't have to go back to vent clinic for 3 months!

On the 14th we had our neurology appointment and she says everything looks great. She thinks Colton is progressing wonderfully. She did pull up his MRI for us to look at and she says that she thinks he has moderate Lissencephaly. She also said that doesn't have any bearing on how he's going to do in the future. She has seen kids that have a worse looking MRI that do a lot and then she's seen kids that have a better looking MRI that do a lot less than Colton does. Best part of the appointment? We don't have to go back for a year!  Yeah for cutting down on the appointments and travel!

As I mentioned above, Nick and I have both been sick. We seemed to have gotten it about a day apart and I got it worse than Nick did. I ended up going to the Walk-in Clinic and was diagnosed with a Sinus infection and was put on antibiotics. So far, Colton hasn't seemed to have gotten what we had, for which we are very grateful.

Here are a couple of new photos of Colton!  Thank goodness he is getting his hair cut on Friday!

When we were in Indy on the 7th, we ate a The Cheesecake Factory and let Colton have a piece of hard bread....

I mentioned starting a new meal and work out plan.  Nick and I started doing 21 day Fix on Monday. It's a program by Beachboy that teaches you portion control and gets you moving. We have a meal plan for the week (that took 5 hours to put together) and a workout for each day. So far, so good. we are both sore but not hungry!  We took before pictures so when we are done, maybe I'll post them! Hope everyone has a good week!  

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!

Disappointment

The last 3 weeks have flown by. We have gotten the table finished and put in the house. Nick and Dan did a great job building it.  We absolutely love it. We have yet to eat on it, since I think we are afraid that we will ruin it. We also need to purchase some chairs, but we can't decide on what we want.  Here's what it looks like in our nook for now.

Since we've had some decent weather, we did some things outside. Nick put together our first ever raised garden with some left over fence posts from when our fence went in. We planted two tomato plants and 3 green pepper plants. Can't wait to see what we get from them! Of course there's Marley in the background!

The last 3 weeks with Colton have been pretty eventful. I mentioned in the last post that we had received Colton's custom trachs and we were waiting until the Monday before our Riley appointment to put it in. We tried..... it didn't fit!  So, when we went to Riley on Thursday May 21st, we took all of the various trachs that we had with us. When we were there, they decided to try a 4.0 Pediatric Bivona with a cuff. This cuff is filled with water to make it a tighter fit so that he gets all of the air that he needs. It fit perfectly! We got a chest x-ray to make sure it was in the right place and it was. We also had some labs drawn to see if we could wean some of his ventilator settings. Everything came back good and we were able to wean his ventilator rate (the number of breaths he gets per minute) to 26 from 30. 

While this all sounds like some good news, it ended up not being a long term thing. Colton really doesn't like change and he showed us how much he doesn't like new things. By Saturday the 23rd, he was back on oxygen. He wasn't acting like himself and his heart rate was staying way to high. We were also having to suction his airway a lot more than normal. My parents were saints watching him through all of of this as Nick and I were at work.  That night we called Riley and talked to the on call doctor and he told us to take the water out of the cuff in case it was irritating his airway. We tried that and it didn't make a difference. So we ended up changing his trach back to his original 4.0 Neo Shiley without a cuff. When we went to do that, we noticed some green drainage on his dressing and it smelled terrible. It smelled like an infection.  Sunday Colton was back to himself, interacting and raising his eyebrows at us. He was also making sounds at us again. This is what we looked like with our old trach back in. 

On Tuesday we called Riley again and talked to our normal doctors. They ordered us an antibiotic that goes into his trach. He gets it 3 times a day for 10 days. So far he seems to do ok with it. His drainage is getting less and less and no longer smells. So thankful that we have avoided an admission to the hospital with this first infection. We are disappointed that his new trach didn't work because we wanted to wean his settings. This is all leading to an appointment on June 8th with an Ear, Nose, and Throat doctor. We originally set up the appointment to have them look at the cleft on the left side of his neck and see if we need to do something about it.  We are planning on asking them to do a bronchoscopy (putting a camera on a tube down in his airway) to see why his new trach did not work. We have a feeling his airway is not made correctly. 

Colton will be 6 months on next Saturday. It's his half birthday!  I can't believe that he is getting this big. I recently got to see a baby that was born pretty close to when Colton was born. Seeing that baby made me sad. She was smiling, cooing, and wanting to sit and stand on her feet. Colton doesn't do any of those things.  It made me realize just how far behind Colton is. I knew he was behind, but to have it put right in front of me made it more real. I love my son just the way he is, but if I was presented with a cure for this I would take it in a heart beat. This is not fair to him. I leave you with a couple of pictures of my sweet boy.