Wednesday, December 7, 2016

2 years old....

     So, I promised myself that it would not be a year before I posted again, but we are almost to that point. this past year has gone so fast and yet so slow at the same time. A lot of things have changed.

     I have a new job that I started in April. I have been officially working there for 8 months. I like my job, but I work a lot. Nick is still working at Parkview Noble as a paramedic and he loves it. Things have not gotten better for us on the health front either. Nick had surgery to repair the torn meniscus in his knee and his pain improved for about 3 months, but it is now back with a vengeance. He has been told it it arthritis, but it is not getting better. Remember that I got cortisone shots in my wrist? Well, those have worn off and I am probably going to need surgery to fix them. As far as the 21 day fix went, we did great for about 7 rounds. Nick lost 70 pounds and I lost 30 pounds. When Nick had surgery, he wasn't able to do the workouts and we ran out of time with meal planning and we both fell off the wagon. I have gained about 20 pounds back and Nick has regained some as well. We will eventually get back to were we want to be, but I'm sure it will take us a while.

     But you aren't here for us, you are here for Colton!  He turns 2 years old today. When he was born, we were told that 2 years old may be the end. So, as this birthday has approached, we have both been on pins and needles wondering what was going to happen. This past year has seen so much growth and improvement in Colton's abilities we have been amazed. Where to start?

     How about we start with his lungs. If you remember Colton got a new trach. This trach has an extension built in that allows him to move his head and neck easier. This is what we think has helped him move some much more. It has however caused some granulation tissue in his stoma (hole in his neck that the trach goes through). This has caused some irritation that Colton didn't like and overtime his trach moved he hurt. It was also starting to bleed some. The first part of November, he had surgery to remove the granulation tissue and it helped for a while, but has since come back. We've been able to decrease some of his ventilator settings as well. Our pulmonologist (lung doctor) is hoping to be able to trial Colton off of the Ventilator sometime next Spring. This is scary to us because he hasn't usually wanted to breathe very well on his own. In the meantime we are working toward being able to do that. Earlier this year, Colton had a routine Echo (picture of his heart) completed that showed some Pulmonary Hypertension (he basically has high blood pressure in his lungs that causes his heart to work harder to keep up). After that echo, we put Colton on Oxygen at night to keep his oxygen saturations increased. The oxygen is supposed to help lower the blood pressure. (There is much more to this, but this a simple explanation). We had a repeat echo and met with the pulmonary hypertension team at Riley. They were encouraged by his repeat echo and we have just continued to do the oxygen at night. We actually do not have to go back to see the team again. One thing that we got out of the visit with the pulmonary hypertension team was a referral to Riley genetics. We go see them on December 16th. We are hoping they will have a way to get the whole genome sequencing done so that maybe we can get some answers as to the cause of Colton's Lissencephaly.

     On the therapy front Colton has dramatically improved. He continues to amaze his physical, occupational, and speech therapists at every session. We have changed physical and speech therapists in the last year. Both of them have seen him rapidly improve. He now rolls from side to side and over onto his tummy and  back again. He gets frustrated when he can't move his head, but even that is improving. We have seen him attempt to move his head without using his hands. He has a stander now that he can tolerate for about an hour. He will sign that he wants to stand up. Speaking of signing, we as a family are starting to learn American Sign Language along with Colton. He can sign about 10 words now including read, book, yes, more, done, play, and up. We are working on Mom, dad, and thank you right now. He is learning so much every day. He loves to read books and watch his favorite shows. He is totally enamored with Gigglebellies, Jake and the Neverland Pirates, Octonauts, and Mickey Mouse Clubhouse. We think he likes the colors and the singing. We are working with speech to attempt to get him to swallow, but it's a long process.

     The surgery Colton had to remove granulation tissue also consisted of placement of ear tubes due to continuing ear infections. As most of you probably saw, he has another one and is on antibiotics again. We are going on Friday for an appointment with audiology for a hearing test. We know he can hear, so I am not too worried about it. During that surgery he also had the nodule on the left side of his neck removed. It was starting to interfere with his trach ties and was rubbing, so we figured since he was going under anesthesia we would get it removed. Dr. Reddy did a great job. He also looked at his lungs and said they look great as well.

     We have also seen Orthopedics at Riley a couple of times this year. Colton's scoliosis has gotten worse this year so we had a special brace made to help support his trunk as he moves. The picture to the right is of his new brace. We think it has gotten better with the brace and we continue to watch it. It makes him sit up so much taller. He has also gotten new AFOs (feet braces) in the last year, as he has outgrown those. Speaking of out growing things, we were able to get a new special tomato chair. Colton has outgrown the height requirements for his previous seat. He fits soon much better in this new seat. He loves sitting in it and watching his shows and playing on his iPad.

     We had family pictures taken the first week of November and Colton did a really good job.  I think our photographer may have been a little scared of him.

We had Colton's 2 year pictures taken on Saturday and I can't wait to see how they turned out. We tried to recreate some of the ones that we took for his 1st birthday as well as some new ones. Sunday we had Colton's birthday party. He had a great time. He opened each and everyone of his presents and promptly threw his new clothes at me and only wanted the toys in typical toddler fashion! Here are some pictures from his party. 

     I will try to continue to update the blog as I can. We have so much going on in our lives!  

Wednesday, January 20, 2016

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!