Catchup

I so feel like I'm failing this whole blogging thing. It's been 6 months since I posted and a whole lot has changed in our lives. Let's start with Colton!

Colton in his Vest Therapy

     Colton is growing up so fast. He will be 3 in December. He has gained so many new skills in the last 6 months. I mentioned last time about having the whole genome sequencing done to see if we could find a genetic cause for Colton's Lissencephaly. We had that drawn the end of March and it did indeed take a long while for the results to come back. We found out that Colton has 2 variants on the RYR1 gene. What does this mean? Well, this is the gene that is associated with Central Core Disease. Check out this link for more information. https://ghr.nlm.nih.gov/condition/central-core-disease#synonyms Basically this disorder affects muscles used for movement. The muscles are unable to transport calcium which prevents the muscles from contracting well. The problem with this diagnosis is that it does not account for the changes that were seen on his MRI of his brain when he was a month old. So Colton got another MRI done the end of June. Guess what?? They did not see any sign of Lissencephaly. He does have some decreased white matter that can be seen in kids with developmental delays, which he has. This diagnosis fits him so much better then the Lissencephaly diagnosis did. What does this change on the therapy front???

Colton at the Zoo

     Absolutely nothing! Colton has continued to receive physical therapy, occupational therapy, speech therapy and developmental therapy.  He is signing so many words now that mommy and daddy can't keep up. He is working on hold up his own head and does so for short periods of time. We are looking into other ways for him to communicate with us and make it easier for him. We think he gets frustrated sometimes since we don't know what he is saying. He is also working on moving his head without the use of his hands. He loves to be up off the floor in his stander or wheelchair. We still have the loaner wheelchair but the paperwork as been turned in for his very own chair! We are hoping to get it before he starts developmental preschool in December. AHHH!! Colton's going to school!!! I still can't believe he's starting school already. Luckily for him he will be in the afternoon class so he won't have to wake up very early. He still sleeps from about 10:30pm to 11:30am with no nap. He is so happy and has so much fun playing and "talking" to everyone.

Colton and Mommy

     Here's the update on the rest of us :). Nick is still working for Parkview Noble EMS and loves it. His knee is still bothering him and he will probably have to have surgery in the near future to put cadaver cartilage in the knee. We are hoping that this will fix his pain that he continues to have. I have been feeling much better since the last blog post. I was pretty much sick in some way or another from December 30th to the end of May/beginning of June. I haven't been sick since then (I'm finding some wood to knock on as I write this). I have started going to Integrative Medicine to hopefully help me feel better on a regular basis. I've found out a lot of things since going to them and things are going to start to get better. I am on a lot of supplements to try to get rid of some inflammation. I'm also working on some diet changes including quitting dairy :(. I'm gonna miss my cheese, but in the long run if I feel better it's worth it!

Probably the biggest change around here is that we started a home based business. We are now selling LuLaRoe! We started the end of May and are enjoying it so much!  I love seeing women feel good about themselves in some seriously comfortable clothing. If you haven't heard about LuLaRoe, let me know and we'll get you hooked up!  For those that do know about LuLaRoe, feel free to join our VIP
group on Facebook. It's LuLaRoe Christy Griggs VIP group! Here's the Link to join! https://www.facebook.com/groups/1843709425896197/#  Another big thing around here is that I no longer have a day job. I'm sure that most people know this, but thought I would put it out there. In the middle of July, I was let go from my job at Dr. Smith's office. I attempted to negotiate some of the hours that I was working and he didn't want to let me cut back at all, instead he fired me. So, I'm currently following my dream of being a stay at home mom to Colton and working our LuLaRoe business. It wasn't the greatest timing, but when is it ever?


xoxo,  Christy

Big Boy!

     Yeah! It has only been 2 months since I've been able to update the blog. A lot of things have happened in those 2 months. I ended up having bilateral carpal tunnel repair on December 30th. That was sooooo much fun. Do you sense the sarcasm??? I had to wear a brace for about 5 days after surgery so I wasn't able to do much on my own. Believe me, if you have to have bilateral carpal tunnel done, have it done 1 at a time. Here is what I looked like just afterward...

     I had to have both arms in slings for a while. This just got hot, so I went without for a while. After I took the braces off I was able to move and work pretty well. It has taken a while to recover. I am just recently able to do most of the things that I was doing before. I still have some strength issues though.  I'm sure everyone saw the picture of my new accessory that I posted on Facebook. I have a stress fracture on the top of my right foot so I am wearing a boot for 4 weeks to see if it gets better. Nothing like trading one extremity for another!

Christy's Boot

     Nick is still having some issues with his knee, but it's not getting worse. He was able to get another injection that was supposed to fix or at least help with the inflammation. He is still limping at times, but not near as much as he was before.

     Colton is doing so well!  Since my last update we met with Neurogenetics at Riley Children's Hospital. To our surprise (well not really), they do not think that he has lissencephaly. Due to his history, physical exam, and MRI. They thought he had a genetic disorder called myotonic muscular dystrophy (MMD). He fits the definition somewhat. Since he has come so far and doesn't really act like a typical liss kid, they thought this was more likely. So they drew some more blood. The first test was a CK. This tests for levels of creatine kinase. Your muscles need CK to to function. In myotonic muscular dystrophy these levels are usually very high. In typical Colton fashion, these levels were normal! At the same time they drew blood to send away to look for a specific gene called the LAMA-2 gene. This is the gene for MMD. If this gene was negative, the testing would flip over to a whole panel for different types of MD. It took about 8 weeks for these tests to come back.  Again, in typical Colton fashion these were negative! Yes, all of it was negative!

     So, while we thought we had answers 2 years ago with a diagnosis of Lissencephaly, we are back to the drawing board. There is still a possibility that he does have Liss and we just haven't found the gene for it. The more he progresses in life, the more we aren't sure thats what it is. The next step is to do a whole genome sequencing to check for other genes that we haven't though of to test yet. This test is very expensive, but we are very lucky to have it almost all paid for by insurance. We are planning on having this drawn in March when we go back to Riley for ventilator clinic. This test will take about 12 week to get back. If they don't find anything the first time, we can request to have it looked at again every couple of years as they are finding new genes all the time.

     In the meantime, we keep plugging on with therapies and new things. We recently added a developmental therapist to the mix. She is going to focus on communication and daily activities. She will overlap sometimes with his speech therapist. So for those that are keeping track Colton gets physical therapy once a week, occupational therapy once a week, speech therapy twice a month, and developmental therapy twice a month. His nurses also keep up on doing things with him when they are here as well. I can't begin to tell you have may words he can sign and the things he knows. He is starting to put signs together into sentences as well. One thing we are truly excited about is his head control. In the last two months or so he has begun to have more and more control of his head. This happened at therapy last week. He lifted his head off the ground by himself!

     We are in the process of trying to get Colton set up to go to school this fall. If you didn't know, First Steps ends when the kids turn 3 years old. I'm talking on their birthday. He then get to go to preschool. One of the things we are working on is getting him more mobile. This means that Colton is getting a wheelchair!  He was able to trial one last Monday and they were gracious enough to allow us to continue to trial this one in our home so that he can get used to it. If we figure out that he likes it and we can configure it to work for him then we will order one specifically for him. 

     Please ignore the yellow band. This demo did not have the harness in place for him so we were using it to make sure he didn't go anywhere. These pictures also do not sure the joystick he is going to be able to use to go. He really didn't want anything to do with it at his trial last Monday, but we think he will get there once he understands what it does. They are bringing the chair with all of its "fixings" on Friday. We can't wait to see what he does with it!

     We are so proud of what he's been able to accomplish in the last 2 years and can't wait to see what else he comes up with!

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!  

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! 

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!

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!

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!