sMiles 4 Sammy

Saturday morning we loaded up the whole family and headed to a high school just down the road to join in the sMiles 4 Sammy Family Fun Run.

 Let me just preface this post with a few things.... Noah is not an easy kid to take anywhere. Noah usually does not like to go anywhere. He spends a lot of time at home which makes me sad that he "misses" a lot of fun things but I know that he would not really, truly be having fun anyway. He likes to be at home where things, people, sounds, and smells are familiar. He has terrible anxiety which manifests itself as gagging, retching, and vomiting.

That being said, we were very prepared for the worst. We put extra blankets in the car because the car is his favorite place to throw up. We didn't give him his morning feeding so that his belly wouldn't be too full in case he did throw up. We were anticipating it and ready!

I am so proud to announce that Noah DID NOT throw up at all! He did awesome in the car and listened to his music. And he absolutely loved all the noise and excitement at the race. There was a DJ playing really loud music with lots of bass which Noah got a kick out of. Even though we were late for the actual race and it was really hot (and Mommy forgot sunscreen, shame shame) we walked as a family around the track and Noah was smiling and laughing the whole time.

They had a table set up with pictures and stories of all of the sMiles 4 Sammy Families. Here is the story that I wrote to go with this lovely picture.

This is the story of a little boy that we call a Miracle. Noah Jack was born four weeks premature on July 11^th, 2012. He was in respiratory distress and immediately taken to the NICU where he would stay for the next eight weeks. During that time it was determined that he needed a tracheostomy to breathe and a g-tube to eat. Then we were sent home with 24/7 nursing care and referrals to therapy services.

At first we thought his delays stemmed from a combination of being premature, going through multiple procedures and surgeries, and staying in the NICU with minimal stimulation. He continued to receive physical, speech, and occupational therapies but by six months of age it was apparent that he was very, very behind developmentally.

We took Noah back to his neurologist that did his initial brain MRI when he was in the NICU. The doctor ordered another MRI and some genetic blood work. The genetic testing came back negative for everything but the MRI showed something very interesting. It revealed that Noah had an abnormal amount of white matter, or myelin, in his brain.

Myelin is a fatty substance that coats the nerves in the brain. Without it, it is very much like an electrical wire without proper insulation. The messages to and from the brain sometimes “leak out” and don’t reach their proper destination. This affects everything from his head control and vision all the way to his vocal cord muscles, which is why he needs the trach to breathe. This lack of myelin fits under the umbrella of a group of diseases called Leukodystrophy, and the specific one indicated by the radiologist is called Pelizaeus-Merzbacher Disease (PMD).

This diagnosis needed to be confirmed with a very specific (read: “expensive”) type of genetic blood test. The results came back that Noah has a point mutation on the PLP1 gene which is associated with PMD. But because Noah’s specific mutation is the only one reported in the whole entire world they can only be 99% sure that he does in fact have PMD.

After his final diagnosis we felt a mix of emotions. We felt relieved to know finally after 10 months of being in the dark. We felt hopeful that now we would know how to better help him once we understood. We felt sad that this was not something he would “grow out of” as he will most likely need his trach and g-tube for his whole life. We felt scared to see what the future holds for Noah and how hard this disease has and will affect his body.

Noah is now 22 months old and as we approach his 2^nd birthday we are so grateful that he is still here with us and staying healthy. He works hard every day to do things that everyone else in the world takes for granted. He is learning to roll on the floor as well as play with some toys and his iPad. Last week he started splashing in the bath tub. These are all things, along with many others, that doctors will tell you that children with PMD cannot or will not be able to do. But Noah is here showing everyone the things he CAN do and that is our Miracle.

I  also got to see a family that I met over a year ago at the Dell Children's NICU when I went to meet with them before their baby had a trach surgery. They are also a part of the sMiles 4 Sammy Family. And here is a picture of Noah with Sherlynn Scott who is Sammy's mom and founder of sMiles 4 Sammy.

We had a great time as a family and it definitely opened my eyes to the possibility of being able to take Noah more places because he did so great!

Ready For The Weekend!

Sorry it's been a few days between posts. Not much has gone on around here. We are just spending the week relaxing to gear up for our super busy weekend ahead. Nathan went back to work last night after spending 6 weeks off for his paternity leave. Things went fairly smoothly with the kids so I'm hoping the trend will continue.

I got a call yesterday from Noah's pediatrician. She had spoken with Noah's neurologist about the seizure he had a few weeks ago and he decided to increase Noah's medication. Hopefully that will keep Noah seizure-free like he had been for the last year.

This Saturday we will be taking the whole family, Noah included, to a 1K walk, run, jog, and roll hosted by sMiles 4 Sammy. We got hooked up with this wonderful organization through the Palliative Care team at Dell Children's last year. They were so wonderful and made us a gift basket with some awesome gifts for our whole family. They are just the sweetest, loving, Christian family and the story of their sweet Samantha touched my heart. You can click here to visit the sMiles 4 Sammy website. I will write another entry about the race on Saturday. I am hoping that the rain will steer clear of our area until the afternoon so we can enjoy the morning outside!

Then on Sunday, we will be celebrating my Great Grandfather's 91st birthday. Yes, 91! We are having an early dinner at The Salt Lick restaurant followed by a Round Rock Express baseball game. I am so excited for Oliver to see his first baseball game! We have a few lawn tickets so he will have plenty of room to run around.

Today I have the fun task of heading to the courthouse to pick up Savannah's birth certificate. We ordered it online shortly after she was born but for some reason we have yet to receive it and it needs to be turned in by June 13th in order to get her added to our insurance. The deadline is approaching quickly so it needs to get done before we forget and run out of time!

That's all for now. See y'all tomorrow!

Mr. Noah

I think it's about time for an update on Mr. Noah.

We made it through the winter with ZERO hospitalizations or illnesses! That is a major accomplishment for a kid with a trach. In fact, it's been over a year since Noah was in the hospital at all, minus when we went for his surgery over Thanksgiving break, which I now realize I never even wrote about. Oops!

In November Noah had his adenoids removed and Botox injected into his salivary glands by a wonderful ENT doctor at Texas Children's Hospital in Houston. It was a relatively quick out patient procedure so we drove down the day before and spent the night. Then we got up early the next morning to get to the hospital and we were headed back home by around 1pm. The surgery was without complications and he was only back in the OR for maybe an hour. It was so fast! Afterwards he was in a good amount of pain I'd say so he basically cried for the entire 3-4 hour trip home. That part was rough. But he recovered really well in the end.

Then about a week after his surgery he started vomiting which was something very new and different for Noah. Vomiting is very dangerous for someone with an unprotected airway like Noah has. When a healthy person throws up, their vocal cords close off the passage into the lungs. But with Noah who has floppy cords, they don't always shut properly which puts him at a greater risk for aspirating his stomach contents which can lead to an infection in the lungs like pneumonia. Pneumonia is especially dangerous for Noah because he has PMD. PMD causes weak muscle tone so it is harder for the lungs to squeeze out and cough up all the mucus that gets stuck in there from an infection. Respiratory illnesses are one of the leading causes of death in PMD patients. Needless to say I am terrified every time Noah gets sick which is why I work so hard to keep him healthy. Anyway, back to the vomiting... Hooray!

So after the surgery Noah started with this throwing up business. I tried every single thing I could think of to make it stop. I would tweak his feeding times or feeding volumes or whatever else I could think to do. And sometimes it would work for a few days at a time and then he would go right back to throwing up. After a few months of this I finally had to resign myself to the fact that Noah is just going to throw up. I also had to explain to his nurses that this is just his new 'normal.' There is nothing wrong with him, he's not sick, he doesn't have reflux, he just vomits.

Sometimes it is due to anxiety. Every time we get into the car with Noah, he throws up within the first 5 minutes. If he is too over stimulated he will make himself throw up. It is something he can do and something he can control. I relate it to a child throwing a fit that will bang their head on the wall. Yes, it hurts and it's not fun. But that is the only way that child knows how to express himself at that moment when he feels very out of control. The same thing happens for Noah. Throwing up is not fun. It is messy and stinky and occasionally requires us to do trach care AGAIN if he gets throw up on his trach ties or dressing. But that is his way of telling us that he is upset or doesn't like something. We are working very hard on other ways of communicating but it is a slow process.

Some days he does great and he doesn't throw up at all! Other days we are constantly on our toes because he is gagging and retching all day and we are just waiting for the throw up to come. But it's just one of those things that we have to deal with now and we are all getting better at reading him and learning his cues as to what will set him off.

Within the last two weeks Noah has been showing some signs of seizure activity. Noah is on a medication for seizures called Trileptal. He has been taking it for over a year now and we haven't seen anything remotely seizure-like since then. But a little over 2 weeks ago he had a big break through seizure. Our nurse for that night was out sick so it was only Nathan and I here when it happened. And it was scary. Initially I didn't really know it was a seizure and since he doesn't have them like ever it honestly didn't even cross my mind that he was having one until it was already over. Let me just say that it is not a fun experience to see your child with an unresponsive stare and have their face turn purple for 30 seconds because he stopped breathing. We gave him some oxygen and eventually got him to calm down by holding him and rocking and singing his favorite song, "Twinkle, Twinkle, Little Star." Then he fell alseep hard for the next 5 hours. That is called the postictal phase. During a seizure, the brain and every muscle in the body are working in overdrive so it is very normal for the person to fall asleep or be very "out of it" after the seizure is over.

Since then, he hasn't had anymore episodes of that magnitude but we have noticed a few different things that could definitely be associated with seizure-like symptoms. Luckily we already had an appointment with his neurologist scheduled for the beginning of June. I'm not really sure what the doctor will want to do at this point but I'm at least glad for the opportunity to speak with him face-to-face again. I think it's been about a year or close to that since we have been to his office.

Other than those few things, Noah is doing great! He is really coming along with all of his therapies. He is doing really well learning how to roll from his side to his back as well as learning how to activate his toys more consistently. We are also working with him on making choices. When we ask him what movie he wants to watch we will hold up two movies, one in each hand. We show him both movies and which ever one he looks towards is the one that we will put on for him. Eventually I want to have pictures printed out of the things that we do almost every day so we can show him the pictures and let him decide. For example, have a picture of his wheelchair and a picture of the couch and let him decide where he wants to sit. I am really hopeful that this will be a good way to communicate with him or at least be able to give him some control over what he wants to do.

He is also turning out to be an excellent big brother. When we first brought Savannah home, Noah wasn't too sure about her. He usually made what I call his "sour pickle face" whenever she was near him. But now I will lay the baby in bed with him or next to him on the floor and his face just lights up! I can tell that he loves her so much. It really is the sweetest thing to see.

That's all for today. See y'all tomorrow!

On A Roll...

Today I was able to sleep in until 8:30am! Oliver didn't wake up until after 9 so we just hung around in our jammies for awhile. Around noon we were all dressed and ready to go to the park.
Nathan and I took Oliver and Savannah to a neighborhood park that has lots of nice shady trees and a canopy over the playscape so it doesn't get too hot. Oliver made friends with another little boy, as always. They ran around playing chase and shooting aliens with their "guns" made out of sticks. I sat at the nice gazebo and fed a hungry little Savannah the whole time. That girl can eat!
After an hour we left and headed to the grocery store to pick up a few things then headed back home to meet with a new nurse. I almost always request a "meet and greet" with a new nurse before their first shift these days. I have had some pretty terrible experiences in the past so I have found it is better to meet them beforehand so I can let the agency know if I feel uncomfortable at all before they actually show up at my house for a 12 hour shift. Anyway, that's a whole other issue. The nurse we met today seems like she will be a good fit. Hopefully she will be able to help us fill a few open weekend spots.
I also got a new baby wrap in the mail today so I spent part of the afternoon watching YouTube tutorials to learn how to wrap with it. I definitely still need some practice but I am hoping to be able to wear Savannah in the wrap next Saturday while we take Noah to the sMiles 4 Sammy 1K race that I registered us for.
This evening Nathan grilled up some yummy chicken fajitas for dinner, which I had to inhale in between Savannah's demands to be nursed. Like I said before, that girl can eat!
The rest of the evening I have spent in my room feeding the baby (and trying to type this entry one handed) while Nathan entertains Oliver and Noah does his nighttime routine of breathing treatments, massage, and bed time feeding.
And that is about it for today. See y'all tomorrow!

P.S. Two entries in a row. I'm on a roll!

I'm Back!

Hey guys! It's been awhile since I've written anything here which I regret. I'm trying to adopt a new angle for my blog so that it is more like a daily journal instead of whatever I was trying to make it before. I will be honest and say that I really was feeling a certain pressure, a pressure which I placed on myself, to write profound and worldly articles that would incite emotions and make the reader think deeply about the subject. And while that is a great goal to have it is really, really hard to write genuine stories like that every single day. So from now on I am just going to write. I will write about what we do during our regular, every day life as well as important updates about Noah, too. And occasionally I might be inspired to write something a little more creative. I am also in the very early planning stages of putting together a few fundraising events for this summer so stay tuned for those announcements. Well that's all for today's post. It's time for trach care and dinner prep. See y'all tomorrow!

Adventures In Cloth

About a 6ish weeks ago (my best guess since I'm not even sure what day of the week it is most times) Noah developed a rash on his right hip. It was in a spot that was completely covered by his diaper so I knew it wasn't from something weird touching his skin. We tried all different creams on him and nothing was working. The rash wasn't getting worse but it wasn't getting better either. I thought maybe he was developing an allergy to his regular diapers so I began my search for an alternative.

I decided to try out the organic diapers that are chemical free. Boy, there is some sticker shock with those bad boys! I sucked it up and bought a small box which was actually about $5 more than our regular with about 20 less diapers in the box. While I was in the store there was a small display for cloth diapers and I was actually really tempted to buy them right then and there but I decided to go home and do some research to know what I would be getting into.

I went to work researching the brand that I had seen in the store and it sounded really awesome and I was totally excited to possibly start cloth diapering. The only problem at that point was the cost. I was looking to buy directly from the company and it would have been a considerable up front cost. I knew it would eventually pay off but I wasn't' really ready to make that big of a commitment since I was still unsure if this would even work for us. 

I also joined a few cloth diapering groups on Facebook. The most knowledgeable people are the ones actually at home, using these diapers, putting in the work every day so I knew it would be a very good place to learn and pick up some tips. I joined a website called Cloth Diaper Trader where people can buy, sell, and trade cloth diapers and cloth diapering accessories. I kind of browsed the site and quickly overwhelmed myself with all of the different types of diapers. So. Many. Choices.

Anyway, one day a post from Cloth Diaper Trader showed up on my Facebook news feed. There was a listing for 19 cloth diapers for only $65! I honestly could not believe it. In case you didn't know, some cloth diapers can sell for as much as $20 each. I immediately went and looked at the listing which had pictures of the diapers. I thought this deal was way too good to pass up so I contacted the seller. I was in luck and the diapers were still available so I went ahead and bought them. I figured even if they didn't work I got a really good deal and I could always resell them. 

Fast forward to today and I've spent about $140 on our diaper stash. And when you do the math on how much we were spending on disposables, our cloth stash has definitely paid for itself already! We do still use disposable diapers for him at night because cloth diapers are not as absorbent and require more frequent changing. I didn't want to have to wake Noah up every 2 hours just to change his diaper. We also use disposables when we leave the house just for the convenience of being able to throw them away instead of carrying a wet bag with us on top of all of Noah's equipment. So instead of using 10-12 disposables a day (which is about $3) we only use 3-4 (about $1). It may not seem like a lot but if you add it up over a week or month or year the savings is actually huge! 

Cloth diapering is not something that has to be 'all or nothing.' It is actually a lot easier to manage than I had ever realized. I encourage anyone who is curious to do some research and consider trying it. If it doesn't work out for one reason or another, there is a pretty good market for cloth diapers so you will easily be able to resell to someone who will use them. Plus, they are so stinkin' cute!

Noah modeling his black cloth diaper.

First time washing my brand new-to-me cloth diapers.

Cloth diaper inserts that I sewed myself from some scrap fleece.

Cute little booty napping in his cloth diaper.

So Much To Say One Day

When we were first told by Noah's NICU team that he needed a tracheostomy my first 2 questions were:

1. Will be be able to breastfeed?

2. Will he be able to talk?

This was many, many months before he was officially diagnosed with Pelizaeus-Merzbacher Disease (P.M.D.) so of course the team was thinking who knows? while they expressed to me, "We can try."

Of course the breastfeeding failed and we learned shortly after our 2-3 attempts that Noah had absolutely ZERO swallow reflex. I resigned myself back to my trusty breast pump because I knew that's what he needed to get stronger and frankly, that's the only thing in his life I truly had control over. Secretly, I hoped he would one day be able to at least latch on or suck for comfort. 

When he had his in-home speech therapy evaluation at just over 2 months old, I still was adamant on breastfeeding. In fact, that was one of the goals that I wanted to achieve with the help of his therapists. As the months went by and I continued my pumping journey, I began to realize that this dream of mine just may never be. I pump for almost 6 months and soon after I stopped Noah was diagnosed. 

At that point I was "okay" with the fact that he would not breastfeed. I had given him the best nutrition for nearly 6 months and we had bigger things to deal with. When I got home from that dreadful neurologist appointment (which, to this day I still cry when I think about) I went straight to the computer and began my research on P.M.D.. 

He had all the symptoms and I knew. I knew we had an answer. A devastating, heart breaking answer. When I read that most people with P.M.D. do not walk and seldom even learn to talk, I was crushed. It is still hard to think about a year after his diagnosis. And with Noah having a trach, his ability to talk is hindered even further. 

I dove into a depression after that. I cared for him and did what had to be done but I felt a certain disconnect. I'm not exactly sure what snapped me out of it. Maybe my pregnancy and my maternal instinct going into over-drive. I don't know. But at some point I realized, the best way to make this work, the best way to give Noah the greatest chance at life is to treat him as normal as possible.

Okay, that sounds weird but I don't know of any other way to phrase it. And I don't mean treat him like a regular 19 month old child. That would not be effective or productive in any way. What I mean is to treat him how I would treat a child on his level. Talk to him in a way that he can cognitively understand. When you have an infant, everyone says to talk to them about everything around them. The infant can't talk back but they are building their vocabulary to use one day when they are more physically able. And that's what I do with Noah.

His cognitive level for understanding things far surpasses his physical abilities. Which is why it is so important to talk to him. There is even room for discipline in an appropriate way. My hope is that one day, once we finally unlock the magic door to Noah's speech that he will have so many tools and have so much to say. I'm fairly certain that he will have to use some type of communication device, whether that's an iPad or something else. But I can tell that he is smart. He knows what he wants and he tries his hardest to communicate his needs the best way he knows how. Right now that is mostly by crying but I know that with some hard work and lots and lots of practice that one day we will find a better way. 

I know we have a long way to go in the communication department and I don't know exactly what "talking" will look like for us in a few months or years. But I hold on to hope. And I want to give hope to other parents or caregivers going through a similar situation. Please talk to your child. Please give them every opportunity to show you what they can do. It may seem pointless or silly to talk to someone that can't talk back but it's not. It probably means that world to that child even if they can't express it to you. And if they can express it, it will make you feel that much better and it will make your relationship that much stronger.   

Here is a picture of Noah playing with his favorite app on his iPad.