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.

New Wheels For Noah!

For awhile now I have wanted to do a t-shirt fundraiser. I just never could get the phrasing or logo looking quite right though. But I think I have finally done it! I have a t-shirt fundraiser up and running from a site called Booster.com.

The shirts are selling for $20 each and there is also an option for donating beyond that. The shirts will ship directly to the customer (US only) about 2 weeks after the end of the campaign. The campaign is set to end on March 9th which means we have about 18 days to meet (or hopefully exceed!) our goal of 75 shirts.

If you would like to order a t-shirt (or a few) please click here to go to our fundraiser page. The shirts are available in two colors, black and turquoise. The turquoise color is also available in youth sizes and I am working to get the black in youth sizes as well.

If you have any questions about how to order, donate, etc. please contact me through my blog, by email at dev_henderson01@yahoo.com, or through my Facebook page at facebook.com/amiraclenamednoah.

Here is a picture of Noah to say "THANK YOU" for your support!

Lots of Love

I know, I know. I am terrible! It has been forever since I have written anything on my blog. I know. There is always a lot going on around here plus I'm now 29 weeks pregnant. So when I do get some "free time" my first thought is usually about sleep. Anyway, enough excuses. I seriously plan on being a lot more active with my blog because there is just SO MUCH to talk about!

This post is just going to be a little "re-introduction" of sorts. I didn't want to bog down my first post back from the dead with too much medical stuff or anything too serious. Plus, it's Valentine's Day so I wanted to share some pictures of my sweetest Valentine's. I hope you enjoy!

Happy Valentine's Day with lots of love from the Henderson Family!

Your Worst Nightmare vs. Mine

It's funny (well not really funny) how some parents worst nightmare for their child is something that I would sell my soul to have.

A newborn having jaundice is an OMG moment for a new mom. A premature baby getting diagnosed with Cerebral Palsy is a devastating blow. A pediatrician mentioning Down Syndrome markers concerning your week old baby is heart breaking. All of these things are world changing, Earth shattering moments for any parent. And I don't want to down play the significance and the challenges that any of these diagnoses bring.

But I find it funny, ironically so, that these are all things that I have dealt with and I prayed that Noah would be diagnosed with. That's right. I prayed for a baby with Down Syndrome. I prayed for a child with Cerebral Palsy. I prayed for an answer.

Which is what I got, but not one I wanted.

Those other conditions have been researched and written about. There are people in my community to meet face-to-face to talk about the diagnosis. With PMD there isn't much to read. There is so much uncertainty. There is no one within 100 miles of where I live to reach out to!

I am still having trouble, obviously, accepting Noah's diagnosis. It has not been an easy one to digest. Even with as much research, reading, and learning about PMD that I have done since we found out, it's not enough.

I feel silly saying, "I would rather be dealing with something simple like CP." I feel silly because I know CP is a worst nightmare for a lot of people and it's not really simple at all. But that's how I feel sometimes. Even if Noah has to be special needs, why can't it be something that people know about?

I remember researching Down Syndrome when we were still in the genetic testing phase. I was excited! I thought I had finally figured it out! Noah has some similar features and a lot of things could be explained with Down Syndrome. I was heartbroken, sure. I would stay up all night looking at pictures and reading stories on a Down Syndrome forum and just crying. I knew it would be hard but it would be so much easier to know what it was. I had accepted it and was ready to move on to find ways to help him. When the test came back negative for everything, I was still so sure that it was Down Syndrome I even mentioned it to his doctor. I was still clinging to my little version of "hope."

That was the same day we were told about Noah's MRI results and Pelizaeus-Merzbacher Disease. The doctor told us that we needed to "be realistic" when it came to what we could expect Noah to be able to do. He didn't tell us much else except that we would have to do a blood test to confirm for sure. Needless to say, I was reeling. I was in a state of shock that I cannot accurately describe. I cried all the way home from the hospital and then cried myself to sleep when we got home.

It was not simple anymore. It was not Down Syndrome, like I had hoped. It was not Cerebral Palsy, which was my second guess. It was something much worse, with a name I couldn't even pronounce. My worst nightmare had suddenly gotten 10 times darker and a thousand times more confusing.

Why can't it be simple?

Pumpkin Patch!

Today we took Noah and Oliver to the pumpkin patch for pictures!

This is us last year...

Yes. Noah really was that tiny, my hair was that short, and Oliver is still that stubborn. I love pumpkin patch pictures so even though today's forecast called for rain, I decided to go for it and pray we didn't get too wet or too muddy. 

Overall, it was a pretty good trip. Noah gets pretty overwhelmed by anything outside of our house. He cried most of the time and his eyes are closed in every picture. We have to walk a pretty fine line between taking him out and letting him experience different people and places without exposing him to too many germs that could make him very sick. I wish we didn't have to be hermits in the fall and winter but it's just something we have to do to keep Noah out of the hospital. I think the pictures are still pretty stinkin' cute!

Good Things

This afternoon we got back from our visit to Houston. Noah, his nurse Brittney, and I took a trip to see the team at Texas Children's Hospital. We arrived yesterday around noon and Noah had an appointment for a Swallow Function Study scheduled at 1 pm. After wandering around the hospital a bit we finally found the right place. Noah was taken into a radiology room where they typically do x-rays. After changing him into a gown and getting an x-ray of his chest, the Speech Pathologist came in and asked a million and one questions. Actually, everybody that we saw asked a million and one questions. One, because he's a new patient and two, because of his super-rare-I've-never-heard-of-that-in-20-years-of-practice disease that he has.

Anyway, after all of the questions it was finally time for the study. Noah had one done back when he was around 5 weeks old while he was still in the NICU. I was not present when the study happened so this was all new to me. Basically they strapped him in a car-seat type of chair and wedged him in between the machine that takes the pictures and the wall, then they turned off the lights. I had to step behind the lead wall since I am pregnant so I wasn't able to get the best pictures. Brittney was able to feed him and they started off with a thick, pudding-like mixture of baby food and barium dye. Noah pretty much hated the whole experience but he did manage to swallow most of the thick stuff and only a tiny amount went into his airway. Then they tried a thin liquid, apple juice mixed with barium dye. The thin liquid was kind of hard for him to control in his mouth and it ran off the back of his tongue and down his throat. The good part is, is that he was still able to protect his airway and did eventually swallow it. Then they tried what they call "nectar thick" consistency. This is the one that Noah handled the best. It is thinner than the baby food so his muscles didn't have to work as hard to squeeze it down to swallow. But it is thicker than liquid so he has more time to control it in his mouth without it falling off the back of his tongue. Noah does tend to hold and pool the food right at the piriform sinus, where the esophagus and the trachea meet. Unfortunately this means that Noah is always at risk for aspirating whatever food or drink he consumes, which is also true for just his own saliva. But we have to weigh the pros and cons.

Cons are, obviously, risk of aspiration. Which could turn into pneumonia. The lungs are supposed to be sterile so when you have things like food or even saliva that get in there on accident, it creates bacteria and lots of yucky things that are not good. The pros, however, seem to outweigh his risk. The good thing about letting him have tastes of food is that it will become a pleasurable experience for him. Not so much right now because it's new, but I'm hoping that the more we try with him the more he will want to eat and swallow. Also, the more he does swallow, the stronger and more coordinated the muscles will get. Over time, the process of swallowing will become more streamlined and he won't have to work so hard once his muscles and brain learn how to do it.

Right now we are allowed to start with small tastes of nectar-thick foods a few times a day. He is already on aspiration precautions but we have to be extra careful when doing the tastes. I will confess that while I was watching the screen, seeing Noah actually swallowing real food that my eyes got a little bit teary. This is such a big accomplishment for many children with a tracheostomy. Some may go their entire lives never having tasted a thing. But for Noah it is EXTRA BIG! He has so many set backs with his neurological disorder but I know he is making great strides. I know what he is capable of and I am glad that I made this trip so that someone else can see it, too.

Then this morning we had an appointment with the Aero-Digestive Team. This is pretty much like the Trach Clinic that we go to at Dell Children's. We saw a GI doc, Pulmonary, and ENT. I got to tell Noah's history to each of them, which I absolutely love doing. Seriously. I love talking about Noah to his doctors. Especially when they know nothing about PMD. I turn into the expert and I love being right. Okay, enough about that. They all knew that my goal for Noah is decannulation. So they were all examining him with that goal in mind to see if he would be a candidate.

So basically the GI and Pulmonary didn't have a lot to say. They pretty much deferred to the ENT who is apparently a vocal cord expert. She did a scope in the office while he was awake to look at his cords. They put the camera through his nose and down the back of his throat to take a look at his cords. We did see that his adenoids are very large which would make his airway smaller. And then we were finally able to see the cords past all of his secretions. He was screaming and crying so we got a pretty good view of....

MOVING VOCAL CORDS!!!

Yes, that's right. Vocal cords are moving. And moving means not paralyzed like every single doctor in Austin has told us since he was first trached. SO the good news is that he does not need any kind of vocal cord surgery.

The ENT wants him to be able to tolerate his PMV during all waking hours and then we will progress to capping his trach. Capping means completely blocking his trach so that his only airway is his nose and mouth. Once he tolerates capping, he will have a capped sleep study. If those results are good then out comes the trach! Seems pretty easy but at this point Noah only tolerates his PMV for about 30 minutes at a time. It will be a kind of long process but it was great to hear from the whole team of doctors that Noah seems to be a good candidate for eventually getting his trach taken out.

So the plan for now is a triple-whammy appointment at the end of November. Noah will be back in the operating room at Texas Children's having his adenoids removed since they are huge! While he is in there he will also be having Botox injections to his salivary glands to see if that helps with his oral secretions. And she is going to do a scope, just like the one he had done last week so she can see everything for herself. Might as well if he's already good and sleeping.


Lots of exciting things coming up for us so please keep praying that we are moving in the right direction. Pray for Noah that we will continue to witness a true miracle here on Earth. And please pray for me, as well. I am in a constant internal struggle as to what is the right thing to do for Noah and our family. I pray that I am doing what is good and right but only time will tell.

Thank you for loving our sweet Noah and the rest of our growing family.

Before the swallow study when Noah was blissfully unaware of what was coming.

X-ray image of Noah during the study.

My view of Noah's swallow study.