Thursday, May 29, 2014

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!

Sunday, May 25, 2014

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!

Friday, May 23, 2014

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!

Thursday, May 22, 2014

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!