Sunday, March 7, 2010

De-can Sam

Decannulation.

Naked neck.

No trache.

De-Can Sam.

We've been planning to have Christian's trache removed in the spring. We saw the Pulmonologist back in September. Our plan of action was that we'd go from the PMV to capping. We'd downsize the trache for easier capping trials and work up to capping for 24 hours a day - all night and all day.

That was in September.

Then we focused on other things. Therapies, medications, supplements, HBOT, possible seizures, EEG's, feedings, and on and on. Capping trials and trache stuff took a seat in the back.

We were told traches were not removed until after cold and flu season. That seemed reasonable enough, considering the risk so we weren't pushing for trache removal. I was comfortable with that because it would give us a few extra months for capping. I couldn't even get an appointment with our Pulmonologist until mid April.

I finally got serious about capping one day. Christian was laying down and I simply switched his PMV out for his cap. He acted as if I had done nothing, meaning he was just fine breathing on his own. I knew he was ready.

We've been capping all day, almost every day for about 2 weeks now. We hadn't done it at night yet. Not that I didn't think Christian could do it, I just hadn't gotten there yet. And the doctor said one of us would have to stay up all night with him monitoring his oxygen saturation. Fun.

But I had plans of decannulation (getting the trache out) in April. Just because I heard that's when the doctors would do it, if they agreed to do it. They didn't know they were doing it yet, but those were our plans anyway.

I guess Christian had other plans.

This morning Manny was up and about early, as always. He went to check on Christian.

"Christian's trache looks like it's out." - He tells me.

"Well, put it back in." - I said.

"It won't go in." - Husband.

This is where I jumped out of bed out of panic. Not because I thought Christian couldn't breath. Not at all. More because I didn't know what the procedure would be. Do we take him to urgent care? Do we call the doctor? What happens when a trache won't go back in?

How did this happen? Well, Christian's trache will slide in and out (never completely out) as he moves his head, but it's always secured in the same spot by what's called a trache tie. What ended up happening is that Christian's trache slid so far out somewhere during the night, that only the tip was still in the stoma (opening). The rest of the stoma closed (this, I'm told, can happen within hours). So we couldn't push anything through.

I called the Pulmonologist on call and he listened to the scenario. I told him I didn't want to take him to the ER or urgent care because of the wicked RSV season we're having. And in the back of my mind I thought - if he can breath capped and we're decannulating in April, why would I rush him in to surgically open the stoma for a trache that we'll be getting out soon?

The doctor asked questions. I told him our history. He asked about a Bronchioscope. I said Christian didn't need one because he doesn't have airway constriction. He originally got a trache because of his cough and gag reflex (which he has, long story).

So after his risk analysis, as the doctor put it, he said why not take advantage of this mis-hap and go ahead and leave him.

Just what I wanted to hear, but I wasn't expecting to hear.

When we found out he had decannulated, I immediately hooked him to the pulse-ox to see what his oxygen saturations was. Yeah, it was 97-100% all day long.

So that's it. He's trache free. I feel like I've been kicked out of a club. No more caps, valves, or traches? How could this be so quickly? As always, Christian is leading the way.

I'm just calling him De-Can Sam. It's my omage to Tucan Sam from Froot Loops. You know, follow the nose...

I see a chubby neck. I've nuzzled this naked neck for the first time in eight months. I got to kiss this neck without moving something out of the way. It's just there, plain and clean and soft, ready for mommy's kisses.

See?


We put gaws and a bandaid over the stoma to protect it from germies.








And we don't want to leave out little sister...



She's just too cute to leave out.
Posted by ShaunaQ at 2:26 PM 14 comments Links to this post
Wednesday, March 3, 2010

Surround Me

Look what Christian got in the mail today...




You know all those August Mommies I always mention?

Well, they struck again. They are an amazing group of women who I've known well over two years now. When Christian had his accident, the August Mommies banned together and created this support system like no other support system I've ever experienced. I mean these women are truly amazing. I'm honored to be a part of them.

Anyway, the August Mommies decided to give something amazing to Christian (Yes, Again!). They created this quilt made up of quilt squares from each August Mommy and their August Babies.

I knew it was being constructed from the posts on our message board, but I never peeked. Not once.

When I opened the package that arrived today, I knew what it was by the sender - my August Mommy buddy, Eliisa.
I unwrapped it, pulled out the quilt, and unfolded it.

I was overwhelmed. Just overwhelmed.

Each quilt square was so creative, so special, so personal. I can't even put it into words.

I don't normally cry over gifts. I really don't. But I cried reading each quilt square.

Tears down the face.

It came at the perfect time. After having a week that has been so emotionally exhausting (and it's only Wednesday), this quilt landed in my arms and made me feel like we were never alone.



I told them I will make Christian use this quilt until he's an old man, but I almost want to hang it on the wall! It's so beautiful!

Thank you is not enough and never will be.

I only hope that I have the tiniest bit of kindness these women have to pass along to others who are facing mountains to climb. They have inspired me. These women are proof that when people mobilize they can move those mountains. They've made such a difference in our lives.

I hope they know.

And I hope they know that now their love and prayers will surround Christian forever.
Posted by ShaunaQ at 10:14 PM 7 comments Links to this post
Monday, March 1, 2010

Feet in the Sand and Other Tidbits

Nothing is better than a vacation. Especially a vacation that includes therapy. And even more especially - a vacation with a car ride that Christian tolerated there and back. Double especially a vacation that included a stop at the beach! Okay, now I'm getting carried away with the especially's. I'll stop.

Seriously, it was a great trip. One thing I was worried about was whether Christian would tolerate the 7 hour car ride. Positioning can make or break a vacation that includes a large amount of driving. Christian just did so well, it made my vacation.

The therapy was great and we really want to return soon, hopefully in May, if possible, for the three week full intensive program. I think Christian would really benefit from this therapy so I'll keep you posted on our future plans with Napa.

So we spent Thursday and Friday doing therapy and then on Saturday I met up with some of my August Mommy friends, which was fun. But the day was rainy so we really didn't get to take the kids to the beach. We decided to stop at Mission Bay on the way home so we could put Christian's feet in the sand.

I was really worried he wouldn't like it. You know, the beach can be windy and cold. I took him out of the car and he immediately started to shiver and squint from the light. His body stiffened up. Great...he hates it, I thought.

I put his hoody sweatshirt on and his baby shades. All was right with the world.


How can you tell your child, who doesn't talk, smile, or laugh, likes something?

Body language.

As soon as he had his shades on with his hoody, his whole body completely relaxed. That tells me he loves it.

So we decided to sit in the sand. I didn't care if we got dirty.



We put Christian's feet in the sand.



He went home with sand in between his fingers and toes. We could have stayed there listening to the waves forever. (They were about 5 footers!)


Lola wanted to join in the fun.



So did Daddy.


Other tidbits to mention:

  • We're going to Denver in 2 weeks to try ABM therapy!

  • Thank you to EVERYONE who purchased a candle for Christian! WE SOLD OUT!!! There are even back orders. So I'll be contacting those who have backorders, but we will be getting more candles soon. THANK YOU EVERYONE FOR YOUR SUPPORT!

  • Christian's friend Cici is having an online auction (bidsforcici.org) March 14-21. All proceeds go to Cici's therapy treatments. She's got some really cool stuff, including a picture painted by Miss Cici, herself.

  • We have an online auction coming up the first week of April so stay tuned for details!
Posted by ShaunaQ at 10:45 PM 6 comments Links to this post
Friday, February 26, 2010

NAPA Time

We just completed two days at NAPA and Christian is beat!

I can't even imagine what the three week program will be like.

DAY 1:

This therapy helps with strengthening Christian's midsection so he can work on head control.

"Not sure about this, but I'll hold my head up a little."

Standing Exercises: This helps bare weight on Christian's joints. Weight baring is so good for his body. It helps keep his bones strong, and the standing position aids in digestion. Christian really likes being in this position.

Daddy helping the PT get Christian into a standing position.

"All this work is tiring me out!"
*yawn*


DAY 2

Because Christian's arms are weak and cannot bare too much weight on their own, immobilizers are placed around his arms in order to get better weight baring in his shoulders and wrists without his arms collapsing. And it really helps with head and neck strength!

Just to let you know, in this picture Christian is really mad. I'm talking crying, tears, snot, the works. That was definitely a first. But I know he wasn't in pain. He was just being challenged, which is exactly what he needs.


This is a therapy that uses weights and a pulley system for children to essentially "weight lift."


"Day 2...I'm getting the hang of this!"

"Look Mom, I'm a big boy!"

"All that work...I'm so tired....let me tell you about my day, Daddy."

So far it's been a good visit. This is the view from where we're staying. A friend of the family is allowing us to stay here while we get Christian his therapy. We are so blessed to have people in our life that make this journey just a little easier.


If it's nice tomorrow, we'll probably take the kiddos out to the beach. We haven't yet because Christian is so worn out at the end of his therapy. It's supposed to rain tomorrow, but maybe Sunday before we leave we'll have some beach time. I want to put Christian's feet in the sand.

It's been a nice, short trip, our first since Christian's accident. I was nervous about the trip here, but aside from some horror-movie-like fog, we made it here safe and sound and without too much protesting from Christian. As a family, we've always loved to travel and obviously we've been pretty home bound...until now! Just another step in our journey...just another first of many.

Hopefully, we can return for the full three week program soon. I think it will really help Christian to be pushed and challenged. He seems to really respond to this type of therapy. For now, though, he is resting, probably sore from activating all those muscles he hasn't used in months.

He made it through yet another challenging couple of days.

I'm so proud of my little guy.

Posted by ShaunaQ at 9:28 PM 7 comments Links to this post
Tuesday, February 23, 2010

A New Chair and Other Comfy Things

Today was like Christmas!

Christian FINALLY got his chair. It's really more like a special needs stroller with bells and whistles.


Yup, it's blurry (stupid camera phone). But this picture was taken at the final adjustment fitting. Christian was really irritable today (not sure why, but I'm pretty sure it's a toss up between teething and tummy trouble). He was even a bit irritated when I put him in the chair for the first time. But then he settled right into like it was a recliner. I felt like it was Christmas. Admittedly, I was probably a bit over caffeinated today, but still. These are the kinds of things that seriously make my day. And look at that huge tray he has! Now all of his toys are easily within reach without being rigged.


That ever flattering, overly bright fluorescent lighting in the room was quickly avoided by the canopy. Loved that! And Christian is sensitive to bright light so a good canopy is serious business. But there he is above, no arching, no extending, no protesting.

Here are some pictures of it without Christian.


Why is this so important? Because this means freedom for us - both of us.

Let me explain.

Christian doesn't have core strength, meaning he doesn't have strength in his back or stomach muscles to keep his back held up and straight. It's very difficult to get him in a comfortable upright position because of this and that is why these seating systems are so important for him. Good positioning changes everything! It changes his mood, his responsiveness, his eye contact - all very important things. Not to mention it keeps Christian in good alignment, which will avoid serious problems later.

So what does that have to do with freedom? Well, prior to today we used a jogging stroller. It was fine but Christian wasn't terribly comfortable. I propped him and positioned him, but he would only tolerate it for about 30 minutes at a time. So everywhere I plan to go I have to ask...is it worth it? Should I carry him in and out because he'll be happier sitting on my lap? If I put him in the stroller, how long do we need to be there before he starts getting uncomfortable?

Now, we get to go. We get to go places. I like to take my kids places, whether it's to Target (Mommy's fave) or the park. From the minute I put Christian in that chair, I knew he was comfortable. Now we can go places...even to the park...and I know he's comfortable and can enjoy himself. We can do so much more! So this chair is...freeing. If that makes any sense.

Something else that makes Christian comfortable...



Again, Christian is sensitive to bright light. And we are in abundance of that in Arizona. So the vision therapist sent us some strap on shades. Christian used to cry on the way home from picking up his big brother because the late afternoon sun is always on his side and always in his face. He would cry the whole way home. Not anymore! The sunglasses seriously make a difference. Let's call them magic sunglasses!

And speaking of comfy, I've been wanting to post a picture of where Christian sleeps forever, just in case anyone was wondering. And when I walked into the room today, it was overcast outside which made the room darker and made his lights stand out even more. It looked pretty cool so I thought I'd share his digs.



He still sleeps in the crib he slept in when he was 3 months old. It's raised all the way to the top so it's easier to reach him. And, of course, the side railing is always up when he's there. I purchased some LED Christmas lights on clearance after the season was over and he loves them. He stares at them and reaches for them every once in a while. You'll notice he's got a ton of visual stimulation everywhere.

So today was like Christmas! Only the waiting for Santa to come on this Christmas Eve lasted 8 months! But we're so happy to have his new stroller. Now we can go places! Starbucks better have Mommy's Iced Latte ready because we have a new stroller and we're on our way!
Posted by ShaunaQ at 12:00 AM 4 comments Links to this post
Friday, February 19, 2010

Candles for Christian


"Light up the darkness." - Bob Marley

We're beginning a new fundraiser!

Candles for Christian

Christian has made so much improvement and thanks to many of you, we've been able to get Christian nontraditional therapies like HBOT and Cranial Sacral Therapy that continue to help Christian in so many ways. We're looking to continue the healing by trying some additional therapy programs. These therapy programs range from an intensive therapy program in California to Anat Baniel Therapy in Colorado.

In fact, next week we're leaving to visit southern California. We had already planned for a small trip at the end of February and I thought since we'd be there anyway, why not check out Napa Center? So they were nice enough to arrange two days of therapy so Christian could try the different therapies they have to offer. Kind of like a preview for the bigger program. We're so excited.

Of course, all of this costs money. I've always said since the beginning of this journey that we would get what Christian needs, no matter what. So we're raising money to get Christian therapies that may otherwise be out of reach.

You can find the online store in the side bar to the right. The pictures in the online store are not that clear so I posted another picture in the sidebar of what the candles look like close up. The candles are from the Love That Smell Candle Company and they burn for 50-70 hours with wicks that are lead free. They come in 8 oz. jars and they are $8 each with free shipping. There are several different scents and on each candle there is a picture of Christian and a quote:
"Light up the darkness." - Bob Marley

To me, this quote really encompasses Christian's journey of finding his way out of the darkness. It's actually the journey of our whole family. The grief and sadness can be very dark, the journey is finding our way to the light. And despite that darkness that surrounded us last summer, we have found light again in healing and in the love and support of others. It is our hope that these candles can be a reminder to everyone that even in the darkness, there is light.

Thank you for your unwavering support!

Posted by ShaunaQ at 12:03 AM 3 comments Links to this post
Wednesday, February 17, 2010

Four Walls

I'm pretty competitive in nature.

But I was never a competitive baby mom. Meaning, when my kids were (and are) babies, I was never concerned with whether my kids were walking first, crawling first, cutting teeth early, first words, etc. This came from my first born, Gabe. Through labor, the doctors tried to rush him. But in the end, he came on his own time and when he was ready, he was ready. That became the pattern for Gabe through his younger years. He would be slightly behind until the very last minute and then he'd catch right up just in time.

Thus, my parenting motto when it came to milestones was that they will come in their own time. Very...flowery.

Then things changed. Now that Christian's milestones have all together been thrown out the window, the definition of everything has transformed. Actually, there is no definition. It's - it will happen when happens if it happens. The only thing close to a definition of what to expect with milestones (if you can call it that) is comparison with other children with the same issues. That's it! There's no other protocol.

See, this is unfair because no single brain injury is the same. Not a single one that I've found! Some children walk but don't talk. Some talk but don't eat. Some eat but don't walk. And on and on. So how can we, as special needs moms compare our children?

We can't. But we do. It's makes me crazy, but I do it. I admit it. It's so unrealistic. Sometimes comparing is great because you can gage what to expect with your child for which there are no parenting books written. But even that is silly because another child's path is guaranteed not to be yours in this world. It could be similar, but nothing to place bets on.

But we still do it, don't we? Why isn't my child doing that yet? Ugh. It makes me crazy, especially because just recently another family's blog came across my life-desk and knocked me for a loop. Well this family had their happy ending and their child is doing just fine. Why couldn't that be our story?

So I sulked. And I wondered why not my baby? And every time I hooked Christian up for a feeding and plugged in his tube, I thought to myself, "They don't ever have to do this...They won't ever know this."

I had a little pity party. But then something hit me. I have occasionally wanted what others have had in life. Yes, me. I have occasionally coveted the blessings of others in my past life maybe a time or two. Don't make a big deal of it.

But, I can say with 100% certainty that looking back, those blessings I saw others receiving that I so wanted for my own life, they came later and in different forms and, most importantly, AT THE RIGHT TIME. It has always happened this way and I can only recognize that in retrospect.

As soon as I "remembered" this tid bit of information from past experience, I accepted that these are our four walls. I mean I've accepted that this is what our life is now, but it's easy to loose focus. Especially, when you see another child getting everything you want for your child. But these are our four walls.

What do I mean by four walls?

Well, for the past few days, while attending my pity party all by myself, I kept hearing a voice saying four walls behind every thought I was having. I know in church, the pastor has said that God talks to you all the time. You just have to listen.

Four walls.

We have a new foundation. The concrete has been poured and settled and now it's time to solidify the four walls that are to keep us in from the rain. And these are the four walls we've been given. We can choose to build this house with doubt and fear or we can decide to strengthen these four walls so they can shelter us from the storm.

What does that have to do with comparisons? These four walls are our four walls. This house is our house and this journey is our journey. We don't want to live in somebody else's house. And even if we did get to live there, it would never truly be ours.

So I'm thankful for these four walls. They're different. Different than anyone else's. There are no comparisons here. Brick by brick these four walls will be built up high and strong. And just like these walls, bit by bit Christian is being built up to be strong again.

Life lesson learned (or re-learned) this week:

The blessings and healing will come on their own time. Just like Gabe did. In the mean time, we have a house to build with walls to strengthen so we're good and ready to receive those blessings. And everyday is a blessing here.
Posted by ShaunaQ at 12:03 AM 7 comments Links to this post
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