Wordless Wednesday

Let's Get It Started!

The last few posts have been real downers and I just wanted to end the week on a good note.

Marissa and I play music a lot during the day. I am the kind of person that, if it's just me and other family members or a few close friends, I will sing and dance to the music like a total weirdo. So you can imagine that Marissa has picked up a few of my totally sweet dance moves along the way. I love to see her dance and mimic me so I always try to capture it on film. HA! It is so funny when we turn a camera on in this house. Marissa goes berserk! I think she feels she has to over-perform or something because she turns into a wild woman. Not that she isn't already but she dials it up a few notches when the camera comes out.

That being said, the video you are about to see had to be shot in three different pieces because she just would not cooperate for the entire song, even though she had danced without interruption just moments before the camera came out. You will see that Jeremy and I have to constantly keep pushing her back into the view of the camera and prompting her to dance. Crazy kid!

Enjoy!

P.S. I just wanted to thank all of you for being so sweet and supportive throughout the last few days. Your friendship means so much to me. And you guys give some pretty good advice too! Thank you friends.

The Post I Told You Would Come

OK folks, here it is. The "gripe post". If you don't know what I am referring to, scroll down to read my last post and maybe even the one before it. That should give you enough backstory.

Before I start griping, let me just mention that I still consider the life we are leading as a family a blessing. Marissa is the most precious gift from God I could have ever asked for (even when she is doing her best impression of a Terrible Two Year Old!). I still count ourselves lucky because, honestly, things could be so much worse. I don't have to look very far out my front door to see that. I know that everyone has their burdens in life to bear and life sucks for everyone at some point. There is so much more suffering in the world than what we are going through and I am grateful that Marissa is here at all. I also know that God already has this all planned out and He will guide us through it. I struggle on a daily basis with my efforts of handing the worry and stress part over to Him. It usually goes a little something like this:

"Here you go God, take it, I just can't carry this. OK, thanks for holding it for a second God, I'll take that back now."

I know I need to trust Him but as I mentioned before, I am a huge worrier. On top of that, I'm a control freak. I just need to realize God has been carrying Marissa through things her entire life. Literally from day one, before she was born. He has a plan.

That being said, THIS SUCKS!!

Basically, Dr. P told us that Marissa has a very tiny chance to outgrow her vocal chord issues and be rid of the trach in several years. She talked about how the trach itself can cause vocal chords to malfunction. Basically, if you don't use them, you lose them. I explained to her that Jeremy and I think this problem may actually be congenital. The high pitched squeak we hear when she inhales sometimes is the exact same sound we heard minutes after she was born, minutes before she was intubated for the first time. After that, each time she was extubated, her stridor was still that high pitched squeak but it was combined with a raspy sound because her vocal chords were trying to heal from having a tube shoved between them. We thought that the sound would clear up as soon as she was given enough time off the vent. That never happened, as she would go for about a week off the vent and then need it again. This went on for two months and we eventually decided she needed the trach due to malacia and her small, recessed lower jaw. It didn't occur to us that she might have a vocal chord problem until much later. After Dr. P heard what we had to say about it, she agreed that the issue sounds congenital and, therefore, the chances she will grow out of it are slim to none.

So, without using so many words, Dr. P basically told us that we have two choices: the possibility that Marissa will have her trach for life or Marissa undergoing a major surgery that will change her sweet little voice forever and increase her risk of aspiration. I have also read from other parents of kids who have had the rib graft surgeries that there is a risk of the surgery failing and needing to be repeated. The strength of her neck will be compromised and a blow to her neck could be very serious, even deadly.

Now, I want to be clear here. I am fine with her having the trach as long as she needs it. I couldn't say that even a year and a half ago but I am fine with it now. Sure, the trach brings on a lot of extra work, supplies, worry and stress but it has become just as much a part of her as the nose on her face. We are used to taking care of it and all that comes with it. For the most part.

I want the trach out for her. I want her open airway and compromised immune system to be gone. I want her to know what it is like to breathe without a hole and a tube in her neck. I want her to be able to play and learn without having to stop twice a day and have her trach cares done. I want her to be able to work on swallowing and tasting food without a tube sticking down her throat. I want her to be able to swim and play at the beach. I want it for her.

Back to the choice of a trach for life or a major surgery that brings on it's own major side effects. Just a warning, I am going to get a little crass here. I see this "choice" as being just the same as getting to choose between a poop sandwich and a poop taco for lunch. Both stink. Both leave a horrible taste in our mouths. Both are equally hard to swallow. Some choice, huh?

I am just so sad it has come down to this. It wasn't supposed to be like this when the Dr. discussed traching her. It was supposed to be a year, tops. It will be three years in May. I have watched kids that I have grown to love, both in person and in cyber space, get decannulated. One Little Precious just got her trach out Tuesday! It made my heart soar to see! I literally cried tears of joy when I read her mom's update. Unfortunately, it also stings a little. It stings because I am not sure if/when it will happen for my Little Precious and if/when it does, it will only come from a major surgery that will have some major side effects.

So, I think I am done griping, for now. I fully trust Dr. P with this and I know she will do what is best for Marissa on a timeline that is best for Marissa. Now, I just need to educate myself as much as possible to prepare for what the future holds. And give it to God. And not take it back.

Oh, I almost forgot. Hope asked how Dr. P's babies are doing. She said they are doing fine and are getting bigger fast. Her son is still on O2 but they were able to take her daughter off O2 a while back. I wished I had asked to see pictures but I forgot. I am sure they are cute as buttons, just like Dr. P. : )

Sorry this was so long, and kind of all over the place. Thanks for reading.

The Long and the Short of It

OK, so here's the update on Marissa's ENT appointment today.

Here are the answers to the questions I asked in the last post:

1. There will be one of three types of surgical procedures that Marissa will have. Arytenoidectomy; Posterior Cricoid Split with Rib Graft; and Posterior Laryngotracheoplasty with Rib Graft, all of which I briefly described in this post. We won't know which surgery will be done until Dr. P has a chance to scope Marissa. She wants to scope her in the Spring and she will make the decision then.

2. Dr. P can do the surgery so we will stay local, which is great.

3. Unfortunately, the surgery will most likely change Marissa's voice, making it quieter and somewhat hoarse.

4. Unfortunately, the surgery will also increase her risk of aspiration.

5. The procedure will be a double stage, meaning that Marissa's trach won't be removed until after she has healed from the surgery.

Now, on to the subject of a timeline. Dr. P seemed a little hesitant when I mentioned possibly having this done next Spring/Summer. She likes to do these kinds of things when kids are between the ages of three and five. Marissa will turn three in March. Dr. P said it is not necessarily about age but more about size. The bigger, the better. So, Dr. P will be making the decision about whether Marissa is ready for the surgery when she does the scope. She also mentioned that, with the rib graft surgeries, the bigger she is, the more likely it can be done endoscopically rather than it being an open surgery. This, of course, would be the best case scenario. So, she may have the surgery and her trach removed by next summer, or she may not. We won't know for several months. We obviously want to do whatever is best for Marissa, so we are leaving it in the hands Dr. P and, more importantly, in the Hands of the Great Physician.

We are still letting all this information sink in. I am sure I will follow up shortly with a post lamenting the fact that neither choice for the next step feels like a good one. It's what I do. I have to process information for a while, let it sink all the way in and then gripe about it.

So stay tuned.

Stressin'

Tomorrow is Marissa's first ENT appointment since July. If you remember, July is when we found out (from an ENT who was not Marissa's regular doctor) that Marissa would need a reconstructive surgery on her airway before her trach could come out. Marissa's regular ENT comes back from maternity leave tomorrow and Marissa is one of her first patients of the day.

I am filled with anxiety about tomorrow. I am the kind of person that likes the status quo. I don't really like change all that much. I was this way before Marissa was born but am very much more so now. Many changes that come along nowadays are not for the better. I was devastated when we received the news that she will need major surgery to get rid of the trach. I stressed about it for about two weeks, trying to decide if we should get the ball rolling right then, even though Dr. P was not around. Once I resolved that the timeline mandated she wouldn't have the surgery until next Spring, I was able to let it go and just wait for Dr. P to return before we got more answers. For the last 2 1/2 months, I have been able to shove everything to the back of my mind. We were able to go on about our business, have a wonderful Summer and not worry about too much. Now it is time to worry again.

I come from a long line of worriers, on both my Dad's side and my Mom's side. I know it is a waste of time and only adds more stress, especially since not much that I worry about is in my hands and under my control anyway. But I can't help it. I worry, stress and fret. It's what I do.

I have a lot of questions for Dr. P tomorrow. First, exactly what surgery should be done? Can she do it here locally or should we go elsewhere? Will this surgery change Marissa's voice? Will it increase her risk of aspiration? Will we be able to remove the trach right after surgery or will we have to wait until she is healed?

For now, I just ask for your prayers. Please pray that I can let some of the worry and stress go. Pray that we get some good solid answers tomorrow. Pray that we are able to handle those answers and not be discouraged by what we hear. I will try to update tomorrow and let you all know the game plan.

Thanks friends.

Happy Pre-Halloween!

I know Halloween is still 3 1/2 weeks away but I just had to share these pics now.

We have known that we wanted Marissa to be Elmo for Halloween for a while now. I mean, how could she not be? She's completely obsessed with the cute furry red guy. Last Thursday I was out at Target picking up some much needed grocery items when it occured to me to look in their Halloween section to see if they had an Elmo costume. Sure enough, they not only had the costume, they had the cute little plush treat basket to boot!

I took the costume and basket home knowing that I would have to hide them, for it was only 1/2 hour from Marissa's bedtime. If we showed them to her, she would flip out and not go to sleep from all the excitement. So, Friday evening we decided to introduce Marissa to her Halloween costume. We knew she would need some time before the big day for her to get used to wearing something on her head (she hates hats and hoods). To our amazement and delight, she took to wearing Elmo on her head with no problem at all!! First, we let her play with the costume and basket for a while. Then I showed her what it looked like when being worn (almost) properly. Pictures of that are at the bottom! ; ) Then, we put the costume on her and she did not freak out at all. She actually LOVED it! We showed her what she looked like in the mirror and she was thrilled! I think she knows Elmo is a Rock Star and she is honored for him to be on her head! So here are a few Pre-Halloween Pics for your viewing pleasure:

And yes, I know how to poke fun and embarass myself. And yes, I have a Cookie Monster shirt. Not ashamed. At all.

What About the "R" Word?

I will start off this post by saying I do not mean any offense to anyone.

I understand that hate speech is wrong, no matter what words are used and who is affected by them. I understand that using any word that uses a trait of a person they can not change as a tool to describe something as negative, is wrong. I understand that homosexual people struggle everyday for equality. They struggle everyday to be recognized as people, as humans. That is why I think the following public service announcements are a positive thing. Watch for yourselves:

But...

Where are the PSAs for the saying "That is so retarded"?

Intellectually disabled persons are a group of people that are affected by hate speech just as much as homosexual people. They encounter the same level of ignorance, intolerance and discrimination as homosexuals. They are the subject of people's ignorant use of the term "that is so retarded".

The only difference is that intellectually disabled people often can not stand up for themselves to tell others how they feel about the use of the word "retarded" as a derogatory term. Too often, they do not have the ability to even grasp that someone is insulting them when using the term "retarded".

Where is their PSA?

Just sayin'.