Update and Some Fall Pictures

EDIT:

I just got a call from the GI doc's office. Marissa's blood work came back at normal levels for her thyroid and negative for Celiac disease. Woo Hoo!

On the H1N1 vaccine front, apparently counties are requiring proof of residency in that county for the shots. I called three different counties and they all had the same answer. They said it is that way across the board. The last person I talked to did say that our county has tentatively scheduled four clinics in about two weeks. We are also still hoping that Marissa's ped will get the supply they were originally supposed to. Her ped did say if they do get the shots, they will reserve one for her and we will be notified immediately. So, we'll just wait and see. And pray.

*********************************************************

ORIGINAL POST:

As Fall turns to Winter (for the next two days, at least) I wanted to just post a little about what has been going on in Casa de Marissa.

First, Jeremy and I have been struggling the last month about whether to get Marissa the H1N1 vaccine. So many pros and cons to consider, and I won't go over them again (for the sake of those friends who have read all the Facebook discussions) but needless to say, it has been an agonizing decision to make. Kids are in a high risk category. Special needs kids are in an even higher risk category. UGH! I'll spare you all the details but let you know that we have decided to go ahead and get her the vaccine. That is, when it comes in. I have a message in to her pediatrician asking when they are supposed to get it. There is a shortage and delay in this county, while surrounding counties have plenty. I'll never understand how that happens, (politics and BS) but we may have to go to a different county to get it. I hope not. I was thrilled when her ped told me they would be getting it so we wouldn't have to stand in a long line, in the cold with a bunch of people who may already be sick, but now they are not sure.

On a related note, Jeremy and I have also struggled recently with the decision of whether to go to a Halloween parade and party being hosted by some very good friends of ours. We went last year and had a blast. Marissa is old enough this year that she can understand the concept a little better and even walk up to doors to trick-or-treat, so we were excited when we got the invite again this year. I had been thinking that this H1N1 stuff was being hyped a lot through the media. While I still believe that to be true in part, I also can't argue with the numbers. Again, I'll spare you the details but in looking at the number of infected kids and, on top of that, infected kids with special needs, I can't deny that this is a big problem. Marissa is prone to pneumonia and that is a very common complication of this strain of flu. This stuff is not to be taken lightly.

So, back to the Halloween party. After much agonizing, a little lamenting the fact that once again, we have to do things differently because of Marissa's special needs, and a few tears (mine, not Jeremy's ; ) we decided not to go to the party. It breaks my heart because I was looking forward to seeing my friends. And I was looking forward to Marissa being around people. She loves people, especially kids. She is at a critical stage in her development where socializing is very important. But we just felt we couldn't risk it. We just don't know what everyone else has been exposed to. I know we are making the right decision, it just stings.

I hate being this paranoid. I always told myself (before we even made the decision to start a family) that I would not be a germaphobe parent. If a pacifier fell on the floor, pick it up, dust it off and pop it right back in the kid's mouth. A little snot running down my kiddo's face was nothing to get excited about. Letting my kid play with the toys in the doctor's office waiting room would be no big deal. Little did I know...

OK, enough of all this Hamthrax talk. (thanks Emily! ; )

Marissa is actually doing pretty well. Since about the middle of August she has been dealing with some constipation issues. It just popped up right out of the blue. We now have the symptoms controlled by adding some extra fiber to her diet and putting her on the tiniest dose of Miralax but we were still concerned as to why this showed up out of nowhere. We recently went to see her GI doc and he assured us that it can happen with kiddos who are strictly g-tube fed. It seems that their systems sometimes hit a point where they just need more fiber. She is on Pediasure with added fiber but it just started being not enough for her. After all, she doesn't eat apples or broccoli or anything of that nature which most people eat to regulate their systems. He did order some blood tests for Celiac disease and thyroid issues. He said he didn't think she has these, he just wants to rule them out. He said kiddos with underlying conditions like Marissa who have constipation problems are more prone to have Celiac disease and/or thyroid issues. I took her for that test on Monday, so we don't know the results yet.

We finally saw three days straight where Marissa had no behavioral problems. She was such a good girl over the weekend and it continued through Monday. Not even one timeout!! It all returned to normal yesterday but we were encouraged by our three day break. She hasn't had even two good days in a row for probably about a year now! I know we might not see that phenomenon again for a while but it was just good to see a flicker of light at the end of the tunnel, even if only for a few days. : )

I am so pleased with how much Marissa is vocalizing and verbalizing. Yesterday morning we watched one of her favorite Elmo movies as well as a Signing Time video and she recited almost all of the words! In her own, unintelligible way for a lot of the words, of course. But the try was there! I know this also means that she is watching the videos enough that she has now memorized them, but I can handle that! She really only watches her videos in the morning and then we turn the T.V. off until Daddy gets home. But what she watches, she retains.

We also found a way to keep Mommy and Daddy from feeling like we jumped in the tub with Marissa at bath time. We started singing some of her favorite songs as well as counting to ten and saying our ABC's and she did not splash nearly as much! She sings and counts and recites right along with us! I'm not sure why it took us so long to discover this but I am just glad it works... for now. She is so cute when she counts to ten! I love the way she says "four". She sounds like she has a Boston accent when she says it. I'll have to see if I can catch her on video.

Lastly, I'll leave you with some Rissa pics from the last couple of weeks.

Running...

and running...

stopping to pose...

and a Daddy kiss break...

and, back to running!

Grinnin' fool

Beautiful girl!

She's a Biter!

Marissa did a great job in speech therapy today!!

When we got the news almost two weeks ago that she would definitely need airway reconstruction surgery to get her trach out, and that surgery would increase her risk of aspiration, I made a determination to really start working hard on her oral motor skills. I figured the more we strengthen these skills, the more accustomed she will be to "eating" by the time she needed this surgery. The better she learns how to handle food being in her mouth and organizing it so she can swallow now, the less her risk of aspiration will be after the surgery.

I spoke with Marissa's speech therapist about this and she said that since Marissa already likes the taste of food, we now need to work on the biting and chewing aspect of eating. Marissa will only take tastes of things and gags if things get too far back in her mouth. Her ST recommended we get things like licorice, veggie sticks dipped in ranch, biter biscuits, beef jerky sticks for her to learn how to chew. Things that she can get the taste of that are long enough to reach her back teeth and hard enough that she can bite into and won't necessarily break off in her mouth. So, I went shopping and we have been trying these things a little bit this week.

Marissa's ST session was this morning and she did so great! She sat for 20 minutes and chewed on Twizzlers (her fave!), breadsticks, biter biscuits, and carrots and celery. She rarely complained and was excited to "take turns" with Elmo. She only gagged once! Her ST said she is very pleased that she did so well. I mentioned that I think we backed off the oral stuff long enough that Marissa has forgotten how scary it is to aspirate. Before, she would hardly let anything in her mouth because she associated that with choking and not being able to breathe. We also have allowed her to learn how to enjoy the taste of food by giving her tastes of whatever we are eating. Her favorite thing to do is walk around with a slice of pickle, licking it and saying "pickle" over and over and over. : )

I am so proud of my Little Biter!

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'.