It is time to say goodbye to 2008. We are very thankful that Marissa only had one major illness this year (pneumonia in May). This year brought us many good memories and accomplishments. Marissa learned how to crawl and walk and she learned how to use the PMV (speaking valve) so we could hear her sweet voice. And let's not forget all the great dancing! She is such a blessing in our lives and we are so thankful for her. Each time she acts like a "normal" toddler who gives us attitude and frustration, I have to look back on where we were 21 short months ago and be thankful. She came very close to dying several times and the fact that she is here at all and giving her parents many gray hairs every day is such an accomplishment and a testament to the power of prayer and the Power of the Lord God Almighty.
Wednesday, December 31, 2008
Posted by Alicia at 6:29:00 PM
Tuesday, December 30, 2008
I have recently become a follower/stalker of a blog called Finding Normal. This mama is inspiring and amazing and she is celebrating her one year "blogiversary" soon. One of my favorite posts of hers is titled "Warrior Mamas". In this post, she speaks so eloquently about what it is like to be a special needs mama. So go check her out, leave her a comment and let her know you're out there.
Posted by Alicia at 3:49:00 PM
Saturday, December 27, 2008
Posted by Alicia at 8:29:00 PM
Wednesday, December 24, 2008
For once I'm not talking about PT, OT, or ST.
Remember it is not too late to be good... Santa is still watching!
I hope that you all take time tonight to reflect on the real Reason for the Season... our Savior, Jesus Christ.
Have a wonderful Merry Christmas everyone!!
Posted by Alicia at 8:38:00 AM
Saturday, December 20, 2008
Posted by Alicia at 12:58:00 PM
Thursday, December 18, 2008
Tuesday, December 16, 2008
Partying atop the Stratosphere Tower, Las Vegas. Yeah, we both were pretty intoxicated!
Posted by Alicia at 8:31:00 AM
Saturday, December 13, 2008
Miss Marissa and Mr. Gingerbread Man have the classic love/hate relationship.See for yourselves...
Now before you go thinking that we are horrible people who love to torture our kid, let me explain. She stands at the fireplace, looking up at Mr. Gingerbread Man and asks for him constantly. Then, when we bring him down, she repeatedly asks for him to sing his song. The evidence is all in the video. You hear her trying to say and see her signing "want" and "play". She even tries to push the button herself. Then she is back to laughing at the end. :)
She did the same thing the other night when my sister Michelle babysat for the evening. Auntie Chelle sang different songs and Marissa enjoyed them. Then Auntie Chelle sang "Away in the Manger" and Marissa melted into a puddle of tears!
She is such a crazy baby!!
P.S. Happy 21 Month Birthday today Baby Girl!
P.S.S. Marissa loves to watch videos of herself more than anything in the world. But when she watches this video, she cries!!
Posted by Alicia at 4:25:00 PM
Thursday, December 11, 2008
Posted by Alicia at 7:32:00 AM
Tuesday, December 9, 2008
Posted by Alicia at 10:17:00 PM
Monday, December 8, 2008
First of all, I would really like to thank all of you who left words of encouragement, support and love. I really appreciate you all helping me through my rough spots. It helps more than you'll ever know.
Since I only recently started this blog and many of you readers might not "know" us, I thought I would give you some background into who this little family is and how we started on this journey together.
It started back in 1989. I was a freshman in high school, (yes I know I am dating myself!) and Jeremy had just moved over the summer from California to the little town I grew up in called Pagosa Springs. Pagosa Springs is a town in the southwest corner of Colorado, about 60 miles east of Durango.
Jeremy was a long-haired, ripped jeans and heavy metal t-shirt wearing kid. I was intrigued by him the moment I laid eyes on him. I would not say I was attracted to him, but he was definitely different than anyone else I had ever met (you know, in all my 14 years). He definitely was not my type. I was the preacher's kid from nowheresville, USA and he was the heavy metal dude from California. But I was intrigued.
(Sorry for the poor picture quality. I don't have a scanner so I had to take pictures of pictures)
On February 13, 1990, he asked me to be his girlfriend. I said yes but I asked him why he didn't ask me out the next day (Valentines Day). He said he couldn't wait any longer. Too cute! For the next three years we had an on-again off-again relationship. We had dreams of being together forever but of course we were just kids. Finally at the end of our Junior year we started talking again after several months and decided to give it one last shot. We have been together ever since.
This pic was taken right before we took our last final for senior year
I will spare you all and continue this long story in another post.
Posted by Alicia at 11:42:00 AM
Wednesday, December 3, 2008
For the most part, I have used this blog not only as a way to keep friends and family updated on Marissa but also as a therapy of sorts for me. A way to keep my spirits up in the midst of my family's not so fun circumstances. A way to keep focused on the positives rather than the many negatives in our lives. I tend to post funny and cute things about Marissa, even if it has not been a funny or cute day. I didn't make a conscious decision to blog this way, it just kind of happened. And I like it that way.
But today's post is not going to follow that pattern, so please bear with me.
This morning Marissa woke up around 6:30 and was perfectly content to play by herself in her crib. I lay in my bed across the hall watching and listening to her on the video monitor. I must have dozed off for a moment because somehow, I missed her throwing up. I came into her room around 6:45 and started undoing her from all of her equipment. I found that she had throw up in her hair, and oddly enough, only in her hair. Thank God it was only in her hair and not in her trach, but it also created a bigger problem for me. I'll get to that in a little bit.
For Marissa and other tracheostomy patients, throw up presents a unique problem. For those of you who are not familiar with trachs, I will give you a short tutorial. A person's nose and mouth are not only the way we breathe, but they also act as a filter for germs. Since Marissa breathes through her neck and has no filter, she is more susceptible to germs and, therefore, gets sick easier, faster and more severely.
The trach is also a direct path to her lungs. The littlest bit of fluid dropped into her trach has the potential to go straight to her lungs almost immediately. For this reason, throw up is a very scary thing for her and us. If she is lying on her back or is reclined and throws up, it most usually goes right into her trach. We have to be very vigilant and if we notice she has gotten vomit into her trach, we have to immediately deep suction her trach to clean her out. Then, for about the next 24 to 48 hours, we live in fear of pneumonia developing. Not fun. She has had two aspiration pneumonias in the last year and one of them, I'm pretty sure, was from aspirating vomit that got into her trach.
This morning, however, aspiration was not a concern to me since she had her trach mask on and I knew she did not get throw up in her trach. But another problem a throwing up trach kid presents is that of clean up. Her trach tube is held in place by soft fabric ties that go around her neck. If these get wet or dirty, we have to change them or else her skin could start breaking down underneath them. I know of other trach parents who are very versed in changing their kid's trach ties by themselves. Not me. I just can't do it by myself. It also takes two of us to bathe Marissa. One of us to prevent water from going into her trach while the other washes and rinses her off.
Usually, if she throws up on herself, I can just sponge bathe her by myself. However, because she had throw up only in her hair, and her hair was covered in the stuff, I had to come up with a way to wash her hair by myself. I had to keep her trach ties dry while soaking, washing and rinsing her head and, oh yeah, not getting water in her trach. I had to call Jeremy at work because my morning brain could not think clearly enough as to how I was going to accomplish this. He helped me come up with a way to do it and I got to work.
But my point is this. I am tired of not being able to do anything in a typical manner. A typical mom with a typical kid would have stripped her down, plunked her in a bathtub, and been done with the whole deal in five to ten minutes. Not me. I have to plot my actions very carefully, as though I am going into battle. I have to have all equipment and supplies she might need within arms reach. I have to make sure all my bases are covered or my child could get very sick. Or even worse, she could die.
I am so tired of this. I am tired of having to worry about her throwing up and it going directly into her lungs, or getting all over her and me not being capable of cleaning her up by myself. I am tired of not being able to just put my kid in a bathtub when I need to. I am tired of not being able to just put her in her crib and leave the room because she will tangle herself up in her tubes and wires and disconnect her feeding tube, etc. I am tired of not being able to pack a simple diaper bag and head out the door with my toddler to run a quick errand. Instead, I have to pack life saving equipment and supplies just to run a quick errand. I am tired of having to think and re- think and re-re-think just to do something a typical parent would do easily and naturally. I am tired of walking this path. I am tired.
And yet, as I type this, I can think off the top of my head of five different things Marissa did to crack me up today, and its only 12:30. I know I am blessed.
Thanks for listening (or reading, I should say).
Posted by Alicia at 12:52:00 PM
Monday, December 1, 2008
I will probably anger the universe by posting this and thus, bring some major bad doo doo to our house, but I am also knocking on every piece of wood I can find. (I am definitely NOT superstitious in the least little bit, by the way ;)
Marissa did something in November that she has never done before in her whole life. Well, actually it is something that she did not do. She went an entire calendar month without seeing a doctor! She did not see one doctor in the month of November, not ONE! In fact, she hasn't seen a doctor since October 16. A whole month and a half without seeing a doctor. WOW!! With seven specialists plus her pediatrician, that is saying a whole lot. So, how about a big collective YAY for no doctors! Let's see if she can hold out until her next scheduled appointment on December 23rd.
And now, for our third installment of the Awesome Hair Series:
Awesome Hair Part III !!!
I do realize that this song is not exactly appropriate for an almost 21 month old to be listening or dancing to. I personally really dislike this song but Marissa loved the beat and for the sake of shooting a cute video, we played it. :)
Posted by Alicia at 11:54:00 AM