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
Thursday, November 27, 2008
I had just recovered (physically, not emotionally ) two months prior from a miscarriage. Even though we only knew for two weeks before losing the first baby, we felt we were already parents. We found out we were pregnant with Marissa on July 29, 2006. About two weeks later, the drama of having a high risk pregnancy began. I won't go into all the problems I experienced during my pregnancy right now, but we weren't sure if she would hang on long enough to be born, let alone be born healthy.
At the beginning of November we decided to have an amniocentesis. The doctors were telling us that if we found anything, we had the choice to terminate. In my mind, we weren't having this procedure to make a decision to terminate or not, my control freak brain just needed to know what was going on with my baby.
The day before Thanksgiving I got a phone call from the Maternal Fetal Medicine center at our hospital. They said the results came back negative for certain syndromes or problems, but they could only test for so many problems and there still were the existing issues. We knew she didn't have Down Syndrome or Spina Bifida, but other than that, we didn't know much more than before the test. The next day I sat at the Thanksgiving table with my husband and sister and thanked God for the little life inside me. I knew right then that even though it was going to be a long bumpy ride with many unknowns, Jeremy and I were up for it.
After Marissa was born we spent the first two months watching her fight for her life, coming close to losing that fight many times. There is no doubt in our minds that the tracheostomy and g-tube that were placed on May 9, 2007 saved her life. Even though this is not an easy life by any stretch of the imagination, Jeremy and I are so thankful that Marissa is here and is as healthy as she is. She has changed our lives immensely and we would be truly lost without her.
I am thankful for many other things too.
I am thankful to have a husband that puts up with me (which is an amazing, almost impossible feat at times!) He is my best friend and such a good husband, father and provider.
I am thankful for Jeremy's job. Even without the help of Medicaid (which still has not kicked in yet) Jeremy works hard enough that I don't have to work outside the home. I don't know what we'd do if this were not the case. Marissa can't just go to any regular daycare!
I am thankful for my sister Michelle who has saved my sanity more than a few times. Having her here in the same town is such a blessing, even before she became Marissa's babysitter. :)
I am thankful for the rest of my family. We have our moments, of course, but they are the world to me and I am thankful that the majority of them live in this state.
I am thankful that Jeremy's mom is healthy again and was able to come out and meet Marissa for the first time in May. As Marissa was fighting for her life, Jeremy's mom was also fighting for her life at the same time. We love you Grandma in Utah!
I am thankful for the way our families treat Marissa. They have embraced her and accept her the way she is. They don't look at her as different, just special.
I am thankful that with as large a family as I have (four parents and six kids between them), that we are all happy and relatively healthy. I do not, however, forget that we used to be a family of seven kids. We miss and love you Scooter!
I am thankful for friends, old and new and even friends online that I have never met. I would not be the same person without them.
I am thankful for my new "trach family". You know who you are. I am so blessed to be able to get together with such sweet spirits that "get us". I love you all.
With as long as this list is, there is still much more I am thankful for.
I hope and pray that you are able to see the blessings in your lives and can be thankful for them every day of the year.
Posted by Alicia at 9:21:00 AM
Tuesday, November 25, 2008
This morning around 1:30 Marissa started getting restless. When she does this we try to see if she will settle herself down on her own. Sometimes she does, sometimes she does not. This morning she was not able to settle herself down so I asked Jeremy if he could get up and help her go back to sleep. He got up and a few minutes later came back to bed. Marissa lay quietly for a few more minutes then started up again, so I got up. We did this routine two more times a piece.
Finally around 2:30, exasperated, I asked the rhetorical question "what are we going to do?" Jeremy responds in his "I'm not awake voice" and we have the following conversation, if you want to call it that:
(Imagine your best groggy slur)
J: I'm thinging.
J: I'm thinking.
Knowing full well that he was not thinking (or thinging), but sleeping instead, I decided to have a little fun with him. I allowed a moment or two to pass and then said:
A: You're not thinking!
J: Am too. I'm thinging abou fah shah, bud tha won work fer a baby.
J: I'm thinging abou fah shah, bud tha won work fer a baby! (obviously perturbed at me for making him repeat himself)
A: What is fah shah?
J: (said almost consciously) File sharing, but that won't work for her! (Jeremy fixes people's computers for a living)
A: What are you talking about? (trying in vain to control my laughter)
J: Oh I don't know, I thought I could try file sharing.
A: Are you awake yet? (uncontrollably laughing)
J: I am now. I know, I know I'm not making sense. (now laughing too)
A: Poor guy, you're working in your sleep!
A: You know I'm going to have to blog about this tomorrow. (giggles)
J: Yeah, I know (giggles) Go ahead.
Marissa settled herself back to sleep and so did we.
And yes folks, I conquered the pile. We now have a dining room table again.
In a couple of days I'll be able to show you our Thanksgiving Feast on our "new" table! I'm so excited!
Posted by Alicia at 7:15:00 AM
Thursday, November 20, 2008
There are many aspects to my life as a mommy. Like every other parent, there of course is the typical role I play as a mommy to a toddler who is literally into EVERYTHING, especially the things she is not supposed to get into. Like every other parent, Jeremy and I are her teachers. We try our best to teach her things like patience, being gentle and kind to others, and right from wrong.
As a mommy to a toddler with special needs, there are the roles of nurse, therapist, and advocate for my child.
When I became a mommy, even a special needs mommy, I was prepared for all of these roles. I embraced them. That is not to say that I do not struggle or am not challenged in these roles even on my best day. But I saw them as part of my daily life and prepared myself for them.
The one role that I never thought about, the one I never prepared myself for, is that of businesswoman. I am talking about the role I have to play when dealing with the endless, hours long phone calls to and from insurance companies, early intervention, doctor's offices, medical equipment supply companies, Medicaid, Jeremy's Employer HR department. The countless hours I spend coordinating and scheduling therapies, surgeries, order and delivery of supplies and equipment. I'm not sure why I never thought about it. Who else did I think would be taking care of these things? It kind of snuck up on me, I guess.
And the paperwork, OH the paperwork!! Medical records, bills, receipts for co-pays and scripts, plans of care and IFSPs, paperwork for upcoming appointments and procedures, insurance EOBs (there are literally close to a thousand every year!), study reports and evaluations, forms to fill out. PHEW!! I think any parent of a special needs or medically complex child can relate to what I am saying.
When we first brought Marissa home and I was smacked in the face with this role, I would let the paperwork pile up on the table. I quickly realized that I needed to get organized, so I bought a file box. This method worked very well for a while.
Then it became too full and I knew I had to go through it and get rid of a bunch of stuff. Of course this requires just a little more than your average cleaning since all of the paperwork has our personal info on it. I can't just throw it away, I have to shred it!
Over the last couple of months, this role as businesswoman has completely overwhelmed me. I allowed the paperwork to just pile up on the table and the thought of tackling this job has been more than I can wrap my head around. But, now Thanksgiving is a week away. I refuse to eat our family dinner on t.v. trays in the living room! My hand is now forced and I must face the role of businesswoman/document shredder/paperwork sorter and filer head on. This is what I am going to face on Saturday:
Posted by Alicia at 9:45:00 AM
Monday, November 17, 2008
Last weekend I was watching t.v. and a VW commercial came on. I'm sure you have probably seen the one... Brooke Shields talking about how all over the world people are having babies simply for German engineering and to be able to justify getting VW's new minivan. I finally paid attention to that ad and that new minivan looked sweet! It does not look like your typical minivan. So this weekend Jeremy and I went car shopping. We weren't going to pick one up, but just look at them and get an idea of what they were all about.
Well... we ended up signing a lease on a new VW Routan and brought it home on Saturday! Our sales person said we are the first to pick one up in Colorado Springs and possibly the first in Colorado! It is such a cool car with so many cool features. For safety, we are going to put snow tires on it.
Posted by Alicia at 10:40:00 AM