"Listen to the mustn'ts, child. Listen to the don'ts. Listen to the shouldn'ts, the impossibles, the won'ts. Listen to the never haves, then listen close to me... Anything can happen, child. Anything can be." - Shel Silverstein

Wednesday, December 31, 2008

Happy New Year!!

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.


Raise your glasses with us to a prosperous and healthy Happy New Year!!

On a different note, I am asking for your prayers for myself, Jeremy and Marissa in the next month and beyond.  Marissa's kidney surgery is a short three weeks away and Jeremy and I are already having a hard time dealing with the upcoming stress.  We talked about it just last night we and are both very nervous and scared.  Nervous and scared not only about the surgery itself and the anesthesia, but the recovery.  It was unimaginably difficult to see her have surgery as an infant and watch her recover.  Now she is old enough to understand pain and communicate her discomfort.  She also has proven to regress in her therapies after a week long cold... I can't imagine how much she will regress after her belly is cut open.  I know this surgery is necessary, but I am dreading it.  I have to admit, I feel a little silly being so nervous about this surgery.  I know of other children who have had much more intense surgeries and I can't help but think that we are lucky this is considered to be a "routine procedure".  I know of kids who have had their skulls taken apart and put back together again... twice, for pete's sake!!

Please pray for peace for our little family as we get closer to Marissa's surgery.    

P.S.  I ask for your patience and  I "HOPE" (hahaha) you understand the delay in the next installment of "The Story of Us".  Aside from the busy holiday season, I am having a hard time recalling the events of March through May, 2007.  It was a very scary and difficult time for us.  I can't believe how emotionally draining it was to write the  "Story of Us IV" post.  This one is proving to be ten times more draining.  I will post the next installment as soon as I finish it.  Thanks for your patience.  

Tuesday, December 30, 2008

Happy Blogiversary Finding Normal!!

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.


I tell ya, this whole blog thing is so cool!  I have "met" so many inspiring people I would never have been given the opportunity to meet otherwise.  We cheer each other in the triumphs of life and hold each other up in the tough times.  It really is like a free support group and therapy session and I'm addicted!!  Thanks Jen for getting me hooked!

Saturday, December 27, 2008

Christmas Pictures

Snugglin' up with Marissa on Christmas Eve. Thanks for the cool blanket Janice!


Guess who?

Cyclops Mama hiding away from the crazies that invaded my house!



Marissa and Nana (my mom) We went to Build-A-Bear today so Nana could make her this cute kitty cat. Her name is Kitty Kitty Bang Bang!

Posing for pictures with Sleeping PaPa (my step-dad) is a lot easier than trying to pose with the awake version. That's one heckuva scary beard!!
Showing some love to Sleeping PaPa

Hoppin' on Auntie Katelynn, aka Katers, Taters, Booger, Boo, etc. This is the Auntie that everyone in the NICU thought was Marissa's mom. They even share the same birthday!!
Sweet moment with Mommy and Daddy


Oh how she loves Uncle Nate and Auntie Chelle

And who could get enough of Dancin' Rissa? Well, watch her anyway, it'll make you smile. :)

video

Wednesday, December 24, 2008

Therapy Can Do Some Good!

For once I'm not talking about PT, OT, or ST.


I just wanted to update you all on the Marissa/Mr. Gingerbread Man situation. Both parties agreed to go to couples therapy last week and are working on their issues. If you missed the original post, click here. I think they have finally made a breakthrough.

Marissa has agreed that she will not be so sensitive and cry every time Gingy (that is her pet name for him) sings to her. She thought he made a good point when he said that he is only trying to make her smile and laugh when he sings his song.

Gingy agreed to let her carry him around by his arms, legs and head and throw him down the stairs as she sees fit. He also agreed to sit quietly on the mantle for the rest of his time here unless she absolutely insists he come down. There were a few times he was mysteriously found sitting on the floor and he accidently startled her.

Here is a video to show you just how much this young couple cares about their relationship and how hard they are working on being happy together.

video

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!!

Saturday, December 20, 2008

The Story Of Us Part IV

Picking up where we left off... (If you missed the posts leading up to this one, click here for Part I, here for Part II, and here for Part III).


This is where the story gets lengthy and quite heavy. I have my mother's gift of gab and attention to every mundane detail, so bear with me, my friends. You might have to read this one in installments, just remember where you left off!

I started bleeding about a week before Labor Day, 2006. Of course, the first thought that went through my mind was we were going to lose this baby too. I prayed to God to save this child that Jeremy and I wanted and already loved so much. I prayed for Him to not break our hearts in this way yet again.

I also went to my OB and she put me on medication to keep the pregnancy. I bled for about a week and half and then it stopped all of a sudden. We waited and waited. We finally thought we were in the clear. Around 9 weeks, we had an ultrasound and could actually hear the baby's heartbeat. What an encouraging sign! A prayer answered!

Everything went well for the next 2 1/2 months. Then, at 19 weeks, we went to our ultrasound to find out if the baby was a boy or a girl. We first found out she was a girl. Jeremy called it! I thought for sure she was a boy. Then the ultrasound tech got really quiet, the kind of quiet where you could tell she was studying something but also the kind where you could tell she saw something not quite right. She told us she saw an enlarged left ventricle in her brain, but could not tell us the significance of this finding. That would be for the doctor to decipher. We sat down with the doctor and she told us that it was just too early to determine what, if any significance this new finding would have on our baby. However, she told us that my pregnancy was now considered high risk because of the bleeding and the new "issue". Great! She also told me that I would need to be seen by Maternal Fetal Medicine at the hospital and most likely they would recommend an ultrasound every three weeks to check for the baby's growth and the growth of the ventricle in her brain. Double great!!

Jeremy and I went into immediate maintenance mode. I have found out something about myself and the way I deal with high stress, life and death situations. I don't panic right away. I stay calm while I am initially dealing with the situation at hand. Weird, huh? I have always been known as the drama queen by my family and friends, so this is totally out of character for me.

A few days after the initial finding I went to the hospital for a more in depth ultrasound. Once again, the techs and docs could not tell me the significance of the enlarged ventricle and they also found some other "anomalies". Her head size was small, her abdominal girth was slightly large, and she was small for her gestational age overall. I scheduled my next ultrasound for three weeks later and also a session with a genetics counselor. I walked out of that appointment scared out of my mind, knowing at that very moment, our life as we had known it was over. Nothing was going to go "normally" from here on out.

Jeremy and I met with the genetics counselor who went through a lengthy family history on both sides. I do have two occurrences of Down Syndrome on my side of the family, both second cousins, but that was not significant enough to warrant concern. There was nothing in either of our genetic histories to suggest a high probability of any specific birth defect. Still, an amniocentesis was recommended. There was a slight suspicion of a spinal defect, possibly Spina Bifida. We discussed the benefits and risks of this procedure and went home to sleep on it. We ultimately decided to go ahead with the procedure. I felt like I needed to know as much as I could about my baby so as to prepare myself for her future. Another thing my family and friends know me for is my control freak nature. I so badly wanted to "let go and let God". I still have this problem. I just felt it was better to know ahead of time.

Apparently, the genetics department had a different reason for doing the amnio. We waited about a week for the results. When they came in the day before Thanksgiving, we were told that there were still no significant findings, but of course, they can't test for everything under the sun, so we were pretty much back where we started. They wanted us to come in and discuss the results a little more at length. I wish I knew then what I know now... I would not have agreed to this meeting. Looking back on it now, I am actually pretty angry about the way they handled the results and discussed them with us.

We were sat down and told that even though they did not find anything significant, the baby did have some "anomalies" and they weren't sure how well she would continue to develop and how things would turn out. Then they mentioned the word that still makes me cringe and sick to my stomach... termination. They said that even though I was quickly approaching 22 weeks and that was too late in Colorado to terminate, there were a few states that would terminate up to 22 weeks. WHAT??!! I immediately went into a state of shock. I could not believe what I was hearing. Is that what they thought I had the test for? I felt they took advantage of a scared and confused couple. How could they suggest termination when I was so far along, especially when they could not determine exactly what the prognosis was? She was a living person and our child!

Jeremy and I left that meeting holding hands but not saying a word.

We got home and I broke down. I told him that there was no doubt in my mind that this baby was meant to be and that I did not want to terminate. With tears in his eyes he told me he felt the same and we made our decision right then. I realize now that this was not even our decision to make. This was our baby but the only One who had the right to take her away from us was God!

My pregnancy progressed and so did the tri-weekly ultrasounds. The first one after the amnio was very interesting, and really wore me out. This was where Marissa first showed her personality, the traits that would come to define her...feisty, stubborn and not willing to cooperate. The ultrasound tech wanted a good view of her back, tried for a little more than an hour to get it in fact. She would not flip over for anything! No matter how he pushed, prodded, or manipulated my belly, she was not going to show her back. I have never been so uncomfortable laying down in my life! The next time, she showed her back right away and they got a good view of her spine. No abnormalities, whew! But then, they wanted to see her front and again she would not flip. The female tech had heard how long the previous tech had fought with my little girl and thankfully did not pursue the quest to see her front for too long. This tech nicknamed Marissa "Miss Sassy Pants" and the name kind of stuck for a while. Marissa definitely had her own ideas and agendas, even in those early days.

Things seemed to go relatively well for the next few months. The ultrasounds showed she was consistently in the 20th percentile for her size and the ventricle in her brain was not growing disproportionately. She was breech, frank breech to be specific. This particular type of breech meant that both her legs were up at her head. My mom used to be a nurse in the newborn nursery and she told me of how she and her fellow nurses got a kick out of going around to all the frank breech babies and putting their legs down. Then they would watch and giggle as the babies legs would inevitably slowly rise back up to their heads. Kinda sick, huh? (Love you Mom!)

I did not really start showing until just before Christmas. This picture was taken just a few days before Christmas and I was about 26 weeks.
I think I was even pushing my belly out just a little so it looked bigger!

I know these pics don't really relate to what I am posting about, but I felt the holiday spirit and just wanted to post them.

This pic was taken the same day as the one above. You can't really tell I'm preggers!!

My big kid on a Jack Daniel's Christmas morning. He loves his Single Barrel "sippin' whiskey"!

Me and some of my crazy cool sibs. (L to R and oldest to youngest: David, me, Brian and Michelle) Still can't tell I'm pregnant a week after the above pics!

Because Marissa was so small, I never really gained much weight. In fact, not to make anyone jealous, I only gained 22 pounds my whole pregnancy! Come to find out that it was not a good thing to have gained so little, it was due to her condition. When I was about 34 weeks pregnant, my ultrasound showed that Marissa had dropped from the 20th percentile for her size to the 5th. She was not growing anymore. They diagnosed her with Interuterine Growth Restriction (IUGR) . They could not tell me what this meant for her future (big surprise!) but they did tell me that they wanted me to deliver her between 38 and 39 weeks. I was devastated. Thankfully God is in control of my life. My mom and youngest sister Katelynn were in town for my baby shower and went to this appointment with me. I had always gone to these ultrasound appointments by myself, but God knew that I would need to be held up that day and He sent them with me. God is good!

Because Marissa had been breech the whole time and she was now in distress, it was decided that I would have a scheduled C-section. We scheduled my next (and last) ultrasound for three weeks later and I went about the business of preparing for my little one to make her appearance. My next ultrasound was on March 13 when I was 37 weeks, 5 days along. We had waited to schedule the C-section until after this final ultrasound. I lay on the table and the ultrasound started. The tech told me that she had dropped yet again to the 2nd percentile. It was really clear she had stopped growing all together. Then he noticed something no one had before. He called the doctor in and they discussed her heart. The tech said he couldn't put his finger on it, something just looked "funky" with her heart. The doctor asked if I had been put on bed rest by my OB. I said "no". The doctor looked at me and said "you've just worked your last day for a while, honey". She told me to go to my OB and tell her what we saw and that I should deliver by the end of the week. This was a Tuesday.

It was all happening too fast and it was very scary. I went directly to my OB's office and we scheduled the C-section. She told me to go home and rest. I was not on strict bed rest, but I needed to stay off my feet. I went back to work, balanced my drawer (bank teller), said my goodbyes and left. I was sad to be leaving, but also looking forward to a little break before Marissa came. I went to Payless shoe store to pick up a pair of faux crocs to shuffle around the hospital in, went to Jamba Juice and Chick-Fil-A to treat myself and then went home. I rested until Jeremy came home later that afternoon, trying not to let the "what if demons" creep into my head. I was in the recliner in the living room when he got home and shortly after he arrived I felt Marissa kick really hard. In fact, it felt as if she flipped around a full rotation very fast. It almost hurt! I don't know if that was any indication as to what was about to happen or not.

We had previously planned to have some friends over for dinner that night and I did not want to cancel. My wonderful friend Shannon came over around 6:00 that evening. I was sitting on the couch in the living room and she and Jeremy were in the kitchen cooking a spaghetti dinner. YUM! We were having a nice conversation when, all of a sudden, at 6:30 p.m. on the dot, GUSH!!

More to come...

Thursday, December 18, 2008

Dance Dance Rissa Roo!!

Tuesday, December 16, 2008

The Story Of Us Part III

Picking up where we left off... (If you missed the posts leading up to this one, click here for Part I and here for Part II ).

Jeremy and I moved to Colorado Springs in August of 1998. He got a job as a propane delivery driver and I started paralegal school in February of 1999. It was a six month program for anyone who already had a Bachelors Degree, so I graduated with my paralegal certificate in early July, 1999. I got hired by a law firm to do basic legal secretary stuff a few months later. I was just happy to get my foot in the door.

Sad to say, this position did not work out and I was back looking for another job. Jeremy was still selling and delivering propane, but being a physical job, it was really taking a toll on his already injured back. I got another position in another law firm being a legal secretary again. I enjoyed the work I was doing and, again, was happy to have my foot in the door. But I was really having a hard time working for attorneys that did not see me as a person, let alone a valuable employee. I quit that job after a few months and started looking again, thinking I must have just run into a couple of not-so-nice lawyers and there were greener pastures ahead.

After going on multiple interviews, I came to the conclusion that the business of law was not for me at that time, and I got a job as a bank teller (what I did in Pagosa Springs after Jeremy and I got married). I left the door open for the future, but I was tired of being unhappy, so I went back to doing what made me happy. Trying to make a long story not so long, I haven't used my degree in a long time and I'm not sure if I will again, much to my family's chagrin. :)

Jeremy worked in propane until Summer 2001. Because of his disability from the Army, he was granted up to four years of school through the VA's Vocational Rehabilitation Program. This program retrains veterans who might not have real world job skills (Jeremy was a tank driver in the Army... now there's a job that transfers to the real world! ;) He decided he wanted to go into electronics and computers. He went to school and received two Associates Degrees. He got a job with HP as a computer help desk technician in January of 2004. He then started working on Fort Carson doing the same thing in May of 2007 and has been there ever since. He is SO in his element, working on an Army post with soldiers, fixing their computers. Its like being in the Army but you don't have to obey their rules or get deployed. :)

When we first got married, because we were so young and broke, my mom wanted us to promise we would not try to have a baby until we had been married at least three years. Well, three years came and went. So did four, five, six, seven and eight! We were financially unstable, living in a tiny rat-hole apartment and just having fun being a young married couple.

Be sure to click to enlarge the pics so you can see how crazy we were before Marissa!



Partying atop the Stratosphere Tower, Las Vegas. Yeah, we both were pretty intoxicated!
We weren't ready to have a baby yet. Anyone who tells you that old saying "if you wait till you're completely ready to have a baby, you'll never have one" is lying. We were told that many times and we are living proof that it is untrue! In November of 2004 we purchased our first home. Jeremy and I were both finally in stable jobs and we started trying to get pregnant in the Fall of 2005.

I found out I was pregnant the Friday before Mother's Day, 2006. We told everyone we knew right away, of course, having waited so long and being so naive. I started bleeding two weeks later, just before Memorial Day. I lost that pregnancy, but in that short amount of time, Jeremy and I already felt like parents. It was so hard to deal with.  We still get very sad about losing that baby and I don't think we will ever get over it.

We waited four weeks for me to heal and our doctor said we could start trying again as soon as we were emotionally ready.  I got pregnant the first time we tried. I know, TMI right? ;)  We found out July 29, 2006. We told no one, not even family.  Three weeks later, however, I was forced to explain to my boss and co-workers why I was needing to go to the doctor a lot all of a sudden.  I started bleeding and it seemed like this baby was going to be taken from us too.

More to come...

(I love keeping you all in suspense! ;)

Saturday, December 13, 2008

Come Here, Now Go Away!

Miss Marissa and Mr. Gingerbread Man have the classic love/hate relationship.

See for yourselves...

video

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!!

Thursday, December 11, 2008

The Story Of Us Part II

It seems someone is a little impatient with how I have chosen to tell our story!  I won't name names, but I "HOPE"  you all understand that with nearly 20 years of history, I have to break it up into parts.  Geez, keep your pants on!  HaHaHa  ;)  Just razzing you girl!

Picking up where we left off... (If you missed the post leading up to this one, click here.)

After high school (1993), I went to the University of Northern Colorado in Greeley and Jeremy enlisted in the Army. He completed basic training at Fort Knox, KY and then was immediately stationed in Vilseck, Germany, where he would spend the next 2 1/2 years. He was not able to come home very much because he was always on alert to go to Bosnia, however, he did come home Christmas of 1993 and asked me to marry him. I said yes, but because we had no money, I had to wait to get my ring until the next Christmas. We agreed that it was important for me to finish school before we got married, so we had a long engagement. See Mom, it was possible for us to make a responsible decision being that young! :)


My Handsome Soldier

Jeremy finally got stationed at Fort Lewis, WA in April of 1996 and was a little closer to home. He would end up injuring his back and left the Army in the Spring of 1997. He came to live with me and my roommates.  (I'll save the House Boy and Jeremy's Harem stories for another time and place  ;) ... don't worry, its all innocent!)  I graduated that May with a BA in history with a legal studies minor. I wanted to go to paralegal school and then possibly law school. I knew I needed to continue my education but I had just gone through the death of my step-brother, a stressful last semester at school and was trying to plan a wedding. I was just not in the right place to keep going to school at that time. We of course were both broke, so Jeremy's mom made us an offer we couldn't refuse. Move in with her in Pagosa rent free, save up money and then move out and go back to school. So we moved in with her and had our own room with a bathroom, so it was almost like living on our own. ;) Honestly, moving in with his mom saved our skins and she was great to live with. She let us have our space and our time and was so gracious. Thanks again Janice!

We got married on July 12, 1997 in Pagosa Springs. We continued to live with Jeremy's mom until we saved enough money and moved to Colorado Springs in August of 1998.




Be sure to click on these pictures to read the words







This pic was taken about 8 months after we got married.


More to come...

Tuesday, December 9, 2008

Last Words Of The Day

I walked into Marissa's room a little while ago to relieve her dad after nearly an hour long attempt at getting her to go to sleep.  I sat down in the rocking chair beside her crib and, in a firm voice, I told her "Marissa, playtime is over.  It is time to go to sleep.  Now."  

You know what she said to me?

"Uh-oh Mama"

Do you think I got my point across?






Monday, December 8, 2008

The Story Of Us Part I

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)



Freshmen... so young!!


In January of 1990 he started hanging out around me and my friends. We had a couple of classes together and I always thought he was kind of weird. Nice, but weird. We lived close to each other and rode the same bus. He even worked at the rec center where my family often went swimming. He started hanging around more and more and he was becoming less and less weird to me.


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.



My yearbook senior picture 1993



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.

Wednesday, December 3, 2008

Tired of Walking This Path

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.

The look on her face says it all for both of us!

The trach mask and Heat and Moisture Exchanger,
or artificial nose, that I used to protect her trach


It ended up fine. I was able to keep her ties dry, able to keep water out of her trach, able to soak and wash her hair, and able to get almost all the soap out of her hair.

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).

All's well that ends well, I guess.

Monday, December 1, 2008

Major Accomplishment

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.
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And now, for our third installment of the Awesome Hair Series:


Awesome Hair Part III !!!




Grandma in Utah, just so you know, your son had nothing to do with this one. I acted alone. :)


Marissa having a blast walking, signing and dancing

video

video

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. :)