"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

Saturday, January 3, 2009

Eeeewwww, I Ain't Touching That!!!

Many of you can relate to what its like to have a kid with sensory issues. Marissa has difficulty handling certain things because of the way they feel. This issue goes beyond her simply not wanting to touch certain items. It also affects the way she eats, or will eat in the future. Her Occupational Therapist has been heavily concentrating on getting her to work through her sensory issues so we can attempt to get her to eat without gagging and throwing up because of the textures. The first step, though, is being able to touch these items with her hands and also being able to tolerate them touching her face.


These are a few of the items she has trouble with, or has had trouble with in the past: A fuzzy sock, creepy tentacle ball, slimy goo, and cotton.

She has overcome her issue with the sock and the slimy goo. She has almost conquered the cotton but the tentacle ball still really creeps her out. At the end of the summer,we finally got her to put her feet and hands in the grass. However, without grass to play in over the winter, I am sure she will regress somewhat.


Marissa's OT has her sit in her high chair every session and gets her to try touching the different items. The next pictures and video show that she has come a long way in overcoming her problem with shaving cream. About a month and a half ago, if you even so much as put the shaving cream on her tray, she would gag and throw up! She then got comfortable enough with it that she could touch it, then her OT tried putting it on her baby's face. You should have seen it. Marissa was actually yelling at us! She couldn't believe how we were torturing her poor baby. Well, as you can see, she has overcome that now. Yay!!









I love how she tries to detract from the situation by dancing. That's my girl!!

She is so proud of herself for being able to touch the sock. You should see her cheer and clap for herself, too cute. I am so proud of her too. It has got to be pretty scary being her sometimes.

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. :)

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.

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!!