"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

Friday, January 30, 2009

The Story Of Us Part V

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, here for Part III, and here for Part IV). As you read this, please understand that this was very difficult for me to write. There are so many emotions wrapped up in this part of the story, emotions that I know a lot of you out there can relate to. It is also very long.


So, Jeremy and Shannon had just finished cooking the spaghetti dinner when I jumped up from the couch and yelled "Oh $#!%, my water just broke!" Luckily I was wearing my new faux crocs that I had bought a mere 6 hours earlier, and did not ruin my nice shoes. I ran upstairs to the bathroom and Jeremy called the doctor's office, while Shannon busied herself putting dinner in plastic bowls. When I looked, there was no meconium in the fluid, so that was good news. For those of you who may not know, meconium is the baby's first poop. If there is meconium in the amniotic fluid it means the baby is in distress. I was not having contractions but of course my mind was swimming. The doctor on call asked the important questions and said to take it easy and get to the hospital within two hours and he would meet us there. No rush. Good!


Since I was only 37 weeks and 5 days along and had already scheduled the c-section for the beginning of the next week, I thought I had a couple of days to get ready to go to the hospital. I had not packed a bag of my stuff or Marissa's stuff. We had, by the way, been told that despite her "issues", they would probably keep her in the special care nursery for a couple of days for observation, probably as long as I was required to stay for surgery recovery, and then we should be able to bring her home. So I had Jeremy quickly pack a bag for us and we called our immediate family members to let them know what was going on. I did not eat anything since I knew I was most likely going into surgery soon and I think Jeremy was too nervous, excited, scared and busy to eat. Shannon took off a short time later and Jeremy and I sat down on the couch to collect our thoughts. We held each other close and talked about how the next time we'd come home, we would have a new bundle with us. Little did we realize how wrong we were.


We got to the hospital and they got me into a room. I changed into the gown and laid down on the bed as the nurse started hooking up the monitors. I think it was more nerves than being cold but I started shivering. The nurse asked Jeremy if he could go get me a warm blanket and told him where he could find them. Jeremy came back with a couple of pink and blue striped baby blankets. The nurse chuckled as she told Jeremy of his mistake. He smiled sheepishly and went back to get me the adult sized blankets. I can still remember how good those warm blankets felt at that moment.

As I lay on the bed, the nurse began asking me questions about my pregnancy. A short time later I started feeling contractions. They weren't really strong, which I was grateful for. One nurse came in and told me that the doctor who would be performing the c-section had arrived at the hospital and was being briefed on my situation. Unfortunately, because my water spontaneously broke, my OB was not on call and would not be there to do the c-section. This other doc had another c-section to do and then I would be next, probably in about 2 hours. I was getting ready to settle in (as much as one can settle in while having contractions!) when one of the nurses pulled back the blankets to check the position of the monitors. She looked up at me and asked if I knew that I had meconium in my amniotic fluid. WHAT?!?


I told the nurse no, that wasn't there last time I checked. I immediately panicked and they told me I needed to stay calm so the baby would not go deeper into distress than she already was. One nurse left for a few minutes. When she returned she informed us that she let the doctor know of the new developments and he said that he was bumping me up as an emergency c-section. They would be wheeling me into the operating room within the next ten minutes. My whole body went numb with fear. Jeremy and I looked at each other and I felt the urge to just jump up and hold him. I could see the color had left his face, and I was immediately worried about him and how he was dealing with all this. Neither of us had any words to say to one another. He just held my hand and we sat silently as the nurses busied themselves getting me ready to go. They were explaining the procedures and how things were going to go... epidural, Jeremy not being able to join me until after the epidural was placed, the NICU team that would be present to take the baby and assess her after she was born, and so on. We listened intently. It was 9:45 p.m.


They wheeled me in my hospital bed down the hall to the OR and stopped at a doorway. They let Jeremy know this was where he was to wait until they had the epidural in. He leaned in to kiss me and I got really scared at that point. For at least the next few minutes both he and I were going to be alone, without anyone else around who really knew us. I, by the way, had told my sister Michelle to just stay home because she would probably just be spending the night in an uncomfortable chair in the waiting room being pretty bored. Oh how I wished at that moment I had not told her that. She could have at least come to be with Jeremy while he waited. Hindsight truly is 20/20.


They took me into the OR and I remember thinking to myself how bright and white it was in that room. Stark. They got me onto the operating table and then the anesthesiologist did my epidural. I laid back down and immediately felt my legs go warm, then numb. I was so happy to see Jeremy come in. He came to be by my side and we kissed and said hi to one another. Even though I could see he was scared too, he was my rock.


The doctors and nurses were buzzing around for a few minutes. I decided to chime in and ask "so, you are going to tell me when you are about to cut me open, right?" The doctor said, "well, you're already open." Jeremy stood up and looked. I was very glad at that point that I could not see what was going on down there. For the next few minutes, Jeremy kept standing up and then sitting back down next to my head, giving me a running commentary of what was happening. I felt the tugging but no pain, like everyone said I would. I heard a nurse say "there's her little rump!" and Jeremy gave a little sigh/giggle. He then said that he saw her little arm pop up into the air and her fingers sprawled out, as if she was waving "hi!". He giggled again. All of a sudden I heard the nurse say, "she's out and she's got blonde hair!" Marissa Lynne Cortez was born at 10:20 p.m. on March 13, 2007. She weighed 5 lbs, 4 oz and was 18 inches long.


It was silent for a brief moment that seemed like an eternity and then we heard a faint cry. Oh Joy!!


The NICU team took Marissa over to the table and started working on cleaning her up. They soon showed up on my side of the curtain with my beautiful little girl wrapped in a blanket with a cute little hat on her head. She was crying and Jeremy and I both noticed immediately that her chin was small and her lower jaw seemed to sink in quite far. She also was squeaking every time she breathed in.



The NICU team took her away from me after what seemed like only half a second. They soon came and told Jeremy and I that they were taking her to the NICU and he might want to come with them. He kissed me quickly and was gone. All of a sudden, I had no husband. I had no baby. A piece of my heart and soul, and quite literally my body, gone in a flash. I was utterly alone in a room full of strangers that were fully responsible for my life at that very moment. I was in shock. I am known as a bit of a cryer, but the tears would not come. I was numb.


The next span of time is a blur. I have no idea how long it took to sew me back up. I can't remember leaving the OR. I don't remember the ride down the hallway. Next thing I knew, I was in a recovery room with the two nurses that had taken care of me since I got to the hospital. I kept hearing a little dinging sound (one I would come to know very well) and one nurse kept telling me to breathe deeply or they would have to put the nasal cannula with O2 back in. I was trying to breathe deeply but I was so drowsy. They ended up giving me the nasal cannula back. One nurse kept leaving and coming back. She came back one time with an update. She said they had to intubate my newborn daughter but that she was stable now. As the daughter of two EMTs I knew what intubate meant. It still did not register with me that my daughter was sick enough to need a machine to breathe for her. I still thought she would be out of the NICU and coming home with us in no time. I just didn't get it.


Jeremy came in at some point and I could see he had color back in his face, however, it was green. There was a little bathroom on the other side of the room I was in and he kept going to it. Back and forth. He didn't really say much. He just kept going to the bathroom. I, for some reason, didn't think anything of it. Man, I was out of it! He told me later he kept going in there because he thought he was going to throw up and he was trying not to cry. He was trying to be strong for me, to protect me.


When I was deemed stable, the nurses told me that they were going to take me up to the Mother Baby Unit. I can only now appreciate the irony of the Mother Baby Unit. So often, the mother is there without her baby. I was not the only one that night.


The nurses first wheeled me into the NICU to see my baby girl. Jeremy was walking beside me as they brought me to Marissa's bedside. I looked at her lying there and I was regrettably still numb. I knew I loved her and was worried for her, but through a cloud of drugs and my brain wanting to protect me from yet another trauma, I didn't let it sink in what was really going on with her. The NICU nurse in charge of Marissa for the night started talking to us about what they had done for her so far, what medications she was on, and what they had found was wrong with her so far... so far. Still not registering. I held Jeremy's hand and we looked down at our little girl, paralyzed, with tubes and wires coming out everywhere. Still numb.


I was soon wheeled up to the Mother Baby Unit and squeezed into the tiny corner of a room that was already occupied by a sleeping new family of three; three like we were supposed to be. Jeremy waited in the hall with our bags that were packed for both Marissa and I. When I was settled, Jeremy came in and set the bags down.  He quickly realized there was absolutely nowhere for him to stay. He reluctantly told me that he would head home, that Marissa and I would be fine, that we had great nurses to take care of us and that he would be back early in the morning. It was already 1:00 a.m. I agreed and we kissed each other, squeezed each other's hands and said goodnight. I learned later from Jeremy that he cried the whole way home. He even said he didn't need his glasses to be able to see because all the tears made his vision clear.



That was it. All three of us were alone. Separated. Marissa and I had a full staff of nurses and doctors taking care of us, but we were still alone. Jeremy had never been more alone.



video


This is the first and last time we would hear our little one's true voice for almost a year.


To be continued...

Wednesday, January 28, 2009

25 Random Things About Me

I don't have much to write about right now, I guess that is a good thing.  So I thought I would share with you something that has been floating around blogs and Facebook for some time now and I am just now participating in.  I apologize to my Facebook friends if you have already read this:

1. I have a BA in History and a Legal Studies Minor from the Univeristy of Northern Colorado. I also have a Paralegal Certificate. I have not used my degree or certificate in 8 years. 

2. I was a bank teller before I had my daughter. I liked it much better than being a legal sectetary.

3. My wardrobe used to consist mostly of business casual clothes. Now it consists mostly of sweats and t-shirts.

4. I would love to have at least one more baby but I'm scared to death, not to mention pretty dang busy with the kiddo I have now. 

5. I know more about tracheostomies, g-tubes, PDAs, kidney reflux, corpus callosums, dysmorphic features, AFOs, OT, PT, ST, bronchoscopies, PMVs, multiple congenital anomalies, micrognathia, high arched palates, oral aversion, intubation, O2 sats, and on and on... than anybody without a medical degree ever should.

6. I love my daughter more than life itself (and I don't say that lightly) and I would be lost without her. I would trade my life for her health in the blink of an eye.

7. I started dating my husband when we were 14.

8. I married my best friend when I was 2 months shy of turning 22.

9. I admire Jeremy for being such a great husband, father and provider.

10. I frequently have dreams of my daughter being "normal". When I wake up, I realize how truly grateful and blessed I am to have her just the way she is, simply because I am able to have her at all. She has taught me some of the most important lessons I will ever learn.

11. I think my brothers are some of the funniest people I know.

12. I think my sisters are some of the most loyal and loving people I know.

13. When I went to college, I went into immediate culture shock. I graduated in a high school class of 64 people and moved on to a college student body of 10,000. Whoa, big city!

14. I hate to let my toenails grow out, but sadly, they do quite often. Yuck!

15. I am such a clutz that I have too many bruises to count and I have no idea where most of them came from.

16. I hate my voice. I think it is too deep.

17. I love the color of my eyes, hazel brown and green.

18. I have no less than 20 nicknames for my daughter and I use every one at least once a day. She is going to grow up to have a major identity crisis.

19. I love to startle people but I hate being startled myself.

20. I nag way too much.

21. I cuss way way too much

22. I am the daughter of a Methodist Minister. 

23. I believe in God, but I do not believe I have to go to church to have a strong relationship with Him. Although, I do love going to Women of Faith every year and sitting in an arena with about 70,000 other christian women. Very refreshing for my soul.

24. I clean and scratch my ears with q-tips, much to my sister's chagrin. 

25. I love for my husband to rub my feet really hard. He absolutely hates it.

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Random pictures inserted here:
Whaddya suppose she is looking at?

A get well gift from Miss Shandy
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I guess I could update a little.  Marissa is finally transitioned completely from Lortab to Tylenol, so the poops are back and regular again!  Hooray!

I think when they fixed her kidneys, they took away her ability to nap and I, for one, do not think this is a fair trade.  I need her naps badly!  She has been up since 6 am this morning, so I am hoping and praying she'll nap today.  I am not ready to lose that moment of solace in my day.  

P.S.  Sorry for the different fonts.  I could not get blogger to accept my way of formatting today.  Any other time, I would be totally OCD about this fact but today I am just too tired to fight this battle.  :)

Monday, January 26, 2009

Rissa Roo Update

Just a quick update on my little monkey.  Marissa is feeling better everyday, however, she is still in quite a bit of pain.  We tried her on Tylenol during the day yesterday and we could tell it didn't handle her pain as well as the Lortab.  The problem with the Lortab is that it is a narcotic pain med.  Everyone knows what comes along with narcotic pain meds, right?  Constipation!!! That is right people, we are waiting and praying for poop!!


We had to give her glycerin suppositories all weekend and they helped a little, but she is still pretty backed up.  It is just not fair to know she is not only in pain from the surgery, but she has to deal with the pain of constipation.  Of course, the incision is in the same place as her muscles she uses to push.  She cries so hard until she is done that she just passes out afterward.  So please join us in praying for poop.

We were able to give her a bath and take the dressing off the incision yesterday.  It looks pretty good but it is long.  I knew it wasn't going to be small but I guess it still took me by surprise anyway.  I was even telling a friend on Facebook that it was 5-6 inches long.  At the same time, Jeremy was changing her diaper and he looked up at me as I read what I wrote and corrected me, saying "honey, it is only about 3 inches long."  I had already sent my message, so I had to type another one up real quick to correct myself!  I guess when you are a mama, your brain tends to exaggerate things when it comes to your baby's pain.  I told my friend that a paper cut on Marissa would seem huge to me!

So, overall, she is doing better but she still has a long way to go to get to feeling like herself again.   So keep up the good work Prayer Warriors!

Thanks for checking in!

*********UPDATE*********

I've said it before, you people are good!  And the Lord is Great!!!

WE HAVE POOP!!!  

Marissa woke up as soon as I finished this post.  I went into her room and rolled her over, and well, let me put it this way... poop explosion!  

Poop hurricane! 

Poop tsunami!  

OK OK, you get the picture.  :) 

She broke my heart this morning.  When I went into her room, I opened her blinds and walked over to her crib.  With a smile on my face, in a chipper voice I stroked her hair and asked her how she was doing.   She grabbed my hand, got a big grip of my skin and with a very mean scowl, she pinched me saying "OW!"  Awww, my poor baby!  I am so sad she is in pain and I can only do so much to make her feel better.  I would take her pain on myself if I only could.  

Friday, January 23, 2009

You Prayer Warriors Know How To Do Your Job!!

...and God listens!!! WE ARE HOME!!! CRAZY!!

What a whirlwind! The doctor's requirements for her going home were as follows:

1. She is able to transition off the epidural and IV pain meds to a pain med given through her g- tube... CHECK!!

2. She is able to tolerate her full-strength feeds... CHECK!!

3. She is able to produce enough urine... CHECK!!

4. He also said it would be ideal, although not a requirement, for her to be off supplemental
O2 since her baseline at home is no O2 unless she is sick... CHECK!!

You could have knocked me over with a feather when the nurse said the doctor wanted to know if we wanted to go home tonight or wait for the morning! Ummm, we'll take option "go home now"!!!

When we got the word, we started packing up and getting her unhooked, changed and dressed. She could sense the change in our moods and she perked up right away. At one point, I asked her if she wanted to go home and she started flipping out with happiness. I thought she was going to do a somersault!! The baby that she has not been in the mood to play with since this all started yesterday she was suddenly in the mood to play with. What a blessing!!

Marissa is doing so well, thanks in no small part to all of your prayers. You people are good! And God is Great!!

Here are some pics from today. I had a little love affair with her beautiful little feet as you will see. :)




OK, this is where I started to get a little artsy-fartsy. Not too bad if I do say so myself!



Here she is at home giving all she had when I said "smile!" :)

Here she is signing "bear". She missed him!


Please enjoy this freakin' funny video that we shot yesterday right before they took her to the OR. They gave her Versed to calm her down and boy, let me tell you, I love me some Versed! She has VERY high anxiety connected to anything doctor, nurse, clinic, or hospital. So as soon as we got into the room to wait, she started bawling like there was no tomorrow. As soon as she got Versed on board, we could see her calming down and she was even acting like she was drunk!
Enjoy:
video
You'll have to watch it one more time and, this time, concentrate on my two favorite parts. First, the part after she is done bouncing up and down, she looks like she is seeing a parade of pink and purple polka dotted elephants. Trippin'!! Too funny! Second, the part right at the end; it looks like she is saying "talk to the bear", like "talk to the hand". :)
Thank you all so so so so much for keeping our little monkey lifted up in prayer these last two days. I asked you all for prayers and you didn't let me down. Keep the prayers comin'.
I love you all!!

Thursday, January 22, 2009

Update On Marissa's Surgery:

First of all, I want to thank all of you for checking in today and also for your thoughts and prayers. We felt every one.


Marissa is doing well. She dealt really well with the anesthesia. We got into a PICU room about 2 hours after she came out of surgery. She is resting comfortably as long as people don't mess with her. We are able to give her pain meds when we feel she needs them, so that is a blessing. The doctor feels that, barring any complications, she should only be here 2 to 3 days. Another blessing!

Until Marissa is discharged, I only plan on updating the blog if something changes drastically. So, hopefully the next time you'll hear from me, we'll be home. :)

Thanks for the continued prayers.

P.S. Keep checking in on Emerson by clicking this link: http://cotaforemersonw.com/node/35
Check back often as I believe there is some good news that her mom, Erika, is going to share!

Wednesday, January 21, 2009

24 Hours From Now...

It's almost surgery time. Ugh. So not looking forward to this. But, who would?

If you want a refresher on why Marissa is having surgery, read this post.

We have to be at the hospital at 8:15 tomorrow morning and then surgery is at 10:15 (MST). It is a standard in-patient surgery with the standard 3-5 day hospital stay and 6-8 week recovery.
In addition to the general prayer of her being alright through the whole ordeal, I have a few specific prayer requests:

Anesthesia:
She has gone under general anesthesia several times with a problem only one time. She spiked a fever, flushed bright red all over her body and started breathing really hard and fast. This came on all of a sudden and was very scary. It turns out she had a histamine reaction to the anesthesia and we got it under control pretty quickly. Please pray that she has no adverse affects from the anesthesia.

PICU vs Peds Floor:
We are not sure where she is going to be admitted after surgery. Most trach kids go to the PICU after surgery, but we just don't know. Please pray that she will go to PICU as we feel it is best suited to her needs.

Manageable pain:
Marissa is one tough cookie, but she has not had surgery since her trach and g-tube were placed. She was only two months old at that time and they kept her paralyzed and very sedated for a long time afterward. We don't know how she will react to surgery pain this time. Please pray that it never gets out of control for her. I don't want my baby in pain. :(

Discharge:
Marissa is also a mover and a shaker. She does not like to sit still for long at all. When she was in the hospital for pneumonia last May, the third through the fifth day were hell because she was feeling better and navigating her way around the crib a lot. She was constantly getting tangled in her millions of tubes and wires and I literally only sat down when she slept. And she was only 14 months old at that point! Please pray that discharge comes quickly after she is feeling well enough to move around a lot.

Recovery:
Marissa tends to regress a little in her development and therapies after she is sick. Please pray that she will recover quickly and get back to her normal spunky self soon.

I was talking with my sister Michelle on the phone this morning and Marissa was getting into everything she is not supposed to, like usual. I could not finish a sentence without having to interrupt myself and discipline her. I told my sister "please remind me that I am going to miss this!" :)

I will try to update the blog as often as I can tomorrow and the days following. The hospital has internet access and I have been able to access blogs in the past, in a certain part of the hospital. Other times, I have had trouble accessing blogs and sites like Facebook. So if you don't hear from me, don't assume the worst. At the very least, I will have Michelle update the blog when she gets off work. For those of you who have my phone number, feel free to call and leave a message if I don't answer. I will try to return your call as soon as I can.

We are so blessed to have found such a supportive network of friends in addition to our long-time IRL friends and family. You all have always come through for us when we needed you and it gives me great comfort to know that we have so many angels surrounding us.

Thank you.


Monday, January 19, 2009

The White Family Warriors

This is what the people who follow Emerson's daily struggle for life have been able to accomplish.  It is truly amazing.  

Follow the link below and then click on the featured video button on the top left of the news story to see the video.
http://www.kmtv.com/Global/story.asp?S=9699415

The family is still in the thick of the battle.  Nothing has been solved as of yet, but with all the media coverage, there is no way that the authorities will be able to deny this little girl funding for the life saving transplant she needs.  Emerson's mom Erika said:
"A different station aired a phone interview with a Deputy Director at Colorado Medicaid who said they’ve been working through the holiday weekend to bring resolution to this case.  She said they hope to have “options” to present to us as early as tomorrow afternoon."

Thank you to all of you who made phone calls or sent letters and e-mails on Eme's behalf.  There is power in numbers.

Praise God!!

Sunday, January 18, 2009

Mile High Trach Moms

Last night I had the pleasure of meeting up with a group of wonderful women who I have found a kinship with. We call ourselves the "Mile High Trach Moms" and we try to get together once a month. During "respiratory season" (Oct-Apr) only the parents get together and then we get the kids together May through Sept. I posted here and here last summer about the kids getting together.

We were missing one of our very important members who was recently able to take her daughter home to Grand Junction.  (We miss you Tina and Noel!)  But we added a new member, Kacie who is from Pueblo.  Her son Kevin was in the NICU here in the Springs for a long time before Marissa was born.  Marissa and Kevin were next door neighbors for a short time before Marissa was taken to Denver for heart surgery.  When we got back we learned that Kevin was able to go home.  Yay!  Kacie and I never met in the short time that our kids lived across the hall from each other so it was nice to finally have the chance to do so. 

We had a blast.  We had a paint your own pottery session and then had dinner at Pasquini's, a great little Italian place with delicious pizza.  We laughed hysterically about everything and anything.  We swapped stories of our kids and husbands, nurses, hospitals, and insurance woes. 

It is so great to be able to meet with these moms who I have so much in common with.  We never have to explain to each other what we are going through.  We just know.  I am so lucky to be able to call these women my sisters.

(L to R Back Row) Kacie, me, Janay
(L to R Front Row) Shandy(the comic of the group ;), Jen, Dawn

Thursday, January 15, 2009

Awesome Hair Part IV... Plus Some










video
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Well, it turns out that Marissa is going to need a T & A before she can be decannulated.

OK people, get your minds out of the gutter!!  ;0

Just kidding, I'm sure you all know that a T & A is a Tonsillectomy and Adenoidectomy.  We have noticed her tonsils are really swollen and she also has a squeak or stridor when she is really agitated or when her trach is capped.  In fact, in the video above, she has her trach capped.  When she picks up her baby off the floor, you can hear a squeak.  

We went to the ENT the other day and, sure enough, the doctor said she did not feel Marissa would successfully decannulate without the T & A.  Her tonsils are just too big and are occluding her airway.  So, another surgery in the works!  As soon as she has recovered from her kidney surgery, she will have to go back under the knife.  :(

At least this surgery is a little more common and routine.  We of course want to give her the best possible chance at getting the trach out.  And truthfully, I am relieved that her tonsils and adenoids are the reason for the squeaking and not something more serious.

So, there you have it!  :)
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On a side note, please pray for Emerson White and her family.  They are going through unimaginable hardships right now.  As if fighting for their daughter's life is not enough, now Medicaid is closing her case.  Please follow the link and read about Emerson.  Leave a note of support and encouragement in the guestbook.  Pray with all your might that God will hear our prayers and this family will get the help they so greatly deserve.  

UPDATE:

Please join in the campaign to bombard our government official's offices with letters showing why an exception to the Colorado Medicaid law should be made in Emerson White's case.  Our efforts can save Eme's life.  Please go to the above website to find out how you can help.

Thank you.

Monday, January 12, 2009

Victory Dances

I know it is not polite to brag.  However, when you have a special needs child, bragging tends to come with the territory.  Especially when your child's prognosis for neurological status and mental capacity are unknown.  Marissa has Agenisis of the Corpus Callosum.  This means that the piece of her brain that connects the left and right hemispheres and allows them to communicate is missing some parts.  At this time in her life, no one can tell us what, if any, effect this diagnosis will have on her future and her ability to learn.  It is a wait and see kind of game.  

It is cause for celebration your special needs child reaches a milestone or accomplishes something you as a parent were not sure they would.  

Therefore, I choose not to call it bragging. I call it a victory dance. So join me in a little victory dance for Marissa, won't you?

video


She knows 38 signs now, and even though she might not verbalize correctly, she usually attempts to say the word as she is signing it (when the camera is not on her!)  She can say five words clearly.


video
Victory dances all around for the Dancing Queen herself!!

Thursday, January 8, 2009

Demolition Time... Maybe???

I finally got my videos to upload, but before you start reading this new post, please refer to the post just before this one.  My friends Hope and Ava need your prayers.
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The mission was simple... or so I thought.  Marissa and Daddy were having a blast building towers out of blocks and then Marissa would knock them down.  Pretty typical,  but Marissa was extra cute, in my opinion (biased, I know).  The way Jeremy showed the tower to her beforehand, how she reacted after he released her and how she acted after she knocked it down - priceless.  




So, I ran to grab my camera for the next round.  It used to be that Marissa would just clam up when the camera came out.  Now it is the exact opposite.  She now pulls out every weapon in her "cute arsenal", signing every sign she knows, saying every word she can say, dancing, and general hamming it up for the camera. So much that she distracts herself from the mission at hand.  






Thus, you get the next three videos:




video




Let me explain ahead of time the reason I sound insane when I am cackling at the end of this next video.  If any of you are familiar with the Veggie Tales, Larry the Cucumber sings a hilarious song called "I Love My Lips".  I put this song on thinking that it would distract Marissa from the camera and she would get the job done.  Toward the middle of the song, Larry starts singing gibberish.  During this part in the past, I would always sing along with the song and shake my head around in an exaggerated manner.  Marissa never attempted to imitate me until now.  I think she does a great job, especially cute when she wiggles her tongue.




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She did it!  Yay!!

Prayer Request

I have a new post in the works and I will post it as soon as my internet connection allows me to load the videos I want.


In the meantime, I have a prayer request for my sweet friend Hope and her 9 month old daughter, Ava.  They are struggling right now with Ava's health issues.  Please go visit her blog.  Also, click on the teddy bear button at the top right-hand side of my blog to visit her on Prayers for Little Angels too.   She is the third child down on that page.  Please leave her comments of support in this difficult time.

Thank you.

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!!









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

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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.