"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

Thursday, February 26, 2009

Mahna Mahna

First of all, let me just thank all of you who left me messages of encouragement and support. As my friend Shannon said...

"Do you mean to tell me...wait, I can hardly say it....(pause for me clearing my throat and tearing up)...you mean to say that you're...oh my here it comes....OMgsh.....HUMAN?!>#$ And I had such high hopes for you! Man what am I to do now?"

I do understand I am only human and we all go through those really bad mommy moments. Thank you all for reminding me of that. :)

And yes, we did have a better day. We apologized to each other and then had an unspoken truce for the rest of the day. Then yesterday, she was up to most of her old antics, but I kept my cool. (for the most part ;)

Now on to the title of the post... enjoy!!

Tuesday, February 24, 2009

Today is Going To Be a Better Day

Marissa and I had a really rough day yesterday. Not because we were sick, but because she was in full-blown-toddler-temper-tantrum-terrible-twos mode. And apparently, so was I. I won't be preparing my Mother of the Year Award acceptance speech any time soon.

I am not proud of how I acted yesterday. I lost my temper with Marissa, too many times. I sulked and pouted about it all when Jeremy got home. I was not being a good wife or mother. I am not sure why I acted that way, but I know that I don't want to go there again. Unfortunately, I have to admit it wasn't the first time, and I'm sure it won't be the last.

But today, I can try to do better.

Today, I am making a promise to myself to be a better wife and mother.  Today.  This whole mommy thing is a learning process for me. Sometimes, I feel I end up failing more than I succeed. But I am trying. And I have to learn to take one day at a time.

It is coming up on two years ago that we thought Marissa might not survive. One year ago, we weren't sure how "on track" her development was or would be in the future. Today, I need to take a step back and realize that while her attitude and behavior really piss me off at times, we are lucky she is here and developing as well as she is. I should rejoice in the fact that she is developing well enough to be able to piss me off, if that makes sense.

Today I am going to do better. This little girl is too precious to not do my best. ***************************************************************
As far as health, Marissa and I are doing a whole lot better. Her secretions are clear, she does not have a wheeze anymore and she did really well without any supplemental oxygen last night. She is even able to wear her PMV (speaking valve) again. I just have a bit of a stuffy nose, but I am pretty much over this thing. Thank you for all your prayers and well wishes.

Now, on to many pics and vids. It makes for a really long post, but I just couldn't resist.

Gettin' fed and nebbed and lovin' it!

Lovin' Auntie Chelle


Notice the creepy tentacle ball from this post? She now enjoys playing with it!

Practicing for next year's Christmas pageant

Pants wearing too thin or really bright flash? I think a little of both!

One of my favorite things (and the only thing that picked my spirits up yesterday) is to watch Jeremy and Marissa play together. It brings a smile to my face every time.

By the way, she does speak a lot more than what you see on the videos, as well as general jibber-jabber.  She just won't do it when she sees me pull the camera out.  

Thursday, February 19, 2009

Kidney Update Plus Some

I had to post this picture because I just L-O-V-E the way her little legs look in jeans. Just so short and stubby! Couldn't ya just eat 'em up??

OK, please don't. That would hurt my baby girl!! Ha Ha!

OK, I obviously am in a very weird mood. Excuse me for a moment.


OK, I'm composed now. Thanks.

We went to her kidney surgery follow-up today. Not much to report. The doc said her incision looks really good.  The right kidney also looks really good. The left kidney (the one that has always been the "problem kidney") is pretty swollen. The doc said this is not uncommon but she will have to stay on the prophylactic antibiotics for now. That stinks. She'll have another ultrasound in three months to see if the swelling has gone down. Not sure what we'll do at that point if the swelling is still there, but that's another subject for another time.

As for her pneumonia, she is getting better. Slowly. So slowly, in fact, that we (me and the doc) are pretty sure it is viral and not bacterial. If it were bacterial, she would be showing significant improvement after being on antibiotics for 6 days. He energy level is back to normal though. Good for her, not so much for her sniffling, sneezing, aching, runny/stuffy nose, fever, chills havin' mama!! So while there is nothing that we can do to make her better faster, we are doing what we can to control her symptoms and it seems to be working. She is sleeping pretty well at night (everyone knock on wood please!!), so we will let her sleep in our bed tonight and then try to move her back to her room tomorrow night.

I am finally feeling better today after a horrific day yesterday. I have more energy, though it is not back to normal. This cold has knocked me completely on my butt!! Jeremy only had a stuffy nose for a week. Jerk!!  ;0  Marissa is on the other end of the spectrum with pneumonia. Poor girl.  I guess there has to be a middle, right? Being in the middle sucks!

My house is a complete wreck, and I'm not just saying that! Everything is everywhere!!! Clutter clutter clutter!! Needless to say we will be cleaning and straightening the house this weekend. I can't take much more of this!!  

I think we have a star in the making, a major performer on our hands. Take a look at this video. Be sure to pay close attention at the end. This is where she does her best work! :)

I just love the song she is dancing and lip syncing to. It is called "Only the World" by Mandisa. I had the privilege of seeing Mandisa perform at the Women Of Faith Conference last year and I fell in love. This song in particular is a really good lesson to me when I feel overwhelmed by this life and all the things that go wrong. I want to share the lyrics with you and I hope that it blesses you as much as it has blessed me:

Been a hard one
Been a bad one
Been a tough one
Been a sad one
It's been one of those days that keeps chipping away at my heart
Nothin' new here
It's what I do here
It's a stereotypical day in the life
I'm surrounded by all of the pain and the strife
But I know it's alright


'Cause it's only the world I'm living in
It's only the day I've been given
There ain't no way I'm giving in 'Cause it's only the world
I know the best is still yet to come
'Cause even when my days in the world are done
There's gonna be so much more than only the world for me

Anybody, can you hear me?
Do you feel me?
I mean do you feel me?
I know I'm not the only one wearing the weight of this world
We got problems, said it's alright
Just remember, yeah it's alright
Take a good look around
We're just stuck on the ground for a little while
Don't it make you smile


Heaven is a place
Where the tears on every face will be wiped away
Oh and I can't wait to go
But for now, it's enough to know
This is only temporary


Tuesday, February 17, 2009

Eggscude Be, I Hab Do Bdow By Doze

AAAACHOOOO!  Pardon me.

Yup folks, I caught the dreaded junk.  Knee deep in snot.  Not sleeping.  Yuck.  Thanks to my husband.  And my kid.  I love them so much!   ;)

I haven't been sick since I started trying to get pregnant back in Sept. of '05.  Not even a sniffle. Prenatal vitamins are awesome!  I thought for sure I was going to get sick after I stopped taking them but then I started taking mega doses of vitamin C.  Vitamin C is awesome!  I guess this junk was just a bit awesomer.

So far it is staying all in my head.  That's where it was for Jeremy and let's all hope and pray it stays there for me.  I could not deal with a kid recovering from pneumonia while I am trying to recover from pneumonia.  No way.

By the way, I will not be giving an interpretation of the title of this post.  I guess I am feeling a little ornery. If anyone has trouble figuring it out, please leave a comment saying so.  Then, any other readers who know what it means can leave a comment interpreting it for that person.  C'mon people, its pretty easy!

I guess I should go back to bed now and try to get some sleep before Miss Riss wakes up and tells me its time to start the day.

Monday, February 16, 2009

Pneumonia Update

Does this look like the face of a girl who is struck down with pneumonia??

In true Rissa Roo fashion, she is actually feeling pretty OK, despite being really sick.  She has her moments where she is just feeling downright junky but, for the most part, she is acting like her normal self.  We think she pulled muscle in the back of her right thigh from coughing so hard. Every now and then, after a hard cough, she'll grab her right thigh and wince in pain and cry. Poor girl.  

We have changed our sleeping arrangements temporarily due to her being sick.  She needs suctioning quite often and she also wakes up coughing a lot.  It did not make sense to run across the hall every time she needed something, so we moved her to our bed.  One of us sleeps beside her for the first half of the night while the other sleeps in the guest room.  That way Jeremy and I each get at least 4-5 hours of good uninterrupted sleep each night.  It actually works really well.

We are taking Marissa for a kidney ultrasound today to see if everything is functioning properly.  We won't know the results until we consult with her urologist on Thursday.  I will let you all know the results as soon as I get them, but please start praying now that the surgery did its job and "all things kidney" are up and running.  Thanks!

Oh, and I was able to get together with my trach mom friends yesterday.  We had a blast eating and talking at Fatburger and then, after trying to hunt down a dollar showing of Twilight with no success, we settled on scrapbooking, which was our original plan anyway.  I didn't do much scrapbooking.  Actually I didn't do any at all.  I am a  newbie and sitting down with all the pictures, stickers, pages, background pages and so on, made me feel pretty overwhelmed.  Knowing we didn't have a ton  of time to do this, I opted to sit and watch my friends work their scrapbooking magic and we chatted and had a ball.  Thank God for great friends!!

Thanks for all your prayers and well wishes.  Keep 'em coming!

Happy Valentine's Day!!

I love you Daddy!!

Soul Sista!  Only Marissa could jam like this!

Friday, February 13, 2009

Drum Roll Please....

Marissa has the best timing EVER!!  NOT!!!!!

Her pediatrician is on vacation (very well-deserved, that man works way too hard!).  I called this morning to see if I could get a script for a breathing treatment.  The nurse said since the doc was not in, there was no one to write a script.  Besides, with Marissa's history and her trach, the doc would most likely want her to be seen anyway.  So off to Urgent Care we went.

Marissa is negative for... RSV and Strep.  Good news!!

However, Marissa is positive for ................. ready for it? ..................

......Pneumonia!!!   AAGGHHH!!

The good news is that we caught it in the very early stage.  Good thing we went to Urgent Care, huh?  Also, the doc says it is in her right lung, which means that it was not caused by aspiration.  She also thinks it is bacterial and should respond well to antibiotics.  If it is viral, it will just have to run its course, but Marissa will be on antibiotics anyway.

We had to put her on a little bit of oxygen while she was sleeping last night to keep her O2 sats up.  As long as she doesn't get any worse, which she shouldn't because of the antibiotics (unless it is viral, of course!), we won't have to go to the hospital.

All this as Jeremy is getting over what he had!  Aside from some severe sleep deprivation, I am still feeling fit as a fiddle.  Whew!!

Please pray that she starts to get better quickly and we don't have to go to the hospital.


P.S.  19 years ago today, the sweet, gentle, goofy, heavy metal t-shirt and ripped jeans wearing kid who would later become my husband, asked me to be his girlfriend.  Wow, time flies!

Thursday, February 12, 2009

Catching a Cold, Excess Snot and Puke Hair... Again

Well, I'm afraid Marissa caught her daddy's cold. She started having excess secretions yesterday and she is having an extra hard time sleeping. All the excess snot is causing her to cough more, gag on the snot and then she throws up. She is very crabby and very clingy this morning.

I remind you all of this post in which I talk about her puking in her hair and me having to clean it up by myself. Well, this morning, the same thing happened again. Almost exactly the same way. Ugh! This along with very little sleep in the last few nights and a malfunctioning feeding pump, I had a meltdown. I called Jeremy and he patiently listened to my hysterics, whining and complaining. We hung up, I put my big girl panties on ( I just LOVE that expression!! ;) and got down to the business of cleaning her up.

The world did not fall off its axis. The sun did not stop shining. Marissa's head did not spin around. My house did not implode. I did not die. I guess I need to wear my big girl panties more often.

Please pray that her secretions stay thin and clear and this illness does not go to her lungs. Also pray that I am able to avoid the sickies as well. I have a trach moms get together on Sunday that I desperately want to go to. I love these ladies and our long lost trach mommy, Tina, will be in town for a rare visit. I really need to go see these girls. They help me stay sane. That, and my big girl panties. :)

Enjoy a few pictures from this morning, after I cleaned Marissa's puke hair. By the way, we are having a full-blown "stay in your jammies" day. I think we deserve it!

These are the faces I get now when I tell her to "smile!" She is so funny!!

Knocked out after her morning feeding.  Poor baby.  :(

Monday, February 9, 2009

Please Pray

I have a "blog buddy" that I "met" a couple of months ago.  Her name is Hope and she has a couple of great kids, one being her beautiful daughter named Ava.  Ava was born with some severe breathing issues along with other issues as well.  I have asked for prayers for Hope and Ava before.  Ava still needs your prayers but this time I am asking for prayers for her sweet mama, Hope.

Hope is a survivor of stage IV neuroblastoma that she had as a child.  She has been in remission thus far and hopefully she still is.  She recently found two masses on her head that she is having tested.  One of her concerns is the extreme amount of radiation she received to kill the cancer.  She has been told that secondary tumors are a huge threat.  It will be a while before she finds out anything regarding these masses. 

Please visit her blog and leave her a message of prayer, love and support.

Thank you.

Friday, February 6, 2009

The Fighter

Now I ask you, is this the face of an innocent girl?

Even before Marissa was born she was called "Fighter". I have found this is not unique in the special needs world. All of our kiddos who were born struggling to live survived, in part, because of their fighting spirit. They continue to live through many trials and tribulations because of that same fighting spirit.  Every day I thank God for her fighter's spirit.  It is what has helped keep her here with us.  

But, some days, I just wish she would not fight so hard.  Fight me.  Really hard.  All the time.  On everything.

Marissa is a very strong willed person (I have no idea where she gets that trait from!!  ;)  It seems that every time I have to do something to her or for her, she fights me.  Every time.  Well, at least 98% of the time.  O.K., maybe 95%.

I am so tired of having to fight with her to accomplish EVERYTHING.  Diaper changes.  Getting dressed.  Giving her medicine.  Hooking her up to or unhooking her from her machines at night and nap time.  Suctioning her.  Giving her a bath.  Changing her trach ties.  Doing her trach and g-tube cares.  Putting lotion on.  Getting her in her chair for a feeding.  And on and on and on.

I do try to let her know ahead of time what I am about to do so as to not make her feel like she is ambushed and forced to do something she does not want to do.  I involve her.  I ask her to help me get her diaper and her clothes.  I understand that she is her own person with her own free will.  But I still have to do these things and she ultimately does not have a choice.

I also try to put myself in her shoes.  I understand that suctioning, changing ties and doing cares are not pleasant for her, and are sometimes even uncomfortable for her.  I even considered that putting lotion on might trigger her sensory issues, however she does like to put it on if she can do it herself and get really messy.  But the mundane normal stuff?  Diaper changes (when no rash is involved), getting dressed, medicine that she does not even have to taste or swallow (goes directly in her g-tube), bath time?  I just wonder why she feels the need to fight me on EVERYTHING ALL THE TIME!  I am exhausted everyday before I can even get in the shower because she and I have had at least four battles already.

I know that I can probably chalk most of this behavior up to the "normal" toddler, terrible two having, independence asserting nature of kids her age.  I am just weary.  I am tired of fighting.  And I'm hormonal.  Please excuse me for a moment while I go make myself some life affirming, energy giving coffee.

...Ahhh, that's better.  Now I have more energy.  Time to change Marissa's diaper.  Time to fight again.  Pray for us.

My little fighter girl and her "game face"

Wednesday, February 4, 2009

Happy Birthday Little Butterfly!!

First, I wanted to let everyone know that, aside from some very annoying random bad sleep habits ( waking up at 2:30 a.m. and not going back to sleep until 5:00 a.m. or just waking up at 4:00 a.m. for the day) Marissa is doing well. She developed a bad diaper rash and diarrhea about a week ago and we also thought she had a UTI. Turns out she was just having bladder spasms due to the surgery. And our theory on the diarreah and rash was that she was having a reaction to being on Tylenol constantly. So, we started weening her off the Tylenol last weekend and she was completely off by Sunday. Her diaper rash is improving and no more diarreah. Yay!! Also, her incision looks awesome!! That doc sure knows his stuff!!

Thank you all for your continued prayers and support.

And now, on to the title of my post. Last June I had the privilege of getting in contact with a family who would change my life. I had been in a very dark place for a while and Marissa's pneumonia last May had me on the edge. I was wallowing in self pity and pity for Marissa. It was not good. I was in the hospital surfing the internet and came across the blog of a family who just happened to live here in Colorado. I was interested immediately because their little girl Faith had a trach and a vent and had just come home from the hospital for good in April, when she was 14 months old. I felt I just had to contact this mom and I am sure glad I did. We started e-mailing back and forth and we eventually met up with this family and several other trach families they knew from their time in the hospital. Their friendship and kinship has picked me up off the bottom too many times to count. My family and I are so blessed to have these wonderful people in our lives.

Today is Faith's second birthday. I wanted to give you all the link to Jen's blog and ask you to go and leave a happy birthday message for this wonderful little girl. Be sure to pay attention to the pictures.  In one pic you can see Faith shortly after she was born, with a little stuffed dog beside her.  The next pic, the one of her with her crazy cool hair, she is holding the same little dog.  Wow, how far she has come!  

And, if you have a few extra minutes, check out the "my story" button on the top left of the blog. If you all think my pregnancy story and the story of Marissa's birth are awesome, Jen's, Brian's and Faith's story will knock your socks off. It will literally blow you away!

Please take the time to wish Faith a very happy birthday.