"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

Tuesday, September 30, 2008

Kidney Day

Warning: This post contains some mild potty talk. ;)

Today we ran some tests to see how Marissa's kidneys are functioning. Not all of you may know that Marissa has some kidney issues. Her left kidney is low (nearly lying on the pelvic floor) and underdeveloped and her right kidney has reflux.

She had a kidney ultrasound which is not invasive but, of course, sends Marissa over the edge. We did have a little help calming her down in the form of her I-Pod pillow. A couple of weeks ago Auntie Chelle gave her a little blue pillow with a speaker in it and a connection for our I-Pod so she can hear her songs. We now bring it to most of her appointments and it seems to help calm her. She also had a VCUG today. In this test a catheter is placed into her that goes into her bladder (OUCH!) and some dye is squirted in. The dye is then followed to see the path her urine takes.

Back in March we ran these same tests and it was determined that Marissa has reflux in her right kidney. Once her urine makes it to her bladder, some of it travels back to her kidney. This obviously can cause serious health problems such as kidney infection, scarring and possible long term damage. She has been on a low-dose antibiotic since the diagnosis to prevent infection. Sometimes this condition can resolve itself and sometimes it requires surgery.

Today's test showed no improvement of the reflux. We have an appointment with her urologist on Thursday to go over the results and discuss our course of action. Of course we will do what it takes to make our daughter as healthy as possible but we are dreading the looming possibility of another surgery. Please pray with us that she won't require surgery. I will let you all know how our appointment on Thursday goes.

On a lighter note, I thought I would finish this post with a few recent pictures. Enjoy!

Thanks for checking in. :)

Marissa and her friend Faith

"Yeah, I'm having a bad hair day. Who cares?!?!"

Playing in the grass with Ms. Adrienne

Saturday, September 27, 2008

Another Day for the Trachies!

We had another great time getting together with our trach buddies today. We wanted to get the kids together one more time before respiratory illness season sets in, which is October through April. Unfortunately we were missing one very important Trachie, our friend Faith. Sad to say that she already has a respiratory illness she is trying to get over so she couldn't make it. But her sweet mommy, Jen, came to our picnic, which was awesome. After lunch it was time to head into the Children's Museum where the kiddos had fun coloring and painting, sitting in boats, climbing trees, and climbing on tables! Here are a few pics from our fun day:
(make sure to click on the pics to make them clear and bigger.)

Marissa and Milo playing with Noel's shoe

Don't rock the boat!

Who Dat?!?!

On a different note, Marissa had a major breakthrough in Occupational Therapy last week. See for yourselves:

She can play in the grass now!! And no, I did not lock us out of the house... lesson learned!!

Oh, by the way...

She can stand much longer than this, she just decides she doesn't want to. Toddler attitude!! The big point of this video is the "Dada". Ain't it sweet?

Tuesday, September 23, 2008

A Blast From the Past

I have quite a few videos that we shot over the last year with our digital camera that I would love to share with you all. But that would mean that I would post no fewer than 50 individual videos for you all to watch and I think that would drive most of you away!! So, for your sake, and for the sake of time, I will only post a few of the absolute cutest videos.

The first installment of videos I will share with you are from several months ago and are ones that I e-mailed to my family before I set up the blog.

Family Favorites:

This one was shot Dec. '07. She had been able to tolerate her PMV for only about a week at this point. It is so funny because if you look closely at her face, you can see what is coming for a few seconds before it hits. I, however, was oblivious...

This one was shot around the middle of January. She was only 10 months old and had such rhythm! Look for her reaction at the tempo change... Priceless!

The date on this one is obviously Feb. 14. Too cute for words!! Listen closely for the big "Pink Puppy Smacker".

This one was shot around the end of February. Daddy was playing a fun little game with Marissa, but the best part of it all is her voice. This was the first time we were able to actually hear her laugh.

This one was shot around the end of March and is a two part story. Daddy had accidentally hurt her with the hemostats during her cares and here she is telling me all about it, all the while oblivious to the camera...

She and I were having an intimate moment, sharing our feelings about the whole Daddy ordeal, when she hears Daddy turn the camera on. Needless to say, she was not happy about being filmed, especially by Daddy! Take special note of the dirty look she shoots Jeremy. Hilarious!

So there you have it. I will post more recent videos soon.

Thanks for watching!

Wednesday, September 17, 2008

O.K. So My Mind Was On Other Things

Today I am studying a particularly important lesson. More on that later.

I did a completely boneheaded thing today. I know, I know. Those of you who know me best are thinking, "Yeah... so... what's different?" Just hear me out.

So the last two days have brought two extremely good pieces of news. More on that later. Confused and annoyed yet? Good! Patience, my friends!

At 12:55 today I received an e-mail with one of the aforementioned pieces of good news. At 1:00 Marissa's Occupational Therapist came over. After a few minutes of chatting and letting her know of our good fortune (o.k. don't be jealous, she got to find out before all of you, calm down!) she asked me if we could go outside for a little bit of Marissa's therapy session. You see, Marissa has sensory issues that we are trying to work on. She has a hard time feeling certain textures such as playdough and grass. They just don't feel good to her. But if we continue to work with her and those textures, she eventually gets used to them. She can play with playdough now! Thus, the reason for going outside to play in the grass. I said "no problem" and we picked up Marissa and our toys and headed out the door. As soon as I shut the door I realized what I had done... I had locked us out of the house!! I had left Marissa's suction machine inside and the therapists car keys were inside as well. Neither the therapist or I had our shoes on either! My mind was clearly not where it should be!!

I quickly called Jeremy and had him leave work to come let us in. You can imagine how embarrassed I was, as well as feeling bad for making Jeremy leave his busy job to come rescue us! It turned out to be a very good O.T. session and Jeremy saved us in 1/2 hour flat. My Prince came riding up on his white stallion (or green Jeep as it were). As the therapist was leaving, I apologized and thanked her profusely and she said "Don't worry about it. It's a good thing we like each other, huh?" :) So there's my bonehead move for the day!

Oh yeah... our good news... I almost forgot! ;)

1. We finally made it to the end of the Medicaid Waiver wait list! We have been waiting for Medicaid to cover our out-of-pocket medical expenses for Marissa since June 2007. We don't qualify for Medicaid because we make too much money (really??) but the waiver program only looks at Marissa's income, which is zero. The problem is there is a long wait list to get into this program. We finally made it onto the program yesterday, so now we don't have to stress so much over the high cost of Marissa's medical care, therapies, equipment, and supplies. YAY!!

2. Jeremy's contract renegotiated with a brand new company who pays a lot more than the current contract for the same positions. Starting Sept. 30, Jeremy will be employed under the new contract, in the same position he is in now, for A LOT more money!!! He got a very substantial raise!! That is the news I received before Marissa's therapy session today. So you can imagine where my mind was and why I might have been a little preoccupied!

Which leads me to the lesson I am studying today...



Before I end this post, I would like to call your attention to a very important amendment that is going to be on November's ballot. It is Amendment 51 and it calls for an end to the wait list I was talking about earlier. We are blessed in that we got to bring Marissa home after only 2 1/2 months and that we had a sturdy savings account and help from family to help cover the medical costs. I know of families whose babies have lived in the hospital for a long time, sometimes over a year, for no other reason than they needed nursing care at home and could not afford it, nor did they qualify financially for Medicaid. We can do away with the wait list if we vote yes on Amendment 51. My good friend Jen put it this way...

"Like most government programs this bill does come with a cost. In order to fund these services a 2 cent sales tax would be added to every $10. In my mind it's like spending $100 at the grocery store and dropping 20 cents in the can on the counter for a local charity. In my mind, this program is
worth the cost. "
Please go to endcoloradowaitlist.org to find out more about this very important amendment and pass the web site on to your friends.
Thank you

Saturday, September 13, 2008

More Marissa Sized People!!

Today we went to the birthday party of a good friend of mine and there just happened to be four other kiddos there for Marissa to play with. There was a lot of activity and people so Marissa was pretty overstimulated at times but overall she did very well. At this point in the year we are squeezing out every opportunity to have Marissa play with other little guys her size. She is always leery of adults (because she thinks they are going to poke her with a needle or hurt her in some other way) but she always interacts well with other kids. Here are a few pictures from the day...

Happy Birthday Shannon!!

Oh, and by the way...

This is the first time she has actually said "mama" since the beginning of the summer because of her recurring ear infections. YAY!!!

Tuesday, September 9, 2008

We Made It!!!

We made it to and from Grand Junction and we all survived! It turns out Marissa is a pretty good traveler. We only stopped about three times each way and she never really got grumpy. We had a blast visiting family. We had not all been together like that since before I was pregnant! (Of course not ALL of us were there though.) Mom and Larry live in a beautiful subdivision called Glade Park. It is actually above Colorado National Monument. As we were driving up to their house Friday evening I kept thinking to myself, "they live here ?!? Wow!" We had two fun-filled days and it was a great experience for Marissa.

PaPa letting Marissa meet Pearl the Puppy

The set up in our room worked out quite nicely

Marissa meeting a new friend, Garrett. He and his parents are my parent's neighbors.

They had a really fun time playing together. Two blonde peas in a pod!

Unfortunately for my brother Brian, she did NOT like his blonde wig!

Trying to win the affections of a little girl is exhausting!

Bald Uncle Brian is much better!!

Marissa being one of the gang playing Catch Phrase

Thursday, September 4, 2008

Westward We Go

Well, time for another first. We are going on our first overnight trip as a family. My mom and step-dad have been wanting us to come out to Grand Junction, where they now live, for a long time. We have been thinking about it for the whole summer and after many back and forths we have decided to brave it. We have spent the whole day packing up about 3/4 of our house. (Only a tiny exaggeration!) We of course have to make sure we have EVERYTHING Marissa needs plus backups, plus backups for those backups. We are pretty nervous about the whole thing but we felt it would be a great experience for Marissa to find out her world extends beyond Colorado Springs and Denver! Wish us luck and we'll see you on the other side!!