Respite Care Rocks!

Taylor last summer.  A time out chair big enough for her *laughs*

Since Taylor’s sister got married and had to move, we’ve been without respite care.  It’s hard to find someone you trust completely to keep your child overnight.

Luckily, we were able to find those people.  One of the nurses at the infusion center Taylor has been going to since 2007 offered to do it.  She loves Taylor & Taylor loves her.  She thought it would be good for her kids to be exposed to someone like Taylor.

So, for the past several months, Taylor has been stuck at home day in and day out.  Since we run a 9 to 5 business from our home, it’s hard for me to get out and do things with her.  So she has been bored and boy can you tell.

She would just meander through the house with her bucket of tub toys…trying to decide if she wanted to go throw them over the shower curtain and into the tub ( a favorite loud past time) or take her mp3 player out and lay on the swing.  Another loud past time if you have ever heard Taylor sing.  Think 100 cats being run over by a car simultaneously.

She would also make 500 trips to the bathroom every night to make sure nothing fun was going on in the evening without her. Anyway, last week, all the respite paperwork was done and the family came to pick Taylor up for 3days/2 nights.  I wanted to run around the house yelling “free at last, free at last, thank God Almighty, I’m free at last!!!!” (Didn’t…but wanted to.  Taylor probably would have done that if she could talk)

Apparently she had a blast.  She attached herself to their 10 year old daughter Ally, who enjoyed the attention and gave one of their dogs more love than it probably ever wanted.  She came back a whole new girl.  She walked in the door, had a snack, then took a 3 hour nap.  Got up to eat dinner and then went back to bed until 10am the next morning. 

She has been happy and good every day since then.  No getting up a thousand times a night either.  That little break from home did that child wonders.  People should never underestimate the awesomeness of respite…for both the parents & the child.

One of These Feet is Not Like the Other…

So, this is the “infamous” foot that started us down the road to diagnosing the CML.  We’ve been through 16 days of IV antibiotics, bone scans, ultrasounds, dozens of x-rays, & several different doctor specialties telling us they didn’t know what it was.

Everyone agreed that this had nothing to do with the CML.  So we were just treating her pain when she had some.  This morning, she woke up in a lot of pain.  I tried the Ibuprofen first…nothing.  I called the doctor and then gave her stronger pain meds and she became more comfortable but everyone felt she needed to be seen.

However, Taylor’s doctor isn’t in on Fridays.  Also the only appointment they had was with the NP.  Now I love this office.  All the nurses love Taylor so I know they have her best interest at heart.  The nurse on the phone said, “Dawn, I don’t want to offend you, but it really wouldn’t be fair to have the NP see Taylor because she is just too complex and she’ll scare the crap out of the NP”.

Okay, I’m so not offended by that.  I totally get it and I just had to laugh.  To me, that sentence was funny.  Of course, that could just be twisted sense of humor.

So off we go to the Urgent Care because they know Taylor just as well.  (I used to have this secret fear of being labeled a drug-seeker because we ended up in the Urgent Care so much.) The doctor actually laughed at me when I told him that. 

Anyway…I’ll stop rambling.  I’ve written all of that to just say this.  Her last x-ray in May showed no bone abnormality.  Today the doctor said that the leukemia can weaken bone so he wanted an x-ray.  Lo and behold, she has a slight hairline fracture of the ankle.

Seriously? The treatment is an ankle splint that she does not want to leave on. We don’t want to put her in a cast because then she would lose her sacred bath time.  That girl loves her baths. 

I’m not upset right now but I’m sure at some point it’s going to hit me and I’m going to be upset that she has to deal with all of this.  I will end this entry with a happy Taylor picture.

Taylor at her sister’s house (before she moved).  She  is singing this song from Barney.

Happy Birthday Sweet Girl!

Taylor is 22 years old today!  It’s hard to believe that there was a time when we were told she would never see toddlerhood let alone her twenties.  Of course, she is a 22 year old “toddler” so I guess it all evens out. *laughs*

I see each birthday now as a gift.  I feel so blessed to see her smiling face each & every morning.  Well, the mornings when she decides to stay up until 3am while making 5,000 trips to the bathroom are ones when I’d prefer to see that smile a little later than 7am.

So, what do you get a girl who has everything she wants?  You give her the things she considers to be the best stuff on the planet.

1 car magazine – $6.00

1 caffeine free diet coke – $1.69

2 packages of Gummi Worms – $3.00

3 Mylar Spongebob balloons – $10.00

1 huge grin & a drool enhanced hug & kiss =

                                             PRICELESS!!!

 

Pictures

Here are some pictures of Taylor from her sister’s wedding in May.  She had a blast.  Please excuse any pictures of me.  My face looks funny because I was constantly trying not to cry…both from happiness & sadness.

Happiness that my family was gaining an awesome son-in-law.  Sadness because I knew he was being stationed way back in Georgia, at Fort Stewart.  I miss them a great deal.  No one to call me Nana in person anymore.

Getting ready to walk down the aisle.  Taylor held her flower up to her forehead.  (I have no idea why though I wish she could have told me the reason. *laughs*)

She’s getting her “groove thang” on with her sister.

Trying to steal her sister’s new husband.  Taylor started trying to steal boyfriends the moment her sisters started dating.  She’s evil that way.

Hope you enjoyed the pictures.  There is nothing like looking at Taylor’s smile to brighten my day.  I hope she does the same for everyone else.

Long Overdue

First, I want to thank everyone for all their kind words and support.  They meant the world to me.  I don’t know why I seem so averse to updating this blog.  I need to get back to regular blogging.

Yes, things have been busy but I need to make the time…at least for my emotional health.

Taylor is doing very well.  She has some issues, but then she’s always had at least one issue all the time, so it’s nothing big.  She is still her smiley, happy self.

Since her sister got married and moved back to GA…see, it has been awhile.  I’ll have to post pictures.  Taylor & I walked her down the aisle.  She married a wonderful Army MP when he came back from Korea in May.  They had 21 days here before they had to pack up and move to Ft. Stewart, GA.  He’s scheduled to deploy to Afghanistan this coming January.

I promise I’ll go back to writing regularly.  If not, Jaime can bug me. *laughs*  I will leave you with a video of our 4th of July light show.  Yes, The Bossman loves his lights.  Wait until you see video of this coming Christmas.  Visit our Vimeo site if you want to see the rest of the songs.

Summertime Medley - 4th of July Show 2011 from Cascade Christmas Lights on Vimeo.

Courage

I’ve finally found the courage to write this entry.  I struggled with writing it because I was worried about what some might think & I finally let that go.

I’m confident in the decisions I’ve made & I can’t let what others think scare me.

Taylor was diagnosed with chronic myeloid leukemia.  While this type of cancer is more common in older adults, it can happen at any age.  The oncologist believes Taylor developed this type because it involves issues with the #9 chromosome and Taylor has Trisomy 9p.

We are not exactly sure what stage Taylor has because we are not going to do a bone marrow biopsy.  The reason for not doing one is that we are not going to seek treatment.

I’m sure there will be people shocked by that.  I follow the blogs of some DS children being treated for leukemia.  However, we don’t feel it’s in Taylor’s best interest to put her through chemotherapy.  I’ll admit to being scared when I shared that decision with the oncologist but he was surprisingly understanding & sympathetic.  He actually agreed with our decision.

Taylor has many other health problems and we’ve been told that she’s already outlived the expectations of all her doctors.  I want whatever time Taylor has left to be happy.  All her doctors believe that the side effects from the chemo outweigh the benefits of putting her through the treatments.

Believe me when I say that there was a lot of thought and research  that went into the decision that we made.  Right now, we are treating any symptoms that might make Taylor uncomfortable and her doctors are on board with that. 

I know in my heart that we’ve made the right decision and the best decision for Taylor.  Of course there is that part of me that wants to do whatever it takes to keep Taylor here with me.  But how selfish would I be to subject Taylor to being sick & unhappy just for my benefit?

I’m sure there will be people that think I’m doing the wrong thing.  I would ask those people to keep in mind that they don’t know Taylor’s medical history.  They need to understand that the decision we’ve made is made with the love we have for Taylor.  I love that girl more than I could ever put into words but I have to do what’s best for her…not what’s best for me.

Right now, we are focused on keeping Taylor happy & comfortable.  Taylor is surrounded by the people and things that make her happy & fulfilled.  She has her diet coke, car magazines, computer filled with Barney videos, grapes, & her TV .  Sounds like the perfect life to me.

Besides…Taylor is stubborn enough to outlive us all despite any diagnosis.

 

Life At This Moment

I’ve been gone for quite awhile.  Life just got busy.  Of course, then unexpected things started to happen.

As you can see from the picture, Taylor’s port is accessed.  She just spent 16 days getting daily infusions of IV antibiotics.  We just finished Sunday.  She was being treated for a staph infection of her foot/leg.

Unfortunately, while we noticed some improvement initially, her foot and leg are now right back to being big & swollen. 

Then Taylor’s blood work started coming back abnormal and the “C” word was thrown out.  That’s where we are now.  Running tests for cancer.  Tomorrow morning, we have a bone scan.

Taylor has been very lethargic and clingy lately.  She follows me around the house.  Normally, she always does her own thing, plays her own way.  Now, I have an intense shadow.  You can tell she doesn’t feel well, but it’s frustrating that she can’t tell us what exactly she is feeling.

That’s where I’m at right now.  Trying to start the thought process of whether we go with chemo/radiation option, if the tests confirm what the doctor suspects, or to not put her through those things.

I’d like to not have to think about any of that.  I’d like to be able to wait until we know for sure.  But then the doctor reminds me, depending on the results, we may not have a lot of time to make a decision, so I need to start thinking about it now.

How do you make those decisions?  Why do you have to make those decisions?  At least I can always count on this smiley face to help me make whatever decision needs to be made.

The “Bossman” told me I needed to update this blog…to get my feelings out.  As usual, he was right. It is cathartic to put things out there in writing, even if I haven’t quite dealt with all the emotions yet.

**After posting this, I happened to look at the pictures, and she definitely looks unwell.  First time I’ve noticed how pale she is right now.**