Friday, December 30, 2011

I Survived Christmas Break 2011...Almost

I can only say almost, because it's not quite over yet. Three days and counting.

Santa Claus made his rounds at our house, as well as the stomach flu. Fun times. Oh yeah.

I always feel like I am the only mom that is waiting on pin and needles for "breaks" to come to an end and to send the cherubs back to school.  Everyone else seems to enjoy the "free" time with their kids.  Me? No, I run a tight ship. A rigid schedule. I don't like to live on the edge.  I like to know that by 8:15am the kids will be safely deposited into the care of their wonderful teachers...such blessed souls.   Besides, I still have Faith, whom I have decided is part monkey, ( DEFINITELY her father's DNA) that I have to peel from the light fixture hanging over the kitchen table.  This kid IS a full time job all on her own.

She's lucky she's so cute.      See?

I have recognized though, over the last few months that I NEED a break. Regularly. From ALL of my children.  Not that I don't love them dearly, but Lord, they can drive me to the brink of insanity. No really, it's true.    Seeing as how I am now a single mom, it makes getting a break all but impossible most of the time, however grateful I am to the kids' dad for working two jobs so that I can stay home with them and not have to be a "working" single mom as well.

Respite. I found it. I am going to use it. For Faith. For the other kids when needed.  Sure, go ahead, look at me like I have two heads and wonder why in the world I would use something like that...something like respite.  Respite is defined as a temporary rest period, utilized by caregivers of the ill or disabled. Six kids. Two with ADHD. One with Tourette's. One with Down syndrome.  One typical teenager.   Judge me if you want, but to make myself a better "caregiver" to my daughter AND all of the the other children, I am choosing to do this for them and for myself.

Anyway, just putting it out heart on my sleeve. 

Tuesday, July 26, 2011

Sie Center For Down Syndrome Visit #1

The day has finally come. I've been looking forward to it for 6 weeks now.  Truth be told, anxiety has been mixed with the excitement.  I was all eyes and ears taking it all in.

My brain is on overload with the information I was given today.  That's not a wild fire you smell, it's my brain matter.  Really.

The kids outside the Children's Hospital

Getting ready to go in the center

First, Faith was weighed and measured.  She weighed in at a whopping 22lbs and just over 32".  Peanut!

Then we met with Patricia Winders.  She is the author of several books relating to Down syndrome, regarding gross and fine motor skills.  She was VERY impressed with Faith's motor skills...saying she was "ahead of the curve for a child with Ds".   I was so proud of my girl...she's a rock star.   Pat had Faith running, kicking a ball, bouncing on a trampoline, and climbing up and down toddler sized stairs.  Pat recommended that we have Faith fitted for "Sure Steps" orthotics to help strengthen her heels and provide her with more of an arch in her feet rather than walking so flat footed.   So, she was measured for the orthotics today.  They will be have adorable little bumble bees all over them with matching yellow straps.

Kicking a ball while"running" with Pat.

Showing off her stepping down skills, with a little help.

We had a little "lay over" in the waiting room waiting for the doctor.  In that 10 minutes, Faith managed to take a head dive off a chair and landed right on her mouth.  Blood everywhere.  The nurses came running.   Turns out she split open her upper lip frenulum, leaving a gaping hole above her top teeth.  Luckily, it is such a vascular area, it will heal quickly with no intervention needed.  A popsicle, a teddy bear and a cozy quilt made it all better, thankfully.

Next we met with Dr. Francis Hickey, a developmental pediatrician that specializes in kiddos with Down syndrome and their unique health issues and challenges.  He went over her medical records that were compiled for him over the last 6 weeks from all of her specialists here in the Springs.  He was very impressed with her pediatricians and their attention to detail with Faith's medical conditions. After talking to us and his own examination, it was determined that Faith needs to see an ENT as her tonsils are "huge" ( greater than a +3...+ 4 is the largest they can get).  She needs to be scoped down her throat and have a tonsil and adenoidectomy in the near future.  I was also told by the doctor that after having gone over her medical records and chest x-ray reports that she has "never had a *normal* chest x-ray".  The concern is that she has some lung disease due to micro aspirations of fluids that she drinks and also from her reflux.   Soooo, we will be seeing a Pulmonologist and a Gastroenterologist  in addition to the ENT.  She also has some cardiac concerns with having a coarctation of her aorta and aortic stenosis.  Dr. Hickey also believes that Faith may pack on a few pounds and have less feeding issues once her ginormous tonsils are removed.

We also met with a social worker to make sure things were all on track...they were.  I was so impressed with the level of care Faith received there.

Labs were drawn for celiac disease, thyroid function and blood counts. It was recommended Faith go on a mostly dairy/lactose and gluten free diet.   She will also continue to be followed by a hematologist/oncologist for her ongoing neutropenia.

It was a whirlwind of a day, but very educational and somewhat encouraging.  

More to come...

Tuesday, July 5, 2011

Happy 4th!

The Dog Days of Summer require eating a nice, cold, juicy slice of watermelon...with your shirt off, of course.

Mmmmm, mmmm good!
Want some?  I'll share!

Nah, I want it all...

Sayin' "cheeeeeeeeese!"

And dancing with daddy was the best part of my day!

Friday, July 1, 2011

A Catch Up, Of Sorts...

I'd like to say that I haven't blogged in the last 3 months because I decided to stay in California, but obviously, that isn't the case.   And, I'm pretty sure they have internet in California too.  I have no excuse for not blogging other than, well, um, oh heck...I have no excuse.

The kiddos have been out of school since May 26th and my mind has been gone since May 27th.   Maybe with enough coffee and diet Coke, I'll have the energy to blog more regularly again.  Time will tell!


      We've kept busy having play dates with friends...

       Having a birthday...

           Being Super Heros...

        Graduating from Preschool...

        Taking naps...

     Doing Yoga in the sand...

     Reading books...

     Hanging with dear friends...

     Playing silly games...

     Going bowling...

     Talking on the phone...

     Eating watermelon...

     Hangin' with Pirates...and trying to be one :)

     Having tests...

     Touching slithering snakes...

     Enjoying the sunshine...

     Being happy with the simple things...

     Riding a pony named Billy...and loving every second of it...

     Hangin' around...

     Climbing trees...

     Kicking a soccer ball...

     Hangin' poolside...

      Lovin' each other...

     Going for walks in the park...

     Becoming "famous"...

      Splish splashing around...

      Soaking up some sun...

     Sitting on Grandpa's lap...

So, there you is busy, sometimes too busy to even blog about it.  But, I'll be back again. Soon. 

Wednesday, March 16, 2011

Leaving on a Jet Plane...

Don't know if I'll be back again!

I can't wait until Friday.  That's the day Faith and I head out to California to meet up with some pretty special people.  I am excited and nervous all at the same time.  I hate flying. HATE it.  Scares me to death. But, with a little help from my friends (aka, benzodiazapines) I think I'll be fine.

It's going to be a whirlwind trip,  leaving Friday, returning Tuesday night.  But, it will give a great start to Spring Break...when I will have the kids ALL home with  me  until April 5th.  Oy!

I plan to bring my laptop to post pictures from our trip, but I may just be having way too much fun to sit down to do that.

I need to tackle my mile long list of things to do before I leave.  I have so much to do I don't even know where to start.  Of course, I have to clean my house like I am nesting because I do NOT want to come home to a house that needs cleaning...and I had to farm out 5 kids to stay with family/friends and now I have to pack.  15 bottles of Faith's Pediasure and 30 packets of thickener will certainly give my back a workout hefting that through the airport!

Signing off...busy, busy!

Edited to say:  Faith returned to the hematology/oncology clinic on Monday...her ANC went from 0.9 to 1.9 with the help of neupogen!  Ideally, the doc would like her above 2.0, but she made the "safe zone" at 1.9.     We'll be seeing the doc again when we return to keep check on her ever changing counts.  But, for now, she's good!

Sunday, March 13, 2011

Neutropenia 101

I thought I'd better hop back onto blogger before too much time elapsed.  So, here I am. Again.

For the last couple of weeks, I had a feeling that something was a little "off" with Faith.  You know that nagging feeling that comes from deep inside? The one that sets off some panic alarms along with worry and anxiety?  Yup, that's the one.    That "feeling" got the best of me and I called up Faith's hematology doc to take her in for what I was hoping to be a quick check and CBC.  Luckily for my frayed nerves, they were able to get her in the same day I called.   I grabbed Faith and my Bff Teri, and we headed off into town to the Children's Hospital Center for Cancer and Blood Disorders.  

Before I give you the scoop, let me share a funny about when I actually called to make the appointment.
Here goes:

Receptionist (we'll call her lady): Good Morning, Children's Hospital Center for Cancer and Blood Disorders, how can I help you?
Me:  Good morning, I'd like to make an appointment for my daughter to come in for a quick CBC.
Lady: Okay, what is your daughter's name?
Me: Faith Newcomb
Lady: Date of birth?
Me: April 16, 2009
Lady: Hmmmm, can you spell the last name?
Me: N e w c o m b
Lady: (silence...)  Umm, do you have an order for her to be seen?
Me: No, I don't, she's been seen there before, many times. She's to be seen PRN.
Lady: Hmmmm, I am not finding her in our system.  Are you sure she's been seen here?
Me: Oh yes, I am sure, she's seen Dr. Cook since she was 9 weeks old.
Lady: Spell her first name please.
Me: F a i t h.
Lady: Oh! FAITH! We know little Faith! Oh my goodness, I thought you were saying "Space" Newcomb!   Oh gosh yes, please bring Faith in at 1:45 to see the doctor.
Me: Thank you so much, I will have "Space" there then!

I got a good laugh out of bringing "Space" Newcomb to the check in counter when we arrived at our appointment :)

Anyway, long story short, after nearly 3 hours in the clinic, it was determined that Faith was heading towards being critically neutropenic again.  Her last count was 5.6, which was totally awesome...about blew the doctor away since she had been down to 0.1!

Here is a quick tutorial on neutropenia:
Neutrophils:  surround and destroy bacteria in your body.
The term neutropenia describes the situation where the number of neutrophils in the blood is too low. Neutrophils are very important in defending the body against bacterial infections, and therefore, a person with too few neutrophils is more susceptible to bacterial infections.
The body protects itself against the constant risk of infection by making a lot of neutrophils. They are your main defense against infections.
People with neutropenia get infections easily and often. Most of the infections occur in the lungs, mouth and throat, sinuses and skin. Painful mouth ulcers, gum infections, ear infections and periodontal disease are common. Severe, life-threatening infections may occur. Often the child must be hospitalized and receive intravenous antibiotics.

Okay, so we're clear on just what Neutropenia is, right?  Good.

Faith's ANC (absolute neutrophil count) was 0.9.   She's not even safe to take a trip to Target if she's not above 1.5.    So, without knowing how long she has been neutropenic again, we dodged a bullet in the fact that she did not develop a serious bacterial infection.  She did get a nasty case of strep throat, but she handled it well after receiving 2 injections of kick butt antibiotics.

So, Faith had to be infused with a dose of Neupogen, also called Filgrastim.  Filgrastim is in a class of medications called colony-stimulating factors.  It works by forcing the bone marrow to make more neutrophils, in turn, increasing the ANC.  

Tomorrow at 10:15, we return to the clinic to see just how much Faith's ANC went up.  If not enough, she'll be infused again.  And now, we'll have to be taken off PRN status at the clinic and go for regular CBC's again. Ugh!   Even with that "ugh" said, I am SO thankful for such wonderful doctors that take care of my little "Space".

Ending with a funny pic...not so funny at the time, but it is now.  Let me preface this by telling you that before this happened, I had JUST cleaned up an entire box of Raisin Bran that Faith dumped all over the place.  Now this??  

"Say what?  Milk falling from the sky? Where'd that come from? Who did that? Me?"

Yes, people, she dumped a FULL gallon of milk.  Fun times, fun times...

Sunday, March 6, 2011

Wait for it...wait for it...

Yes, it's me...returning to the blogosphere after a long, unintentional  hiatus.   I find myself missing the cathartic release that comes with pounding out my thoughts on the keyboard, as random as they sometimes are.

Much has gone on since my last post in November (November, really??), but nothing so noteworthy that I need to back step and write about it.

Except for one thing.

One slightly big thing.

Okay, one really big thing.

Roy moved out of our home on February 1st.   We decided to separate as the arguments between us were becoming constant and it was putting our home and kids in a toxic place.   I am filing for a legal separation this week, and after some time, we will decide if we want to finalize it as a divorce.   My heart is heavy and I am torn though.  18 years with the same man.  My WHOLE adult life. Six children. Love. Companionship. Family.  We have many bonds that I am finding hurt like hell nothing else I've ever experienced, save for the grief that came with losing my big brother. Yes, it feels like grief.   But, as some wise woman told me (thanks Mom!)  "it is better for the kids to come from a broken home than to live  in one".

So true, oh wise one. (And Mom, notice I did not say old wise one :)

Even though we don't live in the same house, we still share six beautiful, wonderful children.  We are still a family.   Roy didn't abandon us, he didn't disappear.   Even though I am officially a 'single mom', I am thankful that I don't have the additional burden of having to go back to work to support the kids and myself financially.  I am thankful that Roy works 2 jobs to support us the best he can.

I have to admit, at first, I was full of anger. Full of animosity. Full of bitterness and resent.  Mostly over the fact that Roy doesn't have the "harder" job of caring for six children and being on duty from sun up to sun up. (in other words, 24/7).  I was angry with him for being able to go to work, then go to his home and not have any responsibilities  there other than to take care of just one.   Himself.   Now, though, after 5 weeks of being apart, I have come to realize that he hurts too.  He is lonely.  He misses his kids.  He is stressed too.

Yes, some of those feelings of anger and resent are still there, mostly because this isn't the way I wanted my life and the life of my family to turn out.  But, for now, it is what it is, and I (we ) will make the best of it.   There is more peace in the house without the toxicity between Roy and much peace as there can be with 4 boys and 2 girls...I suppose it's all relative.

I am trying, with a lot of help from my friends and family (and to be honest, a therapist and medication too) to be the best I can be as ME.  Not just "single mom me", but ME.

I am counting down the days until little Faith and I leave on a jet plane to fly to sunny (hopefully) California to meet up with some friends with 47 chromosomes too.   March 18th can't get here soon enough!

Now, what would a blog post be without a picture of my princess?