Dr Update 11.28.11

Bullet-Point Update :)

• Coffee in hand off to get blood work done, the earlier I arrive the longer I wait....boo
• Lost another 3.5 lbs without meaning too....panic
• Dr T (hematologist extraordinaire) comes in;
• platelet numbers are lower again but still acceptable
• stay off steroids
• check yourself for lumps and bumps monthly (ITP is associated with lymphoma)
• come back in two months (WHOA!)
• not concerned about weight loss
• asks if I want more children....yes Dr T I do (apparently he has four, whoa!)

I can hardly believe I get to go two whole months without blood work and visits to the oncology offices!  I'm not happy I lost more weight, I'm concerned about getting too low, I'm determined to fit in some lifting in the coming weeks to tone up and maintain my weight.  I'm now a full 7lbs below my pre-pregnancy weight. 

Lastly I'm so impressed with the care I receive from the the staff in the oncology office I visit.  The receptionist knows me by name, she is always pleasant, the woman who sets up my next appointment is also always super friendly...it makes my visits so much more pleasant.  Then there is Dr T, he's amazing.  I've seen doctors in the past who seemed to hardly know my name let alone be able to reference multiple appointments of data off the top of their heads.  He knows all my stats, he knows that I have Liam and that Liam is my first child.  He asks about my holidays, about Liam and how I'm feeling (beyond the physical), he doesn't do this to make small talk but because he seems to genuinely care....this makes all the difference in the world.  I feel cared for, genuinely cared for, safe in the care of Dr T.  It's so nice to have a doctor I trust and who makes me feel like a person and not a paycheck.  However I really look forward to the day when I don't have to see him so often, I pray that day is sooner rather than later.

Thank you to those of you praying for me and my little family, clearly it's working (I've always believed in the power of prayer). 

Much Love
-Jen

Miracles Happen

I had forgotten about this post until today, one where I spoke about a dear friend (we actually grew up together), who was told she wouldn't be able to have anymore children without serious medical intervention....then she got pregnant with almost no medical intervention (she was only on metformin).

Her little boy just turned two months.  I've seen miracles just happen(song)!

-Much Love
Jen

A Thankful Day

I work hard to be thankful for what I have and not wish for things to be different too often and these days being thankful comes easily.  So many things could be different and could have gone "wrong" that I feel like my cup not only runith over but is at the bottom of the ocean.  It's no secret I'm a lucky and very blessed girl, nay woman.

At this time last year we had just annouced our pregnancy to all our family and friends, I was sick as a dog with all day sickness but cherishing each moment of my pregnancy (and praying all the time that baby would make it due to weeks of spotting and bleeding).  This year V and I get to tote little Liam off to MIL & FIL's with about 30 family members, I could not be happier and I'm so very grateful.

I hope and pray with all my heart that each of you have so much to be thankful for, or at very least can find one thing to be deeply grateful for.

Much Love,
Jen and Liam

Save Your Life

I can now officially save your life, I became CPR/AED Certified today....God I hope I never have to use what I've learned today.

Small

So little, so funny, so sweet.

I think about this often...He won't always be this small.  I work hard to cherish every moment I have with Liam.  I think this comes more easily to me than some of my stay-at-home moms because I am away from  him during the day and only get about 2 hours/day with him (not counting commute time).  It's usually when he's sleeping or when I'm at work looking through his pictures when a heart-string gets tugged on and I say to myself he won't always be this little and I long to see him, hold him, play with him.  These days are fleeting and I will cherish every one I get to have with him.

158

Liam was 158 days old when he rolled over fully from back to belly, it was amazing to witness and the best part was V and I were both there and he fully had our attention.  These are the moments that make it all worth the hard parts.  I was so proud I yelled a little and sorta scared Liam. LOL!  He's napping as we speak, hopefully he wakes soon because we have a date with auntie E soon.

Because I'm the Mom

No I'm not already saying that to Liam, unfortunately it looks like I'll have to say it to his aunt K early and often.  Aunt K is 25 but acts more along the lines of teenager to pre-teen (no joke).  She has never held a real job, hasn't continued her education and only lives away from her parent's home for a few months at a time before returning, she has no adult responsibilities what-so-ever.  Last weekend she moved back, again.

K is a nice enough girl but seriously immature.  She lacks drive and desire to act like an adult and in all honesty her parents don't seem to expect her to either.  I in no way think they should shun her or any business like that but I do think they need to stop enabling her (and her 27 year old brother who also lives in his parent's home and works sporadically at best).

As I mentioned K moved back on Saturday, she wanted to come over that day and see Liam...I said no.  Our weekends are A.) Busy but B.) Ours, and our time as a family is sacred (or should be).  And while I understand she wants to see Liam it doesn't have to be within hours of her arriving in town (I told her she was welcome over the next day and she never so much as texted us).   Today is Wednesday and she has texted and called me 11 times, yes Eleven.  Great...just what I wanted to deal with in the middle of my work day.  I finally had to tell her that no she could not pick Liam up from Nanna's and that no tomorrow would not be good either (V and I have agreed she will not be allowed to drive with Liam in her car, she isn't responsible enough) and really one day is not enough notice to give Nanna about not having Liam.  Watching Liam (and the two other children she has) is her business and while it's run out of her home I still do my best to treat it all professionally, K does not understand, nay K does not care.  I'm certain she has called no fewer than four people to complain.  It's not like I'm blocking her from seeing Liam all together, she will see Liam on Friday when her mom watches him and I told her Monday would be fine.  What she doesn't yet get is that she can watch Liam but on our terms and our terms only.

I have a feeling it's going to be exhausting having K back in the same town as us, at least for a while.  And if I have to pull out the "because I'm his Mom thats why" I will.  Thankfully V is on the same page as me (he tends to give into her a lot because she is the only girl and the baby of the family, so annoying).  I'm pretty sure she thinks I'm a pushy b-och and ya know what that is fine, I expect a lot of her and make her play by life's rules, someone has to teach her these lessons and I suppose it's going to be me.

I'm gonna need this shirt.

Dr Update 11.14.11

Quick notes from my most recent Dr appt.

• My platelet numbers are lower but still acceptable.
• I'm no longer Anemic but my red blood cells are still far too small so I have to stay on Iron pills for at least a year.
• I'm officially off my steroids.  Dr T warned me that I'll likely feel horrible transitioning to being completely off of them because my body is so used to having them now. (I'm allowed to take a 1/4 of a pill if I need to but I've already decided not to).
• More blood work in two weeks to check levels and see how my body is handling life without steriods. 
• Dr T says I'm doing "remarkably well" and that ITP is typically a "nasty disease".
• Apparently it's not typical to step down on the steroids so quickly, usually it's months of going up and down in dosages before either being able to get off them or having to use an alternative treatment. (including but not limited to surgery to remove the spleen)
• I've lost 2 lbs since my last appt which makes me officially 147.5lbs. {at goal weight}
• We are still facing months (if not a year+) of monitoring before we know if this is chronic.

I'm not even sure how I feel, if I feel hopeful or not.  I was so nervous about yesterday's appt but now I'm almost more nervous about the next one.  I guess I'm not sure I'll ever not be nervous about them.

Can-o-Worms

It's about to get way deep up in here, if you aren't up for that I'd suggest flat out skipping this post, otherwise buckle up peeps.

As I've mentioned before I was emancipated by the state I live in on my 16th birthday.  I have been on my own since that moment.  What I haven't mentioned is that I had a younger brother, he was taken by the state when I was maybe 9 years old, and he should have been, he had/has a developmental disability and could not defend himself against the abuse in our home (at the time he was 7 or younger but mentally about 3).

For so many years I was just trying to survive myself and I didn't contact him, looking back I wish I would have, I regret it but I was so young with so much on my shoulders....I was just doing the best I could.  While I didn't contact him I always knew where he was and that he was taken care of (his foster parents eventually adopted him).  When I was ~20 I was contacted by our state wanting me to take over the legal responsibilities of my brother.  I freaked out, I could barely keep my head above water with all the responsibilities I had just taking care of myself....I declined those responsibilities with the understanding I could pick them up later.

Now is later.  I've always, always, always thought of him, prayed for him and intended on visiting.  Enough years have gone by and it's time.  Today I began the insane process of trying to locate exactly where he is now (I know what town).  Unfortunately his adopted father died a number of years ago and the adoptive mother had to place brother into a adult care home.  Today I made a dozen calls trying to dig up the details of where exactly he is at and how to contact and visit him.  The only call I didn't make is to his legal representative, if all else fails I will call  her (she is still in practice I checked).  I'm not entirely sure I'm ready to full on take up the legal responsibilities of brother but I am ready to contact him and visit eventually.

I may have opened a big 'ol can-o-worms.  I hope not, I think it will all be ok, it feels ok so far.  I didn't actually get any information, privacy laws kept those on the other end of the phone from giving me brother's details but I gave them my contact information and I believe they will contact me, why wouldn't they?  My only fear is that, somehow/someway my "parents" will get a hold of this information and wiggle back into my life.  That would be a nightmare, it actually makes me sick to my stomach to think of that happening.  But it's a risk I'll have to take eventually.  You are probably thinking I'm ridiculous for worrying about that but they all live in a small town where everyone knows every one's business and word gets around real quick.

So many thoughts creep into my mind, I so regret not reaching out to brother...I hope he didn't feel abandoned by me.  I know his adoptive family loved him so and that he was happy there.  I can't take back not contacting him for all those years, all I can is start here and now.

Happy Thoughts

I need to be distracted therefore a random collection of happy thoughts:

1. Liam is sooo close to rolling over back to front!  (He's been able to do tummy to back for what seems like forever.)  He currently will roll on his slide and sort-of hinge on his hip but at the last moment he flops on his back.  He finds this hilarious as does mom. :)  I can't believe he'll be 5 months old tomorrow!  Holy Moly!

2. I got up ultra early and went to the gym, when I weighed myself I had hit my goal weight of 148lbs, 3 lbs under my pre-pregnancy weight, now to tone up.  (Also I managed to get 2 workouts in this weekend, incredibly difficult to do but I did and now I'm sore, the good kind of sore, yay!)

3. I am obsessed with becoming a runner, in fact my goal is to run a couple 5k's next summer and maybe even a half marathon.  I'm thinking about setting a walking/jogging/running mileage goal for 2012 (around a couple hundred miles, I think I can really do it).

4. I just ordered some boots from target.com!  I really wanted brown but they were sold out so I got them in black (not sold in stores).  And....I sorta ordered a purse too.  I'm not sure I love the purse and if not I'll return it, guess I needed some retail therapy.

5.  I made this tonight, I added some turkey sausage and some zucchini (browned the sausage first and added it in before baking)  oh it was so yummy!  V even liked it, like really liked it.  I feel so accomplished when I make something we both really like.  I'm actually excited for leftovers tomorrow!  P.S. go check out Budget Bytes so has so many yummy recipes!!!

6.  I've been making coffee at home each morning (because I'm reliant on it at this point) which is more affordable and quicker but since I have to see Dr T tomorrow I'm treating myself to a latte...a single shot, carmel latte with whip cream....yeah I've been daydreaming about it all day!  Mmmmmm

7. Liam is amazing, so happy and sweet.  His little laughs make my world a brighter place.  He's such a funny little guy, I'm so very thankful for him.


Hey, that actually worked, yay!

And for your enjoyment a new Liam picture, we bought him this over the weekend, little peanut baby isn't big enough yet but he enjoys it (in small doses).

Mix Together Equal Parts: Exciting & Scary

Halloween brought the latest appointment with Dr T (yes, yes hematologist extraordinaire). I've noticed I get anxious about my appointments the night before, I dread being poked...it's gotten really old.  It probably seems silly but knowing I have to deal with this most Mondays is hard to handle sometimes.

We went about our usual morning routine at home and after dropping Liam off it was to the hospital for labs and my appointment.  I rather enjoyed the distraction of several staff members being dressed up, it's not everyday that Raggedy Ann draws your blood! The staff in the Cancer Specialists office were all Disney villains!  So fun!  I was weighed in (only lost one pound in 2 weeks, boo!) and headed back to the exam room to wait for Dr T who arrived quickly and with good news, my numbers are still stable!  I can move to half a pill every-other-day!  Woah!  He wants to see me in two weeks and if my numbers remain stable I can stop taking the pills all together!  Woah!  The thing I most appreciate about Dr T is that he anticipates what I'll ask him, so he covered somethings I was thinking about such as the likelihood my ITP will come back (1 in 3 chance) and what my options are should it appear to be chronic (scary), future monitoring over the next month/years and so on.  I'm excited that there is a plan and that we are finally looking forward more long term but....

I wish I could tell you I felt all this reassurance and was worry free walking out of my latest appointment but I didn't.  Thankfully I had to head straight to work so I couldn't dwell on it immediately but my mind found plenty of time to consider what my next lab results could mean.  To sum it up quickly: I'm scared.  I do not want to live with this.  I don't want to wonder if or when it will come back, I don't want to over-analyze every bruise and bloody-nose.  I don't want to have quarterly/bi-annual/annual monitoring.  I want this to be over, simply over.  Too bad we seldom get what we want in life huh?  The cold hard truth is I have no control over this, chances are it will come back or is chronic and I will have to think about it long term.

This last steroid dose change has been really difficult on me physically too, I can tell when I don't have that stuff pulsing through me, suppressing my immune system, because I feel terrible on the days I do take it.  I haven't had anymore bruising, which is nice, but I got a bloody-nose the other night and it hit both V and I to our cores.  For one thing this was no ordinary bloody-nose, blood poured and proud from me, I could hear the fear in V's voice as he asked from the other room if I was ok.  He wasn't really asking if I was just ok, I could hear the meaning behind his words; Is this more than a bloody-nose?  Should we call Dr T?  Are you as worried as I am?  I can't tell you how thankful I was when the bleeding did finally slow and eventually stop.  (It didn't bleed long enough to warrant a call to Dr T).  I really don't want to go through that again.

And that is where I will leave it, not exactly ending on a high note but I will not continue with this pity party of one.  You have to play the hand you are dealt, whining about it will do me no good.  The biggest realization that has come of all this is what a miracle baby Liam really is, I believe in miracles more than ever as a result of all of this.

Lazy Sunday

Cute Owl made of coffee beans..
Mmmm I love coffee!

Today is blissfully lazy.  The time change has us all thrown off, well at least me.  V got up early with Liam while I dozed, due to the time change I'm not sure when I got up (8:30 or 9:30...it's still up for discussion), when I finally arose I was starving so I made breakfast burritos, yum.  I had all these wild ideas about all the things we'd get done today but those quickly went out the window in favor of a lazy Sunday and I'm so glad. 

I have gotten a few things done, paid a few bills, organized a few small things for the week and even worked on the final draft of my Personal Trainer Certification (I've spoken about that right?  I have about 5 weeks to finish it and as long as my CPR class doesn't get cancelled I will start 2012 as a Certified Personal Trainer, go me)  V has enjoyed lots of Liam time (with the tv blissfully off, wahoo) and I've so enjoyed listening to the two of them giggle the morning away!

We got our first snowfall Friday night and while most of it has already melted away it's officially Liam's first winter.  I'm thinking about bundling him up and taking him out for a go in the stroller, we'll see.

I hope your Sunday is equally blissfully lazy.  I'll update about my latest visit to Dr T another time, for now I'm doing ok and we are starting to discuss long term stuff which is equal parts exciting and scary, more to come on that.