Macy

Macy

Friday, February 24, 2012

RESULTS

So good news!  We found out today that Macy's complementation group has been found!  We don't know what it is yet because the lab has to finish the report, etc. so we will know in a week or two.  But atleast after 6.5 months of waiting we finally have news!  :)


Next step is gene sequencing.  Finding the complementation group tells us what gene the mutation is on.  Now they can sequence that particular gene to find out what/where the specific mutation is on that gene.  They will be able to find out what mutation she inherited from me, and what mutation she inherited from Adam.  After that is found and our carrier testing is complete we can FINALLY start the IVF with PGD and HLA matching.  Hopefully we will be in business this summer, or fall at the latest!


take care,
Jenn



Monday, February 20, 2012

I Scratched!

Can you believe it's almost March?  Were did the time go.  This winter has been...well, not a winter at all.  I'm not complaining though.  Not a big fan of snow anyways, but none the less very happy for spring to be around the corner.


So, Macy has made a couple of exciting break-through's.  The first being she is actually asking for her sippy cup during the day when she is thirsty.  I know that might not seem like a big deal to most.  But when you have a child that (almost exactly a year ago) stopped eating/drinking by mouth completely to the point of hospitalization, and had zero interest in food or drink for a long time start asking for her sippy or water; that's exciting!  The second is she is starting to walk.  She has been cruising furniture for so long but never wanted to try walking on her own until last week.  She started out with a couple steps but is now doing about 4-7 steps at a time by herself.  She's so cute, and is so proud of herself when she does it!  Man, I love her so much!


Still no word on her test results.  I am starting to worry that maybe A, C, & G came back negative and that's why?  They test those 3 groups first and if they are neg. go to the next 3 most common.  It is kinda complicated and long to explain what that means, but we want her to be an A.  Without getting too much into it, the bottom line is certain groups are worse than others.  And by worse I mean higher chances of Leukemia, cancer at an even younger age, and a much shorter life-expectancy.  Not to mention we may not be able to do IVF with PGD if she is certain groups.  Hopefully they will give us some info. soon before I start freaking myself out too much.  If she has to have Fanconi Anemia, please pray that atleast she's an A.


So, Adam and I have been very diligent on trying to not spend too much and save, save, save for the IVF.  But, I have had an "itch" for about 6 months or so now to go on vacation.  Every time I would get close to booking I would talk myself out of it.  But I finally scratched the itch and gave in, and booked a vacation to Disney World in the Spring.  We have been through a lot this past year, and I think we really need to get away and try to relax so hopefully this will help.  I think Macy will have a good time, and there is no way we will have all the info. we will need to start the IVF this spring anyways.  Unfortunately, I am thinking it will be more like this fall.  But hopefully not too much longer than that.  Being 30 now I have never heard my biological clock ticking louder than it is now.  Tick Tock...It's like I have that crocodile from Peter Pan following me around everywhere reminding me...tick tock tick tock!  (due to our upcoming vaca I thought that particular reference would be fitting).  :)


Macy will have her HemOnc appointment in March to check her levels again.  Hopefully all of her counts will be in the normal range.


Also, little Macy girl is going to be in a calendar (Miss October) to help raise money for Fanconi Anemia.  I don't have the info. on how to purchase one yet, but if anyone is interested once I get the info. I will share it.  All proceeds go to a wonderful cause!  Thank you to those who are putting it together!  


Macy pics:
Going for a walk with daddy's gloves on

Eating a snack sitting in her new Princess desk

checking out her new sheets

On V day morning...walking around with her Dino AND her balloon everywhere

That beautiful smile we all love!

Day after V day and still bring the balloon everywhere

Where did the balloon go?

Ready for snack time

Playing with her balloon
Well that's all folks!  Take care,
Jenn

Monday, February 6, 2012

Dragon Parents (Emily Rapp)

"Parenting advice is, by its nature, future-directed. I know. I read all the parenting magazines. During my pregnancy, I devoured every parenting guide I could find. My husband and I thought about a lot of questions they raised: will breast-feeding enhance brain function? Will music class improve cognitive skills? Will the right preschool help get into the right college? I made lists. I planned and plotted and hoped. Future, future, future.

All parents want their children to prosper, to matter. We enroll our children in music class or take them to Mommy and Me swim class because we hope they will manifest some fabulous talent that will set them — and therefore us, the proud parents — apart. Traditional parenting naturally presumes a future where the child outlives the parent and ideally becomes successful, perhaps even achieves something spectacular. Amy Chua’s “Battle Hymn of the Tiger Mother” is only the latest handbook for parents hoping to guide their children along this path. It’s animated by the idea that good, careful investments in your children will pay off in the form of happy endings, rich futures.

I will never be a tiger mom. The mothers and fathers of terminally ill children are something else entirely. Our goals are simple and terrible: to help our children live with minimal discomfort and maximum dignity. We will not launch our children into a bright and promising future, but see them into early graves. We will prepare to lose them and then, impossibly, to live on after that gutting loss. This requires a new ferocity, a new way of thinking, a new animal. We are dragon parents: fierce and loyal and loving as hell. Our experiences have taught us how to parent for the here and now, for the sake of parenting, for the humanity implicit in the act itself, though this runs counter to traditional wisdom and advice.

NOBODY asks dragon parents for advice; we’re too scary. Our grief is primal and unwieldy and embarrassing. The certainties that most parents face are irrelevant to us, and frankly, kind of silly. Our narratives are grisly, the stakes impossibly high. Conversations about which seizure medication is most effective or how to feed children who have trouble swallowing are tantamount to breathing fire at a dinner party or on the playground.

And there’s this: parents who, particularly in this country, who are expected to be superhuman, to raise children who outpace all their peers, don’t want to see what we see. The long truth about their children, about themselves: that none of it is forever. I would take my chances on a stripped battlefield with a sling and a rock à la David and Goliath if it would make a difference. But it won’t. I can roar all I want about the unfairness of this ridiculous disease, but the facts remain. Parenting, I’ve come to understand, is about loving my child today. Now. In fact, for any parent, anywhere, that’s all there is."




Those words are from a woman named Emily Rapp whose son has Tay-Sachs disease.  I pulled pieces from an article she wrote because I can related to a lot of it, and she states it so well that I couldn't have described it better myself.  It gives some insight into what it feels like to have a child that faces a life-threatening or terminal disease.  Thought I would share.  


For Macy, we try to stay positive and hope that new treatments are found everyday.  Even with a successful bone marrow transplant the average life expectancy of someone with FA is 24 years old.  Many children don't make it to adulthood, and there are more and more making it into their 30's.  There is no way to know now what fate she will have since at this time there is no cure for her disease.  I wanted to share this just because a lot of times it feels as if we (parents like us) live in a different world than everyone else; I guess in many ways we do.


take care, 
Jenn

Friday, February 3, 2012

'Downward Dog'...Macy style!

Things have been going pretty well over here at the Stewart household lately!  We have been focusing on enjoying family time with Macy, and have been transforming her bedroom into a Princess paradise!  (which she loves).  We have been doing a lot of thinking about spring and summer too...it's hard not to think about it when it has been in the 50's the last few days, and we're in MICHIGAN!!  Crazy.  Maybe we'll get lucky and winter will skip right over us this year!  (one can only hope!)  We usually do alot of camping April through October, and just bought a new camper last year so we figured we better get some use out of it.  It is something to look forward to, and since we are saving for IVF with PGD we can't afford any "real" vacations this year.  Hopefully next year though because I am definitely getting the itch; and it gets harder and harder to ignore.


Macy is still eating great.  She has been off zantac for about 6 weeks now and has shown no signs of reflux.  We did hit a bit of a snag in that our insurance wouldn't cover her increased dosage of prevacid; so we easily by-passed that by just buying the 'over the counter' instead.  We break open a capsule and dump the beads onto a spoonful of applesauce, and give it to her that way; and it works great!  And a bonus....it is actually much cheaper than the Rx.  Win-Win!


Macy has NO appointments this month, so we are enjoying that.  She has a few in March and a few in April so hopefully this month will drag a little!  She has to get her blood drawn in March (every 3 months remember...goes by way too fast).  


It has been a month since our blood draw for our HLA typing was done.  Since I have not heard anything I am assuming that means neither Adam nor I are a match for Macy.  I have to call and get copies of the tests to know for sure, but am not expecting good news.  We weren't expecting to be matches; it was a long-shot really; but we had to try.  


Still on pins and needles waiting to find out  her complementation group results...they said preliminary results would be in Feb. at the earliest.  Hopefully in the next couple of weeks we will hear something.  It's been 6 months already, and it is so hard waiting.  


Here the best part...pic.'s of Macy!  Since I haven't posted in a while there's a lot!  :)
CAUGHT!  She took all the wipes out (in a pile behind her), unzipped her bag and took out the medicine syringe, and tried hiding it in the wipes container.

Seeing what a plastic ball tastes like in her ball pit

Looking at pictures on her cell phone

Looking cute!

Super excited over her new princess toddler bed

Reading a book in her new bed...in the living room.  Mommy put it together but waiting for Daddy to get home to move it to her room.

Coloring at Red Robin

Getting all bundled up to play in the snow (one of the few days we have had some this year)

Loving the snow

Wanting to join Bela on the deck

Macy loves yoga...on her way to 'downward dog'!

And there it is!
Happy Groundhog Day!


take care,
Jenn