Friday, November 18, 2011

Girls just wanna have fun!

Things have been going pretty well here.  Macy is  starting to eat and sleep better now that we restarted her zantac.  I am going to ask her Dr. next month about upping her prevacid dose.  I have been thinking that maybe it's not that she needs both; maybe her dose just needs to be increased.  Hopefully that will do the trick and we will be rid of zantac forever!

Can't believe that Turkey day is already next week.  I made the mistake of trying out a really tasty dessert recipe this week, and now I cannot stop eating it!  Adam was gone up north hunting until last night so I had it all to myself and ate way more than I should have.  Usually with T-day comes 'Black Friday' shopping for us!  But I am thinking of skipping black friday this year. We always end up buying a ton of stuff we don't need, and I have been trying to de-clutter the house lately.  I don't want to add to the clutter I have been trying to get rid of.  And Macy already has a zillion toys anyways.  I guess we will see if I will be able to resist or not.

Macy is very mobile now.  So good to see!  Here are some pic's of her having fun playing, etc.
Love that smiley face!

Macy's very first ponytail

Playing in her room in her princess tutu!

Two peas in a pod!  Macy and Bela

Mischievous smile...I am sure she is up to something!

Getting ready for winter in her snowflake PJ's

Trying to think of something more fun to do

Love those sparkly blue eyes!
On a different note, Adam and I are getting a date night on Saturday.  Dinner and a movie...should be fun!  We don't get out too often so I am excited.  Although, I am actually looking forward to the boredom of winter.  Maybe get some much needed relaxing in! :)

take care,

Wednesday, November 9, 2011

Hand Update

Somehow we got lucky, and Macy only has 1 appointment in November!!! (whoooo hooo!)  She had her hand appointment on Monday.  Her Dr. said that her left hand (the one she had the pollicization on) looks like it has healed well.  There is scarring and some scar tissue.  Over time that tissue will soften some and he said we can help it along by massaging it.  That's not too easily done on a 1 year old so I have been trying to think of creative ways of holding Macy's hands and squeezing them while she is learning to stand and walk so she doesn't notice I'm doing it.  Other than that she doesn't like people messing with her hands.  She is slowly starting to use it more and more.  Still isn't pinching (finger to thumb) yet, but that will come.  

(I just noticed that I am the queen of run-on sentences...luckily I'm not an English teacher, hehehe)

Originally we had planned on her other hand surgery next month.  But her Dr. wants to wait atleast 6 months or so and see how her thumb is developing and how she is using it still.  Right now she does use that thumb to pinch, etc. but the joint at the base of the thumb is very weak so when she puts pressure on it it just bends in half the other way.  Her Dr. and I both agreed that we want to mess with that hand "as little as possible".  I am thinking when the time comes we will just have him stabilize that joint with some muscle transfers and that will be it.  Maybe rotate it a little so it is at a better opposing position.  We'll see.  I must say though I am pretty relieved that there will be no more surgeries in the near future.  They're always so stressful.

For almost the last year Macy has been on both prevacid solutabs and zantac for her reflux.  We have tried many times to wean her off the zantac to see if just the prevacid will work for her but it doesn't.  She really isn't supposed to be on the zantac because it suppresses the bone marrow.  Macy shouldn't be taking anything that does that, but there are no other options.  A week ago we stopped giving her zantac again and we thought for the first time that we had finally gotten rid of it.  But the last couple of days she has started getting her reflux symptoms back.  She has not been sleeping well, she is not eating well and turns away from food, and I notice her refluxing even when she hasn't eaten in several hours.  Oh yea, and she puked twice this week which is the first time in over a month.  So, with much reluctance I have started her zantac again.  UGH!  I really hope we can figure something out soon, because I dread giving that to her.

So, we have officially made our first IVF appointment in December.  I wasn't sure if that was something I wanted to share yet; but it's late at night and I usually end up sharing things I probably shouldn't when I post at night.  Oh I go! It is just a consult; we are still waiting for Macy's gene testing results which now we don't expect until Jan/Feb. but there are so many ducks we need to get in a row before we can start this and this is the first step.  I am trying not to let the statistics discourage me too much.  The numbers that came out last month were that there is only a 12% chance with each cycle that it will result in a baby.  Those are not good fact those are horrible odds.  The stats are much lower than regular IVF because of the PGD part.  There is a chance we could walk away with massive life-long debt from this and no baby; which makes me incredibly nervous since Adam and I have worked so hard to be financially responsible in our lives.  But I choose to believe that this HAS to work for us.  It is Macy's best chance so I am not willing to give up.  Whatever it takes; we will make this happen for her.  She deserves it.

Well that seems to be all the news here for now.  Adam will be gone up north hunting next week so it'll be me and Macy girl!  Maybe we can get some early Christmas shopping in.  And Turkey day is just around the corner!  :)  I hope everyone has a wonderful and safe holiday season!

take care,

Wednesday, November 2, 2011

"Carpe Diem" is hard

So November is here...and we're onto the cold weather!  Not sure if I am ready for the cold and snow, and freezing rain; but it's coming whether I am ready or not, I guess (tear).  We are trying to enjoy these last few days of decent weather we have left.  Macy and I spent a nice day out on the town today doing some after Halloween shopping.  I bought her 3 costumes for next year.  Maybe she'll like atleast 1 when the time comes (I hope).  One is 'Little Red Riding Hood' which is sooo cute; definitely my favorite.  Another is a Pumpkin Witch, and the third is a Pirate.  I am sure she will look adorable in whichever she decides, and if not she can atleast play dress-up with them.  She was a cow this cute!
Macy in her 'cow' costume

It's so cute how she always crosses her legs...what a little lady!

Macy is continuing to eat well.  Her volume of food is going up and up each week it seems.  May I dare say she is pretty much to the point of eating the "normal" amount for her age...close.  She is still only eating foods with really little chunks in it though.  I tried a Gerber Graduate Toddler meal thingy.  It has big chunks...well, it's all chunks and that didn't go over too well.  She's not ready for that yet.  But she does like big crunchy things like: tortilla chips, veggie sticks, and graham crackers.  And she wants a bite of anything on our plates so that is good.  The only other thing we need to work on is her liquid volume.  She only drinks about 2 oz. a day by mouth.  I am not sure how to get her to drink more.  She doesn't seem very interested at all.  So until we get that liquid volume up; she will continue as a tubie!

Next Monday is Macy's hand appointment.  I plan to speak to her Dr. about her other hand surgery, and hopefully it will be before Dec. 31st due to insurance reasons. (  I do have a feeling though that she is going to have to have another surgery on her left hand as well.  Her range of motion with her new thumb is very limited; and she holds it withdrawn into the palm of her hand all the time so she does not pinch with it or open it up at all.  We knew this may be a possibility, but I guess I was hoping she wouldn't need it.  I hate having to put her through more surgeries.  Poor girl.  :(

It seems like Macy has mostly gotten over her cold she has had for about 10 days.  It was pretty mild for the most part so that is good.  Her being sick makes me nervous...I don't want it to jump start anything in her like her bone marrow failing so I am glad she is starting to feel better.  And speaking of better; she has been getting a lot better at pulling herself up into a standing position.  I found a really good motivator for her yesterday...grape nerds.  I put one in her mouth last night and she loved it (not that I like her eating sugar...but I guess a little bit is okay).  I just put the box of nerds on the couch and she pulled herself up like it was no big thing.  Now she is a standing machine.  
Macy's "sour" face after trying her first grape nerd.

What happened after we took the nerds away from her...not happy!

So anyway, one of the things I think about ALL the time now; ever since Macy's diagnosis is what can we do to enjoy each day.  To make sure we make each day special and live to it's fullest.  I have found that it is a little harder than I thought.  It's a simple concept "carpe diem"---seize the day.  But then it makes me think we should be doing more. Traveling more, going more places, doing more things???  I don't do we know if we are doing all the things we really want to do?  Going the places we really want to go?  Living where we want to live?  There are so many choices.  How do you know if you are living each day to the fullest?  Wow, now I got my brain in a twist.  Maybe it doesn't need to be so complicated.  Maybe it's just as simple as 'live, laugh, love'?
Macy hanging out under the table
What a cute picture of our "little stinkie".  I don't remember how she got that nickname, but I am thinking we probably should try to come up with something else.  Some how I have a feeling she's not going to like being called "stinkie" when she gets older. ha ha ha.  Anyways, love her so much!

As always, praying for a cure: Fanconi Anemia awareness!

take care,