Monday, September 26, 2011

Hem/Onc Results

Macy had her bloodwork last Thursday.  Thankfully, her Dr. said her bloodwork looked "beautiful"!  So good to hear.  All of her numbers are perfectly within the normal range so no signs of bone marrow failure starting yet.  It is assumed her numbers will be normal or atleast good until she is 5 or 6; but this disease is so unpredictable you never really know.  That is the average age the bone marrow fails or starts to fail, but it is really different for everyone.

I think having 3 appointments last week was really hard on Macy.  She got poked at all 3 so by the time she made it to her Hem/Onc appt. she was not having it anymore and fought them tooth and nail.  It took multiple people to restrain her, the guy that drew her blood pulled the needle out too fast and blood squirted all over the place in the room....all over his hands and arms, the people holding her down, her, and the chair.  She was so upset; he was just trying to hurry.  Then for his efforts; Macy kicked him and tried to bite his arm.  I will need to make sure not to put so many bloodwork/shot appointments so close together in the future.

Macy's Minnesota trip is coming up in a few weeks.  I haven't even made any reservations yet so I need to get on the ball.  Flights are SUPER expensive; like $800.00 a person if you want a direct flight so I have been putting it off.  Our insurance company does reimburse us for travel and lodging since it is so far away; but it still makes me nervous because we have gotten burned in the past on insurance stuff they were "'supposed" to cover.  I will probably call them 1 more time; just to be double, triple sure; then book.

I just saw a study that came out that shows that Turmeric suppresses cancer growth in the head and neck.  Since that is one of the main cancers that come along with FA; I will be adding Turmeric to our daily food intake from now on.  I have been doing A LOT of research lately on proven, clinical studies that show which foods, spices, etc. have been shown to help prevent, or slow the progression of cancer.  Since Macy is only 1; we have the time to do things right to try to make as big of a difference we can in preventing/prolonging the onset of cancer for her.  I plan on making our meals based on those foods from now on.  It will be good for us too!

Feeding therapy is on hold right now because of some insurance issues.  However, I think until things get figured out we will be just fine.  Macy is still doing awesome eating; and is eating like a "normal" kid a lot of the time.  She actually gets excited to eat now; and enjoys the different flavors.  Her volume is getting up there too. She is even liking milk.  We are going to stop her night time feeds, and just do the bolus feeds during the day.  No matter how much we try to avoid it there have been several times that Adam or I have gone into her room in the middle of the night or in the morning and the tube has been wrapped around her chest and neck several times.  It was scary!  She moves around so much it is unavoidable; so it's not worth trying to continue to feed her at night.  She will sleep better too without the tube attached her to at night.  Since she is 1 now; her milk/formula requirements go down, and what she needs plus a little more we can feed her during the day now.

Well, I think that's it for now!  We had a nice time camping in Ludington last weekend.  I forgot the camera though so we don't have any pictures.  2 weeks before the Halloween/Fall Festival at the lake.  We will be there for 5 days so that will be fun!  Hopefully my costume arrives in time!

take care,

Wednesday, September 21, 2011

Eating Machine

So I really don't want to jinx myself when I say this; but Macy has turned into quite the little eating machine this past week.  She has transitioned from smooth purees to chunks like a pro, and is doing awesome at eating crunchy foods.  She is starting to take a spoon and put it in her mouth to take bites herself, and had lasagna today and ate the noodle pieces like it didn't phase her one bit.  I have even started giving her a little bit of milk at her meals and she doesn't seem to mind it at all. (let's hope this continues!).  She doesn't like juice though.  I think it may be too tarte for her so I tried diluting it with water.  She still didn't seem too wild about it.  Oh thing at a time!
Macy's first spaghetti face!
Eating chocolate cake at her birthday party!
Macy's Birthday cake!

Macy's birthday party went well!  We had a good time, and we were glad that everyone could make it.  Macy did excellent; even skipped her nap and wasn't fussy at all.  She was taking everything and everyone in.  It's so weird now when we are somewhere and someone asks how old she is, and I say 1.  It seems so old!
Mommy/Daughter picture

Macy's b-day dress and "1" crown

This is the best family photo we have.  Adam looking at the camera, me saying "take the picture already", and Macy looking in another direction.

Macy has 3 appointments this week.  She saw her hand surgeon on Monday.  She had her 1 non-dissolvable stitch removed.  He said it is looking good.  The outside is completely healed now; but the inside has some hard scar tissue that he said will soften over time.  It will take 6-12 months to see what kind of full range of motion she has with it.  We meet with him again at the end of November, and we will talk about the surgery on her right thumb then.

Today Macy had her 1 year well child check up.  She was 29 inches long, and 17 lbs.  She is still small, but is gaining weight.  She went from the 1 percentile to the 2.5 percentile so she is getting up there.  Her length is still in the 47 percentile so that is good.  She did have to get 4 shots today.  2 in her legs and 2 in her arms.  I felt SOOO bad for her.  She cried when they did her legs; but her arms....oh I have never heard her scream like that before.  Hopefully these are the last shots for a long time.

Thursday she has her hematology/oncology appt. where she will need to get blood drawn.  She will have to get blood drawn every 3-4 months for the rest of her life now.  :(   I would like to say maybe she will get used to it; but does one ever get used to getting poked with needles?  probably not.  

We have 2 more camping trips coming up this year.  The fall after labor day is usually some of our favorite times to camp.  It's not busy; we can get a lot on the lake or channel; and the weather is usually perfect: warm with a slight chill at night which is perfect for a camp fire.  I ended up buying Macy another Halloween costume.  We have 3 Halloween events this year so she is going to be a cow, and a witch!  She'll be so cute!  can't wait.  In case I haven't mentioned this; Halloween is our favorite holiday.

Let's see...what else has been going on?  We have decided to forgo a vacation now and are going to rip out our carpet and floor up stairs and down and put in wood floor.  We bought all the flooring and paint (we are going to re-paint first) so that will be an interesting winter project.  Should be nice when it is done though.  I need to see a Urologist due to some kidney stones I passed this week (ouch!).  I had a CT scan done the other night which confirmed one making it's way down; plus multiple other stones in both kidneys (fun fun).  We are always so focused on Macy's health care that when something comes up with one of us we're like "what?  I don't have time for this!"  The last thing I want is to spend more time at the Dr.

Well I think that's it for now.  Let's hope and pray Macy's bloodwork #'s come back all in the normal range still on Thursday!  Here are a couple more pictures.
The morning after in her tutu!

Trying out her new zebra rocking horse

Some of her new toys in her play area of the living room

take care,

Thursday, September 15, 2011

Macy's 1st Birthday!

Tomorrow is Macy's 1st birthday!!!  yeah!  Time has gone by so fast this past year.  So much has happened, and our lives have changed so much.  I thought it may be nice to take a little trip down memory lane and remember how little Macy girl came to be!

When Adam turned 30 in the spring of 2009 we knew we better get started on having kids.  Our original goal was to HAVE a child the year he turned 30 and I turned 28, so we were a bit behind.  We took a few month to prepare (prenatal vitamins, etc.) and gave it a go.  I found out I was pregnant with Macy in the middle of January 2010, and we were very excited to be on our journey to parenthood.  Macy was a very calm and relaxed kiddo in-utero.  She moved around but wasn't overly crazy kicking around in there (my placenta was also in the front which makes it so you cannot feel movement as much so that may have been a factor).  But I remember reading something about how your kiddo acts in the womb will show you a sneak/peak of his/her temperament out of the womb.  So far that has seemed about right.

On the morning of September 16th 2010 I got out of bed around 8:30am only to find that my water had broke.  I called Adam at work, took a shower, ate a snack, and waited for Adam to get home (he works about 45 min. away).  I was having no painful contractions at all so it was a very calm, and laid-back drive to the hospital.  We were admitted around 10am (that is the nice thing about your water breaking you are guaranteed to worrying about being sent home).  We watched movies, and called everyone to let them know.  Around 3pm they told me they were going to start the pitocin soon because I still had no painful contractions and was still only a 1 or 2.  After that the contractions did start; but for me they weren't that bad at all and when they came in for my epidural around 6:30pm it still wasn't that bad.  I took the epidural anyways (no point in seeing how bad it can get), and I couldn't even feel my contractions after that.  So we watched more movies.  It came time....and they went to get the nurse.  That was 9:30pm, and I remember that because my mom called at that exact time as we were waiting for the nurse to come in.  The Dr. almost missed the delivery, but came in at the last second, and only 10 minutes later; Macy girl came into this world at 9:45pm.  She was so little at 5lb. 9oz and 18 inches long; and so beautiful.  The whole labor and delivery process was so calm and easygoing....I couldn't have picked for it to have gone any better that what it did. We got so lucky!

I remember bringing her home from the hospital; and she was sooo little that we called my mom before she came over so she could run out quick and buy some preemie clothes and diapers because newborn size were way too big.  I look at those clothes now and I can't believe she ever fit in them.  So little!

It is amazing in 1 year how much change happens in a baby.  From a helpless newborn who can barely raise their head; to a fumbling/all over the place toddler that has her own opinions, likes and dislikes.  She may not be able to verbalize them all yet; but they are there in every squawk, scream, mumble, and short babbly sentence.  And her favorite thing to do right now is slap her daddy in the face...hehehe.  It's not funny; but it is!  lol.  

With all the up's and down's and not so good surprises this past year; I still wouldn't trade it for anything.  This is my family and my life; and I love little Macy girl so much just as she is (and her daddy too)!  

My birthday wish for Macy this year is for everyone in her life to focus on Macy as a little Macy girl that we all love; and not focus on her as the little girl with the blood disease.  Yes, Fanconi Anemia is always going to be part of her life.  But it is something that she has; it's not who she is.  

Happy 1st Birthday Macy girl!!! LOVE YOU!
(birthday pictures to follow next week!)

Thursday, September 8, 2011

Traverse City Trip and more!

Getting ready for bedtime in the camper

Macy in her 'hop n pop' at the camp site
Well we are home now after a nice little trip up to Traverse City!  We had a nice time camping at the state park, went to the beach, and had a nice dinner out.  One of the days was really cold and windy so we had to break out the winter hat and mittens for Macy.  She looked so cute (as always!).
Macy eating a veggie stick

Macy after biting off a piece of veggie stick...she is unsure if she wants to swallow it or spit it out

The Marina at Grand Traverse Bay

It got a little windy so Adam and Macy are hanging out in our little beach cabana

Family Photo in the wind

We have been pretty lucky the last few weeks in terms of nothing has really been going on (which is good for us).  Macy has had feeding therapy and that's about it.  She has seemed to plateau in her feeding though which worries me.  I have her feeding sessions around 15-20 min. a piece and don't want to go much longer than that.  I just can't seem to get her to take bigger bites.  She leans towards the spoon and takes the bite herself; yet at the same time will not let the spoon get ALL the way in her mouth...she does this thing where she blocks it with her tongue, and kinda keeps her tongue at the roof of her mouth instead of putting the spoon on her tongue.  Her therapist said we 
need to backpedal and start doing really small bites again to see if she will start letting the whole spoon in.  Another thing she started doing is as she drinks water out of a straws she spits it out at the same time, and thinks it's hilarious.  So we'll have to go back to the straw drinking beginners lessons with that too.  Little stinker!  :)
Macy tasting a green and purple frosted cupcake
Macy with her hat and mittens on enjoying the chilly outdoors

Macy and daddy...she lost a mitten!

Macy fell asleep on my lap around the camp fire after a long day!

Macy's new thumb is looking pretty good.  Almost all of the stitches have dissolved except the 2 that need to be taken out in a couple weeks.  I can feel there is some hard scar tissue around the meat part of the thumb on her hand.  It seems to prevent her from fulling moving her thumb at the joint that connects the metacarpal to the wrist (mp joint). Her Dr. said he may have to go in in the future and remove some scar tissue.  I am hoping it is just still healing because it has really only been about 5 weeks since her surgery.

All of Macy's surgeries, etc. the last few months have really put her behind in the mobility department.  She is still mostly a roller.  She can creep/crawl but only does it if she really wants something.  And she can pull herself up into a standing position if she hangs onto my fingers; but has never tried to do it on a piece of furniture or anything.  She seems to be eons away from walking.  She will be getting surgery on her other hand in a month or two which will continue to put her behind.  Hopefully once we get these hand surgeries and full arms casts out of the way we can focus on getting her back on track by her 18 month milestone mark.

9 more days until Macy's birthday!  Can't wait!  The fall season is our favorite time of year so having Macy's birthday in September just makes it that much better!  When we got home yesterday we got out all of our fall harvest decorations and I decorated the house!  Adam wanted to decorate for Halloween already; but I told him he has to wait until October 1st.  I did find my costume online the other day for this year already....I am excited to get it.  It's a good one! (yes, we are dorks----we love halloween!).
Macy playing in her little baby travel bed....she still fits! 

Our precious little girl still sleeping in the morning!
Well that's our week in a nutshell.  One nice thing to look forward to is we booked a Disney World vacation for February.  It should be a good time, and I think Macy will have fun.  We figure it is our last chance to go before we get busy again.  We are planning on doing In Vitro with PGD and HLA matching as soon as we get the results of Macy's gene sequencing.  More on that though another time.

take care,