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,

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