Monday, July 25, 2011

Summer-winter and a matter of time

I just looked at the calendar for August, and for the first time in a long time Macy doesn't have too many appointments besides feeding therapy.  Most of her follow up's are in Sept. and Oct. right now so it will be nice to get some time off from the hospitals and Dr. office's after her hand surgery this Friday.  I am hoping we will not need to spend the night this time, because hospitals are soooo uncomfortable to sleep in at night.  And if you do manage to fall asleep you get woke up by machines going off every 2 minutes.  And every time Macy just falls asleep in comes the nurse to take her vitals.  I never understood why some hospitals are determined to take a rectal temperature at night while she is sleeping????  I love the hospitals that have the kind of thermometer that rolls over the forehead to the temple.  I wish they all had that kind.

Well it seems like Macy yo-yo's back and forth between doing okay at night and not.  Some nights she does great and doesn't wake up and cry during the feeds, and other nights it seems like she is crying half the night and I end up getting up at 3 or 4am and just turning off the machine because it's not worth it.  The good news is she is doing better and better eating her solids by mouth during the day.  I have her up to 3/4 of a container of a stage 1 fruit/veggie mix per feeding session.  A couple times last week she even opened her mouth happily to take bite after bite and ate almost like a normal kid.  It was amazing.  I am not sure how much a kid her age should be eating, but I am hoping if she continues to do well, and we keep increasing the volume; then hopefully in the next 6 months we can get her G tube out!  :)  She loves drinking water so we just have to get the amount of solids she eats up to par and we should be good.  She is also gaining decent weight.  We have an infant scale at home and I weighed her this morning and she weighed 16lbs. That is pretty good because she weighed 15lb. 2oz. 2 weeks ago.
Our smiley girl!

Macy playing on her laptop as she recovers from her G tube surgery!

Macy in her new bean bag that her Grandma Stewart got her! (look at those chubby thighs!)

Macy getting a tubby!

We got a call from a Transplant Coordinator that was assigned to us from our insurance company the other day.  They thought that Macy's appt. in Minnesota this October was for her to get her transplant.  Then we received a letter in the mail from our insurance saying it has been approved for her to get a consult for her transplant, etc.  I had to explain to them that her appt. is not for a transplant; she is not to that point yet but needs to be seen by them because they are the experts and can create a plan for our local hematologist/oncologist to work on with them, etc.  They approved that visit so atleast we are on the same page about that.  At first I was all excited because I thought the letter was approving our appeal; but we still have not heard anything about that.  According to our insurance website; they have 30 days to respond to our appeal.....that 30 days is up this Wednesday and I am not sure why they are waiting so long.  I am sure they will try to drag it out as much as they can.

We have a lot of fun stuff coming up yet this summer!  Camping, baby showers, weddings, anniversary parties, and Macy's birthday!  By the time you look at what is going on every weekend this summer; summer is over and we are into the end of October already.  Then we are going into the holidays and before we know it it is smack dab in the middle of winter already.  Time.  Such a powerful word.  I never thought about it as much, or in the same way as I do now.  Time.....such a small word with an important thing.  Speaking of; I have a few things I need to do before Macy wakes up from her nap.

take care,

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