Some Changes

Naomi, Cait and I spent the past two days moving out of the RMH. We are now in a hotel efficiency and i am already finding life much more simple.  Sleeping here was great!  No distractions or being woken in the middle of the night.  We went to bed when wanted.  The room was dark and restful.  I am very happy we made the move.  The move was so simple thanks to the help of some friends.  I ended up connecting with a friend of Aaron’s who happens to be in the same town as me and he and his wife have been a huge help to me.  It is true that life is what you make it.  Good friends come out of the woodwork during difficult times.  We are blessed to have a network of support that reaches across state and city lines. 

Friday at the lab was pretty uneventful. With only two children, I was able to manage just fine and there were no episodes of screaming.  Cait was quite pleasant, not having Niamh to argue with and all!

Naomi’s WBCs are now up at 2000 (2.0) and her ANC at 1100 (1.1).  We are very excited to see it climb even higher.  At some point I remember being told that ANC of 1500 is the magic number for her to be able to go HOME.  She continues to have no signs of GVHD which is what we expected with a sibling donor.

Naomi and I continue to butt heads throughout the day in matters of meals and medicines.  She sure is feisty, but I think she has met her match with me.  I did tell her (sarcastically) on Friday to just put the lid back on her medicines when she is finished looking at them.  She glared at me.  I said that it was up to her if she wants to take the meds and get home or live in a hotel for the rest of her life.  I reminded her that her Dad, cats, bed, and siblings are waiting for her at home.  We have seen this week that an increase in cyclosporine gave her a boost in her white blood cells.  SO, by extension of that thought, taking her meds DOES make her get better.  I reminded her of this and then walked away to wash dishes.  With a milkshake and a firm lecture, the meds were taken within 5 minutes.  This was much preferred to the 47 minutes it took her the previous evening!

As for meals, I am hoping they improve here at the hotel.  Naomi loved the yard at the RMH but thought staying in the house itself was “creepy.”  Now that I can really put some love into mealtimes, I am anxious to see if her eating improves.  This is much more private and I think she will feel better about eating here since there is no one watching her eat.  

I also have secured two women who volunteer at the RMH and provide Nanny/child care assistance on the side.  While staying at the RMH, they could only help me while I was at the house and not when they were off-duty.  There was something about them not being allowed to work with me privately due to a contract they signed.  With Naomi not being allowed to go into public stores and such, the rule that they could only play with the children while I was there did not allow me to do necessary errands.  Now that I am no longer a guest there, I can hire them privately.  I took one of them along with me to the clinic on Friday to help with Cait and then to be with Naomi while I did errands  I have never hired a mommy’s helper before in my 13 years of parenting.  I need to find some willing teenagers to do this a day or two each week, at least!  

 

 

 

 

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