We got away for the weekend.  This is the first time we have been able to “get away” since Lydia was diagnosed.  We went up to my grandmother’slake house.  It was beautiful.  David took out boys out paddling several times.  Lydia, my mother and I stayed up at the house.  We got to visit with some family, eat some delicious food, and relax.  I don’t think I have been this relaxed in a long time. 

Lydia has really enjoyed herself, especially today.  She and brothers giggled a lot.  She goes through periods where she is not very expressive (I think she doesn’t feel great on those days).  Today was a good day.  Before we left on “vacation”, she slept in her own bed the whole night,  three days in a row!  The first two nights, I got up to give her a pacifier, feed her, give her a medication, or whatever I thought she needed, whenever she made a peep.  The third night, she didn’t make peep, and I slept six hours straight!!!  I feel like a new woman. 

Lydia still has a skin rash even though she has stopped the Reglan.  She is a bit gaggier, because we stopped the Reglan too.  Still, it is far better than it was just a couple of weeks ago.

This past Wednesday, after clinic, I realized that the back of both of her ears were seeping through the skin.  I have been treating it topically for a bacterial and fungal infection.  I got convinced, after catching that, that her syringes are infecting her.  I wash them thoroughly, but this summer something grew in one of her meds and I was convinced that it was my doing, rather than a problem with the pharmacy.  Anyway, I have decided to not reuse any of her syringes.  At least not while she has such a low immune system.  I am hoping this will at least help decrease her chance of infection.

Also, I forgot to update you about her central line.  It still isn’t working to draw blood labs, even after TPA.  It does work for giving infusions.  She no longer needs Red blood or platelets.  She still needs IVIG infusions about once a month.  So we decided to keep the central line to give her infusions.  This will be easier for her to use than a regular IV. 

Lydia had to go back to clinic on Friday to get her IVIG infusion.  She did so well through it.  But while I was there I met two new patients and moms.  Both children did not have definitive diagnosis yet.  One was a 4 year old girl, “A”, with a bruising problem (platelets).  And the other was a 2 month old boy, “R”, who couldn’t make blood and had an enlarged spleen.  Baby R was so tiny and precious.  It sounds like leukemia of some sort to me, but thankfully I don’t have to diagnose him on my skewed experience.  Please pray, pray, pray for these children along with all of the children in clinic 8 and in the hospital at 4 tower and at the SCCA.  God is in control and loves these precious children.  These kids need your blood too.  Red blood and especially platelets are especially hard to come by.  Children often need CMV negative blood products.  Please be a blessing to these kids.  Blood products are a free gift to give.  It won’t pinch your wallet, only your arm.  Thank you all for being such a blessing to Lydia.  She ALWAYS had blood waiting on her when she needed it…and she is ALIVE today.

I want to congratulate Megan Brittain who will receive her FINAL chemotherapy on Monday!  I am so excited for her AND her dad.  They have been down a LONG road.  I am so glad to see this chapter ending and starting NEW.  Thank you God for your mercy.

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