It’s the little things in life that are so exciting.  Being “home” from the hospital is totally great for more reasons than I can express to you.  The number one thing being that the family can be together.  The other huge reason to celebrate is that Miss Lydia doesn’t have to be hooked up to a pump.  At the hospital, she is typically hooked up to a pump most of the time with only a few breaks.  This time, she got larger breaks from the pump, because she was only there to receive antibiotics, just in case one of her cultures showed an infection.  Thankfully she was infection free and only had to stay the 48 hours necessary.  

Since being home, we have been able to all go to the park to fly kites.  The wind in Seattle is so nice, that it almost always is perfect for kite flying.  The kids really enjoy it too.  Even Lydia is able to grasp the smaller kite’s handle and participate in the fun.  Today she napped through the fun, but got fresh air, none the less.

Friday, she goes in for her day 80 work up.  This is a VERY important day in the scheme of things.  She will get another bone marrow aspiration (looking to see if her donor marrow is still 100% and looking again for any lurking leukemia cells.)  Once again, I feel good about these tests and the results.  Please continue to pray for NO LEUKEMIA and for continued peace.

I don’t know yet if she will have any GVHD (graft verses host disease) biopsies or not.  She is tapering from her steroids and we don’t yet know if she still has any problems on her skin and in her tummy.  Her skin still looks like perfect baby skin.  As she is tapering from the steroids, her appetite has gotten worse.  This was to be expected.  The steroids make her so hungry.  Also, she has spit up a couple of times.  This could be just normal baby actions or it could be the GVHD.  I really want her new bone marrow to accept her body as it’s own and not hurt her.  If the GVHD flares up, she will be on steroids long term.  Yucky.

I have been feeling pretty spiritually dry.  This week in clinic, they were talking to us about going home, home next month.  I started to cry out of fear.  I really want to go home, but the idea of taking care of Lydi and my boys all by myself freaked me out.  It will be hard enough being at home without the comfort of the hospital being one block away.  I have complete confidence in the professionals that would care for my precious baby at home, but I feel so overwhelmed.  I keep reminding myself that God has held my hand this far, He is not about to let go.  

I was speaking to a mom the other day about her sweet baby getting ready for transplant.  She was saying how she feels so unprepared…emotionally, spiritually, and physically.  Me too!  I don’t feel like I can pray right, read my Bible enough, ect.  I am so thankful for God’s grace and for Christ to intercede for me.  I trust that He cares for Lydia and will defend her to the end.  One day she will die and be with Him, so will all of us, but even while she is on earth, she is God’s and worth defending.

OK, it is really late, and you know I go on and on when it is late.  Thank you for your continued prayers.  By the way she is still breathing extremely fast.  She had a CT Scan of her lungs, which looked great, so no worries right now, but I really want her to SLOW that breathing down.

Thanks again,

Liz

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