Wednesday, June 12, 2013

Appointments that need prayer.

I am just writing to let you know that we could really use some prayer over the next 48 hours and again next week.  Tomorrow (6/13), we will be taking Mercy to CHOP in Philadelphia for her first of many doctor visits.  We will be meeting with a small team of doctors tomorrow so that she can be checked over for overall health, to begin assessing her development and current delays and discuss what the next steps of action will be to help her progress forward.  Mercy has already had blood drawn five times in the past two weeks and she will have more blood drawn tomorrow.  Most of the blood work tomorrow is more extensive and our local lab could not do the testing so we have to have it all done in Philly.  Most of it is genetic type testing specifically related to her Albinism.  There are a few types of Albinism and there are also a three "syndromes" that are specific to Albinism.  The albinism expert at CHOP is seeking to find which type of Albinism Mercy has, as well as rule in or out any of the three syndromes.

Many of you may know that CHOP has had concerns dating back to her Chinese Medical blood testing in regards to two of the three associated syndromes.  One is Hermansky-Pudlak Syndrome (HPS) and the other is Chediak-Higashi Syndrome.  Please join us in praying that they are able to rule out both.   While we are fairly confident that they will rule out CHS, we have a couple concerns about HPS.  But we are not experts and we are thankful for CHOP who can determine everything for us.

Then on Friday we have our first post-adoption home visit.  The social worker will be coming to our house at 9:30 am.  In my heart I know this is probably not as big a deal as my head tells me it is, but I'm very anxious about it.  Mostly because tensions are high here this week as the kids and I adjust to being together all day every day now that summer vacation is in full swing.  The kids are also still adjusting to having a new sister and there seems to be some sibling competition going on for her love and attention.  Add to this that Mercy has had a few bad nights again so lack of sleep and frustration with her are adding tension as well.  Being gone all day tomorrow at CHOP when I need to be home cleaning and making sure paperwork and such is ready is not helping.  And finally, Scott is leaving for California on Sunday, which is why we are cramming this home visit in on Friday in the first place.  It was scheduled for next week, but thanks to an unexpected trip and a specific deadline that our post adoption visit needs to meet our appointment is now Friday.

That leads to the last request, and that is for sanity next week as Scott is away.  Please pray that Mercy sleeps!!!  Pray even more that she doesn't react to Scott being away, that it doesn't trigger any feelings of being abandoned...again.  She has really taken to Scott in the past week and goes to him more willingly, so this could not be coming at a worse time.  Pray that it doesn't set back any attachment and bonding progress that Scott has been making with her.  Also, please pray that my other kids have cooperative and helpful attitudes, especially at night when energy and patience are low.  Thanks for listening!!!

9 comments:

  1. Love you guys! Praying! BREATHE!! Wow - this takes me back a bit. Clefting is also related to syndromes, and I remember the angst waiting to see... Don't forget He already has tomorrow - and next week. He has the timing as well. This journey you are on - He only asks you to walk it - not solve it. At the same time - this is a lot to handle all at once. Will be praying for you tomorrow and throughout next week. Remember - NEVER ONCE did we EVER walk alone... He is faithful!

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  2. Definitely praying! If there is anything that I can do to help out please let me know.

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  3. So much going on! Here, too. Rough day at CHOP for us this week. Still processing and trying to pray it thru. Will pray for you guys tomorrow, while we try to have a normal day..... Hugs!!!

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  4. Will pray for you and that you have peace, calm nerves, and that Mercy is healthy and is doing well. God is in control and we just have to trust Him!!! This is what my family and I are doing right now... We are stalled on our adoption on day 85 of our LOA wait!!! It does seem like so many things happen all at once and this is where we are at right now. All we can do is trust and rely on God through it all but boy does it take a lot to do that at times. So wish we knew Gods plan but he does so this should give us peace when we need it. Mercy And you are so blessed to have each other and God will be there with you every step if the way. I have enjoyed reading about your amazing family and just feel like no matter what your road in the future looks like.. You have proven you are strong, capable and a wonderful Mom. You survived traveling to the other side of the world and back so in my opinion, you can accomplish anything, just continue to seek his face and trust...in the end he will carry us all through!!! God Bless! Lisa and Family

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    1. Lisa,

      Our LOA wait was 83 days. I'll be praying yours comes soon. I know how difficult that long wait can be on the heart and mind.

      Thanks for continuing to follow along. Thanks for praying and thanks for this encouraging comment!!! Jane

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    2. Our LOA was supposed to be expidited but don't know what happened, they kept saying next week, yet next week has never come so we have had to truly trust God through things!!! This is tough because we just want our girl home... She will be 3 in September and we had hoped she would be home before her birthday and this summer. We homeschool our 2 older boys that will be 17 and 15 in October and were excited that they would be able to have uninterrupted bonding time with her over the break so it's going to be disappointing if the travel gets pushed off to fall. We are 13 months into the process but I waited the last 12 years ago for my Hubby to want to adopt, so I keep thinking this wait is easy compared to that. But still I have to keep my eyes firmly on God as He is the master planner and works things out.
      My hubby was told he would never have bio kids and we defied those odds after being prayed over, easily, so God has shown me he is faithful and can truly do miracles as he has done throughout my life. I have been with my hubby since I was 16 years old and I will be 41 in July...26 years and I always tell my Dh that it amazes me that we still plan to have more kids. Our boys are super easy and just mild, loving, extremely well behaved kids and very gentle...I know they are going to make great big brothers!!!! So if we choose to have more bio kids(we haven't said no yet), or adopt another time or two... Or both...we hope to love on more kids for longer. Definitely not ready to be an empty nester yet! I love reading your posts and seeing your walk with God and continuing trust in him!!! I really feel many people need to hear what you have to say and I love the fact you are honest about who you are and what you are going through! I know God is always in control and that he will always be with us and with our families. I know God has a huge plan for Mercy in your family! I will continue to pray for Mercy and that you receive great news about her and thank you for praying for us, it means a lot!!! Please keep us all updated on precious Mercy, you all deserve a wonderful life!!!!!


      Lisa and Family



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  5. We will be praying too. Can you send the albinism expert's name to me? We haven't had Phoebe's genetics testing done anywhere and we are somewhat close enough to go to CHOP if needed.
    ronvic7@yahoo.com

    Vickie

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    1. Vickie,

      I sent you an email!!! When I have time I can give you more info so you can check with your insurance company ahead of time. Some won't cover genetics.

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