Saturday, September 13, 2014

Starting again....

So here we go again. During our adoption process I was fairly faithful to blog, partly because I wanted to document all the Lord did during that long season:) and also because so many friends and family were following along and in the trenches with us. While in Uganda I moved to using a private facebook page in order to keep things, well, more private. The process in country can be a bit sticky at times and it is wise to not have your info pasted all over the internet.

During our three year journey to Suubi I spent hours and hours and hours reading blogs of families that adopted. I was so thankful they let us in to their lives to learn and rejoice with them and at times grieve with them.  I learned SO much that was invaluable in preparing me for the hard and the uncertainty.  I learned things like what to expect at the guest house in Uganda, but then also important information about culture and how children that have been in institutional care process change.

When we learned that Suubi was blind and quite obviously had developmental delays, to what extent we were uncertain....this momma once again searched for every blog I could find that might give me some insight into what our future might look like. I just wanted to feel as informed as possible and to see some of what other families experienced. While nothing can truly prepare you for your own journey, these blogs really did help me and actually connecting with some of these families online and even later in person has been a tremendous blessing!

Once we arrived home we faced a whole new world. We didn't truly expect a diagnosis of cerebral palsy for our sweet girl but after loving on her for a few weeks it was not surprising. I had not prepared for that or researched it! All of a sudden I wanted to find a blog written by a family with an internationally adopted with with cp and vision impairment. I still haven't found that:)

We have to walk out our own journey and in His own amazing way the loving Creator of me and our girl, has placed people in our path at each juncture to help us navigate wisely. However, I can't shake the feeling that sharing some of these adventures and challenges might someday help another momma find her way a bit more easily.

So here we go....

I can't promise I will be faithful to blog often, although I'll try! I'm going to share the good, the bad and the ugly. I realize that I needed a clear picture of what was ahead. I do promise though that I will always shout...
because that is the Truth. There is always hope...that is what I hang onto...what keeps me going....what allows me to face each day.  He fills us with hope for our kids, for our future, for their future and the ability to trust His plan for our family.

The mountain that is currently ahead of us is surgery. We knew Suubi would need hip surgery but we were on a waiting list and we thought we might get a date in the late spring. We recently found out that Suubi will be having reconstructive surgery on both hips at Greenville Shriners Hospital on October 6th. We have never faced surgery with our kids before. This is a new kind of cliff jump for me.

We will have to go for preop for two days the week before then have the weekend at home and then Mark and I will take her to Greenville for at least Mon-Thur. She will most likely have a spica cast, which will most likely look like some variation of this, for anywhere from 4-12 weeks.

We are definitely hoping and praying that it will be more like 6-8 weeks. Life will be hard interesting between now and the New Year:) Thankfully Suubi is on the medically complex child waiver and Medicaid enables us to have an aid for her. They will increase the hours we have the aid during this time and we are in the midst of lining up trustworthy caregivers to help with her care while I am at work in the mornings and then to help some in the afternoons when I need to run the boys here and there.

Our wonderful family in Florence will take good care of the boys while we are with Suubi in Greenville and then we will need to rely more on them and on our amazing friends that make up Team Suubi while she recovers.  There are lots of details to work out like renting a different wheelchair during this time and possibly figuring out adaptations to her bed.  We need to figure out homebound for her while she is out of school and adjusting therapies, as long as seeking out what kind of in-home services she can receive while she is recovering.

We are talking to a nutritionist at the Health Department to see about getting help with high calorie pediasure during this time since her appetite may decrease and after working so hard to gain some weight we don't want her to drop a lot of weight.  There are just lots of things I have never thought of, but I am learning a lot! 

So a new adventure, a new mountain to climb. However, we have had so much joy over the last three weeks watching Suubi discover that she can roll and actually make herself go places. She doesn't like sitting still for long anymore because she realizes she can move! Without this surgery she most likely would not be able to bear her own weight as she grows. So for her to ever be able to walk she has to have this surgery and the sooner the better. We are so thankful that we have such a strong team of therapists that adore our girl and are willing to walk with us every step of the way.

Thanks for your prayers and if any momma new to this world stumbles upon this blog and wants to reach out and ask a question, please contact me!

Or is any momma that has already been through this has some sage advice, then please holler!!!

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