Wednesday, February 4, 2015

Fundraising and a Kinsley Update



The contracts are almost finished! We've completed our portion of them and have mailed off the last of the forms needed by our clinic in order for them to receive the embryos. All that's left is to wait for the contracts to be signed by the genetic parents and then for the shipment of the embryos to take place! This is fast becoming a very real thing and my excitement is very high (my patience isn't as high, but I'm working on it.) We should have our embryos this month! Yea!!!

I want to publicly thank each of the people who ordered from Thirty-One for our first fundraiser! It was a lot of fun, and I hope each of you will enjoy your products very much. Perhaps each time you use one you'll think of our little snowflake babies and remember how much we appreciate you helping us bring them home. In case you're wondering, we raised about $500 through our first fundraiser! Yea! Also, if anyone is interested in hosting their own party while raising funds for us too, please let me know and I can get your hooked up with the kind Anne Little who will donate her commission to us (again!).

Now, several of you read my last post and expressed your desire to help us financially, but didn't want or need any bags. Well, we have launched our next fundraising campaign. It includes an opportunity to buy a t-shirt, but also allows for a donation to be made. One small caveat is that you do have to order a shirt in order to make a donation (though no donations are required!) Please feel free to do whatever you desire. We super appreciate any help offered, but realize that money isn't the only way to help. Prayers are greatly appreciated too!

The t-shirts were designed by Luke based on some ideas I gave him. They say, "Fearfully and Wonderfully Made" and have a snowflake for the "o" in "wonderfully". It's a simple reminder that, first of all, each of us is made by our Creator, but especially a reminder that our sweet snowflake embryos are already created beings with life as well. While they were created with the genetic material of others and the help of doctors, all beings are created by the Author of Life in His image. I hope, if you choose to buy a shirt, that you will wear it with pride and can use it to share the wonder of life created by God. If you’re interested in a t-shirt or in making a donation please go to this link.

Additionally, a sweet friend, Amanda Hendrix wants to help us out too! Amanda has a booth at a flea market in Lincoln, AR. She has decided to donate all of her profits from the month of February from her sales at her booth to our adoption fund. She has vintage and homemade items in her booth. If you’re local and like flea market shopping, go check out her booth, Cheery Pie, at Back in the Day in Lincoln. There are several awesome flea markets in Prairie Grove you could stop at on the way home and make a fun day of shopping while also helping us out! Happy shopping!

Now, I feel that I must say, I HATE asking people for money. It’s just a personality trait of mine. I’m a people pleaser and asking people for money isn’t exactly something that generates warm, fuzzy feelings. However, as we’ve shared our news with others, many of you have asked how you can help and since we need help, I’m asking for it. PLEASE do not feel obligated to donate, buy something or try to raise money for us on your own. We’re so thankful just to have encouragement and support through prayer and goodwill. So, do what works for you. We appreciate each of you very much!

Now, time for some Kinsley news. Our sweet girl has seemed to enjoy her first month of preschool. Most days she has a good time and her teachers say she’s working hard – sometimes at what they want her to do and others at what she wants to do instead. ;) Having said I’d give preschool a one month trial run, it’s been quite difficult to decide what really is best. I’ve gone back and forth so many times and prayed about it a lot. Ultimately, I don’t think there is a right or wrong answer about preschool. I think she can get a lot of benefit from school and she could get a lot of benefit from being home. I just can’t quite decide what I think we should choose. But one thing I think is very true is that Kinsley is a special little girl in so many ways. Because she is nonverbal and her communication skills are limited, it can take quite a bit of time for new people working with her to figure out the best ways to help her. Additionally, she often takes many, many repetitions of new things in order to learn or understand them. Therefore, I think we need to give preschool more time before making a final decision. So that’s what we’re going to do. Please continue to pray for Kinsley and Luke and I as we try to figure it all out.

Kinsley has had some appointments lately. She had a check-up with her neurologist that was good, but mostly uneventful. We have increased her latest seizure medication again. She’s now taking three different ones. Her seizures still happen on a weekly basis, but remain mostly mild and non-harming. Please continue to pray for the best in regards to her seizures. I’d love for them to be gone completely, but that seems to be extremely unlikely to occur. So, we’re thankful she’s doing as well as she is with them and pray that will continue.

She also had an eye checkup last week. Her crossing was slightly reduced from last time which is a praise! We’d like that to continue to decrease if possible. She still has to wear her eye patch six days a week for six hours a day. It’s quite a bit of time actually, but she does it like a champ. One small issue we’ve had is that her sensitive skin has begun to react to her patches sometimes and recently it even pulled her skin off in one small area. Poor girly! I felt so bad, but she acted like it was no biggie. She’s such a tough girl. The doctor gave her a two week break from patching to help her skin heal and gave me some ideas of how to stop the reactions.

Please continue to keep Kinsley’s vision in your prayers. I’m not sure I ever posted about the results of Kinsley’s sedated ERG last October. At first I didn’t want to talk about it because it made me sad, but then I just forgot to post. But we found out that she does have some retinal degeneration. Specifically the ERG showed signs of early retinal dystrophy. It showed that all of her rods and cones are affected at all times. This means that her vision is always mildly affected – in the dark, color vision, at a distance, etc. Unfortunately there is absolutely nothing that can be done about it. We were told that it could get worse as she ages, but could remain the same. We will have to have yearly ERGs done to track the progress. This is a typical issue with people with MEB, so no surprise, but still not happy. If it does worsen, she could eventually be legally blind. I don’t have to tell you how much we’d hate that. This poor girl already has so many things she has to battle. Should she have to battle blindness too? It really breaks my heart to think about it, so I don't since I can't do anything about it. But the positive is that we believe she’s always had this since she was born. We have no reason to think it’s worsened as she’s grown older because her visual ability has never changed for the worse. Will you please keep this issue in your permanent prayers? We want her vision to stay as strong as it can and we know and believe God can make that happen.

On a happier note, Kinsley continues to work hard and progress at therapy. She is still working on walking and I’ve come to realize it’s going to be an even longer process than I thought to get her to walk completely independently, but that is ok. Each month that passes, she gets a tiny bit better. She can use her walker for over 100 feet independently (as long as there aren’t too many turns or obstacles). But, she’s also greatly improved in her ability to turn and control where she goes in it. It’s a work in progress, but she’s slowly improving. Completely on her own, she is still able to take 5-6 steps at a time each day, but her balance continues to be a problem. It’s something that will get better. She just has to practice a million times and eventually her body and brain will develop muscle memory. It’s slow, but it’ll happen.

Her fine motor skills are improving as well! She's able to put shapes in a shape sorter with minimal help on most occasions and no help at others. She's developed a pincer grasp which is huge! But she's still only using it in a specific context and hasn't fully transferred the skill to eating yet. She can do it while eating with a little cuing, but I know she'll do it independently soon. :)

Language development continues to be very slow as well, but she is making progress. Her receptive language has developed far beyond where she was last year at this time. Then she understood a handful of words or phrases, but now she understands over 30! She is still babbling and makes sounds that sound like words like mama, dada, up and yeah. She doesn’t use them consistently nor necessarily for meaning, but I know she hears them enough that she wants to say them too. She is still using her three main signs, but we’ve been working on bye-bye for forever and we FINALLY see progress! Instead of signing eat (which is what she was doing for a long time) when we tell her to say bye she reaches out and touches your hand instead. Not exactly right, but much closer. She’s also progressing in her use of PECS (Picture Exchange Card System). She is now able to consistently request the toy she wants by choosing the correct picture when given two picture options (like a picture of a car toy and piggy bank toy). Our goal and belief is that with this ability we will move into requesting more and more things using pictures of items. Eventually the goal will be to move to an electronic device to help her speak. Her speech language pathologist told me a few weeks ago that with as well as Kinsley is doing at this age with her PECS that she believes she will be able to use a device eventually. We would love to be able to hear Kinsley “talking” some day even if it’s with the help of an electronic voice. Please pray for this as well!

We appreciate and love all of you who support and pray for our family both for Kinsley and for our adoption. Our family has some exciting things going on right now and we are so blessed to have you all on the journey with us! Now, here are some recent pictures of our cutie pie Kinsley!

Working hard during OT

Having fun during a Granny D visit



Sweet Kinsley Girl



5 comments:

  1. Thanks for the update, Caroline. Kinsley is precious! I'll be praying for your specific requests. God hears us!!

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  2. She is absolutely adorable. So glad to read of her progress and continued prayers will go up for your family!

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    1. Thank you! The prayers help so much!

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  3. I enjoyed your update. You have a beautiful heart to love and care so well for your family!

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