The Best Laid Plans

The heart of man plans his way, but the Lord establishes his steps. -Proverbs 16:19

We humans plan and plan, but God will continually step and in and remind us that he's in charge. Which is good. His plans are the plans I actually do want to follow, it's just that sometimes I forget that and I make my own plans. That's when things get messed up.

You're probably wondering what I'm talking about right now. Let me explain.

Our embryos arrived at our clinic today safe and sound!!! Praise the Lord! We've been waiting for this day for so long and I'm so excited that it is finally here!

So what's the problem? See, I had set things up so that when our embryos arrived we'd be ready to move right into our first Frozen Embryo Transfer (FET) cycle and in fact had already begun the checklist of things to do during a cycle. I already started taking some of the medication (at this point just a normal birth control pill to add needed hormones to my body), we met with our doctor, Luke and I each had to take antibiotics to be sure certain diseases were not present in our bodies (an annoying FDA regulation) and we each had to have blood draws to check for certain things including, for me, my thyroid hormone levels. This is a common test done when pregnancies are being planned.

This is where the problem comes in. It turns out I have what's known as Hashimoto's thyroiditis which is the most common form of hypothyroidism. Basically, my doctor explained it by saying I contracted a virus which to my body looked a lot like the hormone my thyroid produces and in the process of attacking the virus it also is attacking my thyroid. My thyroid, therefore, is not able to produce enough of the hormone it is supposed to produce. If you want a better description, click here.

The good news is it is very treatable and I will begin taking medication for it tomorrow. The down side is we have to put off doing our first embryo transfer. If we tried to transfer the baby now, I would be at an increased risk of miscarrying, which of course we do not want at all. The doctor said it often takes a few weeks to a few months to get the thyroid healed and back to proper working order, so we're kind of at a wait and see point for when we can try another cycle. In four weeks I will be tested again to see how my levels are looking, if they are improving we'll be able to move forward then. If not, then I'll continue the medication, wait another four weeks and see how things look.

This is what I mean about humans and making plans. See, I'd built it all up in my mind already, imagining our first transfer taking place in early May, praying and believing the embryo would implant and we'd be having our next child by early 2016. But, like I said, God knows what's best. I just have to stop being all human and making my own plans and expectations.

If y'all would, please pray for this to pass soon, but also thank the Lord for helping us to find out this important information. It would have been horrible to not know, move forward and put our baby at risk. In the meantime, we'll keep having fun with our sweet Kinsley girl and waiting for God's timing to have our family grow.

The Waiting Game and A Fundraising Update

Well, I'm sure some of you may be wondering what's been happening with our embryos. Unfortunately, I don't have much to report. We're still waiting for them. I'll save you from a long story by just telling you that the paperwork which would have released the embryos last month was lost. We don't know who lost it, either the postal service or the embryo storage facility. Therefore the paperwork has to be redone and we are waiting for that to happen so we can have our embryos here by the end of this month.

Sadness, frustration and impatience. Those are all of my initial reactions to this circumstance.

I have never been a very patient person. I do not like traveling to places (I enjoy when we arrive, but not the travel time). I want to arrive places quickly. I find myself impatient with other drivers who do not seem to care as much as I do about arriving quickly. At the grocery store, I always try to find the shortest line to checkout in to avoid waiting, even going so far as to change lines if it seems quicker (and then feeling incredibly frustrated as that inevitably turns out to be a bad move). It always feels like waiting is a waste of my time.

However, I've learned over time (or I should say I'm still learning) that patience is not really about not minding a slow pace, but rather it's more of a help for us to lean on God when we have no control over a situation. I can't force people to drive the speed limit or in the slow lane, nor can I force the paperwork for our adoption to finally go through. I have done everything I can to make this process happen, the rest is up to other human beings. Those humans don't have as much invested in this as I do, nor are they perfect. Mistakes happen.

I found the perfect quote to help me through this situation:

“The times we find ourselves having to wait on others may be the perfect opportunities to train ourselves to wait on the Lord.” ~ Joni Eareckson Tada

Instead of yelling in frustration, getting angry or crying, I'm learning to go to my Lord in prayer. And not to pray that He'll make that guy drive faster or to magically have our embryos here now, but rather pray that I will be patient and wait for His timing. I really have zero control over this situation, but I do have control over my emotions. When I pray over the situation and release the impatience to Him, I really do have a sense of calm and patience. I feel thankful that I don't have to be the one dealing with the impatience anymore. God takes the worry and puts His hand over the situation (Read Phil. 4:6-7). It's so much easier on me that way and I'm so thankful He gives us this avenue of prayer to give our worries and frustrations up to Him.

The embryos will arrive when they arrive and it will be in God's timing. We'll have this baby(ies) when the time is right. And that's ok. I can wait.

I do need to report on our fundraising efforts as well. We've raised so much money towards our probable $10,000-$15,000 adoption costs. So far, with our fundraisers and kind donations by so many friends and family, we have raised $5,788.39 towards our total cost! That is possibly more than half the amount we will spend. We are VERY blessed to have raised so much and we thank each of you that has contributed!

And we're not done yet. I had a very sweet friend offer to host another Thirty-One party which has now closed, but we're still waiting to hear the total amount from that party, so more will come in there.

Additionally, we have set up a website through Prue Charity where tax deductible donations can be made. It will only be open for a few days. If you have not contributed, but would like to, you can go to this link and make a tax deductible donation towards our adoption. We have a goal of $5,000 shown on the website, but over half of that has already been met with a portion of the money we've raised that I mentioned above. Prue Charity also offers a sweet deal to individuals who like to shop online, but also want to help people raise fund towards their causes. If you like to shop online at places like Walmart, Target, Gap, and so many more, check out this link to learn how you can shop and help us out at the same time! However, our fundraiser will only be open through March 31. I'm going to push it on Facebook over the weekend in a last ditch effort to raise more funds. Please pray for us to raise as much as we can. Thank you so much!

And, lastly, here are some Easter pictures of our sweet Kinsley girl to give you a smile!

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

Our Embryos are Coming Soon! Could you help us maybe?

As I posted last time, we have been matched with a family who would like to adopt their embryos to us! We are so excited and praising God for this. We are currently working on the legal contracts to transfer the embryos away from their genetic family to us. We are so thankful to this family (who has chosen to remain anonymous) for choosing us to be the family for their embryos. It is an honor. This phase should take 1-3 months (we are one month in, so hopefully we'll have them here by March!) Now, without giving away information we aren't supposed to, let me share the lowdown on our snowflakes with you.

We are adopting 14 embryos. 14. Yes, that is a large number. In fact we almost said no to the match when we first saw the number. However, we prayed about it a lot and asked for advice from other Snowflake families (others who've adopted embryos through Nightlight like we are). Basically, with embryo adoption there are, very sadly, many embryos who do not survive the process. We've been told that about half of embryos survive the thawing method and then only about one in three survives implantation. Now, obviously those numbers vary greatly amongst each case. We spoke with families who adopted between 10-20 embryos and only 2-4 survived the thaw (each resulting in at least one baby born). But, another family told us they adopted six embryos, thawed 5 of them and had four children born! So, there is no way to tell what will happen with the thawing/implanting process until we actually try it. And no matter what, our 14 sweet babies need someone to adopt them, so why shouldn't it be us? 

Our prayer is that all the embryos we thaw and implant will survive. We do not want any to be lost. With that in mind, we plan to only thaw one at a time (they are frozen in cohorts of one and two embryos). Prayerfully that first one will survive and he/she will be implanted alone. With our desire to have all survive, but also to remain sane, we are not hoping for multiples. So our decision (at least to start with) is to only implant one at a time. We don't think having twins or triplets at this point is something we want to have to handle. We know if God has other plans, the single implanted embryo could split into identical twins. In that case we'll make it and we'll be so blessed by each child, but we are not going to actively pursue that. Honestly, the odds of the implantation working are best when implanting three embryos. In that case, I'd be most likely to have one implant. However, two or all three could and can you imagine implanting three embryos and then hoping only one will survive?! Of course not. Each of these little lives are precious and we want each to live if possible. 

Which leads me back to our number 14.  Our hope is that we will only have to thaw one, implant it and have that result in our next child. Maybe a couple of years later we will try again with the next embryo. We will have to leave all that up to God's will though. If, however, there are embryos left after we feel our family is complete, then we will allow the rest of them to be adopted by another family. Although it will be strange for our children to have genetic siblings in multiple families around the nation, I'd much prefer that than for these sweet snowflake babies to die when thawed or in the womb. I hope that makes sense to you all.

It's so amazing to think about each of these 14 little lives that have already begun. I wonder now many are boys and how many are girls? Will they all have blond hair like their genetic siblings? Will they have blue eyes like their genetic siblings or green eyes like their genetic parents? What will they be like as toddlers? As teenagers? As grown-ups with jobs and families of their own? I am in awe of these 14 little lives we are being entrusted with and cannot wait to see what God's plans are for each of them. When I think about our embryos this is what always comes to mind from Psalm 139:

 ¹⁴ I praise you because I am fearfully and wonderfully made;
    your works are wonderful,
    I know that full well.
¹⁵ My frame was not hidden from you
    when I was made in the secret place,
    when I was woven together in the depths of the earth.
¹⁶ Your eyes saw my unformed body;
    all the days ordained for me were written in your book
    before one of them came to be.

Although these precious souls were not created in the womb of their mother, they are still fearfully and wonderfully made by our Heavenly Father. He knows each of them and knows what each of their days will be like. I'm so thankful to be the mother who gets to help some of these little lives continue to lengthen their days. Praise God for this amazing blessing!
 
Now, with all of that being said, there are many costs associated with any adoption and that is true of an embryo adoption too. Costs range from application fees, home study fees, legal contract fees, agency fees for storing records, embryo shipments, storage fees for frozen embryos, however many Frozen Embryo Transfer (FET) cycles we have to go through, medications, etc. Nightlight says that an embryo adoption can cost from $8000-$17,500. The wide range depends on the differences in home study costs, fertility clinic costs, etc. Also, I think they're only accounting for one FET cycle in their range, so that's not always how it always happens. And it does not include normal health insurance deductibles and costs associated with a pregnancy. Now, we have always been fully aware of the costs we would be meeting with this adoption and know it's a lot of money, but we have remained steadfast in our faith that God will sustain and provide for us. We have some money saved, but we also intend to do fundraising for our adoption. If you are at all interested in helping us fund raise, please continue reading below.

Starting TODAY we are doing a Thirty-One Adoption Fundraiser. If you are familiar with the company, they make and sell bags, storage containers, etc. A very kind adoptive mother, Anne Little, is a consultant for Thirty-One and she helps other adoptive families by donating her entire commission from a party to the adoptive family. And she's doing one for us! The fundraiser lasts from today through Monday, January 26th at noon EDT/11 am CST. If you are in need of a new bag, organizing tote, lunch thermal or anything like it please check out this link. You'll be able to order whatever you want and all the commission of the sale will go towards our adoption!

However, if bags aren't your thing, never fear, we will have other fundraisers/donation opportunities coming very soon including a t-shirt sale and an online donation site combined in one. As soon as this fundraiser is over we'll start the next one. I'll keep you posted. Thanks in advance to any of you who choose to help us monetarily! But, if all you can do is pray for us to raise the funds, please do! That will be a humongous help to us!

P.S. If you do want to order from Thirty-One, in January if a customer spends $35, he/she can choose to purchase a Zip-Top Utility Tote for just $10 (a $35 value) or an All about the Benjamins Wallet for just $20 (a $48 value).  ***HOW TO ENTER A SPECIAL: Enter at least $35 in products at regular price. Then enter the item number of the special followed by the letter “S”. It will show up in your cart at the special price. Again, here's the link to the fundraiser.

P.S.S. Like Thirty-One, but can't buy anything right now? Well, you can host a party for us and get free Thirty-One items and huge discounts while at the same time raising funds for our adoption! Anne will allow any of our friends to host a party as a fundraiser for us too! How amazing is that? If you are interested, PLEASE let me know. I'd love to hook you (and our adoption funds) up!

And in case you were wondering, here's a sweet, silly girl who's doing a good job at Preschool!

1st Day of Preschool!

Well, today was the big day. Luke and I just dropped Kinsley off for her first day of preschool. In my second to last post, I mentioned that we had her first IEP meeting coming up and we would be deciding whether or not she should attend a special needs preschool. Well, after visiting the school, talking with the teacher, a lot of prayer and some great help from Kinsley's (now former) developmental therapist, we made the decision to do a trial run of the preschool.

When Kinsley turned three years old a few weeks ago, she aged out of Early Intervention. Carol, our wonderful developmental therapist, is now no longer able to see Kinsley since she works for EI. We will miss seeing her every week so much, but as she has become a wonderful friend, we will still be seeing her as friends! Anyway, after EI, in Arkansas, children with special needs move on to the 3-5 program which is set up through the public school system. None of it is required, but if we wanted Kinsley to continue receiving developmental therapy, which we do, then this is how it's done. We had the option of meeting with another developmental therapist who works with kids aged 3-5 once a week or we could try the preschool. The preschool has a morning and afternoon class each lasting 3 hours a day Monday-Thursday. We decided the interaction with other children is something we wanted Kinsley to have more exposure to, so we enrolled her in the afternoon class. We are going to do a trial run for one month and see how things are going. If it seems to be overwhelming to her, unbeneficial or in any way wrong for her then we'll take her out and set up the one hour a week with a developmental therapist. Hopefully, though, she will enjoy it and it will help her development to continue to increase.

As I drove away from the preschool, I fought off tears. I have such mixed emotions about this. I hate to lose the 12 hours a week with her that I'm so used to having. Afternoons were our Mommy and Kinsley time where we would read, play and work on therapy skills together. Of course I also had household chores and errands to do during that time that she would tag along with me for. But, I've felt for a long time now that she needed more opportunities to be around other children. There are 5 or 6 other children in the afternoon class. Of course I don't know any of their diagnoses, but at a glance, each of them is higher functioning than Kinsley. Though it breaks my heart that she is so far behind her peers, I'm thankful she will have other kids showing her an example of what more appropriate play looks like. Additionally, they try to include typically developing children in the class to provide role models for the students which is very helpful as well.

I will miss our afternoons together, but we will still have every morning (where she still receives her PT, OT, and ST therapies which I attend with her) all day Friday, all weekend and all summer together. That's what I keep telling myself to remember that it will be alright.

Will you please pray with us that this will be a successful and beneficial change for Kinsley?

Here's a picture of her right before we drove to preschool. Of course I forgot to take pictures once we got her there! Ugh. Mother of the Year Award goes to me, right!? If I'm not too emotional to think, I'll try to take some when I pick her up.

First Day of Preschool!

Of course, I have to share some pictures from her birthday and Christmas. I can't believe she's three years old! Love this beautiful Kinsley girl. (P.S. Scroll past the pictures for some exciting news!)

Happy birthday, Kinsley!

She got a big girl bed as a combined birthday gift from all her grandparents and Mommy and Daddy! This is her first time checking it out.

The next morning we found her like this. :)

I think she likes it! And she has transitioned from the crib so well!

Kissing Chuck E. Cheese at her birthday party

Finding Santa presents in Alabama

Cousin Ellie, Daddy and Kinsley girl

Matching cousins by the tree (Dresses made by my amazing Aunt Jana!)

And, just in case you were wondering, we have been matched with a genetic family who is going to adopt out their embryos to us! More details to come in the next blog post, but we wanted you all to know and thank everyone for their prayers. We are super excited to be onto the contract phase. Within one-two months from now we should have our embryos at our clinic! Yea! Thank you, Lord!

Kinsley's Going to Be a Big Sister! (But it's not what you might think…)

Yes, that's right, folks. Kinsley's getting promoted. Hopefully this will happen within the next year. We would like to officially announce that Luke and I have decided to do an embryo adoption.

What's embyro adoption you might ask? Well, we will be adopting embryos (of an unknown quantity at this point) from a family who has gone through in vitro fertilization, have successfully given birth to children and now have embryos leftover which they do not wish to birth, but also do not want to destroy. They have therefore decided to give their frozen embryos to a family they choose through an adoption agency and forfeit any parental rights and allow their embryos to join a loving home who would like to have them.

Why did we choose adoption? Well, when we found out that we have a one in four chance of any children we have to be born with MEB like Kinsley, we discussed, prayed about and ultimately decided that we would not pursue anymore biological children. I understand that some people may not agree with our decision, but we feel this is right. We believe God blessed us immensely by giving us Kinsely. She is our pride and joy. However I would be lying if I didn't say that every day I wish she did not have to live with this horrible disease. When asked if I could change anything about Kinsley, I have to say that yes I would. I would take away this disease that makes her seize, impairs her vision, stunts her ability to learn, slows her physical progress, stops her ability to speak, and could possibly (but Lord-willing not) weaken her muscles to the point of even death some day. I hate to even say those words, but they are facts about MEB. Does this mean that I think Kinsley is anything less than perfect? Of course not. She is my hero. She works harder than anyone I know to overcome every setback set in front of her. I am so proud to be her mother and I would never, ever go back and not have this sweet girl.

That being said, with this knowledge, Luke and I do not feel that we could bring another biological child into this world knowing we could be subjecting him or her to MEB. It's just not something I would wish on anyone.

We always knew we wanted to adopt some day anyway. This just helped us move in that direction earlier than originally planned.

So, why choose embryo adoption? Well, when we first began thinking about adoption we had never heard of embryo adoption, but a friend of mine (and one of Kinsley's therapists) has worked in the adoption field and mentioned it to me. I was immediately intrigued and researched it quite a bit. With embryo adoption we will be able to implant the embryos into my body and I can carry the child(ren) to term and give birth to them! To say this was exciting to me is an understatement. I LOVED being pregnant and the thought of giving that up was hard for me to do. Also, nursing Kinsley remains one of my favorite life events ever. I am so excited to be able to do these with the children we will adopt as well.

Additionally, as very strong pro-life advocates, Luke and I feel very strongly that these little frozen embryos deserve and need a family. Their lives have begun, but they are literally frozen in time and need someone who is willing to continue their lives to adopt them. We feel very strongly that this is an important issue and one worthy of pursuing. Our hope and prayer is that one day there will no longer be a need for embryo adoption because all these little embryos will have received families and will have a chance at the life that has already been begun.

Embryo adoption is not actually seen legally in the same light as typical domestic or international adoptions, but there are adoption agencies who offer this form of adoption along with the typical types. Their hope is that eventually this will be viewed as a legal form of adoption and will have the same laws applied to it. Therefore they follow all the same guidelines as a domestic adoption and keep track of the paperwork just the same. Because of this we had to complete a home study just like all others adopting. This was just (finally*) completed this week and we have mailed it to our adoption agency. Our next step is the matching phase and I so excited for this phase to begin! It is finally starting to feel real to me. Our family profile is going to be given to the genetic families (as they are called by the agency) and hopefully one will choose us to adopt their embryos. If we choose them back we will receive all of their embryos, and can begin the implantation process! The matching phase takes 3-6 months on average.

We are doing our adoption through Nightlight Christian Adoptions, but there are others who do embryo adoptions as well. Please feel free to read more about it, but also please ask me any other questions you may have. I know with this post I have not given all the information you may be wondering, but I will certainly be telling more as this process continues for us. Most of all we ask for your prayers as we continue on this adoption journey. We will certainly need them!

Family of 3 for a limited time!

*Our home study actually didn't take much longer than 1-2 months to complete. The draft of the document has been finished since the end of July. However, we have been waiting MONTHS for our FBI background check to be processed and completed. SO frustrating, but also fairly typical. If you are going through an adoption I would suggest either sending off your prints at the beginning of your home study process OR use Fieldprint to complete your background check. After waiting 3 months for our prints to be processed I was told my prints couldn't be read and that we would have to redo the whole process. Our social worker told us about Fieldprint. They are a company who will complete your prints electronically and submit them to the FBI electronically as well. They claim to get your results back for you in 3-5 business days. I got mine back in 6 HOURS! It was well worth the money (only a little over double what you pay if you mail them in and wait the 3 months for it to be processed.) Please note however, this company will not work for you if you require an apostille copy of your background check.

Lately

I figured it was time to update everyone on Kinsley's progress of late. There are several issues which I would like to tell everyone about and request your prayers for.

First, and at the foremost of my mind is Kinsley's ERG tomorrow. Please be in prayer about this if you can be. It is going to occur at noon tomorrow and she will be sedated for this procedure. This is scary for a few reasons, first sedation is always scary, but can be worse for people with muscle diseases. Thankfully, we know from two previous experiences that she has been through sedation just fine with no issues, but it's still a slight concern. Additionally, she has to fast before it and therefore may only have one cup of apple juice tomorrow morning. No food and no other drink. This is something no toddler would tolerate well, but certainly not one with special needs who doesn't understand why she can't eat anything. So, that should be fun. Now, what's an ERG, you ask? It stands for electro-retino-gram and it will be an in depth eye exam for Kinsley. In my last post I mentioned how the ophthalmologist at the NIH suggested we have this done to check for retinal degeneration of Kinsley's retinas. We were supposed to have it done in August, but Kinsley and I both got the stomach bug the weekend before it was scheduled, so it was rescheduled for tomorrow. Please pray we will get good results which show that her retinas are great without any degeneration and also for the issues mentioned above.

The next issue we've been dealing with are Kinsley's seizures. Most of you know we've never fully stopped Kinsley's seizures, but they were not happening often and each EEG showed that her brain waves looked pretty good, with only occasional minor spikes that were not hurting her development. Although we'd prefer that not to happen, it was the best it could be if seizures were going to occur. Unfortunately for the past several months we've seen an increase in the number of and intensity of her seizures. They were happening about once a day. We tried several increases in the medications she was already taking, which would help for a little while, but eventually not so much. So a little over a week ago we added a third seizure medication. The great news is that it seems to be helping so far. Since starting it she's only had two seizures and none since last Tuesday. We're very thankful for that and ask that you pray this will continue to work.

The down side to any seizure medication is the side effects. The main ones we're dealing with this time include behavioral changes, effected sleep and balance issues. With this med, many people are calmer, but it can have the opposite effect. At first it seemed that Kinsley was calmer and happier over all, but as we slowly increased the med to the appropriate dosage, she's been cranky seemingly without cause. We're thinking the medicine is probably the cause. Also, her sleep is somewhat effected. Some nights she's waking in the middle of the night and others she sleeps through, but wakes up an hour or hour and a half earlier than normal for her. The worst side effect is it effects her balance. For a child who already has balance problems, this isn't something we want to see. Her tone is worse which just makes her more wobbly all around while she's trying stand or walk. It's not setting her back too far, but is definitely making her progress in those areas harder to achieve. All of this being said, the side effects should subside as her body adjusts to the medicine. Please pray that happens, but that the medicine will continue to hold back her seizures.

So, how is the walking coming? Since we've started using her walker, Kinsley's walking has improved so much. She's able to use the walker with minor help in direction changes to walk at least 50 feet. We use it often to walk from the car to different buildings we're entering. It's still easier to carry her around and she's not totally the best at avoiding people and all objects yet, so once we can find a place to "park" her walker inside we're mostly helping her walk by holding her hands, letting her crawl still or just carrying her. The biggest change since last time I posted is that she has started taking independent steps without her walker or holding anything! Around August she started walking in the shallow end of our neighborhood pool a few steps at a time. Slowly that transferred to on the ground and now she can consistently take 6-10 steps at a time. She still loses her balance often so one time she may take two steps and fall and the next she could take 8 steps. And then go right back to two. It's still a work in progress and like I mentioned above, the new medicine is not helping us with it at all. However, it is her PT's goal and mine as well that she be able to walk across a room all by herself by her 3rd birthday (Dec 20). Will you join me in praying this specific prayer to meet this goal? I know it will be more than possible, with God's help, for us to reach this goal. Here's a video of the progress so far:

Speaking of turning 3, Kinsley will soon be losing her wonderful developmental therapist. Carol has been so wonderful for us the past two years and she will remain a great friend, I'm sure, but sadly Kinsley will not be able to see her anymore when she turns 3. Kinsley's developmental therapy is funded through the Early Intervention program which only goes to age 3. After that she enters the world of public education if we wish to continue developmental therapy. So, we have some tough, important decisions coming up. In just over a week we have Kinsley's first IEP meeting. It's a scary thought, but I know it will be so important. As a teacher I sat through many of these meetings with ease, but as a parent I'm somewhat terrified. I, obviously, want what is best for Kinsley educationally. This doesn't mean she even needs to do anything right now, but there is an option for a half day, four days a week pre-school which we are considering. We think some socialization with other kids would be good for Kinsley, but we still aren't sure if she should do this or not. Thankfully, if she does this, she'll still be able to have the private PT, OT and ST she already has and we will not be changing that at all. Anyway, please pray we'll make the right decision.

Ok, I've asked for MANY prayers this post. I apologize, but truly I'm praying about each of these things constantly and I'd love your help as well. It's greatly appreciated. I would love to be praying for you as well. I've recently started writing all of my prayer requests down along with the many friends and family I know with their own requests (I should have been doing this long ago, I know). There is so much hurt and hardship in this world, but I'm so thankful God carries us through it all. One of those ways is when we help each other. So please send me your prayer requests as well. I'll add them to my list and will lift you up in prayer as well. "Bear one another's burdens and so fulfill the law of Christ." Galatians 6:2

Now for some pictures of our sweet girl over the last few months:

Playdate with Aubree

Getting ready to swim with Ellie (this girl loves the pool!)

Splash pad with Cooper

First haircut!

During a recent 8 hour EEG

Still patching 6 hours a day 6 days a week

Standing girl