Tuesday, October 13, 2015

Snowflakes in Heaven

I don't know any other way to say this, so I'll just say it. We did our first transfer on September 22. We transfered two of our embryo babies. (Yes, I did previously say we were only going to transfer one, but that is a story for another post.) Ten days later I had a blood test done to test for HCG (pregnancy hormone). It was positive, but very low at 24. We knew then it was possible our pregnancy would last, but that it was unlikely to.

Three days later I was tested again and that test showed my HCG level was down to 2 (anything below 5 is considered a negative pregnancy test).

So, I'm no longer pregnant. I'm heartbroken. I don't understand and I never will.

I do know that God is faithful. Even in this. It's hard to see how at this point, but I know it's true.

The song "Blessed Be Your Name" resonated with me in the miscarriage we experienced in early 2011 and it does again with me now. It's an excellent reminder that we praise and glorify our Lord in all things. We can't only love and worship Him when he gives us what we ask for. When things are difficult, He's still there and He still deserves our love. It can be hard for me to remember that in times like this and so I'm thankful for songs like this to help me when I want to forget that.

Please pray for us as we wait for the opportunity to move forward with another transfer and for our broken hearts too.

Blessed be Your name
In the land that is plentiful
Where Your streams of abundance flow
Blessed be Your name
And blessed be Your name
When I'm found in the desert place
Though I walk through the wilderness
Blessed be Your name
Every blessing You pour out
I'll turn back to praise
When the darkness closes in, Lord
Still I will say
Blessed be the name of the Lord
Blessed be Your name
Blessed be the name of the Lord
Blessed be Your glorious name
Blessed be Your name
When the sun's shining down on me
When the world's all as it should be
Blessed be Your name
Blessed be Your name
On the road marked with suffering
Though there's pain in the offering
Blessed be Your name
Every blessing You pour out
I'll turn back to praise
And when the darkness closes in, Lord
Still I will say
Blessed be the name of the Lord
Blessed be Your name
Blessed be the name of the Lord
Blessed be Your glorious name
Oh, blessed be the name of the Lord
Blessed be Your name
Blessed be the name of the Lord
Blessed be Your glorious name
You give and take away
You give and take away
My heart will choose to say, Lord
Blessed be Your name, Lord
You give and take away
You give and take away
My heart will choose to say, Lord
Blessed be Your name
You give and take away
You give and take away
My heart will choose to say, Lord
Blessed be Your name

Thursday, July 9, 2015

Embryo Adoption Moving Forward

Well, it's been awhile since we've been able to say this, but we are finally moving forward with our embryo adoption! No more waiting!

My last thyroid function tests showed that my thyroid hormone levels are back within the normal range thanks to the medication I've been taking. Praise God for that. Unfortunately, my TPO antibodies (for those who don't know, these are a part of Hashimoto's and are a part of what has been hurting my thyroid) are still in the abnormal range. The antibodies are lower than ever before (down to a 168 for those who want to know) which is good, but a normal level is below 38.

After talking with my doctor she said I am medically ready to move forward with our first cycle. However, I was also informed that because of my diagnosis, I will always have elevated TPO antibody levels for the rest of my life (this was not something we understood before). She said I would not ever get below 38. This means that I will always have an increased risk of miscarriage, but she also said if it was her, she would go forward with the cycle.

The increased risk of miscarriage is a very scary truth for me. Some of you know, but many don't, that I experienced a miscarriage before we had Kinsley. It was the hardest experience I'd been through up to that point in my life and (of course) not something I ever want to experience again. That being said, we've always known of the risk of miscarriage in expanding our family through embryo adoption. Statistics say that half of all pregnancies end in miscarriage (many happen without the mother's knowledge very early in the pregnancy). Knowing that we still chose this option.

Now knowing that we have an even greater risk of miscarriage is difficult to process. BUT, we believe God brought us to this point and will carry us through. I could live this next part of my life in fear of what will happen with worry and anxious feelings, but I'm choosing to leave this up to God. God's word talks about fear so much. And what He's always reminding us is to TRUST Him. Do not live in fear. He is always with us and will never forsake us. Does that mean I won't have a miscarriage or that our first transfer will even result in a pregnancy. No, not necessarily. Obviously, we are aware of the realities of our own free will in choosing this path. And the realities of a fallen world that includes sickness and death. However, we also know our God is greater than all of that and He can carry us through this process. These words of Jesus will be what I remind myself of over these next few months:
"Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid."  - John 14:27
So, we will not live in fear. Instead, when fear creeps in, we will go to Him in prayer asking for peace, and His will to be done. Will, you please join us in praying for this process? We know that the fervent prayers of a righteous person are powerful and effective. So, we desire all of your prayers for this first transfer to be successful and result in a strong, healthy pregnancy and baby. Thank you so much!

As for the specifics, we are not doing the July cycle as we previously had hoped. Really, this month is so incredibly busy for us and it was just going to be impossible to get everything done that needs to be done medically, financially and legally (we're doing our transfer in Tulsa and Oklahoma law requires a judge to approve this). So we are moving forward with the August/September cycle. This means I will begin my medications for the cycle next month and if everything progresses as it should, our first frozen embryo transfer will take place in early September. Again, we so desire your prayers over this whole process!

I haven't decided how much more I will post on the blog through this part of the process. I feel the need to keep how things go private through this part, mostly for my own ability to process the emotions and unknowns without the whole world knowing everything. I guess what I'm saying is, please don't be offended, but I may not post about the transfer until it's over and we know whether or not a pregnancy occurred. I will definitely let you know one way or another, but it will just be awhile before I do. I hope you can understand that! I really do appreciate all who have kept up with our adoption and have helped us financially and/or through prayer.

That's all for now, but I'll leave you with a picture of our little walker. She's been making more and more gains in her walking and we are so thankful! Her new record is 46 independent steps. Thank you, Lord!


Thursday, June 18, 2015

SHE'S WALKING!!!

Praise God from whom all blessings flow!

I can't even describe the elation I am feeling right now. I'm somewhat shocked too. I knew this day was coming, but I just never knew when it would be.

This past week or two Kinsley's walking while holding one hand has become so stable. She's been moving with very few balance checks and then yesterday during physical therapy she walked independently for 14 steps. That was a new record for her. I should have realized it was tidings of good things to come.

Then, tonight, I watched her walk from our love seat to the couch with no problems. Then she started walking to the kitchen - further than she's gone. So I decided to get out my camera and get it on film!

So, some notes about the videos:

1) Recently we got a helmet for Kinsley to wear around the house so she can move around independently without someone right next to her 24/7. She's wearing it in the video and her hair is a wreck. Please excuse that!

2) There is a better video of her walking, but it was too large a file size and blogger wouldn't let me upload it. I will post that one on Facebook. Please watch that one (and forgive the crazy camera work as we were home alone and I had to video while following her around). If you don't have Facebook, I'm very sorry!

3) These are the best videos I have ever seen in my life! I am so proud of this little girl.

video


Thank you so much for all that have prayed for this for so long and especially for the prayers for greater balance that I asked for in the last post. You guys are so helpful and God is so gracious and amazing to bless us in this way. Thank you, thank you, thank you!!!

Thursday, May 21, 2015

Sweet Summertime with Sweet Kinsley

As promised, it's time for a post about our sweet Kinsley girl. Kinsley has one week left of preschool and then it's time for summer! Yay! I'll admit, I've come to enjoy having the hours in the afternoon to work on chores, run errands, blog, work on adoption stuff, watch a little Netflix and enjoy the occasional day date with Luke. It helps that I know she's having fun at school with teachers and students who've come to love her. My initial reaction to thinking about having her home those hours again was, um, what are we going to do during that time? But, I've been happily planning some summer activities which I'm eager to try out with our precious girl.

You see, it can be difficult with Kinsley to find things to do. She has a limited number of activities that she enjoys and her attention span is not long and if I let myself, I start to feel sorry about all the things we can't enjoy together - movie dates, dress-up time, baking cookies together, craft projects, singing together, playing games, etc. These are the sorts of things I imagined I would enjoy with my child before we knew about her diagnosis. And unfortunately, those are just not things Kinsley can do or wants to do.

However, when I feel down, it helps to make a list of the things she CAN do and enjoys doing and make sure we spend time doing some of them each day. Every smile or laugh that comes from her over these activities makes all the sadness disappear and my every second with her so worth it. So here are some things we plan to do every day this summer (and of course we already do these now, but we can do them MORE this summer.):

  • Swinging - we have a toddler swing hanging out back and I think this is Kinsley's favorite place in the world. The second she sits down in that swing her smile appears and the first push always comes with a squeal of delight. I seriously think she could swing for hours and enjoy every second of it. It's the best thing ever. She loves it. And I love how much she loves it.
  • Singing - I mentioned this above and while we can't sing together, I can still sing to her, which she loves. When I sit her in my lap and start into her favorite songs, she just smiles and makes her happy sounds until each song is finished. If clapping is involved, she claps along too. This too she could enjoy forever. It only ends because my repertoire of songs runs out. (If you're wondering she enjoys songs like, "If You're Happy and You Know It", "The Wheels on the Bus", "Roley Poley Roley", "Where is Thumbkin?" "Our God is So Big", etc., etc. etc.)
  • Bouncing on her trampoline - she received a mini-trampoline as a birthday gift and the girl loves it. If I help her bounce her body, she'll smile and ask for more until I run out of strength to continue.
  • Dancing - I hold her in a dancing position and spin us around singing "Dancing, dancing, dancing, dancing," and she always wants more. Unfortunately for her I get motion sickness way to easily (yes, just spinning in a circle makes me sick) and this can only last a few rounds. But each happy smile is worth it.
  • Blast Offs - This is more of a daddy game because he's much stronger than me. I can only do it with her in a pool. But this girl is an adrenaline junky and loves to be thrown in the air.
  • Play ball - While Kinsley's ball skills are mostly poor, she does understand and is able to push a ball back and forth. She loves the cheers she gets with each pass and claps and smiles the whole time. It's much fun!
  • Read together - Kinsley's favorite books right now are the ones with the sound buttons. Each time she pushes one of the buttons and hears the sounds, a smile crosses her face or her happy hum comes out. Needless to say, we have many of these books and we read them each day. But also, she's recently begun enjoying hear us read Cat the Cat books by Mo Willems (isn't he the best, btw?!). They are repetitive books for toddlers and she finds them so funny! It's so fun to watch her face as she listens. We only have two Cat the Cat books right now, but more will be purchased!
There are more, similar things to add to this list, but this is the gist of our day to day fun. We also have other exciting things planned for this summer like a family wedding where Kinsley gets to be a flower girl! Luke's brother, Jared is marrying an amazing lady, Natalie and we couldn't be happier for them. This wedding will be our first big adventure for the summer. We'll also enjoy a week in Alabama with my family, some time in Colorado with Luke's extended family, play dates, park time, pool time, splash pad fun and more. I'm planning to buy a sprinkler and get that set up for Kinsley some this summer too. This girl loves water and I'm hoping some sprinkler time can help adjust her to feeling the grass (she doesn't enjoy touching grass and other similar textures).  I think it'll be a fun way to work on her walking skills too. We'll see how it goes!

Kinsley will also be doing a summer program through her preschool for five weeks, three hours each week. It'll be in her same classroom and she will work to maintain her level of comfort, language skills and adaptation to school that she's gained this past few months. This is to avoid losing anything over the summer and avoid a rough transition back into school come August.

As for prayer requests in regards to Kinsley, I have some specific ones. First, please continue to pray for her to gain more balance. She's still not walking independently more than five or six steps consistently because her balance is so poor. She has the strength and desire to walk, she just has very little balance and control. So, please pray for that! She's become very good with her walker and is also constantly improving at walking with one hand held. I can take her into church, therapy or a store holding one hand with only a few balance checks and rarely a fall. I know that doesn't sound amazing, but a few months ago we could only walk a couple of feet that way. Now she can go hundreds.

Secondly, pray for her language development. She still only uses three signs and babbles, but without any words for meaning. I'm ok with whatever she is able to develop, but I know God is all powerful and can help her to gain more than we imagine. So please pray about this for us. She is currently working on using PECS (Picture Exchange Card System) during speech therapy and she's become quite good at it. It took awhile to get there, but she now can differentiate between two pictures and choose which item she wants and hand the card over to her therapist or me to receive the item. It's very exciting to watch because it shows us the understanding she has and we're very thankful for it. Currently she only uses it during therapy, when I do "home therapy" with her and at school, especially during snack time where she uses the cards to request food and drink. My hope and plan for the summer is to begin to adapt our home and environment where the PECS can be used more functionally throughout the day in order to encourage more language development from Kinsley. This is a big endevour though and I'm a bit overwhelmed by what all needs to be done (items she likes need to be re-organized, picture cards laminated with velcro will need to be placed at her level throughout the house, etc.) and I'm nervous that she's going to hate it (since it means her toys will only be available when she requests them now instead of just out where she can get to them like they have been.) But I will be good for her and hopefully all of this is leading us towards an adaptive device for her to communicate with eventually. Anyway, many prayers are needed!

My last prayer request is related to the gene therapies that some day may be available to help treat CMD. CureCMD, a research organization who are working on a cure for MEB and related diseases some day, recently announced a research grant that has been funded to them and they will be working on developing a gene therapy in mice with the affected FKRP gene. This is not the gene the Kinsley has affected (hers is POMGNT1), but it is a gene that causes a dystroglycanopathy (what hers causes too) and is very closely related. This is not a clinical trial or anything, but it's a great step towards that and what we've been praying for. Honestly, all the gene stuff and research about gene therapy can be somewhat confusing, but the big thing is they've started researching gene therapy in dystroglycanopathies. That's huge for Kinsley and kids like her. It may not mean anything would be available in her lifetime, but it COULD. So, keep those researchers in your prayers, please!

Thank you so much for loving our sweet girl and caring enough to keep updated on her and most especially, thank you so much to all those who are praying for her. On a regular basis I have people (all different people) tell me they are praying for her and our family. This is huge for her and for us. We so appreciate the support and love, but most importantly know that God is in control and it's through his blessing and help that our sweet girl has come as far as she has. All praise goes to Him!




Tuesday, May 19, 2015

A Short Update...

Some people have been asking me how things are going thyroid-wise and moving forward with our embryo adoption, so I thought I'd give everyone a quick update.

Up until yesterday, we've just been waiting. I started taking thyroid replacement meds about five and half weeks ago now. (For those who missed the last post and are confused, click here to find out about my Hashimoto's Disease diagnosis.) Like I said before, we were told it would take weeks to months to really take effect and help get my hormone levels back within normal range.

I went ahead and got a blood test done exactly four weeks after starting the meds since I've been anxious to hear how the meds were helping. I should have had the results back within a day or two, but just like everything we've done so far, more waiting than planned was involved (God really is teaching me some patience these days!) My doctor was out of town for the week, so I was not able to receive the results until she was in the clinic and had read them. So ten days after the blood test, I finally heard back.

My levels are still not within normal range, which is disappointing, but they are progressing towards the correct ranges. So, basically, I'm getting better, but I'm not there yet. The doctor decided to increase my dosage three days a week and she thinks this will get me on track and within normal ranges by July. July is important because that is when the next FET cycle is offered by our clinic. They only do eight cycles a year and they don't do any in June. So we already knew, even if my levels were back to normal by now, we still would have to wait until July for our first cycle anyway.

So, at this point we are waiting. Again. Still. Waiting isn't fun, but you know, seriously, with all the waiting we've been doing, I really have learned to deal with it. I truly am feeling ok with things right now. I want God's timing to be what leads us through this process, not my blundering human rushing around, so I'm thankful He's in control and helping us down this path. (Now check with me next month after I check my levels again and make sure I'm still feeling this way. Give me a good reminder if I'm not! Gotta keep me accountable, people.)

Please pray for us through it all and specifically that my medication is doing what it's supposed to. Thank you!

P.S. I realize this blog is called Sweet Kinsley Girl and it's supposed to be about her. I apologize that it's morphed into more than that. I promise my next post will be very soon and it will be all about her. :)

Wednesday, April 8, 2015

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.

Thursday, March 26, 2015

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!




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



Wednesday, January 14, 2015

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!

Tuesday, January 6, 2015

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!