September 15- Then and Now

Hello family and friends!

One year ago today, Kevin and I put up these photos on Facebook:

One year ago, we were SO excited to announce that we were pregnant. One year ago, we were talking about how thrilled we were to start this new, exciting chapter of our lives. We were thrilled to go out and buy things (once we knew the gender of course… neither of us were fans of the whole “neutral” thing ;)).

One year ago, we didn’t know that just a month later (to the day)… our whole world was going to change. We had NO idea what the next year was going to bring.

We were just a young “newlywed” couple who wanted to start a family. (We weren’t planning on having a child as soon as we did but clearly the Lord knew what He was doing! ;))

One year ago, we were dreaming and planning of all the things we would get to do and experience with having a child…. Not knowing that one month later…all those dreams would come crashing down.

BUT!

I can now say that… that “change”… has been for the better; that change has shaped us in ways we never knew we needed.

One year has gone by since that oh so exciting day and looking back on the past year…. there is not ONE day that I would change. Not one.

Even through all the pain, misery, heartbreak, anger, doubt, worry, and stress (I could go on and on) I encountered 11 months ago, I would not change a single moment.

It is SO hard being in those moments (I can remember them oh so well) but looking back on it now… this… this is the reason why we had hope and always will.

Hope. Belief. Confidence. Desire. Expectation. Faith. Optimism. Promise. Security. Reward. Reliance.

I don’t think it’s a coincidence that all these synonyms of hope portray exactly what we all need to hear every once in awhile and to be reminded of daily.

For example:

Believing in God and His promises is worth it… being confident that God WILL do what is just, right and perfect… desiring more for this life than the mundane… expecting that your life WILL be alright if you just trust God… having faith that God is who He says He is… staying optimistic when life throws those curveballs at you… having security knowing that God is for you… knowing that there is a reward for believing and having hope in our Lord…

I could go on and on but I know y’all are just here for an Annalise update. 😉

So… let me see what I can update you on! =)

Back on September 2nd, I had posted this on our Prayers for the Pragels Facebook page:
“Just to clear up some information that I get asked quite a bit:

(I don’t have a problem with questions and encourage them so people can be better educated and informed of what it looks like to have Hydranencephaly and Hydrocephalus.

We are here to raise awareness that NO human being should be considered “incompatible with life”. There is ALWAYS hope and a life is more precious than a doctor’s assumption that things WILL be a “bad” outcome.)

Okay… On to the questions… Lol!

Can she see? We think yes. Well… at least some. :p She responds to things (like books and toys) and to people. She loves anything with lights and always finds the TV when it’s on. Yes, it takes her ALOT longer to focus on stuff. Yes, she doesn’t stay focused for very long and NO- she is not tracking things. (She has gotten better at tracking things moving up and down if it’s slow moving and a short distance.) We go back to see the eye doctor in the next month or two to check again. CCVI (specialized teachers/therapists for the visually impaired) is starting to come every other week from now on to help with improving her sight and processing.

Her head will not get any smaller. In fact, it’s slowly getting bigger. BUT, that’s a good thing BECAUSE her skull bones are shifting and trying to become ROUNDER, which is why the circumference size is getting bigger. (47 cm around after surgery…. 5months later today it is 49 cm around… So not that much bigger ;))

(Her hair IS in fact growing like a weed- she gets that head of hair from her daddy!)

She does still roll from back to belly. She won’t ever stay on her back actually…. unless I’m pretty much “securing her down” to where she can’t roll! 😛

She does still do her little “scooting” thing…. mainly in her crib though. (Which I don’t blame her for that since it’s softer than the floor.)

NO- she is NOT always on her back. It’s just that I pretty much only post pictures of her on her back or in the boppy because she takes the best pictures like that =)

We have to do a lot of tummy time and lots of weird, crazy positions that I pretty much have to make up on my own (since we don’t have any special equipment at home). So I can’t take pictures and hold her and balance her head and teach her things at the same time. ;P

Once we see an Occupational therapist, we will know if she will be able to eat baby food and how to go about that since she can’t sit up on her own and does not have complete head control. She does have pretty good side-to-side head control when she is laying down or in her car seat. But when we practice sitting up she will look and tilt her head one way and stay there. So I have to move it back showing her and trying to help her figure out that she can move it back if she really tries.

When I’m doing tummy-to-tummy time with her (which helps with trying to lift her head), she can throw her head back (if she really wants to). My arm is always behind her head so that when she does throw it back, it stops at a certain spot and she doesn’t hurt herself. Then she will turn it from side to side there but has no control from moving it “up and down” (back to my chest to lifting it back up).

I thiiiiiiink I have addressed most of the questions. I can’t remember anything else right now anyways tongue emoticon but always just ask away and I really do try to get back to you 😛

Finally-

Every child is different (whether they have special needs or not) and learn things differently and at different speeds. Things that work for Annalise, won’t necessarily work with another kid with the same diagnosis.

It really is about figuring out what works best for her and what is going to help her most.

I’m not perfect. I don’t know everything. Some may disagree with how we do things or think there are better ideas for her…. But this is as much of a learning process for me as it is for her! (And I wouldn’t trade this experience for all the money in the world. =))

God has blessed us with her (we know that full well!) and we are just two young, new parents who never expected to be put on this unexpected, but amazing, journey.

The Lord ALWAYS provides, His love NEVER fails, His plan is ALWAYS perfect, and He IS Sovereign.”

On September 8th, I posted this:
“Today has been a busy day but we are so excited to announce another “smilestone”!!!!!!!!!

After taking daddy to school, we went and saw our Occupational Therapist about feeding her solids!!!

(We have been skeptical to start it since we didn’t know if she would be able to process what she was doing, how to get the food from front to back, and then swallowing it.)

She wasn’t so sure about eating at first.

Because her vision isn’t “fully functioning”, she can’t see the spoon coming so she gets startled when something gets put to her mouth. So we have to run the spoon along her lips until she processes that she needs to open her mouth. (Everything is developmentally delayed and her processing is slow to everything anyways so it takes her a lot longer to realize what she is doing.)

We barely put anything on the spoon. Pretty much just a couple rice cereal drops ;p and we were more trying to get her orally stimulated than anything. She did successfully move the tiny drops to the back of her mouth and swallow. She never once gagged!!!

She would just have it in her mouth for a while, moving her tongue around, figuring out what in the world is going on. Then she would swallow…. so it takes a lot of work and patience and very, very, very, very, tiny amounts of food but we can officially start introducing her to it!!!

We are supposed to do it once a day (with cereal first for 4-5 days then can move on to something else- only one thing, one substance at a time to check for allergies).

We are mainly doing it for oral stimulation and trying to get her introduced to that type of motor skills. It’s not for nutritional measures yet (kiddos don’t really need that until they are a year old apparently).

But after awhile of doing it, she was doing pretty well and didn’t seem to mind it!!!

We are so excited to start working with her on this new adventure!!!

Have I mentioned how blessed we are to have her? How good our God is?

Everyday I get with my Annalise Hope…. I realize that when you just give your worries and doubts to God and accept that whatever His will is (which IS always perfect) for your life… Things will be worth it. It can be painful, it can be hard, it can be trying at times… but His way is much better than my own!

We are so incredibly thankful and we can’t say it enough.

Thanks for joining us on our journey and praying for our sweet girl!

We appreciate all of it… All of you.”

She is slowly but surely getting better at this eating thing! She BARELY gets any food because we are still trying to practically teach her how to eat but she is doing so well. She maybe eats about ONE little tiny spoonful (IF that, really) each day. It takes so much time to “practice” with little amounts of food that after 20-30 minutes of doing it, she’s just ready for her bottle instead! 😛 This week, we are testing out how she likes peas! Yesterday was her first day trying and she wasn’t sooooo sure about them at first but then wouldn’t stop eating them! =)

The past couple weeks, she has been all about her feet! She is just loving being able to grab them or roll to the side and get them… she always finds a way to touch them. She still loves any toy that lights up, sings, or moves. She loves high contrast items. She is still really drawn to black and white things. She loves being able to explore her world more on her own now (which makes this momma so happy!) and she is CONSTANTLY smiling. She is still babbling and making random noises daily. (She will randomly make a different sound every once in awhile and Kevin and I get so excited!) Yesterday, I lifted her up to do tummy-to-tummy time and she started making these NEW sounds. Kevin and I were laughing so hard at it because it was so cute!

We are still doing physical therapy about every other week… sometimes a little more. We are in the process of trying to get some type of seat that we can use at home to help with sitting up and head control. (We would be able to use it for feedings as well.) She has used several different types of seating equipment at therapy so those are the ones we are trying to get. We will go back to see the occupational therapist occasionally to check on her progress (mainly with feedings).

Hopefully we will be getting into seeing the eye doctor next month. Her next neurosurgery visit isn’t until December and her next neurology visit isn’t until January. (Just routine checkups =)) Her next well child exam isn’t until she is 9 months old so we have another 2 months for that as well!

I can’t even believe that in TWO days, our little 14-pound girl (who still wears size 3 months clothing) is going to be 7 months old. SEVEN MONTHS!!!! Wow!

I know I say this A LOT, but we are SO blessed!!!! So, so, so, very blessed.

And to each and every one of you that take the time to read this, to follow our page and story, to pray for us… THANK YOU! We are SO appreciative for y’all. Your love and support has meant SO much to us.

A year ago, we never would have thought that we would be on this journey with all of you. We never could have imagined what we would learn about God and His love, about ourselves, and our community.

We have NEVER wanted our story to be about us. We have ALWAYS wanted it to be about God and His love. We have ALWAYS wanted to glorify God in all that we do. We NEVER wanted any attention to be on us.

(And now I have to confess something… This past week has been a little bit of a struggle for this momma. I don’t know what it was about this past week, but we had a handful of messages and comments on our Facebook page that were not so nice. Our Facebook page is not about gaining attention or fame… that page was started by my sister to keep our close family and friends in the loop during the end of our pregnancy and then it just took off from there. I know there are always going to be those people who don’t like what we do or say. There are always going to be hurtful things said. It just broke my heart reading those things this past week though. So much so, I almost took down the page. But instead of giving in and letting Satan try to sneak in, I just prayed a little bit harder for those people.)

Needless to say… thank you, from the bottom of my heart, to those of you who are such an encouragement to us and to those of you who genuinely care for our sweet girl. Thank you.

I know what you’re thinking now. WHERE are all my pictures?! 😉

One last thing-

This song is one we sang in church this last Sunday and it has been stuck in my head ever since…

“Precious Cornerstone, Sure Foundation

You are faithful to the end

We are waiting on You, Jesus

We believe You’re all to us.

Let the glory of Your name be the passion of the church

Let the righteousness of God be a holy flame that burns

Let the saving love of Christ be the measure of our lives

We believe You’re all to us

Only Son of God, sent from Heaven

Hope and mercy at the cross

You are everything, You’re the Promise

Jesus, You are all to us

When this passing world is over

We will see You face to face

And forever we will worship

Jesus, You are all to us.”

(All To Us by Chris Tomlin)

May the Lord bless you, keep you, and give you peace!

Gofundme page- http://www.gofundme.com/hopeforannalise

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45 comments

  1. Kerrie Marquart · September 16, 2015

    You both make me smile no matter how bad my day has been!  What a joy! 

    Like

    • Pam Gagnon · September 16, 2015

      You are just amazing and Thank you for sharing her and her story with us. Love all the pictures and her

      Like

      • Nancy · September 16, 2015

        You are a real trooper, I do love the pictures you post and all the updates, in my prayers all of you

        Like

  2. Julie · September 16, 2015

    You guys are amazing parents and good knew you were the best ones for that precious baby girl!! She is befuddled and I live following the page! She makes me smile and is the cutest. Your doing amazing with her and forget anyone who says anything negative tonyou or about what your doing. You don’t need that in your life or inbthat amazing little ones life. Keep up the good work and praying for you all!!

    Like

    • betty · September 16, 2015

      Your daughter is absolutely beautiful. What a precious smile and those eyes are truly memorable. How blessed you are.

      Like

  3. Robin · September 16, 2015

    Can you explain hydroencephelytus (I don’t think I’m spelling it correctly)? I looked it up, but it doesn’t seem to describe Annalise, other than the fact that she has a large head. So she has too much fluid in her brain? From your pictures it doesn’t seem to cause her pain…she seems very happy and smiling (her facial expressions crack me up!).
    She’s a peanut!!! 😘😍

    Like

    • Candace · September 16, 2015

      Hydrocephalus is extra cerebrospinal fluid on the brain. Hers just accumulates up there and doesn’t drain through to her body (like ours does). So she had a shunt placed in when she was 5 weeks old. That is the “filter” that drains her fluid from her head down into her abdomen. If the shunt were ever to stop working… It would start accumulating again.

      Like

      • sue seiler · September 16, 2015

        I just want to kiss her sweet faceand tiny toes—–she is such a blessing / thank you for sharing her story with us. GOD is good!!

        Like

  4. Wendy · September 16, 2015

    Love! You, your family are an inspiration! I would be sad if you took down your posts. If I need a smile, I know all I have to do is get on Facebook and find new pictures for the day. I love the way that you accept the things that she may not be, but push her to be everything she can be. As a teacher of preschoolers with special needs, I see all kinds of parenting and situations. I’m not an expert, but I would say, you and your husband are doing the best you can and more for your sweet Annalise. She is happy and thriving!

    Like

  5. Nancy · September 16, 2015

    She lifts my spirits when I am down with her smile and her adorable clothes. I love reading her story every couple days. Thank you for sharing your journey with us.

    Like

  6. Kristin Whaley · September 16, 2015

    I do not know you, and you do not know me, yet I feel like a close friend just by reading your blog. I love you and Annalise and your family. I pray for you, rejoicing with you and cry with you. God is a good God and is showering you with blessings, even on the bad days. Thank you for sharing your story, and so honestly. May God grant you peace and the best sleep you’ve had in months.

    Love your sister (in Christ),
    Kristin
    Palm Bay, FL

    Like

  7. candice · September 16, 2015

    I’m so sorry you had some negative comments! That breaks my heart. I absolutely love reading about Annalise and what she’s been up to. My daughter is about two months younger than Annalise and they make similar expressions. Aren’t they so cute at this age! Warms your heart to see them grow and ‘talk’ and smile. Keep doing what you’re doing, your little girl is a true light in this world.

    Like

  8. Wanda Smith · September 16, 2015

    There are gonna always be mean hateful people in this world !!!! Just know that what they think and say don’t matter !! Don’t let them get to you !!!! God has blessed you and your husband with that precious girl …. He must believe in you because he trusted you to take care of her and y’all are doing an awesome job!!! Please don’t ever take this page down … I get in a funk if I don’t get my Annalise fix everyday !!!! I love her like she is one of mine and I’ve never even met her !!!! Keep on loving on that precious girl and let God handle those who wish to bring you down!!!! What a miracle that baby is !!!! 😃

    Like

  9. sas1130 · September 16, 2015

    What a precious little girl! I was smiling and laughing at some of her facial expressions. She is adorable! More pictures please! 🙂

    Like

  10. cynthia · September 16, 2015

    I’ve only been following you for a short time but your family has made such a huge impact in my life and my heart. Your faith is a shining beacon of God’s faithfulness to never leave us or forsake us. What a blessing your beautiful daughter is! Don’t ever let anyone’s negativity get to you – people who have not walked your journey just don’t get it. I believe that miserable people want others to feel miserable, too, so they can just feel better about themselves. You exude joy and every picture that you post shows the light of God in her shining smile. Praying for your family every day that God continues to bless you as you have blessed us!

    Like

  11. Debra Horstman · September 16, 2015

    I love her soooo much. Love to read about her progress

    Like

  12. Jean Smith · September 16, 2015

    Such a cutie! She looks like a little baby doll.

    Like

  13. Darcy · September 16, 2015

    Your family is truly a blessing and Annalise is soooo precious. I love your updates!!

    Like

  14. Cavette Hellums · September 16, 2015

    What you wrote blessed my heart! She is precious and she makes me smile real big!!!! She is one blessed little girl to have such an awesome and amazing mommy and daddy. Thank you for sharing your journey with people you don’t even know….like me!

    Like

  15. Jennifer · September 16, 2015

    You are her parents, and you know what is best for her. She is beautiful. You guys are obviously doing a great job! Keep up the good work, momma!

    Like

  16. Janet Camp · September 16, 2015

    So thankful you didn’t take down your site or facebook. I just love seeing little Miss Annalise’s pictures. She has the most beautiful blue eyes & most precious smiles/expressions! We fostered a baby with schizencephaly & hydrocephalus. She has the most beautiful brown eyes & may only see flashes of light or shadows. We later had twin grandsons one of who was hydrocephalic. He has surgery & is progressing well. I am just amazed at Annalises beauty & progression too! GOD IS GOOD & TO Him be the Glory! Y’all seem like a precious couple & you never have to be concerned about how you present your blog. You do an awesome job & I feel God is pleased. You never know how many people you are a living testimony too, so keep looking up like my husband says. God’s got this. Don’t let the “haters” bother you. Like that song says haters gonna hate. Just be you & leave them to God. Many blessings to your lovely family!
    Janet “Tempy” ( honored to have loved Zaryah & Quincey prior to loving my grandson Reeves) I have ♡d children with hydrocephally! God’s little miracles.

    Like

  17. Ami · September 16, 2015

    Don’t let those comments discourage you. Don’t even listen. That speaks volumes about anyone who would say such things and says nothing about you and your sweet family. I can say with confidence that there are countless people like me to whom Annalise is a source of joy and inspiration. Love and prayers always——

    Like

  18. Tami · September 16, 2015

    You are an amazing mom. You inspire me daily and I have long wanted to tell you. This little girl brings so much joy every time I see your post no matter is happening I smile. What a symbol of Hope and Joy. She is beautiful, you are amazing and God is so good. Thank you so much for sharing your daughter and your journey.

    Like

  19. Kristi · September 16, 2015

    Thanks for not taking the FB page down. It is one of the highlights of my day. We’ve never met but I keep you in my prayers and am thankful for the witness you are.

    Like

  20. ms_patpat@hotmail.com · September 16, 2015

    Thank you for the updates and photos of your beautiful Annalise. She seems to be such a happy girl, probably because knows how much she is loved. I love this little one and pray for her every night. I know God will keep you all in his loving arms. Kisses and hugs to your little doll.

    Like

  21. susanmsj · September 16, 2015

    Thank you for sharing your journey. I love looking at the pictures of Annalise. She has such a sweet, precious smile that could make any day brighter. Don’t let the negative comments get you down. Just ignore them or unfriend them from the Facebook page or whatever you need to do.

    Like

  22. Maxie Lloyd-Hamilton Anderson · September 16, 2015

    Hello. Loved reading about your life with Annalise. She is so precious. Her hair sure has grown. Such a headful. Glad for all of her progress. With GOD’s help you two are doing a great job. Ignore the naysayers. There are always going to be some of those. But, GOD always knows what HE is doing. And, HE chose the two of you for her parents because HE knew you were the right ones. Oh my, I have really loved all of the pictures. She is a little doll. May GOD continue to bless all of you. Maxie

    Like

  23. Maxie Lloyd-Hamilton Anderson · September 16, 2015

    Looks like she sits real good in the car seat. Maxie

    Like

  24. Tia · September 16, 2015

    I don’t know why people have to say mean, cruel and hateful things. But they do. I am a short adult at 4’7″, but it does not mean I don’t see people staring (this includes adults) and pointing at me. I get the stares, short jokes, and the no respect sometimes as an adult. I have the large lady on a motorized scooter pointing to me and calling me out in front of her child as to how short I am. I get referred to “oh I thought you was a kid”. I get offered the kids menus complete with crayons and sometimes I am offered the kids eat free deal. It hurts and it always makes me sad to see parents hurt for their kids who are one of a kind. Be a strong momma and be an advocate for your daughter. Stand up for her and yes the cruelty of people will break your heart. Just remember God is in control and He loves her, you and Daddy too.

    Like

  25. Carmen · September 16, 2015

    Thank you for not taking down your page! Early on I found myself following your story through Facebook friends sharing your posts. I was so intrigued by your positive outlook that I looked forward to happening upon a post. I finally decided to “like” your page for myself, so that I could see all of your new posts. Thank you so much for sharing your life; joys and struggles; with the world. Your precious princess is the most beautiful baby I have ever seen. Pictures of her always make me smile. Be encouraged. You are doing a GREAT job!!

    Like

  26. Tracy · September 16, 2015

    She is so cute and has a beautiful smile! Keep up the good work.

    Like

  27. Carmen · September 16, 2015

    Your posts are so encouraging and glorifying to God! Thanks for being a blessing. Little Annalise makes the sweetest faces! And I love the pigtails!

    Like

  28. J.A. Ruhl · September 16, 2015

    My 18 year old grandson has this, only a milder form, and he is just the sweetest boy ever. We are also blessed by having him in our family. Some things are just harder for him but he tries hard. Annalise pictures are so sweet and thanks for sharing your story. God bless you and yours as you raise her to know & love Jesus.

    Like

  29. Brenda · September 16, 2015

    You have been so blessed .And have always gave the Lord God .your praises though all .what a joy you family is to so many .God is Good.Keep up what you are doing.she is growing and thriving so much. Each and everday.And keep sharing and praising God .

    Like

  30. Kelly · September 16, 2015

    Oh, man, picture overload! …NOT! lol. I will be thinking of those beautiful smiles and big baby blues all day…week! Thank you for sharing with us. What a God-glorifying testament to His faithfulness to a sweet momma! Prayers for your blessed family! Without the Hope Jesus provides…can’t even imagine life. God bless you! 🙂

    Like

  31. Lisa Littlefield · September 16, 2015

    She is so precious. God is indeed good all of the time. His ways are not our ways, so it is so hard to understand why he gives such a precious gift to you. She is a precious gift. Thanks for sharing her with us. My 10 year grandson is fascinating by her. She makes me smile. Prayers for your family.

    Like

  32. Jean · September 16, 2015

    Annalise is such a joy to me and your words are so encouraging. I pray for your family often. I know it hasn’t been easy – but oh. What grace and what provision. Do not let anyone rob you of your joy – your daughter is a gift from God and there are SO many people who love her! She has value – her life is meaningful – and God has a plan for his little girl. She reminds me of the song I used to sing as a child: “Jesus wants me for a sunbeam, to shine for Him each day…” She is God’s little sunbeam!

    Like

  33. Rachelle · September 16, 2015

    She is a precious little Angel! Love her smiles and the light in her eyes.

    Like

  34. Debora · September 16, 2015

    I hope you won’t allow Satan to steal your job through vicious people and their comments. I am so glad you decided to meet that with grace and pray for them instead. You and your family remain in my prayers. I love following your story and love how God just keeps proving Drs. and people wrong. I think you will have your girl for a long time to come and she will amaze everyone as she has amazed us from the beginning. ❤ 🙂 ❤

    Like

    • Debora · September 16, 2015

      That is steal your joy…I miss that typo ;)!

      Like

  35. Brenda Moon · September 17, 2015

    what ablessing your message and pictures are to me I agree a true little miracle from God Thank you for shareing

    Like

  36. debbiemcla · September 17, 2015

    Your blog and facebook page have been so informative and I have been praying for Annalise and your family since she was born! There always will be people in the world who are cruel. Annalise is so adorable and I love to read of her accomplishments! Keep the pictures and her progress coming. We love her!! ❤

    Like

  37. Kathy Boronat · September 18, 2015

    Love the pictures!!! She is adorable!! God is amazing!! Thank you so much for sharing your journey!!

    Like

  38. Shelly · September 18, 2015

    I seriously can’t remember how I came upon your blog; but have been following it from the beginning. It has been so inspirational to me. Thank you for showing God’s glory throughout your journey. Praise God that he has “humbled” the medical profession, yet again, through your precious daughter. News about her adventures always makes me smile. As a grandmother, I delight in watching babies develop their skills and personalities, and Annalise never ceases to amaze me. May God continue to bless your family richly.

    Like

  39. Andrea · September 19, 2015

    Love your faith and your blog! You and your family are such an encouragement! Annalise is such a sweetheart and you are such a beautiful momma! We are praying for you all.

    Like

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