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.
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.
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 😛
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