We Have A WHINER?!!

Family and friends-

Where do I even begin?

I feel like it has been forever since I have updated the blog but it has only been a couple weeks. I do have to apologize for all those who only have the ability to read the blog because our Facebook page (Prayers for the Pragels) gets updated fairly frequently. That is the main reason why I don’t blog as much. I feel like I am just repeating myself! 😉

Anyways… last time I updated y’all we had just gotten back from our trip to Florida and had met up with our PT, nurse, and had an evaluation with CCVI. Last week, we went and saw her neurologist for the first time since her diagnosis changed from HPE to Hydranencephaly. We had originally scheduled this appointment about 3-4 months ago when her tremors were still pretty bad. We wanted to stay on top of those and make sure we caught them beforehand if they were to turn into seizure activity. But she really does not have a tremor anymore. Occasionally her legs will still do it… mainly when she is waking up and stretching.. so nothing to worry about! 🙂 Our neurologist was so impressed with how well Annalise is doing and how active she has gotten! Her mouth may have even dropped when I told her that Annalise can cry like a baby when she is hungry! The best part about that visit was when the neurologist turned to me and said something like: “Your family is what I base things off of now. When I am talking to new families in similar situations… I use a range of situations of what could happen instead of just what is said in the textbooks.” HOW COOL is it that Annalise is proving to the medical staff that things don’t always “go by the book”!!! There IS Someone GREATER who is the Ruler and Sustainer of life!

Our nurse still comes on a weekly basis and Annalise’s vitals are always so good. She is continually gaining weight (last time the nurse was here, Annalise was up to 12 lbs 10 oz!) although not as consistently as they would like. Contrary to popular belief, her head has NOT gotten smaller! 😉 Her head has been the same size since surgery (which she had at 5 weeks old and is now 5.5 months old!). It just appears to be smaller because her body is finally, but slowly, “catching up” to her head. We are told that it should catch up to where it should be almost completely proportionate and then it will continue to grow “like a normal child”. Her skull is supposed to fuse together like a normal child (it will just take longer) but it will always be misshapen. (We could do reconstructive work on her once she is about 2 years old but that won’t be discussed until then. ;))

Last week, we went to a physical therapist at Children’s Mercy for an evaluation. The program we are in right now is only coming about once a month and with how active Annalise is getting, I feel like it’s necessary to do more than just that. If our insurance covers this therapy, we will be going there every other week for a couple months. Then they will reevaluate her to see if she needs more or less. We are continuing with the other program as well since we have been with them for a while now but just trying to get a little bit extra in. 😉

A week or so ago, I posted this on our Facebook page:

“I want y’all to know that I am praying for each and every one of you (on a daily basis) that come to this page.

We have been so open about our journey with Annalise Hope for one reason and one reason alone- we want to bring glory to God.

I pray that all of you who hear our story will see we have a greater hope and a greater peace. I pray that you will see God is glorious no matter what and that you will see that all we really need is Jesus.

I pray that things would be laid on my heart that some of you may need to hear at some point. Here are a few thoughts from the last week:

Sometimes we feel like we are drowning in life’s busyness or feel like things are piling up on us. We don’t feel like God is there or listening to us. But He is. He has the perfect plan and a purpose for all of your trials and burdens. Just hold on to the hope that He is always in control. He is so good to us.

Sometimes we feel like we don’t deserve a second chance, deserve to be forgiven, or deserved to be loved unconditionally. Truth is… None of us truly deserve that stuff- but God gives it to us anyways. Be thankful that you can be renewed in Christ and that He loves you unconditionally.

I pray that wherever you are on your journey in life, that you understand that God is for you, He cares for you, and loves you. The journey won’t always be easy but it is always worth it.

Our unexpected journey with Annalise isn’t always easy but it has been beyond worth it.

I mean… How can we not be grateful when we get to see Annalise’s smiling face every day.”

I still mean every word of that.

On July 17th, I posted just a small update with her 5-month-old pictures:
“Our little 5-Month-old girl is very, VERY squirmy and wiggly. She is becoming more active and expressive and responsive to mommy and daddy and she always wakes up so happy! She figured out that if she tilts her forehead down during tummy time (so her face is off the ground) it is easier to scoot forward. She is starting to find a little bit of her voice- occasionally we will get sounds out of her. She is finally starting to wear size 0-3 clothes and she LOVES being able to “sit up” (of course only when we hold her like that).”

Little Miss is starting to look so grown up and big. I get told she is looking more and more like her momma every day. (I’ll take that compliment ANY day 😉 hehe!) Her hair is growing exponentially faster than her feet. (HA! If you see her on a regular basis, you know that her feet have literally only grown MAYBE an inch since she was born. She STILL does not fit into NEWBORN sized shoes!) Her little rolls on her thighs and her double chin are getting more noticeable and more adorable. She has a new favorite thing to do- she likes to blow tiny little bubbles. She will be laying under her play mat and we will look down to see her mouth covered with little bubbles. Also, we have been trying to teach her how to play “peek-a-boo”. She always brings her hands up to her face and covers her eyes, so every time she moves them down, we say peek-a-boo. This has now turned into a morning routine. Every morning when we get her out of her crib to change her, she will automatically start playing. It may be one of the cutest things ever! 😉

And starting today, we hit a new milestone… we will see if it sticks with her though!!!!

I posted a video onto our Facebook page this afternoon with this description:

“There are SO many emotions when I watch this video over and over and over again.

When I was recording it, I was trying SO hard not to laugh and cry and scream all at the same time.

Laugh because FOR THE FIRST TIME, Annalise was WHINING at me for turning her on her side to where she could not roll over! (We were doing tummy time and she has to have breaks every so often so we do not overwork her. This is because she does try so very hard to lift her head and move.) It was so hard not to laugh at how stinking cute she was at getting mad at me like that for the first time!

Cry because that is the LONGEST she has EVER used her voice! People ask me all the time if she cries… VERY RARELY. She used to cry every time she was hungry and that was it. She has maybe cried over a dirty diaper once or twice in her 5 months of life. Lately though, she gives us other clues to when she is hungry (and we know her schedule) so she really hasn’t been crying that much. So when she does… we almost encourage it to remind her that she DOES have a voice and that she CAN use it!

Scream because I was so excited to hear that voice AND because it means that she is processing that she can whine when she doesn’t like/doesn’t want something! Being told that she won’t ever show ANY emotion and then hearing her actually whine when something doesn’t go her way… makes me want to jump up and down and scream for joy! OUR GOD IS SO GOOD!

It’s the little things that most parents don’t even think twice about that bring us the most joy. Cherish every moment. Be grateful for what you do have and do get to experience. Remember that God is Sovereign and His plan is always perfect. He is the sustainer of life.

We are ALL so blessed.”

(https://www.facebook.com/1543499849231425/videos/1606238839624192/?comment_id=1606248409623235)

I have watched that 2 minute video probably about 15 times now and every time I do… I have a huge smile on my face with tears in my eyes. “To think that what sometimes frustrates parents (the cry of their babies) is music to your ears! Ain’t God great!!!!!” (A comment on the video that couldn’t be more true! ;))

Annalise is SUCH a fighter (and always has been) and is constantly doing things that we were told would be impossible. There is literally only one reason for that and it’s because of our Lord. There is no medical reason why she is doing so well. It is all because of our great Physician and loving Father.

We would not be where we are without all the prayers, love, and support from y’all! There is power in prayer and y’all have made this unexpected journey what it is. We cannot thank you enough for investing your time, money, thoughts and prayers into our lives.

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

I’m sure I am probably forgetting things to add but since Little Miss is waking up from her nap, I got to go play with her. 😉

As usual, here are the links to our sites:

https://www.facebook.com/pages/Prayers-For-The-Pragels/1543499849231425

http://www.gofundme.com/hopeforannalise

And like always…. here are some of your updated pictures! (There are ALOT here but not nearly as many as I have that are so good as well! She is just too photogenic. And I may be obsessed with taking pictures!)

Have a GREAT week and God bless!!!

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5 comments

  1. Teresa Mathews · July 27, 2015

    Thank you so much for sharing this with us. I cannot tell you how blessed I feel being part of your wonderful journey. It is so encouraging to see the Mighty Hand of God work in your beautiful babygirl’s life! I love it when our God shows up and proves that doctors do not know everything!

    Like

  2. rach666Rachel · July 27, 2015

    Hi there ,I just wanted to say thank you for sharing your story.My names Rachel I live in New Zealand I’ve shown my friends your wee girl and speak of her often .She is a true fighter and I’m sure she will grow to be a strong women as she has a strong mum to take after .

    Like

  3. Kerrie Marquart · July 27, 2015

    Little Miss is absolutely adorable and more beautiful every day! Thank you so much for sharing all the wonderful photos and her progress! ♥

    Like

  4. ms_patpat@hotmail.com · July 27, 2015

    What a beautiful happy baby. Loved all the photos.

    Like

  5. Rebecca · July 28, 2015

    Loved the video! What a precious moment! Thanks for sharing!

    Like

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