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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First Family Vacation!

Well family and friends….

We made it through our first major family road trip/vacation this last week.

It was SO good seeing Kevin’s side of the family! Only his parents and one of his sisters have met Annalise before so his other 3 sisters got to meet her for the first time! 🙂 (We missed the other siblings though and we hope that y’all get to meet her someday soon!) It was such a special time and we are so grateful that we had the opportunity to do it!

Annalise did extremely well for being in a car for about 18 hours one way. (Don’t worry- we split the drive up in 2 days both times. ;)) She slept the majority of the way. The times she was awake though, she was thoroughly enthralled with her new friend, the zebra. She played with that thing every waking second. Once she even fell asleep with her arm through the rings that are attached to one of the legs of the zebra (super cute :P).

On the way down to Florida, when we stopped for the night halfway, we noticed that her head was a little swollen and squishy. When you have a shunt and your head gets swollen or sunken in, that’s a very common sign of the shunt not working properly anymore. Needless to say, we called her nurse. Luckily everything turned out to be okay. Her skull bones actually moved and changed shape, which was causing the extra “squishiness”. It was just a positional change thankfully and now that her new skull formation has set, the swelling has gone away!

Other than that, we had no other problems or worries! As much as we loved being on vacation for a week and with family, it was still really hard being so far away from home and the normalcy of it all. (Funny how I call life with doctor visits/appointments on a weekly basis normal. Oh the life of a special needs mother. :)) We did miss the comfort of our home and all of her doctors being so close.

There was one night when Kev and I got to go out for dinner, just the two of us. We have never left Annalise alone with anybody since she was born. One of us has always been in the same house/building/etc. with her at all times. It was nice to have that alone time with the hubby, but let’s be honest. My mind was definitely not at The Bonefish Grill. We BOTH even found ourselves turning around in the car to look back in the car bed on the drive there and back. Luckily, Little Miss had a good time with her NaiNai and aunts! 😉

Most of the week, we just relaxed and spent time with family. We did take Little Miss swimming for the first time with her big rubber ducky. We took her to the beach for the first time (Treasure Island). (I have never been to Florida or a beach either so that was fun to experience it with my little mini me!) We celebrated her First 4th of July. We watched home videos of daddy and his family. It was just a great time.

Once we got back Monday afternoon, we were right back into the daily grind. Well, except for Monday night. Annalise (and Kevin for that matter) got to experience their first tornado warning/sirens! Thankfully, there wasn’t much except rain and wind in the part of town where we live. Annalise slept through the whole thing. 😉

Tuesday we met up with her physical therapist. She has been coming once a month so far and she was so impressed with how much moving Annalise does. Annalise is a wiggle worm. No, that’s an understatement. The ONLY time she is still, EVER, is when she is sleeping. She is constantly just moving when she is awake. You can barely even hold her anymore because she just moves and wiggles and just always wants to go, go, go. (It makes for a fun tummy time though!)

Wednesday her regular nurse came to check up on her. She was impressed with how big little miss has gotten. Even though she only weighed 12 lbs., 1 oz., she was still happy with how good she looked. All her vitals were good and healthy as well!

Thursday, we had an evaluation for little miss through CCVI (Children’s Center for the Visually Impaired). (“CCVI offers a comprehensive program, including individualized therapy, consulting services, and supportive family education. Services are provided beginning in infancy through our home-based Infant Program, and continue on with our Preschool & Kindergarten classes, preparing children for entry into the public or private school systems. CCVI staff includes professionals in occupational, speech-language, and physical therapies, as well as in the specialized instruction areas of braille, music therapy, and orientation and mobility. “ -https://www.ccvi.org/therapeutic-services-0)

It was through their evaluation that we learned that her eyes are doing two different things. So they are not processing the same thing at the same time. It takes her longer to visually process things. For example, when she feels a toy… she has to feel it several times before she looks over at it. If she hears something, eventually she will look at it… just not right away. They said that they see her trying to look at things; it just takes her longer to focus. She also doesn’t stay focused on things for long before looking away. Because of these things, she was accepted into the program; so we will be having a teacher/specialist from there coming at least once a month (more if we want) from now on. They will also help teach us what we can do with her on a daily basis to strengthen her processing. They already informed us of several tips and tricks and what toys to play with for now until the next visit so we are excited to get that going!

Next week we are visiting her neurologist for the first time. 😛 I’m actually not quite sure why we are going (LOL). We had it scheduled back around 3 months ago when her tremors were high. Now she hardly ever has them but better be safe than sorry, right?

That about sums up what has been going on in the life of Annalise Hope the past week or so! Now, I suppose, it’s that time that everybody is waiting for. The pictures! 🙂 (I actually REALLY regret not taking very many pictures at the beach. -Sorry Jawanda- you aren’t going to see toes in the water.- We were just living in that moment, taking it all in, and completely forgot to take all the cool, touristy pictures. -Sorry Annalise- you aren’t going to be able to see yourself in the ocean as proof 😦 .-)

Anyways…. A couple days ago, I posted on our Facebook page this:

“I’ll be the first to admit on here. It’s not always easy being a special needs parent. Usually we only talk about all the good things and the milestones our girl is reaching… But truth is. Some days are just plain hard. Some days it feels like we are taking 2 steps back instead of going forward.

Yesterday I was working with Annalise during her physical therapy time and later on that day. She tries SO, SO hard to lift herself and move around but she just can’t (yet). Sometimes it is SO hard watching her struggle when I know other kiddos her age are holding their head up, sitting up, starting to crawl, getting ready to be put on baby food, etc. It hurts. It’s heartbreaking to see her wanting to do it so bad but just can’t.

How can something be so heartbreaking but so overwhelmingly good at the same time???

Truth is. I am SO incredibly proud of how hard she does try. She “isn’t supposed to be able to move/crawl” with her conditions. (I just know that she will be able to do whatever her tiny little brain wants her to do with the help of our Father.) Now… whether that stuff happens soon… or a year down the road, I know that God is good. He did not have to entrust me with this much time with our sweet girl anyways.

So even though my emotions get the best of me at times… I could not be any more excited to see such a small but fierce girl trying so hard to accomplish such an “easy” task for other babies.

I am so overwhelmed by the goodness of God. I am so relieved that I can cast my cares and burdens on Him and He has it all under control. (https://m.youtube.com/watch?v=bKuAMmTqUbs) He IS the anchor of my hope.”

I am CONSTANTLY reminded of this song lately (the youtube link right above this).

“When fear feels bigger than my faith, and struggles steals my breath away…. When my backs pressed up against the wall, with the weight of my worries stacked up tall. You’re strong enough to hold it all…. This war’s not what I would have chosen but you see the future no one knows yet. And you’re still good when I can’t see the working of your hands. You’re holding it all…. I’m finding there’s freedom, when I lay it all on your shoulders.”

How refreshing. How awesome is our God? How undeniably good is He? I am SO grateful for such a loving God. I am so grateful that He gave us our Annalise Hope. He is good- EVEN when we can’t see it or don’t believe it.

I just remembered… I have never posted a pic of her MRI from BEFORE her surgery! So here is one:

IMG_8530

Her facial features are on bottom left… side of profile. The bright white is bone. The light white is her brain and brain tissue. The black, taking up most of the head, was all the fluid. So you can see she has very minimal amount of brain/tissue. (Before surgery, when the nurses and doctor were looking where to exactly put the shunt, the nurses were completely amazed at how she was still even alive with that small amount of brain! :)) I would be VERY curious to do another MRI now that the surgery is done and see if it has “changed” since then!

HAVE A GREAT WEEKEND Y’ALL!!!! 🙂

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

http://www.gofundme.com/hopeforannalise