He Fills My Life With Good Things

Family and friends-
We hope you are all doing so well and having a great summer so far!

Annalise and I just came back from our first road trip! We had a mother/daughter trip while daddy was away at church camp. Going to my hometown to hang out with family was incredible. Annalise was of course spoiled by all and she loved being able to hang out with her cousins! We even got to go to one of my nephews T-ball games! We had a great time and are looking forward to being able to go again sometime.
Now that we are finally reunited with daddy, it’s time to cuddle up and relax…. Until tomorrow. πŸ˜‰ Early Monday morning, we are headed out and going to Florida!!! (So tomorrow starts laundry and packing.) Kevin and I have actually never gone on a vacation together- or had a honeymoon for that matter- so we are SO extremely excited for this opportunity AND even more excited to share it with our sweet Annalise! We will be spending a week with (most of) Kev’s side of the family and we cannot wait! God has blessed us so, so much.
I cannot wait to show you all pics when we get back. I’m pretty sure Annalise is going to LOVE the beach! 😜
Since the last blog post, we got to celebrate Father’s Day, celebrate her turning 4 months old, have her normal weekly checkups and we revisited Annalise’s neurosurgeon.
We loved being able to spoil daddy this Father’s Day. It was a great reminder on how our Heavenly Father is so loving and gracious towards each and every one of us. His love is unfathomable and so overwhelming. I’m so thankful God put Annalise on our journey because I have got to witness a side of Kevin that fills me with such joy. I don’t know if this is even possible, but I have an even greater appreciation for that man and who he is as a person.
Last week, we had a visit with the neurosurgeon to check up on her shunt. Because she is doing so well with having it and has exceeded their expectations, we don’t have to go back to visit him for another 6 months! (Praise the Lord!) We are so thankful that the shunt is working perfectly so far and hasn’t caused any problems! We will continue to monitor it for infections and blockage but for now we are so appreciative for our neurosurgeon who apparently knew what he was doing. πŸ˜‰πŸ˜œ
Our little girl is finally becoming slightly chunky and I love it! Baby fat rolls are seriously the cutest thing. She is almost to 12 pounds and is 24.5 inches long. Although most of her NB size clothes still fit, there are some 0-3 size clothes that are starting to fit! She needs to chunk up just a little bit more though because all of her adorable summer outfits are size 3! And I want to put them on her so bad! 😜
Annalise continues to amaze me each and every day. I absolutely love being able to stay home with her. And that is possible mainly because of you guys donating to our gofundme. I cannot even muster up the words to explain how grateful I am for that. Being able to watch her do things she was never supposed to do, give her the therapies and attention she needs to gain the strength and ability to continue doing things, and helping her learn is more remarkable and rewarding than I ever thought possible. She has taught me so much about myself and about our God than any other situation that I have encountered. I will forever be grateful to the people that helped make that possible. So thank you.
Although the journey isn’t always easy, I have so much to praise God for. I know that you do too. Remember- no matter where your journey takes you… No matter how hard or how difficult… You can always count your blessings. Recognize that He fills your life with good things. He loves you and cares so much for you! That will never change. (Psalm 103:1-5)
I’m so excited for this next week and I can’t wait to share it all with you when we get back! Until then… Here’s the last couple of weeks in pictures πŸ˜‰

Have an amazing weekend and week until we get back to update you again!

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Nostalgia

Today we went back to visit the place and some of the people that forever changed our lives almost 4 months ago. Talk about being nostalgic.

On our way to the hospital, Kevin turned to me and said, “Last time we were driving here, you were straddling towels and leaking everywhere”. (Thanks babe… That is EXACTLY the image I wanted to remember πŸ˜‚) But then, I looked back in the backseat and saw our sweet but sassy girl looking around. We started talking to her telling her where we were going and how last time we drove there, she was getting ready to make her debut. That then led to the conversation of how she came early (before her scheduled C-section date) and we realized just how “Annalise” that was. We were reminiscing about how all during the pregnancy, it was always her way or no way. How fitting it was that she said “no way am I waiting until the day THEY have planned. This is about me!” and came 3 days before the planned day. Typical Annalise.

Walking into the birthing center, all the memories and emotions flooded in…. the anxiousness, the fear of the unknown, the worry, the excitement, all the overwhelming feelings, and the happiness of finally meeting our daughter AND being able to take her home.

We were greeted by one of our favorite people we have had the pleasure of walking alongside with on this journey. (We are forever grateful for all you have done for us, Tricia.) We then went up to see some of the nurses that took such good care of us while we stayed there. We even ran into my OB while we were there. As we were getting into the elevator, Kevin said “Hey! That was our room!” It took everything in me not to run right back into that room and reminisce over every little thing. Every little detail.

We never thought that we would be where we are now. We never could have imagined how far we would get… How much time we would have with her. We are so thankful that we serve such a loving, sovereign God. We are so blessed!

This last week, Annalise started doing a few new things! One of the biggest accomplishments so far is that she figured out how to roll from her side to her tummy!!! We were so incredibly proud the first night she did it! (And every time she does ;p). She figured out how to smack her lips- cutest thing ever. She found her hair for the first time. And now she is always pulling so hard that she gets mad. Also the spot where she pulls, right behind her shunt, is always sticking straight out now. πŸ˜‚ The last major first is she is starting to teeth! Oh boy. No wonder she has been a little more… Feisty… this last week!

On June 10th, we went and saw her pediatrician. Annalise weighed 10lbs 15 oz and was 24 inches long! We are slowly but surely getting back on track with her weight! She got her 4 month shots (so add that on top of getting her first tooth and that explains why she has been extra cuddly and cranky) that day and took them like a champ!

Unfortunately, the car seat test did not happen because the car seat we bought her had “too much padding” which doesn’t allow “for her head to grow”. So we have to buy a different one and get that tested out later. So until then she will still have to use her car bed.

We are getting so excited to take a couple road trips at the end of the month to visit our families! It’s so exciting to be able to “show” our little girl where we grew up or where our family lives now! Who woulda thought???

To end this post, I want y’all to know how thankful we are for each and every one of you. All your thoughts and prayers have been so greatly appreciated and felt. We are so thankful and excited that we even get to share this journey with y’all. We pray that somehow this story touches you in a way to grow deeper in your faith, to remember to glorify God in every situation or circumstance, and to remember to anchor your hope to the One who has already scripted the perfect ending.

We love y’all! We pray that you have a blessed weekend and a summer full of cherished moments!

(And no- I did not forget to post the most recent pictures! Here ya go!!! :))

 

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June ALREADY?!?

Wow! Where has the time gone?! It’s already JUNE!!! Which means our sweet girl is almost 4 months old!!! How can that be?

To start off this blog post, I am going to apologize for a couple of things. πŸ™‚ First, I’m sorry to all of you who only read the blog and don’t/can’t follow our Facebook page (https://www.facebook.com/pages/Prayers-For-The-Pragels/1543499849231425?ref=aymt_homepage_panel)… because you guys have to wait longer for updates than the Facebook people πŸ˜‰ (It is easier to make small updates on Facebook than write a whole blog post every so often.) Secondly, I am sorry to all of you Facebook followers because you will get repeated information/pictures! πŸ˜‰

I believe the last time I posted on here was when she had finally hit the 10 pound mark and we had just gotten our 3 month pictures done with her! πŸ™‚ Well…as of June 1st, she now weighs 10 pounds 8.5 ounces! We are very slowly gaining the weight she needs! We had a little bit of a drawback this past weekend with that though. We believe she was fighting a little cold/allergies so she wasn’t eating very well and was sleeping most of the weekend. Because of that, she wasn’t gaining the amount she should be. But! Thankfully we are over all of that and she is back to eating normal! πŸ™‚ Whoot whoot!

We met with our therapist for the first time this week and she was impressed with how well she is doing for her age and circumstance. She helped us with ways on how to help strengthen her muscles and how to help with getting her neck muscles going to where she can lift her head on her own. Annalise tries SO hard to lift her head and gets mad when she can’t. But upon thinking about it… her head probably weighs 1/5 of her weight. So imagine taking 1/5 of your weight and putting it on your head. Thinking about that makes me even MORE proud of how hard she tries!

Next week, we see her pediatrician for her 4 month wellness check up and 4 month shots! Hopefully she is a troop like last time and not even flinch/cry for her shots! That makes this momma feel better! πŸ˜‰

Some (maybe) exciting news is that we have been talking with our nurses/therapists/doctors about FINALLY moving her out of her car bed into a carseat!!!! We are hoping in the next couple weeks we can get approval and test it out! Things would be SO much easier and I think Annalise would like it better. ;P

Some other REALLY exciting news is that I am testing out my faith and getting over my fears. πŸ˜‰ In several weeks, when Kevin is at summer camp with his youth group kiddos, I am going to make the trip to my hometown to see my family! EEEKKKKK!!!! This will be her first “long distance” trip ever! (It’s about a 2.5 hour drive there!) We will see how she does with that to prepare us for our even LONGER trip the following week! Yes… 2 road trips for little miss within a couple weeks. Talk about one stressed out/nervous/worried/super excited momma. The following week after camp, we are making a trip to FLORIDA!!!! It will be my first time there and it will be little miss’s first time there! We are SO excited to take her on this (maybe) once in a lifetime trip to see Kev’s family! Only his parents and one of his 5 (plus 2 significant others ;)) have met her so it will be SO good for the other siblings to FINALLY meet her!!! We are beyond thrilled!

Little Miss Miracle (as some people call her ;)) has been doing so well still! Her vitals are always good and she just keeps getting sassier and sassier. Her personality is definitely showing lately as you will see in her current pictures. She is always on the move- never sitting still. She is doing so well at grabbing onto her toys on her play mat and she loves being outside! We can’t wait until all this rain is gone so we can spend more time outside!

Anyways… June has been deemed as “Hydranencephaly Awareness Month” so here is just a little bit of info to remind y’all what exactly little miss has! (Remember that she does have hydrocephalus as well ;))

“Hydranencephaly is a rare neurological condition which presents itself as the absence of the cerebral hemispheres to varying degrees. The absent brain tissue is replaced with cerebrospinal fluid (CSF) which may or may not accumulate to the extent of hydrocephalus, increased fluid within the cerebral cavity that is easily managed by placement of a shunt. Though outdated, last statistics display an occurrence rate of approximately 1 in 10,000 babies worldwide and 1 in 250,000 babies in the United States alone (data is relatively skewed due to the inaccuracies of reporting guidelines; diagnosis in utero resulting in termination, still birth, or abortion may or may not be represented). To date there is not often a definitive cause, no known cure or preventative, and very little optimism available for those diagnosed by medical professionals. Such little amount of research is done on the condition since it has been deemed “incompatible with life”.Β (You can always visit this page for more information!Β https://www.facebook.com/globalHYDRANENCEPHALYfoundation?pnref=story)”

“Children who are given a diagnosis of hydranencephaly are given up on far too soon, do not live the quality of life that children who are plugged in to our family resource network or another means of proactive, positive support do. Doctors who tell parents thatΒ there is no hope for a quality of life worth living are essentially killing these children before they’re given a chance at the life they deserve – without hope, there is nothing.
If there is anything you need more on this journey of unknowns and medically subjected impossibilities – it is hope. Hang on to it and never let it go.
Read more at Journey of the Bees:Β http://braydenalexanderfoundation.blogspot.com/
Then check out this post from 2011 for more reminders to hang on to hope:Β http://braydenalexanderfoundation.blogspot.com/2011/11/flashback-friday-cants-wonts-and-other.html

There is always hope! In every situation or circumstance. Our hope in the Lord is what we hold on to and it has been SO rewarding. Our Annalise Hope is almost 4 months old and going strong!

I can’t even stand the thought of knowing there are probably SO many people who have been given a diagnosis of some disorder that is “incompatible with life” and have given up. Without hope and knowledge, lives that could have thrived and changed your world (for the better) have been lost. So heartbreaking.

Well… I’m not sure what else to update y’all on so I guess it is just time to put the pictures up πŸ˜‰ Plus… little miss is smacking her lips at me telling me it’s time to feed her hehe! So here are some pictures since the last time we put some up!I hope y’all have a great rest of your week and a great weekend! Love you all!

(http://www.gofundme.com/hopeforannalise)