Tshirt Fundraiser

Hey hey! 

I just wanted to write a quick note to everyone who reads the blog and can’t see our Facebook page! 

RIGHT NOW our tshirt fundraiser is going on! The “event” is only open until June 17th… After that shirts canNOT be purchased. 

It has been open for 10 days now and we have reached 215 shirts sold! How cool is that?!? 

To purchase a shirt go to 

https://www.bonfirefunds.com/hope-for-annalise 

*****ive been told that the above link isn’t working for some people… So I’m gonna post it in a few different ways and see if one of them works then ;)*****

https://www.bonfirefunds.com/hope-for-annalise?utm_source=mailgun&utm_medium=pledge_notification&utm_campaign=fund_profile 
https://www.bonfirefunds.com/hope-for-annalise
There are unisex tshirts, a ladies slim fit tshirt, long sleeve shirts, sweatshirts, and youth size shirts! 

Just some facts about the fundraiser/site that have been asked:

– the tshirts are a blended fabric between polyester and cotton so they do fit true to size! (The ladies shirt is meant to be more fitted though.) I also believe they are preshrunk so there should be no worries there. Also, because they are blended they are soft and comfy! They are a better quality shirt than a normal “Gildan” brand tshirt as well! 

– there are youth sizes! You may just have to scroll through the different shirt options to find it!!! 

– there is international shipping… It just costs a little extra (I believe it’s $11 shipping instead of $5) 

– you do have to submit your card info for payment BUT you do NOT get charged until the event is over!!!! So even if you can’t pay right now, you can still place an order since you won’t get charged until the end! ;) 
Thank you to those who have supported us throughout our journey. We are continually grateful for all of you! 
And because I can’t write a post without a picture or two…Here are some I took today to help “advertise” our tshirts: 

Annalise was really excited to show off her tshirt until she realized that she would be really sad for those who missed out and didn’t buy one!!! 


And then of course we just had to snap a few Inbetween ;) 

Now we are off to go to the church softball games so we hope you have a great week! 
May the Lord bless you, keep you, and give you peace! 

Hello beautiful people! =)

It has been a LONG time since the last blog post.

WHERE DOES TIME GO?!?! Why does life happen so fast?!?😉

 

The quickest way I know to update y’all is by coping and pasting information from our Facebook page so here are some of the major, fun things that have happened since the last blog post! =)

 

APRIL 6TH

Annalise is all about rolling and pushing up onto all fours. She is REALLY trying SO hard to figure out how to crawl. (She does move… Just with sliding her head since she can’t lift it.)

She’s also been figuring out that if she looks certain ways to find her toys, she CAN reach for them or move towards them!!! This is a huge developmental step!

She thinks it’s funny to rock herself side to side and always makes sure you are watching her when she does!

She thinks it’s really funny when you lay down next to her to play!

Clapping is still one of her most favorite things and now “coloring” (an app on the iPad) is also her favorite! Her first painting is already hanging on our fridge!😉

Yesterday she had an OT appt and did pretty well with her eating and chewing! She’s still in the same place regarding baby food. She hasn’t grasped the concept of chewing or biting so we are trying to really work with her on biting/chewing and of course her swallowing.

Today was her weekly vision/special Ed therapy session. She did really well with sitting in her chair and wearing her vest! (Annalise got a Benik vest to help keep her core straight when doing sitting exercises.) She even was manipulating her hands/arms into purposeful movements (Instead of just flailing both hands to do stuff).

Friday morning we have a very long meeting with her entire “team”. They like to do a yearly revisit with all the Drs to kind of “reassess” and talk about what to continue to do, what else we need to do, concerns/questions…. The whole shabang.

 

APRIL 8TH

Today we spent 2 hours meeting with most of her team to go over everything.

This is the major stuff that happened today:

Annalise weighed in at 19lbs 1oz and was 29.5inches long!

We first met with her dietician. Since she just got completely switched over to pediasure last week (from infant formula… We were weaning her off slowly so we didn’t mess up her digestive system too bad ;)), we are supposed to continue our plan we had in place last time we met (which is 2 pediasure bottles a day, a little bit of salt to get enough sodium in, her multivitamin, and at least a bottle (8oz) of water a day). Next month, we go back to see if it’s working alright, to see if she is gaining her necessary weight (she’s been at a plateau for awhile now so they are wanting her to get back on a curve of weight gain) and all that jazz. If it’s not enough, we will have to switch “formulas”.

We even just got the okay today to give her some regular whole milk and orange juice ON TOP OF the pediasure (she has to have 8oz. of something other than pediasure…it was supposed to be water but she’s not taking it very well so it can be water, milk, or oj to make up for that 8oz per day.)

-We don’t think she can taste since she’s never had any reactions to different “flavors”. We think she reacts to textures so the thinness of water compared to her formula/pediasure throws her off.-

Then we met with the lady who takes care of needs like wheelchairs/devices and what not. I talked to her about other items we could use for home (that our in home PT and CCVI therapist would like for her). She’s going to order those things through insurance and if they get denied then our state programs can try and get them through their funding sources.

Next we saw her pediatrician. I told her how we have been noticing her being raspy sounding when she’s sitting more in the last couple of weeks. We thought maybe it was just her posture and not having good core strength. But since we have been using the Benik vest and she still does it… We thought it could be enlarged tonsils or adenoids blocking the airway.

So…. She’s gonna put in a referral to the ENT dr just to check her tonsils and adenoids to make sure that’s not causing the problem. They will also check for reflux, which can cause the raspy sound when sitting as well, to see if she needs a reflex medicine to help.

We also talked about trying aquatic therapy! We don’t know if she will be able to or will like it but we wanted to give it a try… so she put in a referral for that as well! =)

We talked to our social worker as always and then after that she got her tetanus and pertussis shot. (So she won’t have to get another shot for awhile now. Yay!)

 

APRIL 20TH

A year ago today, Annalise visited the eye doctor for the first time!

During our pregnancy and the beginning of her life, they always told us that there was a HUGE possibility that she would be deaf and blind since she was missing so much of her brain.

–story time!– We will NEVER forget when we were at the hospital when she was born and a specialist (who we had never met before… And who we refer to as “Dr. Bad News”) walked up to Annalise, turned the flashlight on her iPhone on, ran it across her eyes ONCE for ONE second…. Then said “YUP! She’s blind and deaf.” (insert eye roll here ;))

(Needless to say, we haven’t seen Dr Bad News since.)

At that appointment, we found out that she did in fact have all the structures of her eyes… Including the optic nerve (which is supposed to be located in the part of the brain she is missing!!!)

And as you can see… A year later… She still has those beautiful blue eyes and better vision than anyone thought possible!!! =)

We are so incredibly grateful for the team Annalise does see and will continue to see! Even though they had their “doubts” at the beginning, they have never ruled out anything. They no longer focus on the prognosis of death and instead focus on giving her the best life possible now.

We are so proud of our girl and so blessed by her. We can’t wait to see what else she accomplishes!

 

MAY 5TH

Today we went and saw Annalise’s neurologist for a routine checkup that we do every 4-6 months.

I asked her if I could snap some pics of her last scan that was done back in December from her seizure stay. (We will do a new scan when she turns 2.)

I know a lot of people ask and wonder what a scan looks like, so I figured I would post them!

We also asked her neurologist if she were to give us a percentage of how much brain Annalise has… She said that since her brain isn’t shaped normal (structurally) it’s hard to give that number. BUT what she did say is that it is LESS THAN A THIRD. (LESS than 33%).

She couldn’t get over how well Annalise sees and tracks things either because she has NO part of her occipital lobe (which controls all things seeing). That’s one of the things that still baffles her because technically Annalise SHOULD be blind without that part of the brain.

Going to neuro appointments is probably one of my favorite visits because it ALWAYS reminds me that we serve a God who is SO Sovereign. He is in control of ALL things. He is so, so, so good.

 

MAY 14th

Hey hey!

WE NEED YOUR HELP/IDEAS/THOUGHTS!!!

A sweet friend of mine mentioned the other day about a fundraiser idea she had for us. This idea has always been in the back of our heads since Annalise was born (since my sister was debating that instead of the gofundme) and we know several people who have done it for their own needs…. We just didn’t know if there would ever be enough interest to go through with it.

We have always had our gofundme page for donations BUT that has been up since BEFORE she was BORN. The money that has been raised through that is SO close to being used up. (And I mean within a couple months!) I was the main income in our household (while Kevin finishes up school) and as all of you know… I quit my job to stay home with Annalise and give her the best life possible. We have made every adjustment we can to make that donated money last as long as possible. But when you think about it as an income…. That amount is LESS than what I was making in a year. That money has been used for bills, living expenses, and everything Annalise needs (formula, diapers, clothes, etc.)

If we go forth with a NEW fundraiser idea, our hope is to raise enough to continue what we are doing until Kevin finishes up school! (Which is NEXT year!!!)

SO!

We are wanting to know if there would be enough interest in doing a TSHIRT FUNDRAISER?!?!?!?

We can design our own unique shirt and almost all of the profits go to us (of course there is a base cost for the shirts and printing BUT the more shirts that are bought- the lower the base cost- which means more profit for us!)

If we hear positive feedback about this idea, then we would LOVE to hear what YOU would want to see on the shirt!

— IS THERE A WORD OR PHRASE THAT YOU ASSOCIATE WITH ANNALISE AND OUR JOURNEY? —

Of course, the first phrases that come to our minds is “Hope anchors the soul” or “Hope for Annalise” BUT if we do this, we want something on our shirt that YOU ALL want to see and would buy!

PLEASE PLEASE PLEASE comment on this post and 1)tell us what you think and if you would consider buying a tshirt and 2)give us ideas on what the shirt should say!!!

OH!!! AND!

I do have a few FUN ideas for if we do go forth with this fundraiser….

Like…. maybe if we reach certain amounts of shirts sold, we will give out different “prizes”???? Maybe whoever buys the most shirts, will get a really good surprise????

(Just throwing this in here just in case there are people on the blog who don’t have facebook and want to throw their ideas in ;))

 

 

OKAY! Those are all the big updates from our page. =)

 

Annalise is still continuing all her therapies and weekly visits!

Home health nurse is once a week, CCVI (her vision therapies) is about once a week, Infant Toddler (in home PT) is about once a month, center based PT through Children’s Mercy is every other week, OT through Children’s Mercy is about every 6 weeks… we have our first aquatic therapy session in a couple weeks so we are excited to see how Annalise does with that as well! We have even talked about starting her with a speech therapist here soon!

 

Today we went and saw the ENT doctor for the first time! We went to see them regarding her tonsils/adenoids and reflux. For the past several weeks, when she sits she has become raspy so we were checking to see if those were the reasons why. They did a scope to check it all out. Her tonsils and adenoids are small and just fine! So nothing to worry about there! She did a very tiny amount of reflux… the doctor called it “cobble stoning” since it was a line of tiny little bumps “like a cobble stoned street”. It was nothing serious and doesn’t require any type of reflux medicine so that was good! So what we have come to the conclusion to is that the raspy sounds are just due to her extremely low muscle tone. The muscles in her throat just aren’t strong enough at times and “collapse”, making the raspy breathing sound happen. Soooo… the only way to “fix” the raspy sounds is just to find a position where she doesn’t do it.

 

While we were there, we also did a hearing screen test since she has never had one done! Typically they do a newborn screen after they are born but since our scenario was different, she didn’t have any of the normal testing done. She passed 2/3 on her left side but failed her right side (the side of her shunt). BUT!!!! They did another test to see if there was anything “blocking” her eardrum preventing the sound waves to accurately read the test. Because she has been a little congested and now teething again, that congestion was indeed blocking her eardrum. So that “failed” test wasn’t necessarily completely accurate. Since she has always responded to sounds, they aren’t worried or concerned about her hearing. We will have to do annual hearing tests though just to keep checking on it!

 

Right now since we don’t have her wheelchair, we keep her old stroller and infant car seat in our trunk at all times so that when we run errands or go places, we put her back into the infant seat in the stroller. She can lay in the stroller by itself, IF we have tons of blankets surrounding her and making a good support system. SO it is MUCH easier just to use the old car seat still since it always provided a good support system for her.

 

BUT GOOD NEWS!!!!

Today while we were at the ENT, I GOT THE CALL!!!!!!

Her wheelchair is coming THURSDAY!!!!!!! So in just THREE days, they will be bringing it to our house so that they can adjust it and show us all the tricks! YAYAYAYYAYAYYAYAYAYAYAY! Can you tell just how EXCITED I am?!?!😉

 

Annalise has been doing really well with being in a siting position more frequently. She’s FINALLY at the point where she will sit tall for longer periods of time now!!! Before, as soon as you would sit her in your lap or in her chair, she would slump almost right away since she has such low muscle tone and not a lot of good core strength. I think she’s finally starting to like sitting and exploring her world that way now! YAY!

 

Along with that, her neck muscles have gotten a lot stronger! You can get her to control her head for seconds at a time when she’s really focusing!

 

Another SMILESTONE that we were just talking about with her PT at Children’s on Friday… is that when she drops a toy, she has been looking for it. All babies start out by thinking that toys “disappear” when dropped or out of sight and eventually they start realizing that they just have to look down or around for it. So we have finally reached the stage where Annalise KNOWS that it’s still there, she just has to find it! WOOHOO!

 

She continues to be our incredibly happy girl, always smiling and talking away (for us but never for anybody else- hehe!). She is all about her toes- again! I think it’s because she’s starting to teeth again so anything in the mouth is a good thing! ;P She still claps, she still reaches for things, she still rolls fully, she still tries to scoot around, she still tracks things, and she still thinks the weirdest things are funny.

 

AND GET THIS?!

 

She’s been starting to show MORE emotions!!!! She will occasionally let out little whines and “cries” when she’s mad or hungry! SAY WHAT?!?! The last few days she’s let out a lot more of it due to her teething and it’s so cute! Yup. I said it. The face she makes when she does it… the little wrinkled nose, squinty eyes… oh so cute. Call me crazy!😉

 

Well… I think that is everything… everything I can think of anyways😉

 

We hope you all have a GREAT week and we can’t wait to show you her new ride later this week!!!!!!!!!

 

As always… here are all the pictures since the last blog post!

 

Facebook page: Prayers for the Pragels or you can search @hopeforannalise

GOFUNDME page: http://www.gofundme.com/hopeforannalise

We will let you know soon if and where to order t-shirts!!!!🙂

GOD BLESS!!!!!!!

 

Big News?

Hey y’all! =)

 

This blog post will have some updated info on how Annalise is doing and what has been going on in the past month….BUT… it’s mainly to tell you about our exciting news!!!!!!!

 

So let’s start with the updates!😉

 

Annalise went to the eye doctor at the end of February to check up on how she has been doing since she got her glasses.

Her doctor explained that she does have a diagnosis of hyperopia (farsightedness)… but the glasses are to help her eyes focus on near space (as that is where she needs to functionally use her vision at this stage of development).

The great news- Annalise’s optometrist saw improved fixation with near vision when she was wearing them!

He explained that the glasses do not affect her distance vision though… so when she is wearing them, she should have close to normal distance AND near vision.

It is recommended that she wears them at all times since it eases her eyes at trying to focus on things by themselves.

For the future… He wants to monitor and check back every six months to watch for RX changes as she grows.

So now it’s just a matter of getting her to wear them at all times!😉 She has been doing better since the seizure… But we have noticed that after about 15-20 minutes of wearing them, she “spaces out”. That’s why we have been using them in segments, giving her breaks in between to readjust, but specifically using them during reading time and working with visual apps.

She has gotten A LOT better with wearing them but once she is done with them…she takes them off and either throws them or eats them! LOL!

 

This past week was a HUGE week for little Miss!!!!

 

First of all…. She got measured and assessed for her new “ride”! Insurance considers it a “wheelchair” but it looks like a stroller that has a super support system exactly where she needs it. We can’t wait to get her Zippie Voyage! (A couple of our other hydran friends have it and love it! :))

It can take up to 90 days to get it since it’s designed for her needs and size though. So we will just have to use a regular stroller until then. Luckily though… The Voyage should last her and fit her needs for the next 3 years or so… until she outgrows it and needs a bigger one.

 

Secondly- She passed her car seat assessment… So she is officially in her new convertible seat! She had outgrown the infant one that you can take in and out of the car due to her head size… so we had to switch to the one that stays in the car.

 

The next big thing that happened this past week was on Wednesday (March 16th, 2016). This was the day that she wanted to start learning how to roll from BELLY to BACK. (She has been rolling from BACK to BELLY since last summer but has never wanted to learn the other way since she likes tummy time! Also- she has done belly to back in her crib a couple times in the middle of a night a few weeks ago but that was the only time she has.)

I am HAPPY to say that now (after a few days of practice)… She is FULLY ROLLING without ANY problems. YAY!!! She’s finally our Rolly Polly!

 

The final big smilestone Annalise reached this past week was using MORE than one word at a time!!!!

 

—Side note: I’ve been saying that Annalise has been getting more vocal… She’s been trying really hard to make different sounds and noises. She has said “mama” or “mom” for awhile now. She’s said “dad” or “dada” a handful of times as well. We have even heard simple words like “hi”, “yeah”, and “no”. The best part is when she uses them in context (which is rare). Just the other day though, I was playing peek a boo with her and when I stopped for a little break, she looked at me and said “again” (for the first time) and smiled. The look on my face after we heard that was probably priceless. ;P

OH! This is the best one yet…. Last Friday- she was being a little goober and I flat out asked her “are you going to be a booger today?” and she rolled her head towards me, verbally said “yeah mom” then rolled away. (That was the FIRST TIME she had put TWO WORDS TOGETHER! Kevin and I died laughing!)—

 

Saturday morning, Annalise decided to try and mimic one of our questions to her!!!! She tried so hard to repeat “how are you doing?” and it is probably one of the cutest things we have heard!😉

 

 

So between moving up to the next car seat, getting her new ride, learning to roll, and using more words and mimicking us… she managed to do that all while having some congestion/snotty nose problems! She’s slowly getting better though and acting more like herself. We think it was just a combination of teething and weather changes/allergies causing her to be a little “sick”.

 

 

Now that we have the big updates done…. I suppose it’s time to tell you this exciting news I’ve been hinting at on our Facebook for the past week!😉

 

 

Today- March 23rd is Annalise’s ONE YEAR SHUNTIVERSARY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

   

 (Before surgery) 

  (Right after surgery) 

(The following day when we got to go home) 

 
A year ago today, Annalise underwent brain surgery to get a shunt put in to help drain her excess fluid in her brain.

 

This was the day that FOREVER changed her life. This was the day that changed her life for the better. This was the day that enhanced her quality of life more than we could have ever imagined.

 

It has been one year since we took a leap of faith and put our little itty bitty baby through surgery. I honestly believe that this surgery is one of the reasons she is still alive today…. It was definitely a life saver for her. 

 

And I feel SO incredibly blessed that we have made it an entire year with NO problems. One year of NO malfunctions. One year of NO infections. One year of NEVER having to be worried that something is wrong with it and she would need another surgery.

 

So here is to celebrating one year of a “new life”. 

Here is to celebrating a small device that is forever apart of her and enhancing her quality of life. 

Here is to making it an entire year with no problems or other surgeries! 

 😍😍😍😍😍😍😍😍😍😍😍😍

Now that we have the exciting news done… It’s time for updated pics! 
Here are some from Valentine’s Day:

  
    
 

Here are her one year pictures that we took and had done!    

    
    
   
  (Some throwback birth pictures in there as well) 
Here are a few from her birthday party:

  
 

And then just a bunch of random ones:

   
    
    
    
    (First day in her new car seat)
 (March 17-13 months old and St Pattys Day)

   (Helping dye Easter eggs ;)) 
    
 (One year wells child checkup)

   
    
    
    
    
    
 (Since we had opened a PO box for her birthday…. We have gotten 304 CARDS. That does NOT include letters, drawings, gifts, etc…just cards. 😍….  Our PO box is still open for a few more months too so you can still send a card if you forgot!!!!!!) 
We are SO SO SO blessed by y’all and we are incredibly grateful for all the prayers and support you have given to us! 
Just in case you want to read the blog post from last year about her surgery here it is! (It tells you all the differences we saw in just one day!) 

https://babypragel.wordpress.com/2015/03/26/march-23rd-biggest-day-yet/
Also, we still have our gofundme page (www.gofundme.com/hopeforannalise)  up in case anyone has it on their heart to further help us out on our journey. We are incredibly grateful for what we had received last year and have tried our best for live off that amount for the past year and couple months. That money has let me stay home with Annalise and give her all the therapies she needs… I pray that I can continue to do so in the next year (years to come). Honestly I believe that staying home with her has kept her so healthy and that’s all due to you guys and your help. So thank you. 

Praying that you all have a great rest of your week! 

We are so excited to celebrate Easter this weekend with our sweet girl and our church family. There is no greater example of love than Jesus dying on the cross for us. 

Remember to anchor your hope to the one who has already scripted the perfect ending! 

February 2016

Hey y’all!

I know it has been a LONG time since I last wrote a blog post. (A very long time at that and I do apologize!) I’m sure you can understand how life just gets busy and you don’t have even an hour just to sit down and write….but since it has come to my attention in the last few weeks that there are so many people on our Facebook page that don’t know the background to our story…I figured it was time for a refresher!🙂

(Reminder… you can always go back to all my old blog posts and reread them. ;))

So here is the background to our journey!!!🙂

We found out back in the summer of 2014 that we were expecting our first child. Everything was going great in the pregnancy…no morning sickness, no problems in the routine checkups, etc,. When we went in for our 2nd trimester screening (the one where you find out the gender and REALLY check all the measurements and what not to make sure the baby is on track), that’s when our whole world changed. We were told that “the ventricles in the baby’s brain were enlarged”. They sent us to a specialist to further “diagnose” the situation. It was then (October 15th, 2014) that we found out that “baby girl” had the MOST SEVERE case of HOLOPROSENCEPHALY (HPE for short). They told us the 2 hemispheres in her brain did not split so it was just one big structure of fluid. Throughout the rest of our pregnancy, we went through bereavement counseling and talking to every kind of specialist to fully understand what was going on. Of course, they IMMEDIATELY threw out the idea to abort the baby due to there being NO chance of her living or even making it out of the womb.

It wasn’t until we were about 30 weeks along, (and visited a whole new set of specialists at a different hospital) that they added HYDROCEPHALUS on top of the Alobar (most severe) HPE diagnosis. This was when we were told that IF she made it out of the womb alive, she would be 4-6 weeks early and would die IMMEDIATELY after birth (they specifically GUARANTEED us that she would not live for any more than ONE HOUR!) This was when we scheduled our C-Section date due to her head already measuring way too big for a normal birth. (We also were told that this would help her “live longer” because then the pressure of birth wouldn’t be as stressful on her.)

We went through our entire pregnancy believing that she would pass away shortly after birth (but always held on to our hope anyways) and did everything according to that. At home, we only had a handful of outfits, one box of diapers/wipes, and a crib. THAT was IT. We already knew that if we came home without a baby, the sting of the crib in our bedroom was going to hit us hard but we knew that whatever time God allowed us with her was going to trump it all. We had every second of that day (her birth) planned out as if it was going to be her last second with us.

I canNOT even begin to explain you to the emotions that went on the day Annalise Hope was born. And here we are, almost an ENTIRE YEAR later…. getting ready to celebrate her FIRST BIRTHDAY!!!!!!!!

After she had made it a week, we decided to go get an ultrasound done on Little Miss Annalise’s head. This is when they CHANGED the diagnosis from HPE to HYDRANENCEPHALY (along with the hydro as well still). For those of you still unclear on what exactly hyrdanen is… simply put, she is missing most of her brain! It did not form. She has her brain stem (which allows you to breath and do all your basic functions, SOME of her cerebellum (which relates to muscular activity), and MOST of her temporal lobes (which mainly deals with hearing and some memory formation). The ENTIRE TOP HALF of her brain (forebrain) is missing and is replaced with cerebrospinal fluid.

The difference between hyrdran and hydro is that hyDRO is the excess of cerebrospinal fluid IN the VENTRICLES of the brain. So not only does she have extra fluid in the ventricles, it’s also in the brain area itself.

The SHUNT that she had placed when she was a month old, reduces and relieves the fluid IN the VENTRICLES… that means, it’s only “helping” the hydrocephalus. So yes, she still has a lot of fluid in her brain (due to the hydran), which is why her head is still “big”. But you have to remember… at birth her head was 47cm in circumference. Right before the shunt surgery it was 57 cm… and went back down to 47cm after the surgery. It has stayed the same with a little bit of fluctuation (48-50cm) as her skull shifts and moves, trying to find it’s way to fuse together somehow.

When the diagnosis changed from HPE to Hydran….the outcome of life changed a little bit as well. Before it was NO chance of living. When they changed it to hyrdan, it was “she CAN live up to ONE YEAR, but MOST die WITHIN that first year”. They always said that she would be in a “vegetative state” and wouldn’t be able to do ANYTHING. And by anything… I mean EVERYTHING. No eating, swallowing, talking, crying, crawling, walking…. literally, they ruled out everything. They said she would be deaf and blind even. (HAHAHA!)

Over the past year, she has amazed all of her specialists and doctors. Every time they see her, they comment that they can’t believe how well she is doing and how MUCH she is doing.

When it comes to prognosis (how long she will live). they will NOT tell us anymore. They simply say that it’s up to her and her body. She’s going to live as long as she allows. To which we always say… GOD is sustaining her life… HE decides how long she is here with us.

We won’t ever know when that day is going to come. It could be today, tomorrow, or in 5 years. Only God knows. But we will continue enjoying and appreciating each and every minute we get with her.

I THINK that sums everything up. (You can always ask questions if you need to!)

Now that we got that cleared up😉

The past month or so has been SO crazy busy. January FLEW by because we had SO many appointments. We had to do all of her checkups with every specialist since she had her first seizure back in December, along with all of her normal weekly appointments. We were practically doing at least 4 appointments EACH week…sometimes more.

And now that February hit, its been planning her first birthday and all that fun stuff!🙂

Annalise has been continuing to grow.. size wise and developmentally! On Friday, February 5th, she weighed 18lbs, 7 oz (was 7lbs, 15oz at birth but at least 2-3 lbs of that was head) and was 28.5 inches long (was 20.5 inches at birth). She’s been stuck in size 6-9 clothes for months now and we are just NOW switching her from size 1 diapers to size 2! (whoot whoot lol!)

She is continuing to do well in therapies! We just got her special tomato chair for home too so that will help tremendously with neck strength and different muscles. She is so happy to be able to “sit up” like a big girl!

She is still “scooting” around even though she cannot lift her head yet.
Funny story about scooting… we have a “play mat” in the living room so the floor isn’t as hard for her to do tummy time or anything. She was laying on it, starting to fall asleep… so I went into the kitchen to wash her bottles. Kevin was reclined back, with the footrest up, on the couch… reading one of his textbooks for class. After a couple minutes, I come peek over the couch to check on her and could not see her. I walk around the side of the couch and she was completely OFF the mat and UNDER Kev’s footrest! Which means she had scooted about 4-5 feet! So, needless to say, her scooting has improved😉

Her grasping has gotten WAY better as well. She is still left side dominant though. She will ONLY pick up toys with her left hand but she can transfer it and hold it with her right. So she can grip things with both hands, it’s just picking up things that she can only do with her left. She has even advanced from the baby “palm grip” to using just individual fingers. (These things probably don’t seem like a big deal to an average person, but it is a HUGE deal with her condition! Because she doesn’t have most of the part of the brain that deals with muscular activity, she doesn’t have all the abilities normal people do with their muscles. She has such low muscle tone almost all over her body that it makes simple things like that really hard to focus on and do!)

Her noises have been improving and she is making ALOT more of it! She still does not cry. She still does produce more of baby noises than anything else but there are times that you can hear her say “mama” or “mom” or “dada”… a few times she even said “hi”. But I guess that could always be our imagination hearing those things.😉

She LOVES watching TV lately. She will seriously IGNORE us when she is completely focused on the TV. And by ignore, I mean she has swatted at me to stop bugging her to play or work out.. HA! She also still loves book and any toy that lights up, makes noise, or moves.

She is once again, obsessed with her feet and toes. Her toes apparently help with her teething! She is getting her two bottom teeth at once… and they are taking FOREVER. They have popped through the gums but have not fully set up shop yet. They seem to be bothering her more now that they are playing peek-a-boo than they did when popping through.

Her glasses are still a hard time. She will allow them to stay on for a little bit but once she has been using them for about 15-20 minutes, she gets really tired and they have to come off. So we can only use them for about 15 minute intervals. We have been focusing on using them for reading and more visually stimulating things though which helps with her wanting to keep them on. Also, now that we got the special chair, they stay on better. Because her head is such an odd shape and her ears aren’t quite even, the glasses don’t stay on when is laying down… which made it REALLY hard to use them. So we are excited for more and better opportunities to use them and see if they make a difference.

She is still eating and taking a bottle really well. Baby food feedings have been few and far between because we didn’t have anything to sit her in to do it. But now that we have a chair, she is doing really well. She still can only take about a teaspoon at a time because it takes so long to process how to swallow. It takes so long to feed her even just a teaspoon that after so long, she is just tired of doing it. We have found out that she REALLY dislikes fruits LOL! She always did well with her veggies… but for some reason… apples and bananas are not her thing. She spit them out or made herself gag on them. Silly girl!

At her one year wells child appointment, I’m sure we will have to start talking about what to do if she’s not getting enough nutrition by bottle. Whether it would be getting her to drink something other than formula or having to go the route of getting a g-tube. I do remember our dietician/nutritionist said that babes can live off of formula alone for about the first year and a half but it’s something that we will have to start thinking about/planning for in the next several months.

Other than that, I can’t think of anything else to update y’all on! She continues all her therapies (OT, PT, Vision, Early Ed) and sees her nurse weekly. She only has to see her neurosurgeon every 6 months. We now have to see her neurologist every 4-6 months to regulate and monitor her seizure meds. And she only sees her pediatrician on the normal baby wells child exams. We have been SO blessed to have a fairly “healthy” baby girl for the first year!!!

I still cannot even believe that her birthday is in 6 days! 6 days, y’all! February 17th is one of my absolute favorite days now and I am SO beyond thrilled that we get to celebrate this HUGE smilestone WITH her! I can’t wait to see what Little Miss Annalise does this coming year to keep proving the doctors wrong!
For those of you who don’t see our Facebook page, I’ll let you in on some exciting stuff! We have set up a PO Box for Little Miss so that you can send her birthday cards! I am making a “book” out of all the cards we get, to show Little Miss later in life (God-willing of course) just how loved she is from all over the world!!! It’s been fun seeing where all the cards are coming from and she LOVES looking at them and reading them (okay, okay, maybe more like eating them but same thing, right?).

If you want to send Miss Annalise Hope a card, you can send it to:

PO Box 14814
Lenexa, KS 66285

We rented the box for 6 months so you have time to send one, even if it arrives late!🙂 (Some people have asked if presents could be sent and yes they can…. if they don’t fit in our box, they hold them in back for us😉 We do NOT expect gifts or are asking for them….I just threw that in there for those who have been asking.)

We do still have our GoFundMe page up as well. (www.gofundme.com/hopeforannalise) We have been SO blessed with having that for the past year to help with bills and medical expenses. That money is what has helped me stay at home with Little Miss. Since Kevin is in seminary full time and only can work part time, he doesn’t have much income coming in. (I was the main income in the household before Little Miss arrived.) So that money that was raised LAST year, has been “my” income for the past year (which is actually less than what I was making in a year). We could never ask for anything more but we are at the end of it and trying to figure out how I can still stay home with her… so we had to throw that up there one more time😉

MOST OF ALL, the ONLY thing we REALLY ask for, is your continued PRAYERS! They have been SO appreciated throughout this journey and they will continue to be!
We are SO incredibly GRATEFUL for y’all!!!

Since I don’t have much time left, I’m just adding the pictures off of our Facebook page since Christmas. So here you go:

  

    
    
    
    
    
    
    
    
    
    
    
    
    
    
    
    
    
    
    
    
    
    
    
    
    
    
    
    
    
    
    
    
    
    
    
    
    
    
   

We can’t wait to share all her photos from her one year photo shoot and birthday party that is happening next week!!! 

We hope you all have a blessed weekend!!! 

Happy Valentine’s Day as well! 

2nd Christmas with our girl ;)

Hello family and friends!

 

I can NOT believe Christmas is in 7 days!!! WHERE has this year gone?!

 

AND! Annalise just turned 10 MONTHS old on the 17th!!!!!

 

As most of you probably know, exactly one week ago, we started on a whole new adventure with little miss Annalise.

 

Last Friday (December 11th), Annalise had her very first seizure.

 

Let me just set up the scene so you can picture how completely out of the blue it was.

 

That morning, we had gone to Children’s for her physical therapy. It was our therapists first week back from maternity leave and she was so excited to see how far Annalise has come since she’s been gone. Annalise was her normal, spunky self. That afternoon, we were playing while waiting for our home health nurse to show up for her weekly appointment. (This is where I stop and say THANK YOU LORD for ALWAYS providing. We had to reschedule her weekly visit TWICE that week already due to different appointments or sickness. That wasn’t a coincidence.)

 

Okay back to the visualization.😉 The nurse came and did her normal routine check up. Her vitals were fine, her temperature was fine… everything was perfectly normal. Usually once the nurse is done, she will leave and go do her charting at the office/home…but that day, she just happened to stay and chart at our apartment. (THANK YOU! ;P) She was sitting in the living room with us charting, well I was playing and interacting with Annalise. Annalise was talking to us, laughing, and being her normal silly, happy self. She then started getting a little raspy. Which if you know Annalise, she’s always had positional breathing problems due to the size of her head compared to her neck. Also, if she gets really excited, she becomes raspy. So we didn’t think anything of it. I just rolled her to her belly for a minute so that she would calm down and not be raspy sounding. Once she was on her belly, her head turned away from us, I started saying her name trying to get her to turn her head back towards us (which she ALWAYS does). When she wouldn’t, I sat back down and that’s when I noticed her legs were twitching. It was just a very small, mild twitch but it was rhythmic. We turned her over and that’s when we noticed her arms were doing it as well. I picked her up while we waited a couple minutes to see if they would stop. She was still a little bit responsive at that point… meaning she smirked at me when I picked her up. After the 2 minutes went by, we were already talking to our pediatricians office and they were going to let the ER know we were coming.

 

Kevin was on his way home from school and was a couple minutes out. So while I hurry and got our things together (paperwork, etc.) the nurse was giving Annalise a dose of medicine that we have tucked away in our fridge if something like this were ever to happen. We drove to the ER and as soon as we sat down, they called us back. Annalise’s breathing stayed fine during the whole drive down to Childrens which is why we didn’t necessarily need the ambulance. It wasn’t until after we got there, that things worsened. She become lethargic and wasn’t reacting to anything. She was just staring off into space or looking around. She started drooling and then got really bad hiccups that messed with her breathing. It wasn’t until then that they sucked her mouth out, put some oxygen next to her and started doing jaw thrusts. I DIDN’T EVEN KNOW THAT WAS A THING! LOL! She was actively seizing for almost an hour. It took the dose we gave her at home PLUS two more doses of something different before she quit twitching.

 

After they got her to stop twitching, they hurry and took her in for a CT Scan and a Shunt Series. (They all came back good and nothing to worry about!) After all the scans, blood draws and testing, they started her on a seizure medicine (which she now takes daily).

 

She was so exhausted from everything that happened that she didn’t really “wake up” until about 4 AM Saturday morning. She had to have an IV in during the night since she wasn’t waking up to eat and had a dry diaper all night Friday.

 

Finally, late afternoon on Saturday, she started coming back around and was a little bit more like herself. Because she wasn’t having any other seizure activity while we were there, we were dismissed Saturday night.

 

Sunday, Annalise and I stayed home for most of the day to rest and recharge.😉

 

By Monday, she was fully back to herself! In fact, this week… she has been even MORE talkative and smiley than before the seizure happened!

 

We have been continuing her normal weekly activities and therapies and she has been good so far! =)

 

I cannot even begin to explain how thankful we are for our nurse being there that day. The Lord always provides. (When we met up this week, she told me I gave her a funny look when she asked me if I wanted her to call 911 and get the ambulance. Of course, she knew that I was trying my hardest not to freak out at the time but the funny thing… I totally did NOT hear her ask me that! Or at least, I don’t remember that.)

 

We will be having a follow up with our neurologist the first week of January (she wasn’t working that weekend so we haven’t talked to her about everything).

 

Until then, we have about the next 2 weeks off for the holidays. I may be perfectly okay with having almost 2 weeks of not having any appointments (except her nurse of course) to where I can just snuggle her and spend time with Kevin!

 

We are SO excited to spend our 2nd Christmas😉 with Annalise. If you don’t know why I am saying 2nd… then go back to last year and read this blog post:

https://babypragel.wordpress.com/2014/12/14/most-wonderful-time-of-the-year/

 

It’s a GREAT reminder of how far we have come and how GREAT our God is!

 

While we are at it… here is the blog post I posted right after Christmas last year:

 

https://babypragel.wordpress.com/2015/01/01/cherish-your-moments/

 

“…..There are times in your life when you automatically expect that you are going to get a “good” gift. Like at Christmas, you expect to get good presents…things you want or asked for. But sometimes, you don’t. Sometimes, God gives you something else. It doesn’t mean He doesn’t care, doesn’t listen, or isn’t good. He is always good. He always knows what He is doing.

 

We didn’t expect for our first child to have a rare brain disorder that means she may not live long. We didn’t want this to happen. We didn’t ask for such a good, precious gift to come out this way…..

 

So, remember, sometimes good gifts don’t work out the way we want, but they ALWAYS work out the way God wants. It doesn’t mean they aren’t good. They are always good. It just means that our perception of good isn’t the same as God’s perception of good.”

 

What an amazing reminder as we head into this Christmas.

 

I am SO thrilled to celebrate one of my favorite holidays with my two loves this year. Especially since NOONE thought we would be able to!

After the holidays and after her busy week of appointments at the beginning of January, I will update you guys more on little miss! =)

 

Now is usually the time where I put up a million photos but since I am in such a hurry this afternoon, I’m only putting up a few from our facebook page.

Tomorrow though, I will come back when I have more time and add more photos! =)

 

Until then! We hope you have a VERY MERRY CHRISTMAS!!!!!!!! Cherish your moments and remember WHY we celebrate this beautiful holiday!

 

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Updated photos as promised!!!! 

   The bottom 3 in pics above were taken the Friday morning before her first seizure (so you can see how normal and happy she was :))
    
    
 Above pics from Friday Decemeber 11th… After her first seizure. 

   
    
From hospital stay after first seizure. She clearly knew the right way to use her IV LOL!!! 

 Finally going home after seizure stay 
   
 I LOVE seeing their relationship 😍😍😍😍😍😍😍
   
    
 

First Thanksgiving!

Man oh man has it been a long time since I sat down to actually write out a blog!

 

Life has been so crazy busy with holidays and appointments… that there is never enough time to actually sit down and do this ;P

 

I don’t even know where to begin! So, I apologize if I am all over the place and jumping from one thing to the next in this blog post! =) Also for spelling errors, typos, etc., because I won’t have time to go back and reread it before posting it!

 

Annalise has gotten SO big, so fast! Last time we were at the doctors for her 9 month checkup on November 20th, she was 27.5 inches long and weighed 16 pounds, 5 ounces. She has finally moved up to size 6 months clothes even!

 

She still has a home nurse that comes about every week. We do physical therapy with 2 different people (one with Children’s at the facility and the other is in home) which means she gets about 3 sessions a month. We meet with an occupational therapist at Children’s about every 3 weeks. She has a vision specialist that does in home visits 2-3 times a month as well. We only go to her pediatrician for well child exams, like normal. =) (Neurosurgeon and neurologist appointments don’t come around that often because of how well she is doing ;))

 

Now that the basic info is out of the way….

 

The last place I left off at was middle of October. Which means…. Annalise had her FIRST Halloween and Trunk or Treat! This year, she made an appearance as Snow White. Isn’t she beautiful?! ;P

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November started off with our home team winning the World Series. That was exciting to watch and be apart of for the first time in all 3 of our lives (Kevin, Candace, and Annalise ;)).

 

On November 4th, I posted this on our Facebook page:

“And though she be but little she is fierce”

It may be a famous quote by Shakespeare on how Hermia, in A Midsummer Night’s Dream, seems pleasant but can be argumentative…. It implies that she is nevertheless a force to be reckoned with.

How easily it is to say that our little Miss Annalise Hope has been a “force to be reckoned with”. She has always been our good little fighter… proving to everyone that every. human. being. has a purpose and a reason. God has a plan for EVERY life.

We have been SO blessed that God has been and will continue to be her Sustainer of life… Until the day He calls her home of course.

We are forever thankful for this time with her.

With that said….. Thanksgiving is approaching fast. So let us all remember that we shouldn’t just be grateful during this one holiday

God is so good. Every day. Every hour. Every minute.

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On November 14th, I posted on Facebook this:

With Thanksgiving approaching fast…. These two blog posts that I made last November have been on my mind A LOT lately…. You can find them both here:

https://babypragel.wordpress.com/2014/11/

The first one I wrote on Nov., 12th and there are 2 parts (okay maybe 3 ;p) that still stick out to me. Those 2 things are:

“When people face trials, struggles, and suffering, it’s hard to imagine those situations as blessings or a time of joy. I’ll admit. The first couple days after finding out was hard. I’m not going to lie and say it has always been easy just because I believe in Jesus. We all have to deal with pain and suffering at some point and we have to effectively cope with it. It’s part of being human.”

“Sometimes I feel like it is better to know God than to know answers. I believe it challenges us to trust Him even beyond understanding.”

What great reminders that even when I was right in the midst of all that pain and hurt and anger… I knew I needed to give it all up to the Lord and believe in His promises and plans. It WAS hard to see those times as a blessing… But if it wasn’t for that… We wouldn’t be where we are today.

(The 3rd thing that sticks out to me is all the songs and what they mean to me… I STILL get emotional and teary eyed every time I hear those songs. I don’t think that will ever change. And I am SO okay with that.)

The 2nd post was one I wrote right after Thanksgiving.

I’ve re-read it a handful of times today….

I remember that pain like it was yesterday. I remember sitting there, watching Kev with my niece… Trying not to cry from the bitterness and anger I felt… all while laughing and smiling on the outside because it was oh so cute.

I have tears of joy… Knowing that we GET to have Annalise WITH US this Thanksgiving. How great is our God?!?

But along with all the happiness this year… This post reminds me what we all need to remember….

“Being ungrateful is a selfish desire. Being ungrateful keeps us in the pain of our current circumstances. Who wants that? Why do we do that to ourselves?”

“In all circumstances, situations, and trials, God is in control. He knows what He is doing. I just need to trust Him and give thanks for everything.”

He has ALWAYS been in control and He ALWAYS will be. Trusting Him with our lives and with Annalise’s has been the best thing that could happen to and for us.

With all of that said…

Annalise’s eating has picked up again in the last day or two!!! Yay!!!

We are hoping for a tooth to pop through soon wink emoticon

We are looking forward to get this busy, crazy week over with so we can slow down and enjoy our first Thanksgiving together!

 

 

On November 23rd, I posted:

Thank you to those who are watching out for our sweet girl and us.

Over the last several days, we have gotten lots of messages informing us of a person named “Kadeem Ranger” using an old photo of Annalise. Just one of those Facebook posts saying “Don’t scroll without typing Amen” kind of thing.

Unfortunately, Facebook won’t let me report it… I can only message the person, asking them to take it down.

We really do appreciate prayers and support but we just wish that people would do it respectfully.

I do understand it’s Facebook, so you can share our photos. But out of RESPECT to our family, we would prefer that it’s DONE PROPERLY. Tag where you got the photo from… Give the proper acknowledgement… Give all the glory to GOD, not anyone else…. Please Do NOT just post a random photo without our name/watermark/page not there with it.

I know that once we post things, it’s always going to be “out there” on the Internet somewhere.

But.

I have come to the decision that I WILL be deleting photos after so many days. The status should still be up… There will just not be photos attached to it.

Also…I have now taken down EVERY single photo that we ever put up on our blog of her. (Because most of them didn’t have watermarks.) So if you ever go back and relook at old blog posts… Remember it won’t be the same frown emoticon

I know it’s been awhile since I last updated the blog anyways… But I have been waiting to do that until after all her appointments finished up this week and after Thanksgiving.

I will post her new pics on the new blog post next week…but just like Facebook… I will delete them after so many days.

Hopefully you guys understand where we are coming from.

With all of that said, little Miss Annalise went to her first church Thanksgiving Banquet last night! smile emoticon We are SO incredibly blessed that we got to be a family of three this year (although we “technically” were last year ;))!!

 

(I am CONTINUALLY getting messages about that picture from Kadeem. I have indeed tried reporting it in every single way I could, messaged him, and everything else I could possibly do. Unfortunately, just from his page alone, it has been shared 20,000 times or more… which means, that picture will be floating around Facebook for a LONG time and won’t ever be taken down. I have just decided to “let it go” and move on ;))

 

Thanksgiving was SO good! We were SO incredibly blessed to get to spend it with our little girl and with family!

 

Annalise is continuing to do well in physical therapy! There have been times when we were doing “tall kneeling” and she was “rocking” herself (which shows some really good strength in her legs and core). There are times when “sitting”, when she will balance her head (in the middle) for a few tiny seconds! We have been noticing that she is definitely one side dominant. She lifts her head higher to one side, she pushes with her shoulder on one side, and she rolls to one side more often…. that kind of thing. So we are focusing on trying to keep her as “even” as possible. She still has not been able to lift her head yet so we are continually working on that! She still has not fully completed a roll from belly to back. She still “scoots” when she wants to move. She has been becoming more vocal lately! She STILL does NOT cry. Annalise has not cried in probably FIVE MONTHS! We don’t know if she just forgot how (because she did cry between 2 months and about 5 months old) or just has no need to cry? I am just waiting for the day that she figures out that she can do that. ;P There have been SEVERAL times when she makes sounds that sound EXACTLY like “mama”, “dada”, and “hi”. (Sometimes it may be coincidence, but other times…it is clear as day AND in the right context!)

 

At OT, we evaluate her swallowing and eating. She is still doing well on the different bottles/nipples we changed her too. Her tongue is very slowly learning how to do the “right thing”. When it comes to baby food… it has been a VERY slow process. We were doing it about every day. But life has been SO busy and we don’t have the proper equipment, seating device to do it at home, that it is almost impossible to do it at home. When she does eat at Children’s during her OT visit, she does REALLY well after she has been doing it for 15 minutes. It just takes her forever to process what to do and how to do it.

 

We are PRAYING that we get the right chair to help with feedings and therapy in the next month!

 

Last week we visited the eye doctor. They pretty much told us what we have been noticing with our CCVI specialist…. that she reacts and sees things very close to her and doesn’t have any distance. She has become even more alert lately, and her tracking has gotten SO much better. There are times when you can see her trying to follow daddy or I around the room but we don’t think she is “processing” or focusing on what the “big object” is… just seeing something move. When she had her eyes dilated, she tracked SOOOO much better. It was so strange seeing her react SO incredibly fast to things. (Talked about how her pupils are a little smaller than they should be… so having them dilated definitely helped with her vision… so strange!) Overall, the appointment went well and they decided to have Annalise get GLASSES!!!!! Her new specs will come in, in about a week or so! How adorable are babies with glasses?!?!?

 

Even though Annalise HATES anything remotely touching her face, we are praying that the result of her being able to see better will eliminate the struggle (just a little bit anyways) of trying to keep them on her! ;P

 

We go visit her neurosurgeon in a couple of weeks. Just for the routine checkup that they do every 6 months if nothing is going wrong! We are continuing all the therapies and in home stuff for the next handful of months before getting reevaluated again.

 

I have no idea if I covered everything or left anything out but… little Miss is getting antsy in her sleep. (She’s had a bad case of the runs for the past 5 days and isn’t napping well unless I’m holding her ;( So I must hurry ;P) Please pray that whatever this is, passes SOON! (Her poor little tummy and bum!)

 

As always, our Facebook page (Prayers for the Pragels) is updated WAY better than the blog so, if you can, go check that out more frequently!

 

I am going to try and post another blog in a couple of weeks (before Christmas and shortly after she gets her new glasses!!!). That post may be a TAD bit more sentimental than this one… this one was just a “trying to update you as best as I can in 30 minutes”!😛

 

We hope you ALL had a great Thanksgiving. We are excited for this Christmas season and getting to spend it with the girl we didn’t think we would have this year!

 

We are SO blessed!

 

Here are the pics I posted on Facebook from the past month and then a few from the past week:

 

We are so thankful for the time that we have been given to have her here with us! And I have been SO incredibly blessed to be able to stay at home with her and give her the best life possible. And that is all thanks to YOU guys for being so generous over the past year. I would not be able to still be at home if it wasn’t for the generous love of y’all on our gofundme page. (www.gofundme.com/hopeforannalise) Those donations are first and foremost for all of her medical bills/necessities but also, we count it as “my income”. I do dread the day that “my income” runs out and I will be forced to go back to a paying job… which looks like it will be that way before we know it!😦 I have been looking and brainstorming for ways to be able to stay home with Annalise but help Kevin (for when that time does come) at the same time. We know that God will ALWAYS provide for us but prayers that we will find the best solution possible for our family would be greatly appreciated!!!🙂 (That’s why I mentioned this… prayers have always been a powerful thing for our journey so far, so I can only imagine what it will do when this time comes! :))

I hope you all have a great week!!!! May the Lord bless you, keep you, and give you peace!

 

—Anchoring our Hope to the One who has already scripted the PERFECT ending!—

October 15th…the day I will NEVER forget!

One year ago today…. Kevin and I were getting in the car, heading to my OB for our 2nd trimester screening. We were SO excited to find out whether we were having a boy or girl. We pulled up to the doctors office feeling so anxious… not knowing that just a little bit later, we would be sitting in that same car, crying, aching for an answer as to why something “bad” had to happen. We waited for a couple hours before we saw a specialist to further diagnose what was going on. Those were THE longest hours of my life. I just needed to know what was going on. I needed answers.

(I cannot even believe it has been an entire year since that day!)

A year ago, my world came crashing down on me. I will admit… I fell into a deep, dark pit that day.

BUT! When we had finally digested it all- we just laid in bed and prayed…. Giving it ALL up to God… oh how my world forever changed that night.

I’m just going to attach the very first blog post I ever put up, right now. (Read it and be amazed at how far we have come!)

https://babypragel.wordpress.com/2014/10/29/surprise-of-a-lifetime/

CAN YOU BELIEVE IT?!

“Your girl has the most severe case of HPE. She will not make it.”

NEITHER of those are true to this day!😛

HOW GOOD IS OUR GOD?!?!?!?

Okay…. now that I have gone down memory lane ;P

I know it has been awhile since I last blogged. I apologize for that… but life has been SO busy.

Because Annalise is getting more active and “developed”, I’m pushing therapies even harder now.

We have our weekly nurse, Infant Toddler therapist, CCVI therapist, Children’s OT, Children’s PT… (not including her random pediatrician, neurosurgeon, and neurology visits)… so you can imagine… it gets quite busy.

Because my brain is all over the place right now… I’m just going to copy and paste some of the major stuff I put on our Facebook page from the last month.

So here it goes:

On October 5th I wrote-

Every time this momma sees an “October is pregnancy, infant, and child loss awareness month” picture/status/etc…. My heart just bursts with all kinds of different emotions while my eyes are pouring.

(Last night at youth group, we talked to our kids about human life and abortion— along with some other things. And Annalise was laying right in the front of the room for all to see as proof.😉 We are ALL unique and made in the image of God. How wonderful is that?!?)

Anyways… I have tears of joy knowing that our sweet Annalise Hope was “supposed to be” part of that awareness, 7.5 months ago, but is not. I have tears of joy that our God has sustained her life (one that we were told to abort because she wouldn’t be able to do anything) and will continue to do so until the day He calls her home.

I have tears of sadness and sorrow for those who have gone through that loss. Although I have not been in that exact situation and I truly do not know what exactly it feels like at the time, I do imagine (almost on a daily basis) what it would be like. I think about how different our lives would have been if we had been in that situation with Annalise.

So to all of you sweet momma’s and daddy’s out there that have been through that loss, I look up to you and respect you more than you can even imagine.

(I can promise you one thing though, you WILL see them and be with them again if you believe in the Lord and His promises.)

The only thing I can say is that we are so, so blessed by our always smiley, happy girl!😉 (Who is now 14lbs 13.6 oz big! :))

On October 10th I posted this-

Dear Annalise Hope’s fan club😉,

This momma put together 11 “short” (some just a few seconds, some a couple minutes long) clips and combined them for one big movie. Now this should cover all your video needs for awhile ;P

Clip1-I was sitting beside Annalise and she would look over at me, smile, and then snap back to center. She was doing this for several minutes and it was too cute!

Clip2-This was a Sunday morning, right after we got to church. Daddy was setting up and getting ready for Sunday School, so momma and Annalise were playing.

Clip3-Shows her trying to “lift” her head to the side =)

Clip4-Annalise just being her normal, silly self.

Clip5-Trying to lift her head (I shared this as a picture in a previous post but decided to throw the video in so you could really tell!)

Clip6-This clip was too funny not to share! She hardly EVER “whines”. And by hardly ever, I mean, like… Never. So hearing her “whine” and “be sad” when daddy was gonna get up and leave was sooooo cute!

Clip7-Again, her just being her normal, silly, smiley self =)

Clip8-Talking and playing with one of her new favorite toys… Minnie Mouse!

Clip9-Every time we walk into our OT/PT office, this is what she does. She gets SO excited to be there and it’s oh so cute!

Clip10-I stopped reading so you could hear the smacking noises she was doing ;p And I loved how she was bringing her feet up to the book!

Clip11-Last night, she was really into her zebra… Which still remains her most favorite toy😉

We are working on grasping things– which is why in the video from church when she actually grabs one of the toys and brings it to her mouth I was saying good job. She NEVER does that!— She will grab at toys –like you can see in the last one when she’s playing with her zebra— but she will not hold on to things. She just hasn’t figured out that she can do that yet. =)

She continues to use her voice daily and we try to encourage that as much as possible!

We are working on arm strength— she is just now figuring out that she can tuck her arms under her and push. We (PT and us) have noticed she is “stronger” on one side so we are trying to work on keeping that more balanced.

She has still not figured out how to roll from belly to back… So we are trying to help her with that too.😉

Her vision has slightly improved over the last several weeks!!!! She will track things at times now and is getting faster at looking! (We go see the eye dr next month so hopefully we will have a little bit of a more definitive answer to how well she can see.)

The new and exciting thing is that after visiting her OT this last week, we decided to try new bottles/level flows of nipples. (Due to the fact that her ability to suck and swallow isn’t like a normal babe. She does have a harder time processing. Also we are trying to figure out why she makes so much noise when she eats. (Strider, loud sucking noises, etc.) The OT is thinking that her tongue isn’t doing the right motions that it should be doing. But since she is still getting adequate amounts/calories and is still gaining weight, it’s not a major concern yet.)

She has been eating SO much better though. (A 4 oz bottle would take her about 30 minutes (minimum) to eat, with lots of breaks. These new bottles, she will eat 4 oz in about 10 minutes!) She has even been eating more in a day (total) than before.

Spoon feeding is still going on! We do it just once a day, trying to get that oral stimulation going. She is doing slightly better. It’s still a very slow process and it takes 20-30 minutes just to get 10 tiny little scoops down her. But. We’re trying😉

We are so thankful for all of the love and support we get from y’all!

(Here is the attachment to that video I was describing!)

https://www.facebook.com/1543499849231425/videos/1629360787311997/

On October 13th I posted-

Our home health nurse came today for Annalise’s weekly visit…

Because we changed her bottles this last week… She has been eating SO much better!!! Let me prove it….

Last week at her visit, she weighed 14lbs, 8oz.

Today, she weighed 15lbs, 6oz!

Almost an entire pound weight gain in one week! YAY!!!

Maybe our (almost) 8-month-old girl will start outgrowing her size 3 month clothes now! (One can hope, right? ;))

This Saturday, the 17th, Little Miss Annalise turns 8 months old!

She has changed SO much in just 8 months.

I am SO incredibly blessed and thankful that I get to spend this time with her at home. I would not want it any other way.

Because I don’t have much time left to hurry and post this… if there is something I missed talking about, ask away!

Oh! Just for the record… this last weekend we found out someone was stealing our pictures and using them as their own. So if you ever see anyone using them, let us know. ALSO, because of this… we have started to watermark OUR photos with the phrase “Devoted to God”. (Devoted to God is what Annalise means ;))

But because I don’t have much time left and need to get back to Annalise… most of the pictures posted today with this blog… won’t have the watermark (this will be the last time though ;)) and will be the collages I use on Facebook.

(Maybe I should start updating the blog more often so it would be easier ;P)

Anyways…  here’s your giant Annalise picture fix- (UPDATED…. deleting photos that don’t have our new watermark so people will stop using our photos inappropriately)

 

Thank you for all the continued support and prayers for our journey with sweet Annalise.

I hope that y’all have a great weekend!  (This momma gets to spend her birthday, celebrating Annalise’s 8 month birthday! SO excited I get to share the same number with my mini me!)

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

And always remember… to anchor your hope to the One who has already scripted the PERFECT ending!

http://www.gofundme.com/hopeforannalise

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

Never Toooooo Many Photos, Right?!

Hey y’all!

Sorry it has been awhile since I have last updated the blog!

I will let you in on a little secret as to why that just might be….

So here it is: I strongly dislike writing.

I know, I know. Some of you probably had your mouth drop open. (I’ve had so many of you tell me that you enjoy my writing and that I should write a book! You have no idea how much that flatters me SINCE I hate doing it! :P)

But-

We love sharing our journey with y’all and we love telling everyone just how good our God is for giving us our sweet Annalise so I continue to write.😉

(That’s why the Facebook page gets updated almost daily and the blog not so much… because it is so much easier to write a couple sentences of what that day brings compared to an entire blog.)

Anyways…😉

On August 19th, we had Annalise’s 6-month checkup! After taking her vitals and measurements (13lbs 10 oz and about 25-25.5 inches long), we went back and visited with our pediatrician. She was so amazed at what all Annalise is doing now (She hadn’t seen her since her 4 month checkup so everything from rolling from back to belly, scooting, starting to talk… was all new to her!).

We talked about doing another scan to relook at Annalise’s brain. (Kevin and I secretly think that maybe there is more brain/tissue than they originally said.) They typically don’t want to sedate a child unless it is absolutely necessary and since the brain kind of “rewires” and “grows” during the first year of life…we are waiting until she is around the age of 1. That way, it will be a more “definitive” answer and will allow us to “re-diagnose” her.

We talked about trying to see if she can start on some baby food. One of the therapists we talked to before said we wouldn’t be able to do that until Annalise can sit up and have head control. So we are going to meet with an occupational therapist (hopefully soon) to decide and see if she can even eat orally. And then figure out how to “sit” her if she can eat. (Most kiddos have tubes and we have been so lucky that she has been able to grow and stay nourished by eating orally with a bottle. If she can’t figure out the process of how to eat, or doesn’t get enough nourishment, then it will have to come to a tube later on.)

The most exciting news of this appointment though was that Little Miss PASSED a CAR SEAT test!!!!!!! She is no longer in her car bed (where she was laying down flat). She rocked the test! She had to sit in the seat for 90 minutes while being monitored. They check on her oxygen levels and heart rate. If she dipped below certain numbers, then she would have failed it.

We are SO incredibly thankful that she did pass it. Things are so much easier now.😉

To end her 6-month checkup, she got the last set of shots for a little while. She is always such a trooper for those. She barely even flinches and never cries!

Annalise is continuing to do well in physical therapy. Usually, the therapist wears her out and she has to take quick “power naps” throughout the hour session but we hope that this will all help her to lift her head eventually. Her head control with moving her head from side to side is REALLY good. She has mastered that within this past month! (You never really know how strong she is until you are holding her and she wants to move or get down and she throws her head back on you. THEN you realize how impressive that is considering her head size/weight to the rest of her body! ;P)

I’m pretty determined when it comes to getting her PT. I just think with how active she is and how much she is learning, that it is the best thing for her. So we are trying really hard to continue doing it. We get “reassessed” in a couple weeks at Children’s for PT and we want to keep doing it AT LEAST twice a month. (Last time we were there, it almost sounded like they were saying that we will probably “take a break” for a couple months then come back to it. This momma does NOT want that. So let’s pray that things work out. ;)) We do still have our Infant Toddler physical therapist coming once a month to help us out with things at home as well. Our CCVI “teacher” will be coming about twice a month as well now to help with things!

The newest big life change in Annalise’s life is that she may be starting to teeth! ;P

Last weekend, she started getting a little bit fussy, started drooling everywhere and preferred to be on her tummy with her fingers in her mouth (she has NEVER liked ANYTHING-other than her bottle- in her mouth so for her to stick her own hands in is HUGE! –developmentally huge as well!)

I won’t give her a pacifier because the last time I did…. she gagged on it and threw up everywhere. I think she has a natural reaction to swallow when something is placed in her mouth, preventing her from just sitting there and sucking on something. She is SLOWLY warming up to different teething toys. But that may be, because I try to make a game out of it.😉

On August 26th, Annalise woke up a little bit earlier than normal. I went and got her out of her crib and had tummy-to-tummy time with her in bed. And I got her to somewhat LAUGH for the FIRST time that morning! (It even woke daddy up because we had never heard that “sound” from her before!) It was by far the cutest sound we have ever heard and I was so caught up in the moment of it that I didn’t record it! She has made some other noises when we “tickle” her but she has yet to make that same sound again. I am just waiting for that day so I can record it!😉

She really has become a lot more vocal in the last couple of weeks. She loves babbling, especially at books. Listening to her sweet little baby voice is one of the best things ever.

And apparently, she is deciding to maybe start a new sleeping routine.

Little Miss decided to wake up at 4 AM yesterday (her usual is 8-9… For the past several months even!). And she decided to stay awake and talk until my alarm went off to get up for church. Then of course, Annalise slept through church and lunch so by the time I could take a nap, she was up and ready to play and eat. Then it was time to go back to church for a Critical Issues Forum which she slept through most of it. So of course by the time we got home, she was wide-awake. Finally passing out at 10:45PM. At 11, I put her in her crib to which she woke up. Daddy got her out to try and put her back to sleep… But that was too much fun. She decided to smile and talk to him. So finally by midnight, she was back to sleep.

Only to wake up at 7 this morning…

Although she may be keeping me from getting sleep, I wouldn’t trade this for the entire world! Every day is a HUGE blessing with her!

Daddy is officially back at school, so we get a lot more mommy/daughter time! He is one year closer to getting his masters though and we are SO proud of him! Needless to say, now that he is in school again, all the craziness is going to start. We went down to one car -to cut bills (since I’m not working anymore)- so figuring out how to get everywhere between all of us will be fun. ;P Makes scheduling a little more difficult and means we get to be “stuck” at home on certain days. (Not like I have a problem with that… I’m so incredibly thankful that I even get this time with her and being able to stay home!)

Well… that about sums up what our crazy journey is like these days.

Just to let y’all know- never be afraid to ask us questions! I understand some people are just beginning to follow our journey and without going through and rereading every blog, it’s hard to catch up. I also know that some of you have been following since the very beginning so there may be things you are wondering about that I forget to address.

Finally, we are SO thankful for all of you. Your prayers and continued support for our journey is felt everyday and we are so blessed by all of you. I wouldn’t be able to stay at home with Little Miss and provide for her everything she needs without your help. (www.gofundme.com/hopeforannalise) What we appreciate most is your continued prayers though!

I hope you all have a great week! (Can’t believe tomorrow is September already!!!)

Cherish every moment and be sure to anchor your hope to the One who has already scripted the perfect ending!😉

Just for fun…. here are a few songs that have been stuck in my head lately😉

GOD BLESS YOU ALL!!!!!!!!!!!!!!!!!!

Say It Isn’t So! 

Family and friends-
WHERE HAS TIME GONE?!!
Annalise Hope turned 6 months old today!!!! SIX MONTHS! That’s HALF A YEAR, people!!!!!
The little lady who wasn’t supposed to live longer than 60 minutes has been here with us for 6 months!
I am sitting here trying to summon up all the words… all the thoughts and feelings… that are going through me. Through all the happy tears… I can say that we are blessed beyond measure. We have been given such an incredible gift that has taught us SO much.
I cannot stress enough how thankful I am that God led us down this path and that we have such a Loving Father who is always right there with us.
We knew going into this unexpected journey that God had a plan and a purpose for all of this. We didn’t know how much time we would have with her… We still don’t. (Truth is…. No parent knows that.) We didn’t know that we would have a 6 month old who keeps defying all odds and who keeps reaching milestones that she shouldn’t be without a brain. (Makes you wonder if maybe there is more now than there was before, huh?!? ;))
Six months FLEW by.
But the only thing I can think about is… What if we didn’t believe in a God who always has the perfect plan and ending? What if we would have listened to some of those doctors who implied we abort the baby because there was no hope for her anyways? (HA!!! No hope for our Annalise Hope? Look at us now, doctors!)
I remember being so overwhelmed when we were put on this journey. I remember going to the Lord in prayer more than I ever have in my entire life. I was diving into the Bible and reading books. One of the books that I fumbled through was called Overwhelmed by Perry Noble. (Pretty fitting title, right?!? :p) Anyways… The main thing that I remember from that book is that when we are going through something… We have to shift our focus from our circumstance(s) to Christ. We can’t look to Jesus to change our circumstance(s) though… Because more than likely… He’s just trying to change us. We have to refuse to allow our circumstance(s) to shape our belief system and instead allow our belief system to help us overcome our circumstance(s).
Let me tell you…(and I won’t speak for Kevin on this one but I’m sure he feels the same ;))… but He has definitely changed me. Allowing what I believe in God to rule over any prediction for Annalise has given her life and life more abundantly for that matter.
Just a side note- I’m not saying that, any time you go through a trial/situation/circumstance, if you just believe in our Sovereign Lord and His promises, the best possible outcome is going to happen. For us, our outcome has been extremely good. But it COULD have, very easily, turned out differently. Sometimes, your definition of good isn’t going to be the outcome… It’s always going to be His definition of the perfect plan though and that’s all that matters.😉
Anyways… Back to Annalise😉
Annalise has a busy week this week. Tuesday is our normal nurse visit day. Wednesday is her 6 month wells checkup and shots (And hopefully car seat test day!!!). And Thursday is physical therapy day!
This little firecracker of ours is such a happy baby lately. As soon as she wakes up in the morning, she’s smiling. All day long when we play, she’s smiling. Even in her sleep she smiles. She’s beginning to figure out how to smile in different ways too- cutest thing ever!
She has gotten to be so alert and active. She is constantly moving and is now officially ON the move. Even though she can’t lift her head yet, she figured out how to crawl, in her own way of course. She still hasn’t figured out that she can put her arms under her to help but we are working on that! She’s our little inchworm and I am OH so proud! Also, her rolling from back to belly has gotten a whole lot easier!😉 She no longer aimlessly kicks her legs to get over…. It’s just a quick simple motion now. And because of that… She won’t ever stay on her back! She has officially turned into a tummy sleeper as well (just like her momma and daddy ;)).
She still can’t roll from belly to back though. I don’t think she will be able to do that until she can lift her head a little bit. So once she is on her tummy… She’s just stuck. :p
Annalise is FINALLY finding her voice as well!!! She has been ALOT more vocal in the past week. We will be playing and she will just lay there cooing and making all those adorable baby noises. There have even been a few times where we will say something or ask her something and she makes a noise back as if she is responding!!! Now THAT makes this momma super proud and emotional!
She loves books. And her slinky.🙂 She is getting so much better at reaching for her toys/books. She loves watching infant stimulation videos and Veggie Tales.😉 Any toy that moves, sings, and/or lights up is her favorite. ;p She loves being outside and going for walks in her stroller.
We are seriously so proud of her and so amazed at how well she is doing. She has accomplished so much and we can’t wait to see what else she does!
Daddy and I are already SO excited and looking forward to spending some holidays with her (God willing of course ;)). We think she is going to LOVE Christmas because of all the lights! We may already be planning and saving up for presents.😉
I think that about sums up our life lately. :p As always you can stay more up to date by visiting our Facebook page- Prayers for the Pragels.
And as per usual… We will end with pictures. Today you all get a special treat at the end though. We took a few (and by few I mean like 80- haha!!!) 6 month old photos. I literally just closed my eyes and randomly selected photos to put together in a collage. So instead of bombarding you with 80 some photos, you get 32.😉
Enjoy!
Thank you Karen (from A Perfect Treasure) for the handmade onesie! Thank you Shannen for all our sparkle bows (LiviLane Shop on Etsy) and Tiffany for the jewelry (LittleMissV Shop on Etsy)!

I will update you all soon!
God bless!

—-Anchoring our hope to the One who has already scripted the perfect ending!—-

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