June ALREADY?!?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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12 comments

  1. Codimarie · June 4, 2015

    πŸ™‚ I keep up with you on FB but also love to come here and read your posts. It makes me so happy to see sweet Annalise’s expressions πŸ™‚ She is such a blessing and you are amazing parents! I look forward to hearing about your upcoming trips! Have a great weekend!

    Like

  2. larisha · June 5, 2015

    she is always sooooooooo cute have a great weekend and enjoy your trips as well

    Like

  3. shellykrause · June 5, 2015

    You don’t know me, but I have been following your story through “a friend of a friend” on FB. As both a healthcare professional and a mom who traveled with a high risk pregnancy, here are a few ideas on what you can do to help ease your anxiety about travel with Annalise.
    1. Find a children’s hospital in the area that you will be visiting with the services that you need. That way, if there is a medical emergency, you know where to go and get what you need, instead of any hospital that may not be able to handle her medical situation. You can generally look up stuff on local hospitals on line.
    2. Take phone numbers of EVERYONE. All specialists, her pediatrician, ect. Again, that way if there is an emergency, the docs where you are know how to get a hold of the docs that know her!
    I know how nerve-racking traveling with a baby with special needs can be. For us, having a plan for the “worst of the worst” really helped us relax more and enjoy our time.
    Have fun! She is such a cutie..

    Like

  4. Holly · June 5, 2015

    My whole family enjoys hearing about this sweet blessing from God! Your whole family is an inspiration and we love getting to watch her grow!

    Like

  5. Shauna · June 5, 2015

    She is so inspiring and awesome and beautiful….. Stay strong, happy, healthy little Miss Miracle.

    Like

  6. Shannon · June 5, 2015

    Oh the bathrobe pix are new too me! Overwhelming cuteness. Good luck with your travel plans!

    Like

  7. Marietta Bolz · June 5, 2015

    I cannot stop smiling, Thank you for the updates.
    What a Blessing you all are!!
    So excited for you to have this time with her and I thank you for posting!! Precious family!!

    Like

  8. Dawnielle Andersen · June 5, 2015

    I don’t know you personally but I’ve seen some of your posts shared on Facebook and I just wanted to tell you that your little girl is beautiful!
    My daughter was born with the same condition and while things have been tough at times, I wouldn’t trade it for the world! She’s almost 8 now and is doing incredibly well, doing things she was “never going to do” and is just the happiest kid on the planet.
    You are doing an amazing job! Your love and effort will make all the difference! Lots of love to your family. β™‘β™‘

    Like

  9. Dawnielle Andersen · June 5, 2015

    My daughter actually has hydrocephalus with a rupture, but we had a very similar initial prognosis and hope and faith got us through so much! Thank you for sharing your story!

    Like

  10. skullweb1 · June 5, 2015

    Thank you
    fantastic blog
    Good luck
    ———————————
    My Blog
    http://www.skullweb.org
    _)(

    Like

  11. tabitha · June 7, 2015

    The rain face! The bath robe! Preciousness.

    Like

  12. Hannah J. · June 14, 2015

    She is one of the cutest babies I’ve ever seen! Thanks for the updates!

    Like

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