Also on this day, I posted a little video of her doing tummy time. When we do tummy time with her, for part of it we support her head so she can start gaining strength in her arms and legs. Here is the link to the video- for some reason I can’t put videos up on this blog site, only photos. (Hopefully the link works!) https://www.facebook.com/1543499849231425/videos/1572040379710705/
Family and friends- Hello! It has been a great past week in our household!
Last Friday was the 17th… which means baby girl turned 2 months old! Whoot whoot! For those of you who don’t see our Facebook page (Prayers for the Pragels), we celebrated her 2 month birthday at the Royals game for her first game ever! It was a blast and she loved it! 😉😊
Then on Monday (the 20th), this is what I posted on our Facebook page after we saw the eye doctor for little Miss!
“Once again… I am blown away and amazed at this child of mine. 😍
Here is what I was told by the eye dr:
Because she is so young, the eye dr can’t really tell us much. But what they can tell us is if the structure of her eye is there. AND IT IS! So all the needed structures are there and fine. The optic nerve is the most important part I suppose because that is what sends the signals back to the brain. AND SHE HAS THAT! So where the signals are being sent and if the brain picks up anything is unknown until she is older. So it’s a day by day kind of thing (like everything else with her). But she technically is NOT “fully blind” because the signals are being sent somewhere. We just don’t know if the little amount of brain she does have is picking anything up or relaying to her what she is seeing.
Yes, she will most likely be visually impaired of some sort but depending on how her brain “rewires” determines what she can and cannot see.
Have I ever mentioned just how amazing our God is?!? She was fearfully and wonderfully made by our Savior and I would not have her any other way!! She is such a blessing!”
Isn’t that such amazing news considering she is “supposed” to be fully blind?!?
Tuesday her nurse came for her normal routine checkup. I mentioned in the last blog post that we had to up her calorie intake to help her gain weight. Well last Friday she had only gained an ounce or two since the previous checkup so we had to up her calorie intake a second time this past weekend. It took her stomach a while to get used to the high volume of calories but it finally paid off! She went from 8lbs 3oz on Friday to 8lbs11oz on Tuesday! 🙂 We have to continue with the high calorie intake for awhile yet until she starts drinking more and handling it better.
Then Wednesday (the 22nd) we had two checkups. One with her pediatrician regarding her weight and one with her neurosurgeon to re-look at her incision and shunt. Both appointments went well and got the “all clear” for now! 🙂 We don’t have to do another checkup with the neurosurgeon until 2 months from now since everything is looking so good. And we will go back to her pediatrician in 2 weeks again to check her weight gain once more.
Annalise is just doing so well with everything and we couldn’t be more blessed by it!
As always, I will post the latest pictures of our sweetie- with her crazy new curly hair 😉 and silly personality… But first.
Looking back on our journey, from the very beginning, I cannot believe how far we have come. I remember that day perfectly. All the emotions… the shock, the anger, the hurt, the pain, the numbness, the feeling of all the dreams and plans I had made being shattered…
But I have learned so much from this journey- first and foremost… It has all been worth it. She is worth it. Every child is worth it.
I have learned to love with everything I have no matter where the path may lead. I have learned to walk by faith more than ever as we learn how Annalise “works”. I live for her smiles and when she looks up at me with those big blue eyes. I live for those moments when she shows me that she knows to whom she belongs to here on this earth.
I recently read a blog post about loving someone you could lose (loving a child in spite of a diagnosis) and it really hit home with me. The writer wrote, “…they deserve every single ounce of strength, of love, of faith, of hope, of fight that we pour out. They deserve all of our heart, because these perfect, special, fragile children give us nothing less than everything they have….. And it is worth every single second- every beat of their heart, every whispered prayer, every ounce of love given, every time you held their hand, every tear shed, every smile, every kiss, every lullaby and every single time they looked at you with soulful eyes, and told you in their own way, “I love you, too.” They are worth it all.”
I cannot imagine life without having Annalise now. I cannot imagine how anyone could end a life because they were told that their child has some type of disorder or diagnosis.
Every. Single. Child. is worth it. Always.
You never know what God has planned for that child.
We had no idea that Annalise would be alive today and that she would be doing so well. But we are so incredibly thankful that God’s plan always prevails. We are so thankful that we chose the “harder” path.
Because we chose to go on this unexpected journey, we have a girl who loves to show how great our God is and how He has a plan for everyone. We have a beautiful, special little girl who has changed a lot of lives already… including mine. (And I don’t think she is done yet.)
I cannot wait to see what else this girl can do!!!
And as promised… Here are the latest photos! 😊