Wednesday, August 17, 2011

Welcome To Holland

This story was very fitting for our situation. SO I thought I'd share.


Welcome To Holland
by
Emily Perl Kingsley

When you're going to have a baby, it's like planning a fabulous
vacation trip - to Italy. You buy a bunch of guide books and make
your wonderful plans. The Coliseum. The Michelangelo David. The
gondolas in Venice. You may learn some handy phrases in Italian.
It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack
your bags and off you go. Several hours later, the plane lands. The
stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for
Italy! I'm supposed to be in Italy. All my life I've dreamed of
going to Italy."

But there's been a change in the flight plan. They've landed in
Holland and there you must stay.

The important thing is that they haven't taken you to a horrible,
disgusting, filthy place, full of pestilence, famine and disease.
It's just a different place.

So you must go out and buy new guide books. And you must learn a whole
new language. And you will meet a whole new group of people you would
never have met.

It’s just a different place. It's slower-paced than Italy, less
flashy than Italy. But after you've been there for a while and you
catch your breath, you look around.... and you begin to notice that
Holland has windmills....and Holland has tulips. Holland even has
Rembrandts.

But everyone you know is busy coming and going from Italy... and
they're all bragging about what a wonderful time they had there. And
for the rest of your life, you will say "Yes, that's where I was
supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because
the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to
Italy, you may never be free to enjoy the very special, the very
lovely things ... about Holland.



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Yes, life in Holland is different than life in Italy. It is beautiful. Just in a different, less romanticized way.

In case you are wanting an update, here is what is happening, as of late:

Evangeline is now scheduled for therapy at Christus Schumpert, where her Drs are located, and where all of our favorite people are. She will be seeing Speech, OT, and PT. We begin there on Tuesday seeing all 3 They have informed me that the techniques they use for feeding issues are very closely alined with Baylor. No forcing, no holding hands, nothing of that nature. So, we are going to try our best at this venture that has been set upon us. We either do it all or nothing. We still have early steps, as an interventionist venue, but they are going to be more of a consult than, actual therapy. Of course, should things not work out at Schumpert, then we can call Early steps and get back with our therapists.

One thing I was concerned about, was the feelings involved. Everyone thinks they know what is best for Evie, and they all want what is best for her. So, it is hard for me as a mother, to make that decision. I don't want any feelings to be hurt. After you work 2 days a week with someone for 8 months, you get to know them pretty well. And I value what each and every therapist has done for Evie. I love them all. But there comes a time, when we have to try something different. A different approach. Its not bad, the other way, just time for a change, I guess.

I am glad that all 3 new therapists will be able to be on the same page, sometimes even sharing sessions. I think this will be a positive change, and the team approach will be best for Evie. Too, she responds better when not in the home. She needs that structured time, in a different facility. I pray that we are making the right choice.

Please be in prayer with us, that all will go well. She is beautiful, smart, and so loving. I just want what is best for her.

There are also some things going on, that I am not, at this moment, at liberty to discuss, concerning Evie's healthcare needs. Please pray with us to resolve these issues, with minimal discourse and accusations. We love you all.

Monday, August 1, 2011

Lately

Lately, things have been quite hairy for us. No new strides, really. Evie did eat 4 puffs today, but no baby food. And, She did put dog food in her mouth; not that I am bragging about that, by any means.

But tonight she is sleeping, in her bed, for the first time in a really long time. We never let her sleep with us, but what we had been doing, prior to tonight, since about March, was holding her all night long, taking shifts. So that we never really got to sleep in our bed. That was tough. But if she lays in the bed, then she rolls around all night, kicking, and hitting, which isn't comfortable either. So, we end up holding her all night. So, tonight, when she went down, in her bed, I felt like we have accomplished something. So, the score, in case you are keeping up with it, is Evie- 500 and Mom and Dad-7. We are slowly but surely catching up!

She will be 18 months on the 6th of August. And she still is not walking. Oh yes, she is cruising. Walking, holding onto items-couches, walkers, our hands, etc. But she will not walk on her own. I have the firm belief that she CAN but she chooses not to. She is a professional crawler.

We go to Baylor a week from today. They have a feeding clinic that supposedly is one of the best, that can hopefully teach me to teach her to eat. So please, keep us in your thoughts and prayers. I feel excited, yet nervous. I really hope that they can offer us some helpful tools in teaching Evie how to eat.

I am getting more and more frustrated, some days not even wanting to try to help her eat, because it is that frustrating. It is such a slow process. Lately, she has had a runny nose, and eating has been more than painful for her. She gags at everything, refuses, now, more than ever. And this is after intense therapy for5 months. She, at her sessions last week, was not rewarded because she did so poorly. It makes it that much harder to force her to try. Which we do. We still offer her foods several times a day, and encourage drinking as much as possible too. But she has been so moody lately, refusing most that we give her. SO it is a vicious cycle.

ON a more positive note, we have made it an entire 4 months at home, not going inpatient in the hospital. This is our longest run yet. We have had a few scares, but she has done very well, and for that I am both thankful and proud.

It has been hard, too, keeping her at home. People commenting about bringing her out, taking her to church, playing with other kids outside. But it just isn't always safe, and with the weather being so hot, she can dehydrate so quickly. We are thinking of bringing her back to church at the start of next summer, once we get past cold and flu season. She will be older, at an age that we can, perhaps, reason with.

But it is hard too, having her outside, when she crawls. She doesn't walk yet. So, she would be hot and miserable in my lap. Which is no fun for either of us. So we refrain. I'm not being overprotective. Believe me. I just know my baby.

I constantly have to remind myself to think of all the things she CAN do, instead of the things that she CAN'T. She is an amazing little girl. And her laugh is so contagious. I love that she isn't fussy when she wakes up. She literally wakes up laughing, or calling the dogs names, or blowing raspberries. You can't help but laugh with her.

Today, when I came home from teaching, she had the snottiest nose. She was grinning ear to ear, her knees were black form crawling, and she was in nothing but a diaper. And I got the best greeting in the world! She came and hugged me and said Mama- in her breathy little voice. My dirty little baby. It was the sweetest moment. A moment only a Mama can understand.

And the way Patrick is with her, is truly the biggest blessing. As I was cooking dinner tonight they were both laughing and playing. And I loved hearing every minute of it.

All of these little moments make those harder times a little easier. I am so thankful that she is still here, with me. SO I can hug her and tell her I love her, every time I think of it. She is my miracle baby.