Friday, July 31, 2015

Just a little update...

Ana has been doing pretty well. She has been gaining weight and sleeping at night.
She had a hospital sleep study earlier this week and now the pulmonologist wants to try her on a BiPAP machine prior to surgery because of her sleep apnea. Please pray that everything works out and that we don't have to push the surgery any further out. 
Ana started PT yesterday and I am really excited about that. We will be doing a couple of sessions a week until surgery, and her therapist was very positive about her expectations. Ana is very motivated and loves it all but the stretching (like any normal human, lol).

Thanks for your prayers!

Thursday, July 30, 2015

When You See a Special Needs Child

I found this essay a couple of days ago and thought it was so helpful!

When You See A Special Needs Child
When you see a special needs child, do you know what to do?  Are you uncomfortable, not knowing whether to speak or look away?
When you see a special needs child, you can't help but stare.  You think the parents don't notice as you sneak glances, but they do. 

When you see a special needs child, the best thing you can do is smile.  Smile really, really big at the parents and at the child.  Say hello.  Compliment the child's hair, or clothing, or smile, or even comment on how "cool" their medical equipment is.  Because it is!  It may be saving their lives, or giving them mobility.  And how cool is that!
When you see a special needs child, you see tubes, and a wheelchair, and birth defects.  But special needs parents see their child, their baby.  And he or she is beautiful, and unique, and very, very loved.  The parents are so used to the equipment that they don't even notice it anymore.  They know it's what you focus on, and that makes them sad.  So please try to look past it, and notice their child.
When you see a special needs parent, you don't know what to say.  Should you ask about their child's medical condition or avoid the subject altogether?  Parents spend countless hours researching medical information and they want others to understand.  Please show that you care by asking questions.  Maybe you've even done some research on your own, and that's good.  But do NOT suggest "cures" or treatments to the parent.  It's okay to humbly ask if they've heard of such-and-such, but please don't speak with authority on a subject the parent is truly an expert on.
(Comment by me: this is really true! I am so happy to talk about what's going on medically with Ana! Don't be scared to ask! Also the suggesting treatments thing is very true. If you don't have a child with many special needs and a history of neglect, I will probably roll my eyes at you ;-)
When you know a special needs family, you wish that you could help.  But you don't know what to do, so maybe you don't do anything at all.  Short notes or email messages that simply say "thinking of you" mean the world to them.  Dropping off a dessert, or fruit, or a meal is always appreciated.  Gift cards in any amount, or a five dollar bill to pay for parking at the next doctor's appointment, ease some of the financial burden.  Joining them for walk-a-thons or special events let them know you are with them on their journey.  Every little thing you do is actually huge to special needs families.
When you see a special needs child, you think how lucky you are that your own children are "healthy."  What you cannot comprehend is that special needs parents are truly thankful beyond words for the biggest blessing they have ever experienced in this life--a gift from God--their very special child.  

The author of this essay is Amy Boyd.
Permission is granted to reprint all, or any part of this post, as long as the following is included:  Copyright 2013  Amy Boyd and the Dare to Hope Foundation, Inc.

Friday, July 17, 2015

6 months home!

Here we are at the 6 month mark! I can hardly believe it!

About a month ago, Ana had an NG tube placed because we were having difficulties with feeding. Since then her weight has held steady, and she has been gloriously hydrated ;-)
Her eating skills have continued to deteriorate, and we are looking forward to getting started with a feeding therapist. Hopefully that will help us to make some headway.
Entirely unrelated to the feeding issues we had to push her hip surgery out to next month, toward the end of August. Her home sleep monitoring revealed some pretty nasty dips in blood oxygen levels (due to obstructive apnea, most likely), so she needs to do a full-on hospital sleep study before pulmonology will clear her for surgery. Her sleep study is scheduled for the end of July, giving us plenty of time to get ready for surgery afterward.
Planning around a major surgery is weird; everything has to be placed in either the "before surgery" or "after surgery" category. Ana's pediatrician and I agreed that beginning serious therapy before the surgery probably wouldn't accomplish much that wouldn't be lost during surgery recovery. Hopefully we can get some good stuff started this fall.
I just need to figure out how to keep Ana occupied in the meantime...
She has been very fussy and upset recently. It is hard to know if it is boredom, or pain, or emotional issues. She is happiest if I am holding her, and gets sad/lonely/uncomfortable/bored (?) if she sits in her chair for more than a couple of minutes. It is a little difficult to figure out how to best plan her time while allowing for the chores that I need to do, not to mention the time I want to spend cuddling the little boys. I am hoping that eventually some good therapy and possibly school will help her to have good things to do and alleviate what I perceive to be boredom.

As far as her relationship with Took and Porgies goes, it has been fun to watch that blossom. She is obviously delighted with her brothers, and they obviously love her very much and are so excited to do things that make her happy.

We are so thankful that God has brought Ana into our family and are excited to see how He will work in all of our lives. Thanks for your prayers!