Chugging along

We are getting feeding back underway, and breathing is still pretty good.

Ana has a little more energy, which means she's fairly annoyed at being stuck in bed.

She did enjoy this toy a little, though.

Out of surgery!

Things are looking good, Ana is breathing well. Thanks to all who have prayed and continue to pray for our little lady!

One day to go!

Today was the day that we got to pre-register for Ana's surgery tomorrow!

Because purple is Ana's favorite color according to her brothers, I couldn't resist using this lovely purple wall for a portrait :-)

At the pre-registration, we also got to do the pre-op blood draw, which turned into a bloodless stabbing fest... Ana was not giving up her blood today! After several tries and a lot of screaming (from Ana, not the nurses), the nurses decided to see if they could do her labs tomorrow when they set her line under sedation. Since her surgery is fairly simple and low risk, the surgeon was fine with that. Whew! That means Ana won't be conscious for her next needle poke.

I was happy with how the blood draw went, even though no blood was forthcoming. Here's why: Ana had her first blood draw shortly after hitting US soil. At that blood draw she was like a statue. No crying, no wiggling, she just let the phlebs poke around in her hand and squeeze out teeny drops of blood.

Fast forward seven months... Today Ana was enraged that those nurses were poking around under her skin. It was hard to see her so worked up, but I was also really proud of her for responding appropriately and vocally! Go girl!

The other thing that made me happy was that I followed advice that I have heard about not holding your child for a painful procedure. The reasoning is that for a child who is cognitively so young, you want your arms to be a safe place and to build trust by not allowing painful things to happen while you are holding your child. 

Today I made a nurse hold Ana for the stab-fest, er, attempted blood draw. Of course I was right there talking to her the whole time, but I wanted to distance myself from the discomfort. When the travesty was finally over, Ana was so happy to come to me! She was still peeved, but she calmed down pretty fast and seemed to bear me no ill will, which I KNOW would not have been the case had I been holding her the whole time.

This may not work with every kid, but I will definitely make the doctors be the bad guys for this hospital stay!

I will keep you all posted as we go in for the real deal tomorrow!

Surgery is a Go

We saw our pulmonologist one more time to go over the hospital sleep study results.

Because of Ana's hatred of having things on her face and her relative agility in removing things from her face, we decided not to do a BiPAP trial before the surgery. If we have to use one afterward we'll figure it out then.

Please pray that Ana stays healthy and that God would prepare our family for her surgery next week.

Working hard!

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!

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.