Hidden Treasures again!

It's happening again! Another hidden treasures auction to raise money for a family adopting one of Ana's former orphanage "brothers". 

The auction begins tomorrow. If you want to donate but don't know how, please comment. If you want to bid, go here

http://treasuresinhiddenplaces.blogspot.com

tomorrow and check out the cool stuff on auction! You can also read about the kiddo,Mikah, who is the boy of the hour, and his family to be.

Please go take a look!

Well, well

Miss Ana was having eating troubles and had lost some weight, so we decided to go ahead and get an NG tube placed. Hopefully this will allow us to work on eating technique in a more leisurely manner without worrying about getting all the calories into her by mouth.

We are getting used to having all the gear in our house, and we aren't sure if the next step will be a g-tube or just by mouth again. We appreciate prayers for wisdom!

(She didn't like it at first, but is back to her cheery self now :-)

5 months home!

Wow, that snuck up on me!

I can't believe it's been 5 months!

We have been very busy with life and Dr appointments.

We have surgery for her right leg scheduled in July, so we are checking in with all our specialists before then...

She seems to be doing well. Sleep has been better, praise God.

Equipment!?

Hey folks!

I am new to the special needs community and there is something that baffles me: where does all the used gear go? I am on the lookout for a chair for Ana, and I can't find something used anywhere!? Is there some "underground" of which I am not aware?

It's not that I am against buying something new; I have done it before and will probably do it again... It's just that I have a REALLY hard time believing that every parent that has ever bought a special tomato size 2 sitter still has it kicking around their house.

Any pointers, experienced parents? Forums or websites of which I am not aware?

All help is appreciated!

Doctors, weight, and sleep

 Things have been fairly eventful in Ana-land since her four month home update.

Last week we saw her orthopedic Dr. and  discussed what the best course for her hips might be. We will see the Dr. again in mid June and probably schedule a surgery at that point.

We also saw pulmonology for surgery clearance, and I liked the pulmonologist a lot. Ana is unlikely to be cleared for a long surgery, so that provides us with some direction orthopedically. 

We also got a new official weight for Ana: 33.5 lbs! This is almost 10 lbs more than she weighed at pickup. We are proud of her for eating so well and thankful to God for his provision.

As far as sleep goes...

When I wrote Ana's 4 month update, she wasn't getting much sleep. She would cry and cry unless I was holding her. Then things got worse; she cried and screamed and hollered no matter what! This would go on all night; she would doze for maybe 20 minutes and then wake up and scream with renewed strength. I made her a weighted blanket, which she seemed to like, but it didn't really help much. I kept working on my propping technique, trying to get her as comfy as possible, but nothing was helping. I was exhausted, and so was she. It was getting to the point where she was having a hard time staying awake during the day; she would doze and cry, just like at night. Of course life continued on and I still needed to cook, and clean, and drive (scary!), and play with the boys etc. etc. . .

Can you tell I was getting desperate?

Somewhere I had read a review for an app that was supposed to override your brain and force it into sleepy mode; it was based on research done for astronauts on the ISS. I remembered this one night when I was playing with the kids in their room and keeping them out of the way of the Bible study that we host. I hadn't slept in more than a week and I was feeling depressed and exhausted. I idly looked up the app on my phone (you can ask me about it if you are curious) and saw that it had good reviews. It also cost $5, but my sleep deprived brain thought "that's less than a copay for sleeping meds would be..."

I bought the app. 

I turned on the funny NASA sleepy music. 

And it worked. 

Ana conked out and slept a good healthy sleep until morning. I have used it every night since. 

It isn't magic; Ana still has a hard time falling asleep sometimes, and occasionally she will still cry in the middle of the night, but it has made a HUGE difference. Ana now has energy during the day, and I am just normal-mom-exhausted, not going-insane-exhausted.

I told my (future) brother in law about it, and said I thought it was too good to be true. He responded, "Or it could just be an answer to prayer!"

Thanks to all who have prayed, and thanks to God for answering prayer in funny and unexpected ways!

That hair!

It's growing!

Four months home!

Love you, Ana-boo!

Ana has been home for four months now!

It is amazing to look back and see all the little things that have changed.

She is now SO expressive. She makes coos and giggles when she is content. She "sings" loudly when she is happy. She laughs hilariously when she is wound up, especially when the boys are playing crazy games. She cries, screams, and wails loudly when she is upset. No longer do I worry about not knowing what she feels!

Ana, Mama, Porgies

A month ago I was not sure about her bond with Porgies; she seemed incredibly jealous of him and it was very wearing on me. Now she seems to like him quite a lot and no longer puts up a fuss when I nurse him or read to him. This is a very good thing!

Mama says "Smile, Ana!"

Ana loves "helping" with household chores; doing laundry with Mama or carpentry with Papa. She thinks that the blender, drill, table saw etc. are hilarious and loves being where she can watch projects.

She does not regulate her body temperature well at all which means that we have to be very careful about taking her outside when it is hot (which it is a lot where we live).

Ana enjoys watching rain from the porch.

The past couple of days have been unseasonably cool and wet, so we have spent as much time outside as possible to enjoy the weather before it is not safe for her to be out again.

We don't see big fluffy clouds like this that often...

I love this weather!

Ana has been wearing her "purple turtle" spinal brace for a couple of weeks now, and it has been quite a game changer. It is definitely accomplishing its purpose of aligning her spine and hips, which is awesome for her internal organs (her digestion has improved!) and very painful for her legs.
It used to be when she lay down that her legs lay flat and crossed over each other. Now, with her hips being aligned with her spine, her legs stick up awkwardly-- even with the brace off. She can no longer be two-dimensional. This has made sleepytime difficult, because what is most comfortable for her is being held by me, and I can't sleep like that. I don't foresee this getting easier for a while, so I definitely appreciate prayers for strength, and patience, and maybe even some sleep here and there :)

She is also plumping up quite a bit (so sweet!) which makes her crossed legs more uncomfortable as well.
We will see the orthopedic surgeon next week to talk about options for her hips, and I am really looking forward to that appointment.


On another note, I was scrolling through Reece's Rainbow's newly listed children this morning and saw this little lady:

Sweet Ella

Would you please pray for her? She reminds me SO MUCH of Ana, and seeing her pictures gave me new eyes for how much progress Ana has made. Little Ella has the same criss-cross legs that Ana has. (Impossible gait, they call it. For some reason that makes me laugh. How can they sanitize something like those little crumpled legs into such a ridiculous sounding medical term?)
She also has a host of other medical issues, certainly more that Ana has struggled with. Please pray that Ella's family would see her and trust in God's provision to bring her home.