Thursday, December 17, 2015

11 months home

Ana is having a big month, with family birthdays, an auntie getting married, and of course Christmas festivities!

She got an early Christmas present of a beanbag chair and she loves being able to play on the floor with her brothers!



We are looking forward to celebrating her 1 year home next month!


Monday, November 23, 2015

Saturday, November 21, 2015

10 months



First corn cob... Ana says "I like the crinkles, but it's SCRATCHY!"


Monday, October 26, 2015

A Busy Week

Hello,

Mama mentioned that Ana was headed for a G-tube placement.  This proceeded successfully on the morning of 21 October.   Ana came out of surgery a bit rougher than last time, in spite of the shorter duration, and had some O2 for an hour or two post-op.  She was on room air by the evening of 21 October and slept well that night.  Feeding was resumed 0800 on 22 October, and Ana vomited up her 125ml morning feed.  She had a distended abdomen, and continued to vomit anything put in her tum.  The G-tube was allowed to vent.  The night of 22-23 October, Ana had an apnea episode with a deeper-than-usual O2 desaturation, and the (jumpy and conservative, to my mind) night nurse & night doc sent us up to PICU for a CPAP machine.  She slept well the remainder of the night.

Here's an aside about PICU - they are great.  They are real nurses dealing with real-deal problems, and if you're there because a recovery nurse got freaked out by a solitary desat and you're doing fine, they are all smiles.  It's easy money, as they say.  In retrospect, going to PICU was the best thing that happened.

Ana had a CPAP the evening of 23-24 October, slept well, and resumed feeds the morning of 24 October, with a soft, normal abdomen, tolerating her feeds very well.  Her feeding reached baseline-continuous levels the evening of the 24th, and she used a home-CPAP machine that night.  She continued to tolerate her feeds through 25 October, and Dr. Papa was pushing for release.  Pulmonology didn't think she needed a CPAP, they wanted to observe her on room-air for a night, but Dr. Papa proposed the compromise solution of a home pulse-ox monitor and discharge that day.  This was accepted, to my great relief. 

Sweet girl was all smiles when she got in the car with her family, and was squealing with delight at being home.  This was pretty much the best. She slept well last night, and alarmed the machine perhaps twice (and it's set at 90%, which is a pretty high trigger point for a known apnoea case).  This morning she was grinning up a storm, and seemed very happy to be back to the routine.  She is a bit of a mean big sister, and grins impishly when the boyos get in trouble... 


  Mama and Ana in recovery.
 Ana in PICU.
Boys coping with chocolate ice cream, evening of 23 Oct.  Not pictured: Papa with ice cream.  (We saved some for Mama).

A few things that surprised us: 

We began by doing day/night shifts, typically with Mama during the day, Papa at night.  This was exhausting, which is not the surprise.  For the last few days, we did 24-hr shifts.  This was surprisingly better. 

PICU people are cool.  This should not have been a surprise, since I knew PICU people were competent to a high degree, but what I did not think about was their generally-excellent people skills, which are almost as necessary as the medical competence.

And finally, evidence is the best argument.  As long as you are sure of the outcome, just quietly doing things that you know are good for your kid is a great way to make progress.  Doctors think about you perhaps once every 24hrs.  Thus, their orders tend to only update daily.  They are also people, making decisions on the best information available to them at the time, subject to conservative guidelines, and often have no sense of financial or family reality.  They are generally knowledgeable people, but they know their field.  I know my daughter.  Ana was not scheduled to receive more than 20ml/hr until 0800 25 October.  This was absurd, since she had good bowel sounds (hunger rumbles), had good stools, had good urine, had no negative indications whatever...  So by the time her scheduled rate increase rolled around, she'd had 13hrs of feed at her target rate.  Voila!  This requires good nurses, though.  Building trust with nurses is key.  No surprise there.

Anyhow, thanks to those who've been praying for us.  We are all home, and things are back to the usual. 

God Bless,
Papa

Saturday, October 17, 2015

9 months

Also... 
What!?
9 months already?


The biggest noteworthy event of the previous month was a definite case of separation (from me) anxiety. I totally forgot that this is totally normal for a 9 month old. Ana's on track for something!
For the other big update see my previous post.

A busy week...

We have a busy week coming up!

Mr. Porgies is turning 2...

And miss Braids
Is getting a g-tube!

Maybe I need to eat my words (or have them pumped through a tube), but we are definitely in a place where we are confident that a g-tube is the best next step. It's quite amusing when you stop to think about it what sorts of things get us really pumped as parents of a medically complicated kid.

I'm looking forward to not setting any more NG tubes! Ana has gotten quite agile at yanking them out when she sets her mind to it. Just a couple more days...




Tuesday, October 6, 2015

She is 13, after all

I am considering adding a new sidebar to the blog: Ana's playlist.


It's one of those funny things that shows that she was meant to be in our family; she has strong musical preferences, just like the rest of us. I was trained as a classical harpist, and we make and listen to a lot of music around our house. Ana is never afraid to register her opinion about what's currently playing.

Here are a few examples of some strong Ana preferences:

The Chieftains (Irish folk music) and Mogwai (Scottish post-rock) rarely fail to get a happy scream. The same goes for The Gipsy Kings. Ana wonders why they haven't let her join up yet.

Mahler Symphony V on the other hand caused such wailing and hullabaloo that we thought maybe she was injured or sick. It wasn't until Mogwai came on afterward and her demeanor instantly changed that we realized she just hates ponderous German composers. She likewise was quite dubious of Richard Strauss. 
High church polyphonic chant and Bach both seem to be enjoyable to her, but never get the screams of joy that are reserved for her favorite bands.

She seems to like all live music, but it is still fairly easy to distinguish the hierarchy of "amazing" to "tolerable". She has been helping me choose which harp repertoire to practice, and has pretty good taste.

With Christmas coming up, I expect we will find out how she feels about such things as The Nutcracker and other classics. 


Be looking for a new sidebar documenting Ana's favorite tunes!

Friday, September 18, 2015

Whoops!

I guess I missed Ana's 7 and 8 month home updates! 


She's getting big and gaining weight! She weighed in at 36 lbs earlier this week.


She is healing well from her surgery and can now sit in various positions without traction for reasonable amounts of time. We are all looking forward to traction being over for good in two weeks. It has been awesome to see the improvements in her posture already.


She seems to be settling well in our family and has definite opinions of each of her brothers.

Took is her favorite by far, she shrieks with delight when she sees him and admires him quite a lot, it seems.

Porgies (who is demonstrating Ana's traction rig) makes her laugh, but she obviously thinks of him as an annoying little brother, which may be fair. It is encouraging to see such a normal healthy sibling dynamic developing.

Hopefully she will be able to get back into PT soon, and start speech and occupational therapy soon as well. 
She has repeated a word for me once... We were playing with the beach ball (her favorite toy) and I said "ball" about three million times... And then she said very clearly: "Ball!"
Wow! Amazing! She has not repeated her performance, but I wonder if there isn't some stubbornness contributing to her non-repeating as well as the obvious difficulty factor ;-)

I think that's all for now, I'll update more at 9 months if I don't forget ;-)






Sunday, August 30, 2015

Ana sounds

I am notoriously not a picture/video taker,* which means that most people have no idea what Ana's range of oral expression is. 

Ana came to us with a little laugh, and a little cry, and we have watched that expand into a huge repertoire of noises. 
Ana giggles, cackles, and laughs. Ana whimpers and bawls and screams. But most excitingly, Ana sings "Ana songs" and uses consonants. My sister who is finishing up nursing school heard Ana "talking" the other night and got really excited; she is beyond just baby babble, and is using a wide range of consonants. Here are some of my favorites:

"Lalala!"

"Mamama!" (No semantic value yet, but I am excited for when it clearly means "mama")

"Gagaga!"

"Wawawa!"

Those sounds are usually expressed in long strings, ending when she needs to come up for air.

However, she has a one syllable word that she says very expressively. I have no idea what it means but I grin every time she says it:

"Ufff!"

We haven't started speech therapy yet, but I am suspicious that she'll do really well if she decides she's on board.





*it doesn't help that every time I DO try to get a video of her talking she shuts up and grins at me. Thanks, Ana ;-)

Sunday, August 23, 2015

She's home!

Ana surprised us all by breathing, eating, and healing like a champ. Yesterday afternoon she was released from the hospital and now our family is all together again.


Look at those legs! Such a nice wide space!

We are so thankful for God's mercies during this much-easier-than-expected surgery and recovery.

Thursday, August 20, 2015

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.


Wednesday, August 19, 2015

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!

Tuesday, August 18, 2015

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!

Tuesday, August 11, 2015

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.

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!


Tuesday, June 30, 2015

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!

Saturday, June 27, 2015

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 :-)

Wednesday, June 17, 2015

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.



Wednesday, June 10, 2015

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!

Wednesday, June 3, 2015

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!


Sunday, May 17, 2015

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:

ella7
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.


Thursday, April 30, 2015

Ana is a purple turtle!


Ana received her spine brace today! She doesn't seem to mind it, though as Took remarked "She can't do her slumpy trick anymore."

Hopefully we will be able to keep spine surgery at bay for a long time!



  

Thursday, April 23, 2015

Look at this

Ana last June, when Papa visited her:

Ana now

No more blank stares here, folks!
This Ana has a family and she knows it! Sometimes it makes her laugh and sometimes it makes her cry, just like any kid...
Look at the life in her eyes! She is loved!

Praise God for the love he set on us through Jesus his son. We love because he loved us, we live because he lives!


Thursday, April 16, 2015

3 months home!


Yesterday was Ana's three month home day!
She is doing well. As you can see, she loves to eat sweet potato blender food.

She has gotten louder. Happy noises, sad noises, angry noises, experimenting with noise noises... They have all gotten louder! She is very communicative. I have no idea what her speech potential is, but she definitely values communication and wants us to know her needs. What an amazing blessing! 
She generally sleeps well, sleeping through the night about 80% of the time. With Porgies who sleeps through the night about 50% of the time, this means that some nights are great, and some nights are not for sleeping. As someone who idolizes sleep, I have had a hard time with this, but I suppose it's actually a pretty gentle way of having an idol taken from me. 
Ana always allows us to comfort her. She is very welcoming of love and affection from Mama and Papa, and from her brothers as well. When she can't fall asleep in her own bed, she will sleep in my arms (anyone who has adopted from an orphanage knows how AWESOME this is). I have to remind myself how huge this is when she is snoring on my shoulder and all I want is sleep :-)

She has gained 3 lbs since coming home. We are still working on optimizing her diet, and it's a moving target, but I am very positive about her ability to avoid a g-tube. 
Completely unshockingly her vitamin D levels were basically nonexistent. We are working with her pediatrician to get those levels up. She hates her supplements and lets me know it :-)
She has been fitted for a spine brace. Her spine is curvy, but very flexible, so the brace should be very effective and not too uncomfortable. I am excited to see how her body responds to some good support! 
Her hips are the biggest medical issue that we need to address. Her thigh adductors are very contracted so that her legs are permanently crossed. As she has gained weight this has gotten more uncomfortable for her. As much as I don't like major medical interventions, I want to have hip surgery done sooner rather than later. 

It has been wonderful to see Ana's progress in these 3 short months, and we are thankful to God for his preserving and protecting our family.


Monday, April 6, 2015

Calling all parents who have had kids with g-tubes...

Hi! It's Ana's mama, and I want to hear what folks think about g-tubes!
If you have any experience with a child with a g-tube, could you please chime in on the comments section?
 
What made you decide that a g-tube was necessary? Inability to eat? Erratic eating? Just not getting enough by mouth?

Does your child still eat by mouth at all?

How did you feel about tubes before you decided your child needed one? How do you feel now?

Do you use blender food? Formula? Combination?

Anything particularly difficult about care/maintenance?

Has your child been weaned off the tube/do you foresee this happening?



Ana is a great eater... When she wants to be. I really don't like the idea of sticking a tube in a child that CAN eat so well, but we live in a hot dry climate and on "I don't wanna drink" days I can spend hours slowly shoveling thickened liquids in... Where we live, dehydration can happen fast and it is imperative to keep the liquids going! Porgies now knows firsthand about the results of dehydration...
Anyway, miss Ana sees the GI on Thursday and I foresee this topic coming up! Therefore, I welcome your input.

If you want to comment privately, please mention such and I will not publish it.

Thanks!

Wednesday, April 1, 2015

Bonding and Attachment!?

A lot of people have asked me "How do you know if bonding is going well? When will it be okay for Ana to be with other people?"

I wish it were that simple...

The big concern about children like Ana from an orphanage situation is that they are used to trusting nobody but themselves. Our desire for Ana is that she will know that she is loved, and that we will give her everything she needs. No longer does she need to use her cute wiles to make sure that she will be kept alive...

We have definitely been "cocooning"; nobody but Mama or Papa has ever fed, clothed, bathed, or held her since she has been home. Our family and friends have been great about staying at arm's length, as hard as that is for some of them ;-)

I have seen both good and bad responses from Ana in different situations.

Here's a bad one; at the Dr.s office Ana always goes into major cute mode. We walk in, she crows and giggles whenever she sees a medical professional. It's like she's saying "notice me! I am cute!" She will sometimes arch away from me to get a better look at whatever nice nurse just entered the room. Honestly, I am glad that she does happy attention getting behaviors rather than freaking out, but I would be happiest if she knew she didn't have to be over the top cute to survive.

Here's a good one. My parents still have four kids living at home; teenagers down to age 8. It's a very exciting active place, and the boys really like going there to play. We went there today, and Ana was obviously happy to be there, but didn't try to attract anyone with her cuteness. She sat on my lap for a while and then laid on the floor and watched all the action; very content and just enjoying events like a kid.

I hope this helps you to have an idea  of how bonding is going and what sort of cues we are looking for!

Tuesday, March 31, 2015

Three of a kind

Before Ana came home I bought three O-balls for the three children.
I have wanted Ana to work on hand eye coordination but haven't been able to get a good setup for her to do that.
Until I thought of this...
For the first time I have seen her really exploring an object (though not really using hand-eye coordination).

Of course , both boys needed leashes for their O-balls...
But porgies was a little disappointed by his somehow...
No accounting for taste, I suppose.


He has since made his peace with it...


I am glad I got three of them!