Long overdue updates

I don't know how many times I have come to update, only to realize I have no idea where to start. There is SO MUCH going on in the Garden!

I guess I'll start where I left off.

Here we are, 4 1/2 months into 2015 and our life is not looking the way I pictured it. There are already surprises, changes of direction, and "Oh my gosh!" moments that cannot be anticipated years in advance. Thankfully Dean and I are pretty "go with the flow" people!

In February I posted about an upcoming surgery Abel and Audrey would be having. The same exact surgery for both of them. Audrey needed one knee and both ankles fixated, and Abel need both knees and both ankles. The surgery went well, the recovery a bit interesting.

Abel's surgery was done first. Given his history of being very combative when coming out of anesthesia the staff had Dean and I go back to the recovery room long before he was awake. Ours were the first voices he heard and the first faces he saw when he opened his eyes. He didn't complain much about pain (and he is one of our kids who DOES tell us when he is in pain.) A short time later they told us Audrey was starting to wake up in the next cubicle so Dean went to be with her, since she is a total Daddy's girl!

We had driven separate, thinking that one of us (probably me) would go home with Abel who was ready first. It is always good to be flexible with your plans! HA! Abel said he had to use the bathroom so Dean and I wheeled him over. The dr. said there were no restrictions and he could stand and walk if he tolerated it. Dean and I each stood on one side of him holding him under the arms as he stood up pretty quickly…and promptly fainted. And then threw up.

There was no walking after that.

When Audrey was done and ready to go home she was not at all willing to bear weight, so we wheeled them both out to the van and got everyone loaded in. Abel constantly looking like he was going to pass out or throw up. It took both of us to get Abel into the house and to the couch, but it didn't take more than an hour before he started hobbling around, and throwing up anything we tried to give him. Within a couple of days he was walking normally again.

Audrey was another story. It took her nearly a week before she was willing to put weight on her legs. Her right ankle was swollen for days, but even when it went down we couldn't get shoes on because they rubbed on the incision.  Her foster family in Serbia had sent Serbian house slippers along. They are much more flexible and zip up the side. They are cut just right so they didn't rub on her incision at all. Three weeks out there are still some mornings when she's a bit stiff and sore but once she's up and moving she's fine.

The kids have check ups with the orthopedic surgeon this week for X-rays and to check progress. I'm curious what he has to say about the occasional swelling that Audrey has. With all of this I decided even if they're ready at the same time, there is NO way we are doing the four weeks of casting ankle to hip at the same time. Having two, simultaneously, who could not bear any weight was too much for this mom. Lesson learned!

Ankles, Knees and Guided Growth Systems

Audrey is one very flexible girl. People like to use the term "double jointed" but there really is no such thing as being double jointed. A person can have loose ligaments and tendons, or ligaments that subluxate (slip out of place), but no double joints.

Audrey…oh this child…she can bend and twist in all kinds of interesting ways. One of the symptoms of Down syndrome is low muscle tone, which allows a child to be hyper-flexible. But Audrey is different. She bends many parts of her body backwards, and we can often hear her dislocating various joints. Like her ankles. And her knees. And her hips. And her shoulders. And her wrists.

Yes, dear friends, Audrey is able to completely dislocate all of those joints. I mean, pop her shoulders right out of socket, bend her ankles in ways they should not go, bend her knees backward toward her body.

The first time I saw this was on the plane coming home from Serbia. The flight attendant came walking down the isle, passing us with a horrified look on her face. I turned to see Audrey, knees bent backward toward her head, ankles dislocated, the bottoms of her feet against her face. I have never been able to catch a picture of this, but I can assure you it makes me queasy to look at! She has never expressed pain from any of this, and I suspect when she sat in a crib for years with nothing to do playing with her joints was a form of entertainment and sensory input. Now that Audrey has started running the instability of her knees has become more apparent and needed to be checked out.

Abel, too has one knee that is quite loose and appears to be what prevents him from walking down stairs with any kind of efficiency as well as preventing him from running.

We first met with a doctor who specializes in hips. He did a series of X-rays and thankfully both kids' hips are ok. But their knees? Yeah, he confirmed there is a big problem there. By the end of the visit we knew both kids need surgery on their knees. He sent us on to another doctor who does only knees and ankles.

Oh my, this is far more complicated than we ever expected! Yeah, we can fix the loose ligaments and tendons in their knees but there is no point in doing so until we first fix their ankles AND a different problem in the knee.

In both kids, their knees and ankles are misaligned. This is most likely due to lack of age appropriate motor activity during their institutional years. As the doctor showed me the X-rays and explained where the problems were (which were quite evident!) Axel's ankles came to mind. I think he will be paying a visit to this doctor as well!

April 7th Abel and Audrey will be having the 8 plate Guided Growth System placed in their legs. A series of plates and screws will be placed in their growth plates at both the knees and ankles. These plates will stop the growth of one side of the joint while the other catches up, putting their joints back in line to prevent long-term damage to all the joints in their legs including feet, ankles, knees and hips. While the surgery itself is a bit complicated, the recovery is quite easy. They will be up and running around within a couple of days without any restrictions!

After the surgery, every 4-8 weeks the kids will have X-rays done to watch the progress. When growth has reached the designated point, the plates will be removed. At that point they will have another surgery on their knees to tighten the ligaments and repair the soft tissue damage that has been done over their years of chronic subluxation. That particular surgery - which will likely happen sometime around September - will require 4-6 weeks of being casted from ankle to hip in both legs…for both kids. The good thing is Abel will probably grow much faster than Audrey so we won't have to do their casting at the same time.

As for Audrey's ankles, dislocating ankles are quite difficult to fix and don't have a very good success rate. Instead she will get a more substantial AFO to give her more stability.

So, that is four surgeries for kids (not even counting if Axel needs this done before his growth plates fuse!) and 3-4 surgeries for me all within the next 6 months or so. Oh yes, 2015 is going to be one very interesting year. 

She's leaving!

We have to watch Audrey really close. A couple times per day she decides she's leaving.


Don't worry. At the top of all exterior doors we very loud alarms to warn us when Audrey or Asher open the doors! 

A Little bit of Audrey

Audrey has been home 4 1/2 months now. Last week we put up a small pool. Yesterday she was scared to death of it. Today she watched Asher and Abel splash around and decided she wanted in!


Audrey LOVES music and will do almost anything if you put it to music. She is imitating more and more. It is so fun to see her coming out of her shell! Her understanding of English is increasing daily. She follows directions really well. Sometimes one of the boys don't understand a direction so she will do it for them! Please excuse my annoying singing in this video! (the boys in the pool to the side make it look really deep. Its only waist deep on them. They LOVE it!)

The last one is done!

I was going to post this a couple of days ago, but was afraid of jynxing myself.

A week ago I almost threw in the towel. I told myself "This is crazy. Why are you worrying about this while you're trying to go through chemo at the same time. LET IT GO Leah, just LET IT GO!"

And so I did.

And today, just one week later, I am declaring Audrey POTTY TRAINED!

Over the weekend Dean was outside with all the other kids. Audrey and I came in for a drinks. I checked my email and then I heard it…the music on her potty chair. It only works if the kid pees in it. I went into the bathroom and there she sat, in the dark, clapping for herself!!!

Oh Audrey! You are AMAZING!

She is taking herself, (she needs some help getting pants up/down) trotting herself into the bathroom several times a day. Waking up dry in the morning and going right to the potty, staying dry all day long.

This is it. Done. I have just potty trained my very last child.

Potty Talk

If you don't want to read about potty training, please X out now.

 For whatever reason the institutions in Serbia believe it is easier to keep a kid in diapers indefinitely than to potty train them. Think how expensive it is to put diapers on teens and adults!

When Asher came home at age 7, we had to wait a couple of months before working on potty training because he needed some reconstructive work done first. Once we started, and he peed in the toilet once, he was like "Oh THAT is what that toilet thing is for???" and potty training was complete.

Abel came to us at 10 years old. The caregivers in the institution told us he was afraid of the bathroom and toilets. Indeed, while we were still in Serbia he absolutely freaked out if we tried to get him to enter the bathroom. My guess is he wasn't afraid of the room, he was afraid of what had happened to him in a bathroom. Knowing how  he was treated there conjures up all kinds of images. But for Abel the lure of chocolate was far bigger than his fear of that room. We had him using the toilet within a couple of days, but didn't really plan on truly training him until we got him home. We arrived home on April 29th, and the last day he wore diapers was May 8th. Like Asher, he only needed to be shown what to do.

I didn't work any miracles, believe me. These were kids who should have been trained YEARS earlier but weren't given the opportunity. I just remove their pants for a day, give them a ton of liquids to drink, let them dribble on their own feet a couple of times, show them where the pee is supposed to go, and VOILA! Potty training is done. I will not ever profess to say this method will work with every child. It worked for *my* boys who, like I said above, should have been trained years earlier.

And now we have Audrey. She is 9 1/2 years old. She is six weeks older than Asher. She catches onto things very quickly and I have no doubt she should have been trained years ago. However, one of our biggest hurdles with Audrey is she does not drink enough liquids. Getting her to drink is extremely difficult. Because of this she hardly pees all day long! I change her at certain times of the day because I should, not because her diapers are necessarily super wet.

At this point in life I have very few days in which Audrey and I are home all day long and can dedicate those days to learning about using the potty. Yesterday we had a half day so off came the pants. Four hours and this child never peed. Not a drop. It is hard to teach a child where to deposit the pee if the child doesn't pee. I knew that as soon as I put a diaper on so we could leave the house she would pee, and that is exactly what she did.

Today we had only a couple of errands first thing in the morning and then we'd have several hours home, so off came the pants again. We are on hour  4 1/2 and she still has not peed. Not even a tiny drop. However, as I wrote that last sentence, she just sat herself on her potty seat and is giving me funny looks, so I'm hopeful. This potty seat plays music if she produces so I'm hoping to hear some music really soon!

When the dad is on duty

Sometimes when Dad is in charge things happen, like raids on birthday cakes.

Discovering herself

Bringing a new child home is the most amazing experience, particularly if they lived a life deprived of normal childhood experiences. We do whatever we can to go back to infancy and toddlerhood, to work through all those stages so they can eventually move forward.

 On this day, Audrey discovered herself. 

Feeding Update

If you followed my adoption blog, you know one of my biggest concerns about getting Audrey home was how to manage her feeding problems - or the huge mess created by them - on the plane. I don't think I have any videos of those first few day as she and I learned how to work with one another. Mostly it was me learning how she did/did not use her tongue to manage the food in her mouth.

After about the first week, we had our first breakthrough. Audrey was able to keep her tongue in while taking a bite. Within another day or so she was able to keep her tongue in while she chewed.
This video was around March 9th. Its also the first time she signed "more" independently and without prompting.


This video was taken on March 15th while we were still in Serbia.


Audrey has now been in my care for one month. She is closing her lips on the spoon, keeping her tongue in her mouth while she eats, and now is working on using utensils herself.


We have a long way to go, and the work is frustrating for both of us, but we're getting there. Whenever we bring a new child home, even when they're physically really small like Audrey now or Asher when he came home, we want them sitting at the table with the rest of us so they can see what eating at a table is supposed to look like. In the institution the children never have an opportunity to see how people eat, so how are they supposed to develop decent feeding skills? But it is clear to me that Audrey is noticing how everyone at our table eats and she is really trying hard.

The one area we continue to have major problems is drinking. Audrey is not drinking anywhere near enough fluids during the day. For awhile I was really pushing her limits, trying to get her tongue in when she drinks, but this just caused her to dig her heels in more and refuse to drink at all. I decided to let that go for now and just let her drink how she is comfortable and we'd work on it later. That has helped some but still she is only taking in about 1/4 of what she should be drinking on a daily basis. The problem with not drinking is most body systems don't work without fluids. I was starting to get really concerned and was going to take her into the doctor on Friday if she still wasn't drinking. Yesterday I decided thats it, she's not leaving the table after meals until she drinks her full serving of liquids at the meal. Yesterday was a day of struggle as she threw down the gauntlet, testing to see if I really meant business. Yes, dear child, I really do! (and that snow in the background? All gone today!!)

Yesterday was the first day since I got custody of Audrey that she's had an adequate amount of fluids. Today I had no problems getting her to drink while at the table, and low and behold, all systems are working again tonight. ;-)

She is one smart cookie, this one! I'm so very proud of her. Its stressful to move to the other side of the world, with people you can't understand, then have demands put upon you that you don't completely understand. But Audrey is persistent, and she enjoys feeling success. She's an amazing kid. 

Audrey: One Week Home

I suppose, from the  last few blog posts, it seems as if I'd be laying in bed, hiding from the world as I come to grips with the fact I have breast cancer.

BWAHAHAHAHA

Who has time for cancer????? Certainly not me! Not us!

No, we have been enjoying this new little person who just waltzed into our family and is making herself at home. I cannot even begin to describe the light and joy this child has brought with her. *Everyone* in the family is enjoying her presence. Even Abel, who likes us to think he's not.

Our first night home Axel, Audrey and I all slept all night. That night I sank into our bed around 10:00 pm. I remember thinking "Oh man, I love my mattress. I love my leg pillow…." and the next thing I knew it was 6:00 a.m. and Dean was getting the kids up for school!

We jumped right back into our routine that day, with me doing breakfast for the kids and Dean putting everyone on the bus. Our course, our lives changed that day too.

I was so excited to discover I could get Audrey's hair into a pony! She left it alone all day long.

Asher is torn between wanting to be a big brother and help Audrey...

And wanting to go back to babyhood a bit. 

Audrey is making SO much progress in many areas. Because she spent 9 years always hungry, stealing food is a big problem. For the first few days, when we prepared meals we had to keep the food out of reach until we were ready to eat. Then one day she just didn't seem so anxious anymore. Now she waits patiently by her chair, not bothered by the fact the food is sitting out, right in reach. 

Audrey has also made HUGE gains in her eating skills! She is now using her lips on the spoon and learning all about using a fork and spoon. She'll be starting feeding therapy very soon so we can work on fine-tuning those skills.

Angela is really loving playing older sister to Audrey. The biggest adjustment for her has been that she cannot talk all night long. From Audrey's first night home Angela has slept quietly all night, without talking and keeping everyone up like she normally does. She and Audrey sleep peacefully all night long. 

It took several days before Abel seemed to notice that Audrey was in the house. This goes back to his inability to notice people unless they serve a purpose for him. But Audrey is hard to ignore, especially when she comes and sits herself on your lap! His facial expressions when this happens are priceless, and I hope to one day catch this on camera. He has been very careful with her which has been good to see. I moved all the toddler toys out of the boys' room and into the girls room so Audrey can play with them. The day I did this, later that night I discovered them all back on the shelves in the boys' room. Abel was not happy I moved things around. These are toys he doesn't care for, but he is very particular about where things go, and I had moved them! We repeated this several days. 

Axel had two weeks with Audrey in Serbia, so she's not so "new" to him anymore. Besides, he is a cool teenage boy now. But as he does with Asher and Abel, he will voluntarily help Audrey with her shoes, or getting her jacket on. Axel is a very good big brother to all the kids. 

Audrey does NOT like the dogs! The first time she saw them we experienced the girl's shriek for the first time! Oh man. Shatter glass, she can! She spent a few days changing direction if she realized one of the dogs was in her path, but now she will walk past them, and even push them out of the way a bit. Dudley is exceptionally tolerant of her, patiently laying his head on her lap even as she screams. Its much less "fear" now, and more "mad" that this dog is so persistent. LOL I have seen her very carefully trying to pet Dudley's soft hair, and I'm sure before too long she will fall in love with him. Zurri? Yeah she avoids little kids unless their face is messy with food. LOL The two big dogs are LOVING having a kid in a high chair again, laying beneath her to pick up all the dropped food. Roman is a bit leery of Audrey still, probably because he is a small dog and her reactions are not predictable. 

Audrey has mad a couple trips to the grocery store with me, and has learned how to walk with me holding the cart. One day I had to make a Target run with all the kids. Everyone did great, even Audrey who wasn't thrilled to be walking because she would prefer to be carried. Sorry Audrey, you're nine, and you'll have to walk around the store. Once she realized I was not going to carry her she did great and had fun walking with all of us. 

Audrey is smitten with her daddy and the feeling is mutual. She is such a happy, sunny, delightful child that it is hard not to get sucked into holding her all the time. She is learning to play with the other kids, and she and Asher can often be found leading one another around by the hand. We are making a conscious effort to spent time with the other kids 1:1, not only because of the addition of a new sister, but because of the general stress going on in the household right now. Next week will be difficult for everyone, Angela in particular. 

All in all, this first week with Audrey could not have been better.