Asher

Long overdue Asher update Part 1

Doesn't seem possible but Asher has been in our arms for 5 months now and home almost as long. He is doing so, so well!! On Jan 4th during his early intervention visit he surprised us with his first steps! He had been cruising along furniture and walking with us holding his hands for sometime but would not take a step alone. The therapist had suggested that I try holding on to his waist when walking with him to help with balance. I was trying that went he took two steps over to her. Because of course we were so excited and praised him so much, he did it again. And again. Over the next two days we got him to take as many as 3.5 steps at a time between us. Then for the next two weeks he refused to try at all.

Two weeks later he started trying again. Sill progress seemed slow. He would only walk between people and no more then 8-10 steps at a time. His balance was still poor, but his steps did become more controlled and he was more upright. Toward the end of January he finally was able to stand alone for 5-10 seconds at a time and would take a step or two between things like chairs. The first week of February saw him bravely starting off walking away form the couch but he would only make 2-3 steps before going down.

Then on February 8th the switch flipped. He took off from the couch and instead of falling he kept on going for about 20 feet to the kitchen door. The following day saw him walking 10-15 feet between things and that Friday he really took off. First he walked about 35 feet from one room to the other between Mommy and Daddy. Then he did it again and again and again. Everyday since then has seen him walking more and more and more. Today I have barely seen him crawl at all! He still can not stand up without something to hold on to, but he sure is trying to figure that piece out as well. I have no doubt that spring will find him running around outside after him siblings!

They say that blogs generally only show a glimpse of the total story and
often glaze over uncomfortable or embarrassing details. This is
certainly the case for this blog as somethings are simply too personal
to share when one is not blogging anonymously. This was a concession I
made when I chose to use our names and pictures and open this blog to
those who know us in real life. But I do try to always be truthful with
what I DO post and try to paint as accurate a picture of adoption and
the adoption process as I can. In that spirit, today I'm going to talk
about one of those more uncomfortable/embarrassing things in the hope
that it will help those who are in the adoption process.

Sept 13th 2011, I walked into a large room in Zhengzhou, Henan and
waited with my husband and 3 other families for the little boy who I had
been watching grow up in pictures over the last 9 months. I knew only a
little about him. I knew he was tiny. I knew he was delayed and not
walking at 20 months. But this was also not my first rodeo as they say.
I'd been here before. I'd adopted before. I'd adopted delayed children
before. I'd read page upon page and hour upon hours worth of blog posts,
forums, and books about institutionalization, adoption trauma, special
needs, delays, etc. etc. etc. I knew what to expect. But despite all
that knowledge, despite knowing what institutionalize and traumatized
children look like, it was all I could do not to freak out when they
placed my child in my arms. Seriously, I had to fight down the panic.
The child I was handled was nothing like I expected. He was not a
toddler in any sense other then his age. He was not just delayed. He was
SEVERELY delayed. Forget walking! He either couldn't or wouldn't sit up
without support. His head was horribly misshapen. He response to being
overstimulated was to throw his head back and stair at the ceiling, eyes
roaming around. Yes, all those things can certainly be the result of
institutionalization and trauma as they have turned out to be. I knew
that. I did. Yet, I felt pure panic in those first few moments.

And what if I had traveled alone and had no support? What if I
didn't realize that I could be looking at only institutionalized delays?
Or what if I didn't even know what institutionalized delays were? Then
again, in those first few days, how can you really tell the difference
between expected delays and true underlying issues?  What if I had not
committed in my heart on January 24th, 2011 that THIS child was my son for
better or worse? I don't know, but maybe I would have been so afraid
that I would have walked away from one of the most amazing little boys
on this plant. I really don't know... but I do know that even with all
the prep in the world, you can still find yourself feeling panic when
faced with the reality of your new child in a government office in
China.

There have been a lot of really wonderful things about adding Asher to our family. Some of them we anticipated, and some we did not. One of those unanticipated blessings is the special relationship that has formed between our now oldest and youngest. I had imagined a special bond between Evan and Asher as the boys of the family or between Katie and Asher due to their shared heritage. Both of those may well come in time. But right now, without a doubt, Asher's favorite sibling is his biggest big sister. There is no jealousy between them because they are boy/girl, first grader/baby separated by 4.5 years and two siblings; they really do not compete for anything.  They simply love each other. Miriam's maternal side has come out, and she loves helping and playing with Asher. He in turn loves having a devoted and doting playmate. Sissy equals fun in his mind and his face lights up when he sees her headed his way. Truly, theirs is a special sibling relationship we are so very blessed to watch develop!

Asher turned to this week! We actually had his birthday party on the
18th in an attempt to not have it totally overshadowed by Christmas.
Note to self: work harder on that next year! Anyway, we had a lunch
celebration with a few friends and Asher's favorite meal... spaghetti!  I
made him a monkey cake. He wasn't impressed! LOL He's not a sweets fan
and when I put some icing on his face and hands trying to get him to at
least play with it, I got this look.

Yeah, I'm pretty sure he is saying
"Mommy, have you lost your mind??!?!!! Get this stuff OFF of me!!!"
In any case, happy second birthday little man!! So glad we were with you to celebrate it this year! Can't wait to see all you will accomplish in this coming year.

I think it's pretty obvious to most people who read this blog or know our family that Asher came to us with some visible differences. When we excepted his referral, we were told her had bilateral upper limb differences. Which is just to say that his arms are different on both sides. We were also told that his left radius, the bone on the thumb side of the forearm, was absent.
Now that Asher is home and we can actually see what is going on for ourselves, we have a more detailed diagnosis. He was born with radial dysplasia or radial aplasia Type III or in common language, radial club hand (a term no longer used by medical professionals). All this really means is the bones on the radial, thumb side, of his arms, wrist, and hand have no developed normally. This is severe on the left side in Asher's case, as the radial bone is only partly there, which causes his arm to be short and bowed in, while his hand turns inward.  He also has
non-functioning thumb numbs on both sides. This is a very rare condition and you will find very few others out there. I've been lucky enough to find and make contact with three other mommies with young children who have radial dysplasia.

Almost 2 weeks ago we made the long trek to our Shriners Hospital for Children. It was a really good visit and we were able to talk with a pediatric orthopedist doctor and also an occupational therapist who works with children like Asher. We were very pleased with Dr. R. He spent a fair amount of time with us talking about things. He is conservative about surgery and inclined to take a wait and see approach. I can't say enough how happy I am to find a doctor like this on our first try! Surgeons tend to want to do surgery first and ask questions later! Anyway, not Dr R! He mentioned a number of things we can consider doing to try to improve function for Asher, but stressed that nothing needs to be decided any time soon. He did suggest the removal of the thumb numb on the left hand, but other then that surgeries can wait for years from now. In fact, he stressed that most kids with these differences do just fine with no surgical intervention. I already knew all that, but, yeah for a doc who will say it!! He agreed with our OTs
here that a brace to stretch the tendons was a good idea, but said that since this does the most good during the first year of life, we should not push it at the expense of other development. We were encouraged to only have him wear the brace at night and to do some stretching exercise with every diaper change. So that is the plan of care for the left arm for now.

For the right hand/arm, he also wants to take a wait and see approach. We will be returning for x-rays in 6 months at which time he will consider doing some reconstruction work on the right thumb or, if that is not possible (which is very likely), look at doing pollicization surgery to give him a thumb. At first I was a little unsure about waiting that long to consider doing the surgery as it is usually done before the child is 2, but can be done at anytime before 5. But the more I thought about Dr R's reasons, the more I think he is right.
Basically, he wants to give Asher 6 months to grow and catch up develomentally before putting his arm in a cast for 6 weeks followed by a splint/brace for 6 more. Three months of not being able to use his most functional arm would indeed slow down and possibly stop the huge gains we are seeing in gross motor. Also those 6 months will give him more time to bond to us and to get in a better place nutritionally. (Hey, he has already put on over 3 pounds in 7 weeks!!)  So that's the plan... reevaluate in six months at which time hopefully we will do surgery.

It's been a short two and a half weeks since I wrote an Asher update. Yet how far he has come in that short time is worthy of a post.

As little as 10 days ago our hero would stand rooted to the spot and fuss if you left him standing against something. Now he will cruise up and down the couch. and his speed and confidence grows by the day. He will now pull to stand on any low, steady item. He does not yet have enough upper body strength to reach too far above his head to pull up. His balance is getting better and better. He has now stood for 3 seconds twice. He really wants to learn to walk so I think he's going to get there soon as he is getting braver and braver.

He has learned "patty cake" with all the motions (it is TOO cute) and says "pat, pat" when he wants to play it. He now also says "boo" when playing peek-a-boo. In other language development, he now signs up, down, and all done in addition to "more". He has responded to a stranger calling his name. He now says "mama" to mean me when in distress. He has differentiating cries between scared/upset and hunger/want
something.

Bonding wise, he is starting to see me as "mama". He does not yet want to admit that unless he really needs me, but it is coming. :)

He is doing more and more for himself... helping me dress him, wanting to feed himself. He has successfully used a fork to get food in his mouth if I load it for him. He has also used a spoon with relative success when I load it.

We've been to see the occupational therapist and Asher has been fitted for his first brace. The brace is to help stretch the tenants in his hand/arm so that the hand does not pull in so much and has a greater range of motion. We will change the angle of the brace every month or two. He tolerates it fairly well, but we've had some issue with it coming off or shifting went he is crawling. Here are a few picture from the first day he had it. We have a consult with Shriner's Hospital today which we are excited about. Can't wait to hear what they say.

Mr. Asher has been with us for 6 weeks now and home for just over a month so i thought it would be a good time to note how very far our little guy has come in that time.
When we first got home, Asher could army crawl, but he normally rolled to get around and tired easily. He could sit up, but not for very long before he was tired. With in days he was army crawling all over the house and soon was sitting for long periods with no problem. I noticed after 2-3 weeks that he rarely rolled anymore preferring the greater control and speed of crawling. We don't think that he will ever crawl in the "normal" up on all fours way since his left arm doesn't allow for that really. But he HAS gotten strong enough to push his butt up in the air and get his knees under him. And 3 days ago he learned how to use this to get from a laying down position to a sitting up one!! This was so huge and we are so proud of him! Now he is learning to pull to stand and his strength is growing rapidly. Just in the last few days he has gotten brave enough to do a little shuffling along furniture. YAY!!!
Language wise he went through a 4 week silent period which isn't uncommon for a child switching languages. But about 2 weeks ago he started making noises. Now he babbles a lot and we hear things like mama and dada. He will even say "dada" on command but that is the only word so far, and he does not yet seem to mean Brian when he says it.  His receptive language is coming along well. He understands more, all done, down, up, come, hi, milk/bottle, drink, good boy, etc. He signs "more". And gets his wishes across with body language quite effectively. Just yesterday he waked "Hi" for the first time without prompting.
He is eating many new things including a number of fruits, a few veggies, and meats. He has slowed down in his willingness to try new food, but that is ok for now. The big news is the first part of October he started to hold his own sippy cup.

Then he started feeding himself not only dry finger foods but things that are a little messy or wet. The other night he feed himself 2 slices of pizza torn into bite size pieces. No wonder he gained 11 oz in 2 weeks!! Tonight he insisted on holding a spoon and trying to help feed himself. Another first!

He also has 2 new teeth... and 5 more still working their way in! When he gets those, we should be able to try even more foods!
Bonding is also coming along. He seems to finally be allowing himself to bond to Momma as well as Daddy. He wants to be held and there are signs that anxious attachment is starting! Yay for step one! :)

We know our little guy still has a long way to go to catch up with his peers but looking at all he has learned and done in 6 short weeks we are amazed!

Does THIS look like the face of someone cutting SIX (yes, SIX) teeth?

Told ya he was a rock star!