I love you...SO much!

Susan posted this to Facebook, so you might have already seen it there, but it seemed worth cross-posting here as well:

A recent Alex moment: Alex got a big bang on his head (accident) while we were visiting relatives, and began to cry (very unusual for him, he does not cry--so he was hurt!). My other kids ran to get me, and I came out and took care of him (ended up holding him for an hour, although he was calm after a few minutes). He's been processing this for days now, although the bump doesn't seem to hurt him.

Alex: Mom, why you go outside for me?
Me: Why do you think, Alex?
Alex (whispers): Because I was crying.
Me: Yes, you were crying because you were hurt, right?
Alex: Yes. But why you come?
Me: Because you are my little boy and I want to take care of you. Because I love you.
Alex (smiling big): SO much.

I think he is processing this because he likes hearing me say that: I want to take care of you. I love you. (and he always adds "SO much.")

Alex trains for the U.S. Winter Olympics luge team

 

Big announcement! Drumroll, please! After witnessing Alex’s stunning performance on the sledding hill on Sunday in -20 degree Fahrenheit (windchill factor) weather, we have decided to allow Alex to fulfill his aspiration to join the U.S. Winter Olympics luge team! As you can see from the attached video, he’s a natural. Not even a major wipeout could keep him down! No, he was ready to “do it again” right away!

Seriously, Alex did enjoy sledding a lot more this year than last year. For the most part he went down with one of his siblings or alone, backwards (facing uphill). As long as he was sent down straight, he did fine. (At one point you will see me advising him to go down straight to avoid flipping; of course, in retrospect, that was a dumb thing to say!)

Coming up soon, we’ll be posting Alex’s newest adaptive seating solution—a Tripp Trapp chair.

Now for the highlights reel:

And finally, the hot chocolate:

A Sweet Moment

I put Alex to bed tonight and he said (as he always does) "You going to work now?" (He means work on the computer in my room.)  I said "A little, but I want to go to bed soon because I don't feel good.  I am sick."  Deep concern.  "Oh no, Mom.  Where do you hurt?"  "My head hurts and my tummy hurts.  I'll be OK, I just feel sick."  He reached out his hand to touch my forehead (like the sign of the cross--we do thatwith our kids before they go to sleep).  I asked, "do you want to pray for me tonight?" He said "Yes..."  Then he folded his hands and said:

"God, please help. Mom sick, help her get better.  Better in head and in tummy.  Amen."

I gave him a big hug.  Not only was it a heartfelt prayer, it was a pretty extended train of thoughts expressed at once for him.

The Great Modular Wheelchair Ramp Saga

After sixteen months of bumping Alex up and down our front steps (while holding the storm door open) every time he needed to get to the school bus or our car, we finally installed a wheelchair ramp—yay!

I didn’t find much online when I went to research what it would take to get a wheelchair ramp on the front of our house, so forgive the detail of this rather long post—a lot of it is provided for others who might be looking for similar information and who might benefit from our experience.

I suppose there’s another reason for going into detail about what it took to get Alex his wheelchair ramp. What we’ve learned over the past eighteen months is that people with physical disabilities live in a parallel world—one in which everything is about ten times harder to accomplish than it would normally be.

Heck, getting a wheelchair ramp—just to be able to get in and out of the house safely—proved to be an epic saga, full of ups and downs. (Sorry, couldn’t resist.)

 

More practice standing against a wall! | CP Physical Therapy | Hold On Tight!

Remember that video of Alex practicing standing against a wall a few weeks ago? Well, this has been one of his favorite PT activities at home ever since, and he has been getting better at it. Take a look:



By the way, the "big boots" he's referring to halfway through the video are the new boots that his sister got from the store--his mom was coming downstairs with them.

The big question, of course, is whether this standing will eventually turn into walking. Maybe, maybe . . . there's a lot that goes into standing, and he's putting all the different pieces together. Besides being able to balance once he's up, he needs to learn how to move from a sitting or prone position into a standing position. We're trusting that the selective dorsal rhizotomy procedure that he will undergo this spring at Mayo will open the door for him to make big gains. Developing a sense of balance will be good preparation for the intensive work he will be doing next summer.

Getting ready for the new wheelchair ramp by practicing with threshold obstacles | PT demonstration

Once a month, Alex's school physical therapist does a home visit to teach us (parents and PCAs) different physical therapies. This month, she showed us how she's helping Alex "power over" threshold obstacles so he can get up ramps safely and efficiently -- a good thing, since we are installing our own ramp for him!



And here Alex is watching the workers assembling the modular aluminum wheelchair ramp in front of our house -- he jumped every time they used a power tool, which is why he's smiling!

I'm working on a post and video about the construction and assembly of this wheelchair ramp.

Adopting Alex is now Hold On Tight!

Alex wearing his "Hold On Tight" t-shirt, given to him by his bus driver (right).

Just a quick note to let you know that we're updating the Adopting Alex blog and Facebook page. A good eighteen months after actually adopting Alex, it seemed like it was time to move on.

But as we contemplated how to do that, we realized that people are still interested in Alex's story -- the old friends who helped us adopt Alex in the first place, the new friends who have helped with his transition, and people we don't even know who have stumbled across his story online. So rather than delete the old Adopting Alex blog or let it go stale, we decided to give it a facelift.

Besides giving the website a new look, it now has its own address: www.holdalex.com. (Don't worry, all your old links will automatically redirect.) We've also started a dedicated Hold On Tight! Youtube channel for people who want to follow Alex's progress that way without being subjected to random video of our family birthday celebrations. Visit the channel to subscribe.

Those few hardy souls who are braving the wilderness of Google Plus can subscribe to the Hold On Tight! Google Plus page to get updates from this blog.

We'll try to update weekly for as long as people seem interested.

Oh . . . wondering about the name change? Over the summer, Alex attended an extended academic year program through the public school system to help him catch up, academically and developmentally. Well, his bus driver during that month-long program was so tickled that Alex would shout "Hold on tight!" every time the bus went over a bump, he actually had a t-shirt custom-made for Alex with that phrase on it. It was an endearing gesture . . . and an apt description for the amazing journey Alex -- and our whole family -- has been on.

Hold on tight, folks -- here we go!

PT demonstration | Standing tall with support from a wall

One of the highlights of today's physical therapy session was seeing Alex stand on his own, without any equipment--well, except for the support of a wall. Get his "Joe Cool" act!

PT: Moving from a quadruped position to a tall kneeling position

Alex demonstrates moving from a quadruped (hands and knees) position to a tall kneeling position, with assistance. The purpose of this exercise is to develop the back extensors and greater trunk control.


Besides having "high tone" in his leg abductor muscles,Alex has dystonia in his trunk muscles--yet another consequence of his spastic cerebral palsy.

Notice how Alex is interested in dumping those pieces and cleaning them up again! His PT is right when she says he's a great cleaner-upper at home!

This was Alex 16 months ago

You know, after more than a year of having "Sasha" home, it's sometimes hard to remember how much progress Alex has made . . . until you go back and look at those orphanage videos. So, just take a few minutes to compare these to the videos in the last post (from his birthday):







It's simply amazing what sixteen months have done to transform this boy. Notice how very childlike he seems -- especially notice the fascination with dropping the wand in the first video, a sort of infantile developmental task. Notice his environment -- very nonverbal. He's spoken to, but rarely speaks; when he did, his Russian was almost always deemed unintelligible by Russian speakers both in country and back here. It's amazing to compare this practically nonverbal child of sixteen months ago to the kid who chats up a storm with anyone who will listen today.

If anyone ever doubts the importance of giving kids the right environment in early childhood, they should take a look at these videos and then compare them to the kid we have today -- the kid who has emerged thanks to the dedication of an amazing team of professionals in the ISD 861 school district, his amazing PCAs, and the loving influence of his siblings.

Celebrating Alex's seventh birthday with four videos

In celebration of Alex's seventh birthday, four videos of the birthday boy in full thrall.

To start off, here he is in bed in the morning, in a good mood:



And then getting off the bus, with a birthday hat from school, and with two of his PCAs to greet him, along with a new babysitter and family members -- a regular old party down on the curb (I just love these helpers of his, by the way!):



And singing the birthday song:



And finally, a video from earlier -- him practicing his colors. He is learning to count and to identify letters as well:

Medical updates

Hi everyone, Susan here.

We wanted to update people on a number of medical realities for Alex. We decided mid-summer to switch Alex's care from Gillette to the Mayo Clinic. Alex's PM&R doctor was leaving Gillette, we were burned a few too many times by their bureaucracy, and the length of the trip was wearing us out. We investigated Mayo with some caution, because even though Mayo has a deserved international reputation for excellence, that doesn't mean they are the best at everything (shh, don't tell them :-) ). We were bracing to stick it out with Gillette if it was better for Alex. But we needed to explore Mayo as a possibility.

Well, short version is we're really pleased. We were set up with a neurologist, Dr. Bodensteiner, and he has referred us to other physicians within Mayo. Appointments were set up very quickly, and they have a tentative plan for Alex going forward.

 1. First, Alex had an MRI...something that would have been in his future soon at Gillette as well. The idea was to look at the brain damage (CP assumes that) and try to measure his possibilities for improvement. He has significant brain damage in the area that controls mobility, and he said that's not surprising, because that part of the brain is developing at 30-34 weeks gestation and Alex has born at 31 weeks. It points to some kind of traumatic premature birth and a lack of oxygen and/or blood flow for a time. The mild surprise was that Alex has no cognitive brain damage, at least none visible through an MRI. As the doctor said, that is very encouraging for his future development. The other surprise was that Alex has some brain damage in an area called the pons...which controls movements of the mouth (speaking, chewing, swallowing, etc.). He said it was consistent with being severely dehydrated and then too quickly rehydrated after birth. It's an after birth sort of injury, not related to CP. It doesn't seem to effect him much if at all, which is good.

2. The Mayo PM&R team want to move Alex toward a possible rhizotomy, probably in June 2014. They are not sure he is a candidate for it, but they think it is the best possible way to address his spasticity issues, since the Phenol and botox are not having the effects any of the docs (at Mayo or Gillette) would like. He's also on Baclofen now, and its questionable how much of an impact it is making. Everyone there is resisting the idea of a Baclofen pump, which is fine by me. But he needs to go through a few assessments before the decision to do the rhizotomy is cast in stone. Basically, they want to see that he isn't too dystonic, because the surgery doesn't address that.

The way I understand it, the surgery isolates the nerves that deliver the faulty brain message to go spastic in certain places, and those nerves are cut. It's all day major surgery, and the rehab time at Mayo is three week in hospital/rehab center. You basically relearn everything from the waist down. You can see it isn't something done lightly. But beyond Alex not making progress walking, the spasticity is such that it could really harm his hips--he already has some dysplasia from the spasticity.

Also, I'm no expert, but I have heard there is a window for this surgery, and Alex is in it now. So while it would be great to delay this until he is considerably older, that won't work.

We're very happy with the way Mayo is listening to us but also taking initiative and offering a plan and how to get there. We always liked and appreciated the doctors at Gillette, but everything has been so much easier to get in place here at Mayo...and we've been very impressed with the doctors here too.

Did I mention our PM&R doctor adopted a child from Russia? :)

So: sometime in the next 4-6 weeks Alex will get Phenol and Botox again to do a gait analysis with his tone "quieted down," to see if he is a candidate for a rhizotomy. The decision will be made after a big pow wow of doctors across disciplines examine Alex (a spasticity clinic).

A lot of serious things going on, but all mixed with hope.

Alex hits a new milestone

Well, Alex has been with us a little more than a year now. We just returned from a two-week long trip to Alabama (by car, five kids, you can imagine), and he has definitely gone through another one of those "developmental leaps." We came back and all the people who usually see him were just remarking on how much he had changed. In particular, we're noticing that his vocabulary is much expanded, and he is much more conversational now than previously. Also, his fine motor skills have improved greatly. When he first came to us, he didn't know what to do with a LEGO block -- he'd throw it, but he couldn't make one stick. Now he loves playing LEGOs as much as possible. Take a peek:

Alex riding his new bike!

Alex received a new adaptive tricycle this week...an AmTryke Proseries 1512, to be exact. Two generous donors helped us with the expense. Alex has been very excited to ride it every day, no matter what the weather is (spring having decided to not show up this year, apparently). And as you can hear in the video, it is "excellent" physical therapy for him. (We were lucky to have his school physical therapist on hand for the inaugural ride, along with Julie, one of his personal care attendants.) Plus, with the help of his awesome personal care attendants, he has been taking it all over the neighborhood, which is tremendously empowering for him. Here's a video of the inaugural ride:

Alex is going to Madison....

You want to know what has been going on the in world of Alex the past three weeks?

• potty training, off and on (mostly off) 
• acquiring a wheelchair 
• acquiring a walker 
• trying out canes for standing/walking 
• getting appts for minor surgery June 7th
• casting for new braces since he grew out of the old ones 
• a new OT 
• hiring new PCAs to cover summer hours 
• figuring out if we can buy/fundraise an adaptive trike 
• buying earphones and an MP3 player that doesn't blast little ears out and  ...

...the one I'll mention briefly tonight, that Alex is going to Madison Elementary School. You local people know all our kids go to a charter school that does Montessori method, a great little PreK-8 school named Bluffview. We assumed all along Alex would go there. Our hope is that in time he will go there. We really went back and forth on this...Madison is the school in town set up for special education (which Alex is still going to need, at least for many more months, if not forever) and all the physical therapy/ occupational therapy/speech therapy that occurs in Winona area public schools is really rooted at that school. At Bluffview, the school would have to bring new PTs and OTs and STs in, and because they have a different arrangement (Winona district hires their own therapists and places them in the schools, while the charters in town have to hire therapists out of a program that works for the regional area), it wasn't clear how easily Alex's pretty darn significant needs would be met. What we were certain of was that Bluffview would try, and try hard. But they are dealing with realities they can't entirely control either. So Jerry visited Madison, a small older school about one mile or less from our house. It's where our kids would have gone if not Bluffview (or the Catholic schools). The special ed teachers are very nice and have been working at Madison a very long time. The therapists would be the same ones he sees now, and they're GREAT. The kindergarten teachers both seem very nice and welcomed Alex at last week's "round up" with "we've heard a lot about you, Alex!" Alex, I must say, was polite but nonplussed. He liked the gym.:)

I think and hope Alex will like it there.  Honestly, there are no real red flags, and it is clear they are the best set-up for Alex's needs (sort of one stop shopping for special needs kids in our town).  Everyone we have talked to there has been very supportive, and that goes a long way.  But it's also hard because 1) It feels a little weird to have four kids in one elementary school, and the fifth in another--like Alex is living in a parallel universe (again?)  2) We've never had a school other than Bluffview, which we know like the back of our hand now.  I looked at the Madison classrooms and couldn't help thinking "Really not Montessori."  But the things that Montessori does so well--sensory learning, self-initiative, etc.--are likely not to be Alex's strengths.  I mean, we're not sure he will be able to write well ever, but he seems to have enough control to type...or at least dictate through a voice recognition program.  He is likely to be more technology enabled than Montessori encourages.  Not that they wouldn't allow that--but if Montessori's strengths are not Alex's, at least in lower elementary, well, what's the point?

This is all to say that Madison has a reputation as a very good elementary school here, and we've met good people.  I think Alex will do OK, although I still have a hard time seeing him in kindergarten.  But I'm still a little sad about it.  In any case, if it doesn't work, we'll go to Bluffview and see what we can work out.

--Susan

"Sasha home! I home!"

Well, lots of news, little time to tell it.

We did get news that Alex has an official diagnosis of FAS (fetal alcohol syndrome).  Frankly this is not good news; it indicates more brain damage than just the CP.  But it also isn't unexpected and makes sense of a number of things.  More on that later....

But I wanted to mention some interesting things here.  Alex has been in a really, really good mood this week.  Cheerful, not many tantrums (last week was a bit of a bear that way).  And people are noticing: he's made some cognitive leaps.

The biggest was when I was putting him to bed four days ago.  We were looking at a picture book called "How do Dinosaurs Eat Their Food?," and when I flipped to a page when a dinosaur was flipping a plate of spaghetti (yes) I did my exaggerating reading that I do with the youngest kids "Oh NO!  Silly dinosaur!  No throwing, Dinosaur--right!"  Alex laughs and on a whim I gave him the Russian version "ne brosaitye, da?"  His giggling goes immediately to a all out laughing fit, and after a minute, he screams happily "Don't throw, Sasha!  Don't throw, Sasha!"--which stopped me in my tracks.  He hasn't called himself Sasha (his nickname, the only name he knew in Ukraine) in months.  We haven't called him Sasha.  And my "no throwing" talk was clearly to the dinosaur on the page.  It was obvious the Russian triggered a memory of being told "don't throw, Sasha!" in Ukraine (and I guess it wasn't bad, given how he was laughing).

The only place where we saw he would have the opportunity to throw anything was in the therapy room, where there was a ball pit.  He indeed would love to throw the balls out of the pit when we were there.  The next day, when he brought up the "don't throw, Sasha" language again, I suggested "Alex...do you miss Yana?"  (She was the woman who gave Alex some basic therapy on a regular basis in that room with the ball pit.)  He got serious fast and whispered "yes."  Keep in mind, if he had better langauge, there are a lot of things I'd say right now.  I'm not even sure he understands the word "miss".  But he recognized Yana.  So I thought about it and said, "Alex, I understand.  Is Yana nice?"  He again somberly said yes (and we thought so too, very overworked, but nice) ...but I'm not sure if the somberness is remembering Yana or worry about where this conversation is going.  Does he even understand that he is here forever, now?  Other times when he has heard people speaking Russian he has gotten very unnerved.  I touched his cheeks and said firmly and with enthusiasm, "Alex, this is your home.  THIS is your home.  Mama, Daddy, and Alex, all the time.  Yes?"  Huge smile again.  "Yes!  Sasha home!  I home?"  "Yes, you are home."

At family prayer, we ask the children who they want to pray for, and Alex has always said "the bus" (hey, he loves the school bus! this is an older picture, but deserves to be on this blog!).  But this one time, he said what sounded like Anya...I think he was saying Yana.  So we did.

In Alex fashion, he has been asking the home question the past few days.  A lot.  "I home?  I home?"  And grins ear to ear when we say yes.

Maybe this is why he is so happy this week. :)

An extended look at Alex's progress

Well, I have not been posting a lot lately because of everything we've been contending with around here...but in lieu of a long description of what Alex is up to, I thought I would post an extended video of his most recent physical therapy session. Things to look for, especially if you remember where he was at in June...note the advances in his social interaction and playfulness; language (longer and more sophisticated sentences); and physical abilities (see how well he stands up and sits up straight, with prompting). He looks more and more like a mischievous little boy, ready for the next fun thing to come along.

PT is fun

Just some pictures today....Alex does like his PT!

A late January update on Alex

Hi everyone, Susan here.

Lots going on since the last time we posted...which was a while ago since we all got hit pretty hard with flu, croup, ear infections, stomach viruses, you name it.  Seriously, everyone was sick and very sick during our Christmas break time.  Alex, amazingly, was the least sick of the bunch of us.  He had a lousy case of croup, but was less sick with it than Matthew was.  That's surprising to us, but good.

Alex was just at Gillette this week to check on how the botox and phenol injections were working for him--this is one month out.  Usually this is the peak advantage time for the botox.  The good news is that Alex can do a number of things more easily than he had--better fine motor skills with his hands, better stretching with his arms, and as we mentioned on the previous post, a lot less scissoring of his legs when walking...until last week.  Last week, his scissoring came back with a vengeance--all the PTs mentioned this and frankly it was obvious.  So after checking out his walking, stretching, measuring his flexors, etc., our doctor said this was good news and maybe some bad news.  Good news that the botox is working as expected many places.  Good news he took to walking so quickly while he had the botox influence.  And actually, they think the botox (and phenol) are still operative in his legs, incl his inner thighs and hamstrings...but when he walks in particular, that scissoring is really kicking in, and he thinks that indicates those muscles are contracted and working against the botox a bit.  Basically, those muscles are perhaps short because he didn't get the intensive therapy he needed in his first five years.  He was quick to say two things: he still thought the botox had a shot (no pun intended) of working for more than three weeks if they could adjust dosages.  He said it was definitely worth another try or two.  But the earliest they could do botox again was late March...too much is bad for the body overall.  So we hang out and continue his PT and wait.  He has a spasticity clinic appointment in late July now, to assess how everything has gone overall and what next steps are.  He suggested a step beyond botox could be bracing or surgery, neither of which I am thrilled about...but do work to help people with CP learn to walk.  I should say, his doctor is living proof that not walking isn't the end of the world--he is in a wheelchair himself, and moves himself (from chair to chair) like he is paralyzed from the waist down.  But the advantage is that many basic daily activities get so much easier if you can walk at least some, and it improves health too (bone density, organ health, etc.).  So, we keep trying.

The second half of the day was an appointment to get measured for a wheelchair and gait trainer.  For the sake of my blood pressure, I won't get into all that, other than to say it got done and we expect a call from our vendor early this week.  The entire process takes about 3-4 months...from this appointment.  Yes, we've been waiting for 3-4 months for the seating evaluation.  Anyway.

But he has a seat!  This is a booster style seat that can be attached to a regular chair, put on the floor, etc.  He keeps asking for his special seat, so I think he likes it.  Thanks Jim and Barbara!

School continues to go pretty well.  He likes it and loves taking the bus.  I ask him what he liked about school and he usually says "Bus!  Clank, clank!" and then "Circle!  Music time!"  Jerry and I are looking ahead to kindergarten next year and frankly I am beginning to get nervous.  Six months is a long time, and its hard to know how much Alex will continue to improve (I am thinking more language and basic school readiness here), but there is no question things are slowing down a bit.  That is completely to be expected, but it makes it hard for us to gauge how he will do in a more typical kindergarten classroom setting.  He also fits in so well in a classroom with special needs kids and typically developing kids...I worry about how other kids will treat him in a classroom of almost all typically developing kids. 

If you think "wow--way to jump ahead, Susan"--we have to apply to charter schools by the end of this week.  So it is on our minds.

On a happy note, I say "I love you" to him at night, and he replies "Wuv you".  And he gives me a kiss.