See Christian and Lola's ISR video!

Monday, October 25, 2010


I finally get a call from the super busy appointment scheduler after about two weeks of trying to secure just one appointment.

I need the appointment for Christian with a neurologist in Phoenix in order start the Ketogenic Diet. It's a formality. And because they have to evaluate Christian to make sure he's a candidate and that he's tried other things that were unsuccessful.

I finally got the December...December 14th...Lola's 1st birthday...wait, it gets better.

Not only is the soonest appointment available on my baby daughter's 1st birthday, but the only epileptologist available in the shortest amount of time is THE doctor. That's right, the one and only doctor that our neuro in Tucson suggested we NOT make an appointment with because "we wouldn't mesh well together." No other doctor is available for a single, frickin' consult until January, February, March, or April.

In addition to that awesome news, I was also informed that contrary to what I had been told, they would need to admit Christian to the hospital to start the diet.


I stood in my kitchen a little dumbfounded. Listed above are all things that can be worked around. It was just the sudden barrage of information completely opposite of what I had envisioned. I had to tell the scheduler I'd call her back.

I didn't even know what to say. I just felt that it was all wrong. I'm a really big believer in signs if you haven't already guessed, and all these signs coming my way at the same time in the same conversation was crazy overwhelming.

So I sat down and thought. My dear husband tries really hard to talk me out of my worry, but today I wasn't even hearing a word he said because I was trying to process what to do next. Just go ahead with the appointment with the doctor, the only doctor I was told NOT to pursue?

After processing, I got up off the couch and looked at the website for the list to the other practice I had heard about. The other practice of pediatric neurologists just happened to be the same group along with the same dietitian the little girl I met last Sunday at church goes to. I called, got through to the scheduler right away, and we have an appointment in three weeks for the consult. I spoke with the dietitian and she assured me we wouldn't have to be admitted to the hospital to begin the diet.

Crisis averted.

I know it seems like really small facts and changes of plans that can be worked around, but there were just too many things at the same time not lining up how we had planned for me to continue with scheduling the appointment. This is a big deal and it has to be right.

November 17th, here we come!
Sunday, October 24, 2010


It was time for our annual trip to Wilcox this weekend. I wrote about going last year and how much fun we had.

As tradition would have it, we planned our trip to the small farming town an hour away...and then we scrapped those plans and headed to IHOP for pumpkin pancakes followed by a visit to the pumpkin stand a half mile down the road.

Yeah, that's just how it's gonna go this year.

This year we decided it really didn't matter that we got to haul the kids across a pumpkin field to choose just the right pumpkin. The pumpkins were neatly grouped together and served on a haystack for us. So we looked over the pumpkin filled haystacks and chose just the right pumpkin for Christian.

See. Here he's saying, "Yes, this one."

After choosing pumpkins for every one else we took pictures in the specially designated haystack and pumpkin face area. Gabe was extremely thrilled about this, as you can see. But it was good family fun.

Christian practiced for his Frankenstein costume.

And Lola pestered Moose, the dog.

It was actually a really, really good fall weekend with really, really great Tucson fall weather. There was pumpkin bread and pumpkin choosing and pumpkin pancakes. 

And we still had the entire day to bake said pumpkin bread because we decided against the one hour trip out of town.

Wilcox, I'm not knocking you. In fact, I'm sure we'll be back next year to make some more memories. But this year, we were more interested in pumpkin bread.
Saturday, October 23, 2010


I love new things, but I haven't had many new things to report lately. Things are kind of in process right now.

I mean really we're just busy living life and planning stuff and in the middle of future goals and same ol', same ol' there's this weird in limbo land that we're living in right now.

As far as Christian goes, we were scheduled to begin HBOT when we got back from Michigan, but after discussing it and thinking it over, we decided to hold off. I'm really, really trying to zero in on one thing at a time because this throwing stuff to a wall to see what sticks is driving me crazy. I never really know what's sticking!

Our focus right now is the ketogenic diet. We're trying to get through all of the red-tapiness of it, getting records sent over from one office to another, getting in with the right doctor, scheduling a consult with the only scheduler for a pediatric neurology practice that spans two hospitals and like six doctors. So, it's been a lesson in patience but we're almost there. Just waiting for the date for the neuro consult. But what I'm a little excited about is that we may even be scheduled with either an epileptologist or a brain injury specialist. That's a little awesome, I think. Oh yeah, we have to schedule a consult in order to work with the dietitian who will help us with the diet. Next stop, an actual appointment.

That being said, we want to see if this diet is successful without any other variables like HBOT or different therapies or vitamins. So we're staying with status quo, adding the diet, evaluating the effect, possibly weaning him off the Sabril (Vigabatrin), and then we'll probably start with our mild home HBOT chamber and then add hard chamber treatments.

As for Christian - not a whole lot that's "new." That's not entirely true. He's moving a lot more than he ever has. He's moving his legs and his arms and reaching for toys and all that jazz, even more so than he's ever done in the last year and change. BUT his head control has gone funky. I'm really not sure what all that's about. He throws it forward and can move it from throwing it back to bringing it forward, but he's just not interested in holding his head up with any sort of consistency anymore. Maybe he's just saving up to show us something bigger.
So because we're in limbo and waiting for some things to happen, and there aren't any terribly new things going on (yet), here are some other NEW things...

We went for a morning walk for the first time this fall in our NEW double stroller, jammies, and blankets this morning. 

I'm slowly, but surely putting the kids' room together and the theme is Dr. Seuss, as I've mentioned before. So I ordered these NEW giant wall decals for the room and they came today! And just to show you how big they are, I let Lola crawl all over them so I could take a picture and show how giant these decals really are.

Along with the wall decals, we received Christian's NEW Halloween costume. He'll be moonlighting as Frankenstein this year.


So there are some NEW things to hold me over until some other NEWER things start happening.
Sunday, October 17, 2010


So I had planned to go to church today and I was going to take the kids. I haven't been in a while and I haven't taken Christian in even longer. Daddy usually hangs at home for Sunday football and is quite content to stay with a kicked back, t-shirt and diaper wearing Christian. Who am I to interrupt this father-son Sunday ritual?

But I was going to attempt to take Christian and Lola. The house was a mess, Lola was screaming and her nose was running like a faucet (thank you, teething), I had a headache and I was this close to ditching the whole idea and staying home.

Manny suggested I go because I'd feel better, so we went. It was a good service. I was only half listening because Lola likes to yell at people in church, spill banana flavored puffies, and unpack my purse during the service. It was still uplifting, though.

Believe in the ridiculous so God can show you the miraculous.

After the service was over, we spilled out into the lobby and lingered until we found random family members. I spotted a little girl in a stroller. She was like Christian. I knew right away.

Having a child with special needs, you get good at spotting other kids like yours from a mile away. It's like a radar goes off, a connection occurs, and you're tuned in.

I contemplated for a couple minutes whether I should go over and introduce myself. Would her mom be open to me just coming over and imposing myself upon her situation? Would she wonder why this wacko lady with a baby that she has never met before is so interested in her daughter?

I decided to go say hello. The little girl was just like Christian and only about a week older than him. She actually reminded me so much of Christian's little friend, Cici. I talked to her mother for a while, who I'm sure, at first, was weirded out, but when I explained my plight, she was really open. Her daughter has epilepsy, or a seizure disorder, and cerebral palsy. It's such an immediate pull for me and I'm not sure if this is the same kind of feeling for other moms of children with brain injury or CP. But it's like telepathy or something.  I don't even have the right words for it but it's an immediate discovery of common ground.

But it gets better.

As we're talking about seizures, she tells me she put her daughter on the Ketogenic Diet last year and it was the best thing she ever did. No medicine worked for her and she was having hundreds of seizures a day. So they went to Phoenix and decided to start the diet. Her daughter started crying for the first time, started was a success!

Okay, so here's where I thank Manny for pushing me to go to church. Here's where I start analyzing the whole meeting. I really and truly believe that God put this meeting in my path, He put this little girl in my path as if to put up GO THIS WAY signs on our journey.

If I had decided not to go to church and, instead, stayed home and sulked in my messy house I never would have met this family. God had something waiting for me at church and in thinking about the events of the day as a whole, I was supposed to go today. After about a month of not going to church, and this family divulging that they only attend sporadically, we were all supposed to be there. Wow.

So what happened next? I came home to a house that had magically cleaned itself (Thank you, Manny and Gabe!!!), which is, I think, better than flowers. As far as the future, playdates are involved and I plan to follow all signs that say:

Thursday, October 14, 2010


We bloom where we are planted.

It was my facebook status a few months ago and I'm not sure where it came from or what the origin is, but I love it.

It's kind of my slogan of the year. Every time I get a little off focus, I hear Bloom where you're planted, Shauna in my head. It keeps me grounded.

I woke up to a day that felt less like I was planted in healthy, rich, earthworm filled soil and more like I was planted in a pile of manure. And so went the day.

It was just one of those days. Those Christian's fish oil supplement bursted all over me - Lola screaming all morning-the house is a crazy, hot mess and laundry needs to be done - kind of days. It's really hard to think about anything blooming in conditions such as these.

Ah, but we do have some buds that could set to give a nice bloom in the next few months.

I met up with another special mommy yesterday. She's the mother of a set of adorable red headed triplets, one of which is diagnosed with CP. I can not tell you how comfortable and relieving it was to talk to someone else who frequents the same circles. I've only met a few in my town and I was beginning to think there were no special needs mommies in Tucson or they were hidden away somewhere. I knew this couldn't possibly be the truth seeing as every PT and OT is booked up with waiting lists in the hundreds. I found one! Or she found me. Or I guess we found each other in a round about way. And if she's reading this, she probably thinks I'm a stalker. But it was so...nice to talk about every day life.

I try not to separate myself too much as if the life we lead is somehow special or set aside in some way so as not to be held to the same kind of standards or hum drum as everyone else's life. This is our life and this is where we are planted. BUT, it is really nice to be able to have a conversation with someone who is planted in the same garden.

This particular mommy is actually a great segway to my next subject. There is a physical therapy study going on, which I've also mentioned, that her son is participating in. I've heard about this study here and there and to my knowledge Christian doesn't qualify, which is understandable. The goal as far as I understand is to get a good read on every day physical therapy so there has to be parameters and Christian doesn't happen to fit into those parameters because of his CVI and seizures.

BUT, I called the doctor running the study, who I've heard lives and breaths this stuff. First, he picked up the phone, not a secretary or a nurse or a voice mail. Surprising! I explained that I understood that Christian didn't qualify for the study but I was still interested in what he was doing, his goals, any future studies, and any way I could help. Well, he was really receptive and suggested we meet on Monday! I will definitely update, but I'm excited to learn all about it.

We also visited the neurologist for a follow up and to talk about going to Phoenix for another neurology consult for the Ketogenic Diet. I spoke to a dietitian who was really comfortable with the diet and very used to administering it so I felt more comfortable going to Phoenix after all. All we need is to make an appointment to visit and I'm told we can probably start the diet in the comfort of our own home.

The neurologist gave us a few names to contact except for one he told me I probably wouldn't get along with. What?! Little ol' me not get along with someone? Well, I never! Ha! I actually had to laugh. He said, "No offense, you two probably wouldn't work well together." Why? Because I'm such a pain in the ass? I like it. I'm a little proud of that. No offense taken at all.

So I guess I'm planting our seeds with high hopes they'll grown strong rooms and something will bloom. Word on the street is that manure is actually quite helpful for blooms anyway.
Thursday, October 7, 2010

Fire On, Water A-Boilin'

I hear something...the sound of water boiling, maybe? Where's it coming from?

It's coming from this pot because a flame has been lit and the water is a-boilin'.

No, I'm not mad, I'm energized. I'm motivated.

Intensive physical therapy has done good things for Christian and I've learned a lot from it. As I was contemplating the next fundraiser and therapy trip I felt a little uncomfortable. Uncomfortable is really another word for guilt. I felt guilty that Christian had all these opportunities, but what about other kids? What about other parents who don't have the resources? This was Christian's second intensive physical therapy trip, in addition to the other trips we've taken for other therapies. We're not rich, by any means, in fact, we're a one income family. We make it happen, but what about other parents that don't know how or where to start? What about the families that are isolated or don't have the amazing network of other mamas out there to show them the way? Does that make their child less deserving?

Absolutely not.

My thoughts trailed along wondering why this wasn't status quo. Why isn't intensive therapy status quo? I mean it doesn't have to be boot camp. It doesn't have to be European. It doesn't have to be "alternative." The shear amount of hours spent on a child produces results and I'm convinced.

How about some perspective? Christian gets one hour of in home PT from the state per week and the state is just fine and dandy with that, pushing their family centered therapy bull crap, which actually is just a disguise for we don't wanna pay. Christian just attended a two week program, attending four hours a day, five days a week. Using my basic math skills, that's 20 hours a week in therapy.

Go with me on this one...

Let's take some of his accomplishments - more head control, increased neck strength and control, increased stomach muscle strength and awareness, reaching with open hands, and more overall movement. That took 40 hours in total to accomplish. Under the state's plan of one hour a week, that would have taken almost a year to accomplish. A scary thought.

Now, that may be using too basic of reasoning. I mean, of course, maybe Christian would have made those gains in two months or six months or eight months. We'll never know because with kids like Christian there isn't a magic number. It's - you do it 'til it sticks. If that means 100 times, it means 100 times. How is 100 times supposed to happen? In two years??? Why? When it could happen in a matter of weeks?

So I'm just wondering why this isn't the norm. Even if it's not state funded. Why isn't it available here? Why isn't it available through grants? Scholarships? Private pay?

Going back to thinking about other kids and how to get kids in need the same things I'm so driven to get Christian, I was thinking scholarship program, nonprofit, fundraising for others,...but then my husband reminded me that maybe we need to think bigger. I told pot is boiling!

And going back to intensive physical therapy, I found out there is actually a study being conducted right now through the UofA in my town. I felt a little glimmer of pride when I heard my alma mater was actually pulling through and could be doing something that may potentially help my kid. So I'm on a quest to get more information about the program (I already know Christian doesn't qualify but I still want to know ALL about it, program goals, and how it's going). I'll keep you posted on that!

So we're thinking big. Our water is boiling. I'm determined. At the very least, I really want to develop something so that other kids in need can have the same opportunities as Christian. I'll keep you posted on that, too. For now, all I can offer other families is a great list of agencies that have grants and scholarships for therapy and equipment, some of which we've been able to use. I received it courtesy of Euro-Peds. It's in my side bar and you can view the list here, too.

A couple more things...

Wanna see the coolest T-shirt ever?

I picked it up at Euro-Peds and I love it so much.

(Someone needs an iron.)

And today Christian finally got some new kicks!

They are pretty much identical to his old ones in design. And Superman, chosen by Daddy this time, had to make another appearance because he's strong, just like Christian. Another difference is that the toes are lifted slightly so Christian can get a good stretch in his toe muscle that pulls so strongly to pointing. There are also several other little dips and bumps to create pressure points in the sole to break tone.

Speaking of which, the orthodics guy was so nice. He is about to conduct a study in children about decreasing tone...without meds! What?! That's our kind of study. Sign us up! He already knows our PT, so he's going to speak to her and maybe in the next few months, Christian will be part of the study!

So, the fire is hot under our boiling pot of water and we are ready to cook something. Something big.
Tuesday, October 5, 2010

What's the Difference?

So what's the difference?

After deciding to go to Euro-Peds and following my announcement of our plans, I got a lot of support, but I couldn't help but feel confusion coming from the other end. I know many people were wondering why? and what now? and how will that be different?

I wasn't looking for anything to be different as far as therapy goes. I was looking for more intensive therapy. Period. I was intrigued with Euro-Peds and it happened to work out on many different levels.

So we embarked on our Euro-Peds journey and these are the comparisons I can gather.

First I'll tell you all a little about NAPA. It's interesting to go to another place that offers about the same type of therapy because I now have a different perspective. I'll make it clear here that I don't think one place is better than the other. I love them both equally and for different reasons and I would go back to both again.

NAPA is a huge warehouse next to the LA airport in California. It's beautifully sunny most of the year and gorgeous. I love California. It's pretty much awesome.  There are a handful of amusement parks and a ton of things to do within an hour in all directions. And there's the beach! As for NAPA it's right in the center of things. It's a really neat place. You walk in to the main area and it's wide open and bright. There's a huge plywood tree with a real swing hanging from it. There is a zipline that runs across the room where the kids are flung from one end of the room to the other and a fit of giggling ensues.

All of the stretching and exercise mats are located in the same area for the most part. All of the cages are, as well. In fact, with exception to a few rooms, mostly everything is located in the same area. This is great for meeting new parents. Really, NAPA has a great set up for other parents to meet, talk, and share experiences. There is a large kitchen and living room-like area for everyone to convene and relax. You'll often find siblings playing video games and moms chatting while typing on their laptops.

Right away, the therapist takes over. For the first two hours, at least for with Christian, there is one therapist who handles all stretching, range of motion, suit therapy, and positioning. This is pretty intense and you pretty much hand your kid to them and they take over. Kids are pushed and challenged and it's more like a PT boot camp. The last two hours consisted of cage therapy, maybe some trampoline activity, and standing for the last part of it. The wonderful Tomatis Therapy is also offered. It's a separate service and an additional one to two hours per day.

The staff is very experienced and they've worked with all levels of ability and severity. They seem to fully expect every child to rise to their potential and I like that. The real program is three weeks, but we only did one due to time and cost.

Therapy is intense, if I haven't already mentioned that. There is a lot of crying and sore muscles but there are gains from this. Christian came back with more ability to bare weight on his arms and better head control. They also loosened up his quads prior to Botox, which is a feat in itself.

Euro-Peds is located in Pontiac, Michigan. That's about 40 minutes north of Detroit. It's beautiful and green but the state has been hit hard by the economy and Pontiac seems to have been particularly economically depressed as evident in the boarded up businesses and vacant building that stand unaccounted for. But the people of Michigan are some of the nicest people I've met. They are hospitable and helpful, pleasant and unpretentious. For this Arizona girl, big trees and early fall leaves are an amazement. There were a lot of Wow! Look at those colorful leaves! as if I'd never before seen anything like it.

Euro-Peds, as I've mentioned, is in the oldest hospital in Oakland County, I'm told. The clinic is set up much like a regular pediatric clinic with a front desk and waiting room. Each child has there own, private room. It's quieter, although I'm told in the summer it gets a little more lively.

The therapy is tailored to what the child needs most. The first two hours are spent on massage and muscle warm up, primarily, and the next two hours are dedicated to physical therapy. The therapy also include electric muscle stimulation. It's not quite as intense as NAPA. There isn't as much crying. I liken it more to regular physical therapy in huge doses.

Parents are definitely taken care of at Euro-Peds. We were greeted with a gift basket at the hotel. We were given a discount to the local outlet mall and restaurants. There was a whole wall of pamphlets with things to do while in Michigan. Euro-Peds has also created relationships with local hotels and secured phenomenal rates for small apartment-type extended stay rooms with mini-kitchens, which is HUGE because we were there for two weeks! Some families are there for three and four weeks. And it was so affordable. Euro-Peds makes it easy to stay in Michigan and I felt like I had a lot of support while there.

Christian's therapist was very knowledgeable. She explained all the stretches and reasons behind each stretch and move. They also recorded sessions with Christian and put it on a DVD for me to study when we get home. Christian got a certificate of completion and a Euro-Peds t-shirt because he was a graduate!

Finacially, above all, is was less expensive to make the trip all the way to the Midwest than to drive up to California. Seriously. And, yes, I will talk about expenses which in some circles may be faux pas but it's extremely important to the decision we make as parents, let alone special needs parents. My goal is to help and inform parents and children, not worry about how politically correct I am. Bottom line is Euro-Peds was about half the cost. As for the accommodations, the deal we got on the hotel was great! I won't quote exactly in case they change it, but for a one bedroom with two queens and a pull out couch that sleeps six adults with a small kitchen, breakfast included everyday, and three dinners a week (all included) it was well under $100 a night for Euro-Peds patients and their families. Accommodations while doing therapy anywhere is one of the biggest drawbacks, usually, because it can meet or exceed the cost of the actual therapy program.

The differences...

The NAPA center is a large, bright, open room with music and parents and kids all convening in the same area. EP is in a hospital setting and each child has a private room.

NAPA is more intense with their exercises and tries almost everything available. EP customizes each program for what the child needs in a more concentrated way. EP is also not as intense in exercise.

EP is quieter, while NAPA is a little louder.

NAPA is in Calfornia, which means good weather, a ton of stuff to do, but more expensive to stay there. EP is in Michigan, which mean you should be selective in the time of year you go and it's less expensive to stay.

EP really takes care of the parents, giving local discounts and deals in the nearby community (which I absolutely love), while there's more opportunity to talk to other parents and see other kids similar to yours on a daily basis at NAPA.

Leaving NAPA we discussed which exercises would be beneficial, while leaving EP I received a DVD with footage of Christian's actual therapy and how to do it with detailed instruction (which has also been passed along to Christian's PT here).

EP includes two hours of massage with heating pads including facials and electrical muscle stimulation, while NAPA center offers Tomatis therapy, Vital Stim, and OT services.

I don't know this for sure, but I think NAPA might see more children with a greater range and severity of disability, while EP has been around longer.

EP also has a scholarship program through the North Oakland Foundation, Christian was a recipient of $1000 from this foundation, which was applied directly to his suit therapy. I was also given three pages of resources and organizations with scholarships and grant programs for various types of therapies, which I hope to be able to post on this site to help other get funding for their kiddos. There were also resources for so many special needs programs and items like abilities bikes, special chairs, conductive education, dolphin therapy, and so much more! It was a wealth of information.

I'll be posting again, and if I can think of anymore comparisons, I'll definitely share.

All of these comparisons are based solely on my own observations and experiences and most of them, I'm not saying whether one is good or bad. One child may get distracted by other children, while others are encouraged by them. One child may thrive with more intense workouts, while others respond to gentler exercises. It's all about preference and what works for your child.

With the exception of the financial aspect, I can't say for sure which program is or was better for Christian. Time will tell and we're not far enough out from Christian's therapy at EP to really make an accurate assessment. As of now, I would visit both again.

The common denominator in all of this is intensive therapy. The more hours put into a PT program the better, it's plain and simple and I am so passionate about this but I'm saving my soapbox moment for my next post.

Until then...I hope this helped those of you trying to decide on a therapy program in California, Michigan, or anywhere in the country.
Sunday, October 3, 2010

Just the Beginning...

I'm finally and reluctantly sitting down to write about our experience at Europeds. I'm fresh off the boat so I'm still dreamy from the whole experience and enamored with the entire excursion. So I'll hold back my comparisons for my next post. In fact, I'm pretty sure this will be a three-parter 'cus I've got a boat load of pictures and things to say.

I just want to write about our two weeks in Michigan right now and therapy Christian received there. I had a hard time getting the time or the words to write about it until I talked it out and mulled it around in my brain for a few days.

I'm sad the whole trip is over. I'm on trip hangover. We're right back in the swing of things at home and sometimes when you jump back into the real life that's waiting for you, it makes it seem like you were never away in the first place.

When we arrived at Euro-Peds on that first Monday morning, we found Euro-Peds on the 4th floor. It's an old hospital in a small town called Pontiac. We were greeted in the waiting area and then Christian was taken back to a "gym," which is a private room outfitted with therapy equipment. He was evaluated and the two therapists discussed with me the areas of concentration.

Therapy begins in a room with a massage table. This is where two hours of massage, stimulation, range of motion, and stretching is done. To warm up the muscles, large heating pads are placed over the legs and arms. This is also where Christian received his facial massages and where the electrical stimulation was placed on certain muscles.

Electric stimulation working with reaching.

Electrical stimulation for the abdominal muscles.

After the two hour warm up, Christian moved to a "gym." It's not a gym in the traditional sense, but it is a room with therapy equipment, swings, balls, and toys. This is where we worked on most of what was essential.

So what was essential?

Let me back up...

After moving to the gym on the first day, Christian got a stretch in his quad muscle that pushed him a little too far. I'm not really sure how because it happened at the split second that I looked away. But there was no fracture.

It kind of set a tone for those first few days. I wanted Christian to be pushed and challenged. I remember taking Christian to NAPA and just handing him over and they stretched him and he cried and they worked him and he cried some more and that was our four hours.

Because of Christian's immediate sore leg so early on, the therapists were a little more timid with him, which worried me. It worried me to the point of wondering if I had made the right decision in taking him all the way to Michigan. It was a real internal struggle for me.

Finally, at the end of week one, Christian's leg was okay again. I spoke with his therapist about the therapy and she explained something very key. We have to build on head, neck, and trunk control. Without these things, he won't be able to build on anything else. We can stand him, do passive range of motion, and all that jazz, but it doesn't mean anything unless he's got the goods.

But didn't he have the goods? Well, yes and no. He had some head control but it was very tone driven. Tone is not true head control. Extension is not true head control. We needed to build the muscles in his body truly responsible for holding his head up. And since Christian has less tone now, we have less extension, and less head control.

Finally, I got it. And the second week, I think every day Christian got a little better. We worked and worked and worked on head and neck control. Hours, literally. And we didn't only work on holding the his head up, but lifting it all the way up. We worked with reaching and touching and keeping hands open. It was concentrated, it was meticulous, but the therapist never gave up on him.

All I can say is that Christian went from this...

Lola helping brother get that heavy head up.

Just barely keeping up his head with constant stimulation.

Christian in the cage trying to keep his head up. this...

...and ended with this...

And this was lifting his head up....all the way up from resting on the himself!

We wanted another week. It was the perfect combination of pushing and challenging Christian, without causing him a lot of pain or stress.

At this point, I'm so driven to make sure he gets more of this. I'm also dumbfounded as to why this isn't available and accessible to all children who need it. It's so plain and simple. When Christian arrived at Euro-Peds he could not lift his head without using his tone and extension. When he left, he could. Not only could he truly lift his head, he was also reaching again, his hands are open and exploring the world around him, and he's moving more. Why? Because his core is strengthened.

Euro-Peds also recorded our sessions and certain stretches and exercises on a DVD so we could take it home and continue the progress.

I have so much more to say about the program, about the people of Michigan, about intensive therapy, in general. But I will wrap this up because it's now a really long blog.

Right now I just want to celebrate my little graduate!

"You did it!"
Mommy, Christian, and tireless PT, Miss Shelly

Saying goodbye.

The end...or just the beginning.

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