We love CME!

In: Home Update|Pictures|Videos

19 Apr 2012

Yes, as usual it has been far too long since our last post! So much has happened and it’s all wonderful! The most recent news is that we have been traveling with Lukas to Los Angeles the last few months to try a new kind of therapy: Cuevas Medek Eercise (CME). We heard about this through other families who have kids with cerebral palsy and have seen excellent results from CME. We decided it was worth traveling to LA to do two intensive sessions of three weeks each to see if it seemed like something that would help Lukas. We just returned from our second session in early April and we are VERY impressed with Lukas’ progress. The idea behind the therapy is that it puts children in positions that force them to respond against gravity while offering them the least amount of support possible. All of this means that the child has to work really hard, but often is able to progress faster than with traditional physical therapy. Lukas was not too happy about it in the beginning, but he got used to it over time.  If you want to learn more about CME, you can visit: Cuevas Medek.  You can also learn more about the physical therapy center we visited in LA, NAPA Center.

Our trip to California was also great because we got to spend time with a lot of family! Andrei’s dad and stepmom came all the way from Denmark to see us, my dad and stepmom flew over from Utah, and Andrei’s brother drove down from Sacramento. It was wonderful to get a chance to spend some time with everyone. We also got to meet up with some old and new friends, who really helped make us feel at home while we were away.

And now, some picture and videos so you can see for yourself how well Lukas is doing!

Pictures:

Lukas sits with minimal support!

Using his arms to help him sit

Holding up his head so well!

Standing and so strong!

Videos:

Lukas Standing CME

Lukas Walking CME

Lukas Walking 2

An Aerial Exercise

Pushing from Kneeling to Standing

Since Lukas has responded so well to this therapy, his physical therapist in Hawaii has decided to get certified in this method so that we can continue it without having to travel! She goes for her level 1 certification (there are 4 levels total) at the end of this month and we are very excited.

In other news, it looks like we will be moving in October. We always knew we would move once Lukas turns 3 because his early intervention services will end at that time. After that, services will come from whatever school he attends. In Hawaii, the options for schooling are pretty limited, so we have been looking at different schools in California. There are several great schools we are considering there, but they are all rather small, which can make it difficult to secure a spot. So now we begin the process of applying and waiting to see where our future will lead us!

We have been spending a lot of time working on Little Bear Sees as well. We have spent the last several months writing a book about cortical visual impairment (CVI). At the moment, there is really only one book out there about CVI and it’s written for therapists, not parents. Our goal was to create a book for parents that makes it easy to understand what CVI is and exactly what you can do to help your child’s vision improve. The book went off to the publisher a few weeks ago! We are expecting it to be ready in June as we have been invited to present our book at a CVI conference in June in Pennsylvania! Once it’s ready, it will be available as an e-book on our website or you can purchase a hard copy from Amazon. Very exciting!

Other than that, Lukas continues to do well and is generally a very happy boy. We have started seeing a naturopathic doctor, who is advising us on different supplements to use with him. We really feel like these are starting to make a difference in his alertness, interaction and controlling his reflux. We are excited about what other changes we might see as we continue to implement her suggestions.

Unfortunately, Lukas is still having quite a few seizures every day. We were able to get them down to about 10-15 per day with increases in his seizure meds, but recently they have increased again. Luckily, they are not very long, usually only about 5-10 seconds, but he’s having about 20 per day at this point and there is no question that they interfere with his development. As his head control and trunk strength have improved, he has gotten to the point where he can now hold his head up for much longer, but often it is a seizure that makes him collapse again. As a result, we have started looking into the possibility of starting the ketogenic diet. The diet is essentially a stricter version of the Atkins diet, which severely limits carbohydrate intake while increasing fat and protein content. This puts the body in a state of ketosis, which, for unknown reasons, seems to have an effect on the brain and decreases seizures. We know of many families who have seen very positive results from this diet. It’s not just as simple as changing the food he gets, however. Because the diet is very strict, we would have to start by spending three days in the hospital so they could teach us how to follow the diet and monitor Lukas to make sure he is not having any negative side effects. After that, we would have to measure all of his food on a scale and try to make sure he ate everything measured for him. We would also have to regular blood tests to make sure the diet is not affecting his liver or kidneys. Clearly, it would be a big change, but it could be worth it if we were able to eliminate his seizures and possibly even get him off of his current medications. It’s a lot to think about.

Well, I think that’s all the big news for now. As you know, Lukas will be 2 years old in about a month!!!! It is impossible to believe that almost two years have passed since those scary and painful NICU days, but amazing that he has come as far as he has. We are thinking a day at the beach might be the perfect way to celebrate. We wish you could all be here with us, but we know you all always are in spirit.

Some more pictures and videos!

Pictures:

Happy boy in his new sweater for cold LA

Looking at the jellyfish at the Aquarium of the Pacific in Long Beach

Asleep with his new duck from Grandpa Richard and Grandma Susan

Breakfast is so much fun!

A little blurry, but I love this smile!

Sweet smile

Sleepy bear in Grandma's arms

Lukas loves to stand!

Such a big boy!

Videos:

Lukas laughing!

Lukas laughing 2

 

 

 

 

 

 

4 Responses to We love CME!

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Carrie Wardle

April 20th, 2012 at 4:41 am

Wow! Lukas is Lucky to have such great parents, and a mom who always was a gifted writer!

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Aubri

April 20th, 2012 at 1:38 pm

Thank you, Carrie! That’s very sweet of you to say. If you ever find yourself on Oahu, let me know and maybe we can meet up!

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Ashley

April 21st, 2012 at 5:28 am

Wow! I can’t get over how strong and big he looks! Thank you for the update! When is the big birthday? Maybe I can join you on the beach :-)

Love you!

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Anne

April 21st, 2012 at 1:28 pm

I’m so happy to see all the cute pics and videos–I especially love the one of Lukas standing strong in his super cool baby Converse! And Lukas looking at the jellyfish is another favorite of mine! I’m so happy that your latest trip to California went well. Let’s get together soon to catch up. I have to say I’m sad that you’ll be moving in October:( But I know good things will come for your family in the next chapter. Lots of love and aloha, anne

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About this blog

This blog is all about the beautiful Lukas Timothy Tallent.

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  • Anne: I'm so happy to see all the cute pics and videos--I especially love the one of Lukas standing strong [...]
  • Ashley: Wow! I can't get over how strong and big he looks! Thank you for the update! When is the big birt [...]
  • Aubri: Thank you, Carrie! That's very sweet of you to say. If you ever find yourself on Oahu, let me know [...]
  • Carrie Wardle: Wow! Lukas is Lucky to have such great parents, and a mom who always was a gifted writer! [...]
  • Mandy Bennett: Hey! Great talking to you the other night! I found another program you may be interested in for Lu [...]