Lukas travels!

In: Home Update|Hospital Update|Pictures|Videos

21 Oct 2011

Well, we officially took our first trip with the little bear.  In September, we went to Baltimore so that we could take Lukas to Kennedy Krieger Institute, where we were able to meet with specialists in many fields to get as much information as possible about how we can help Lukas.  While we were there, we met with an occupational therapist, speech therapist, physical therapist, audiologist, neurologist, rehabilitation doctor, neurosurgeon, seating clinic, had an overnight EEG done and drew some blood.  It was a very busy week, but so important!  We really did learn a lot and we even had time at the end to visit the aquarium.  In general, the message was primarily that we are already doing what we should be doing to help Lukas.

One of the most important things we learned at Kennedy Krieger had to do with Lukas’ seizures.  For the past 6 months or so, we have suspected that Lukas has about 10-20 seizures every day.  They are very short (about 5-15 seconds) and really just look like a startle.  His arms go up, his eyes twitch to the left, and often he smiles when it’s done.  This has probably been going on for much longer than we realized, but we didn’t know that such behavior could be seizures for a long time.  Lukas’ neurologist here in Hawaii thinks that they probably are seizures and suggested we increase the medicine Lukas was already on.  We went from 1 ml twice a day of Keppra to 4 ml twice a day.  We were planning to add another medication to the mix as soon as we came back from Baltimore.  While we were in Baltimore, however, we met with another neurologist, who is not convinced that Lukas is actually having seizures.  He suggested we do an overnight video EEG because this could answer the question of whether or not Lukas is having seizures and, if he is, what kind of medicine is best to give him for the particular kind of seizures he’s having.  We were a bit stunned that the neurologist here did not want to do an EEG, but simply wanted to throw medicine at the problem and see if it helped.  So, the last night we were in Baltimore, we spent the night at the hospital, with a million electrodes attached to Lukas’ head.  As you can see in the picture, they cover the electrodes with gauze to help keep them on, making Lukas look like a little mummy baby.  At the same time, a video camera was watching us so that we could see if the electrical activity captured by the electrodes corresponded with the movements we suspect are seizures.  It was a long and sleepless night, but we were grateful for the opportunity to get this test done and get the information.  So far, we have not yet heard the results of the test, but we are hoping to hear within the next week.

Getting an EEG

Another important thing we learned in Baltimore is that there may, in fact, be a genetic reason for what happened to Lukas.  A couple of the doctors who saw him there noticed that Lukas has what are called Epicanthal Skin Folds.  This is very common in Asian populations, but not so common for Caucasians.  It is also often seen in people with Down Syndrome or other genetic disorders, which is what prompted the doctors in Baltimore to suggest we do some genetic testing to rule out such a disorder.  If Lukas does have a genetic disorder, it could have made him susceptible to the kind of hypoxic event he experienced at birth.  None of the doctors thought this was an incredibly likely scenario, but did think it was a good idea to rule it out, especially since we are planning to try for another baby very soon.  We had Lukas’ blood drawn while we were there (which did not make for a very happy baby) and it is being tested, but it will probably take another month or so before we will get the results of that.  We were told to wait until we get those results before we start trying for a baby, and so, we are waiting.

While we were in Baltimore, we finally received an official diagnosis of cerebral palsy for Lukas.  This didn’t really come as a surprise to us as we’ve known for a long time that Lukas had many of symptoms of CP and would likely be diagnosed with it eventually.  Cerebral palsy is a diagnosis that can really mean a lot of different things, but the main reasons for the diagnosis for Lukas are his extensive physical developmental delays and the spasticity he used to have (which has, incidentally, more or less gone away since he had the shunt surgery.  We are hoping to wean him off of his Diazepam soon since this medicine was started to help with the spasticity).  Whether or not he will eventually be able to crawl or sit or walk or talk are still complete unknowns and, while this can be a source of frustration, it is also a constant source of hope.  We remain optimistic and persistent in continuing to find the best ways to give him the brightest future possible.

Some of the good news we got in Baltimore was from the physical therapist, who told us that they are currently in the process of ordering all of the equipment that Lukas is already using in his physical therapy so that they can begin doing the kind of therapy that Lukas does.  This was very encouraging.  Over and over again we heard that the type of physical therapy Lukas is getting is what appears to be the best available.  It was nice to know that we have already made some good decisions for him.

We were also told that the fact that Lukas is able to eat orally suggests that the brain damage is not as extensive as it could have been.  Many children with a history like Lukas’ are only able to be fed through a feeding tube.  Of course, we know that this would probably be the case for Lukas as well if we had not been so diligent about getting him off the tube as early as possible.

Finally, it was also recommended by the rehabilitation doctor that we find a way for Lukas to get some reciprocal leg movements in his therapy routine.  After looking at various devices that can help him do this, we have decided we would like to get him a modified tricycle for Christmas!  These things are definitely not cheap, but it would be so amazing to give him a way to be mobile.  The tricycle can be pushed by us until he learns to push the pedals himself.  It will be wonderful to get him out in the world on his tricycle and see what he can do.  If anyone is wondering about ideas for Christmas gifts for Lukas, we would love to have contributions to the tricycle fund.  If you would like to learn more about the bike, you can go here: Freedom Concepts Discovery Series – Mini .  Here’s a picture to give you a better idea:

After visiting Kennedy Krieger, we flew to California, where we spent several days looking at possible schools for Lukas in the future and catching up with family.  We were lucky enough to have my brother and sister-in-law, Levi and Jenn visiting California at the same time we were.  My dad and step-mom also flew out to see us, as well as my cousin, Ashley and Andrei’s brother, Jeff and aunt and uncle, Linda and Skratz all drove up to see us as well.  It was a wonderful couple of days!  We are feeling a very strong desire to be closer to all our family and we are heavily considering moving to California in a couple of years.  The schools were impressive, but we are not sure where Lukas will be in his development by then and whether or not they would be beneficial for him.  At any rate, we know California will offer many many more resources for Lukas than we have here and we would love to be surrounded by more friends and family!  We definitely want to stay in Hawaii until Lukas is 3, however.  The Early Intervention services we currently have in place here are excellent and we will continue to receive them for free until then.  After that, though, the options are pretty limited in Hawaii.

So, all in all our trip was very eventful and educational and we are glad we had the opportunity to do it.  Though some of the news was hard to hear, we are constantly thankful that Lukas is such a happy little boy.  We really felt during this trip that he is beginning to interact more with us and with the world around him.  After watching many other kids with CP at the schools we visited, we are becoming more and more aware of the subtle ways that Lukas tries to communicate with us.  He is also beginning to laugh when we laugh and is definitely becoming more aware of novel sounds and people in his world.  We are seeing him reach for things more often, respond visually more often and laugh and smile much more often.  We are lucky to have such a beautiful baby boy!

With his red balloon

With his red balloon II

At the pumpkin patch

Eating with his heart spoon

Finger painting!

Lukas isn't sure about his new towel

Beautiful blue eyes!

Happy boy on the lanai with Grandma

Lukas laughs!

Practicing standing - working so hard!

Lukas loves to stand!

He's getting so good at lifting his head in tummy time!

 

Listening to music on the plane

 

With grandpa Robert

 

With uncle Levi

 

Getting his first hair cut

 

 

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1 Response to Lukas travels!

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Lin

October 23rd, 2011 at 7:40 am

Hi Aubrey and Andrei,

I was in your Bradley class. Our sons were born just weeks apart. I’m so glad to hear Lukas’ improvement. He is a beautiful boy. Am wondering if you would like to speak with my sister. She is a pediatric neurologist. She went to Duke and specialized in pediatric neurologist and has written in various medical journals. She might be someone you’d like to talk to to get another opinion about Lukas. If you are interested, please email me and I’ll give you her contact information. Hope your family is doing well. Brent Lin Noah

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This blog is all about the beautiful Lukas Timothy Tallent.

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