Happy Holidays!

In: Home Update|Pictures

15 Dec 2011

Well it has been a very eventful couple of months!  In October, we finally got the results of the EEG and genetic testing we had done at Kennedy Kreiger.  After all of the testing and waiting to hear from the neurologist there, we were finally told that we should do exactly what we had been planning to do all along.  So, we started him on a second seizure medication: Trileptal.  We have been slowly increasing his dose over the last couple of months, but have not yet seen an improvement in seizures.  Luckily, the seizures he does have are short and not particularly dangerous, so we have the luxury of time to find the right dose or to find a different medication.

At the same time, we slowly decreased the amount of Valium he was taking.  At this point, he is not getting any Valium at all, which is wonderful!  His spasticity doesn’t seem to have increased at all and it was definitely the medicine that made him the most tired, so it is fabulous to not have to give it to him anymore.  All of this coincided, however, with an increase in fussiness and irritability in Lukas, so we spent several weeks trying to figure out what could be the cause.  Since we lowered the dose of Valium so slowly, we are pretty certain it wasn’t due to that.  Fussiness and irritability can be symptoms of shunt failure, however, and, at the same time, we also noticed that his shunt seems to have moved!  The main valve used to be located in the back of his head and has slid down into his neck.  After a day at the ER and a whole battery of somewhat unpleasant tests (Lukas is such a trooper, though!) we were able to determine that, even though it’s moved, the shunt is still working properly at the moment.  This does mean, however, that he may end up having to have another surgery sooner than later since it is not located as deep in the ventricle as it used to be.  As Lukas grows, it is more likely that the shunt will come out.

After all of that, we have come to the conclusion that Lukas’ grumpiness is probably just due to the two molars and several other teeth that are currently pushing their way through is gums.  He had never really reacted so much to teething before, but it may be that the Valium dulled his reactions.  It is hard to see him cry so much more, but it is nice that he is learning to know and communicate when he’s not happy.  Thank god for children’s ibuprofen!

The other test result we had been impatiently waiting for was the genetic test.  We finally heard in November that it was normal.  This, along with an appointment with a high-risk OB, basically gave us the green light to go ahead and try for another baby!  The OB was great, answering all our questions and reassuring us that the odds are very very good that a future pregnancy will be typical and healthy.

In our last post, we had mentioned the suggestion that we incorporate some kind of reciprocal leg movement into Lukas’ physical therapy.  We had been very seriously looking into buying an adapted tricycle for him, but some recent developments have changed our mind about this.  In November, we got the chance to take Lukas to the rehab unit at the hospital and try him on a treadmill.  He was strapped into a harness, which helped support his weight, and then we helped guide his feet to take steps on the treadmill.  Here’s a picture to give you an idea:

A picture of the treadmill and harness system Lukas got to try

He loved it and he did so great!  The physical therapist that helped us with this said that he did better than many of the kids she’s worked with and she feels he has a lot of potential to be able to transition to walking with a walker eventually!  We were incredibly excited!

Since Lukas already has a harness system at home that he uses for his physical therapy, we are now looking at buying a small treadmill for him to use at home.  The physical therapist thinks this will be better than the tricycle because Lukas loves activities that include weight bearing on his legs and the tricycle wouldn’t give him that.  Furthermore, she feels it is better preparation for walking later than learning to ride a tricycle would be.  Here is the treadmill we would like to get him for Christmas:

Small treadmill for Lukas

If you would like to read more about the treadmill, you can check out the website: http://www.carlinscreations.com/treadmill3.htm  So, if anyone is interested in donating to the treadmill fund, you can do that through our Paypal account by clicking the donate button below:





The other thing that has been keeping us very busy is our work on our new website: www.LittleBearSees.com.  We created the site to help spread the word about cortical visual impairment(CVI)  and to make information about it more accessible to parents and other caregivers.  We are still working on getting the word out, but so far the response has been excellent!  There really are very few sites that offer a comprehensive explanation of what CVI is and what to do about it.  Furthermore, very few doctors and therapists that we have met know anything about CVI, either, which means they are not diagnosing it.  Lukas has made so much progress with his vision and we are saddened whenever we hear of a family whose child has gone undiagnosed simply because the doctors didn’t know about CVI.  We are also in the process of creating an iPad app specifically for kids with CVI and a book for parents.  We’ll let you know when those are released!

Now for some fabulous pictures from Halloween!  Hopefully we’ll have some video of Lukas practicing taking steps before too long!

Our Little Crab

Halloween party

Crab for dinner!

3 Responses to Happy Holidays!

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Auntie Jenn

December 15th, 2011 at 7:42 pm

So many developments, we can’t wait to see you all soon and give the little bear a big hug!! Love, Jenn

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Anne

December 16th, 2011 at 11:10 am

Great job with the website!! You are doing amazing things for Lukas, and now for others too! See you tonight!

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Mandy Bennett

January 20th, 2012 at 7:20 pm

Hey! Great talking to you the other night! I found another program you may be interested in for Lukas. Email me and I will send you the info! sawdog1223@gmail.com

Mandy

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This blog is all about the beautiful Lukas Timothy Tallent.

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  • Mandy Bennett: Hey! Great talking to you the other night! I found another program you may be interested in for Lu [...]