Happy New Year …

In: Home Update|Pictures

22 Feb 2011

So much to write about!  It seems like every time I think about sitting down to post, I am overwhelmed with how much has happened and decide to put it off another day.  Where to begin … I suppose I’ll start with the most distressing updates and get to the good stuff after.

So, the latest news is that Lukas’ head circumference has increased more than was expected by his neurologist.  After a head ultrasound, an MRI, another appointment with the neurologist and an appointment with a pediatric neurosurgeon, we now know that he has fluid build-up in the ventricles (hydrocephalus), which, if left untreated, can result in a variety of symptoms (seizures, excessive sleepiness, vomiting …) and possibly even further brain damage.  Obviously, this is pretty serious and something that needs to be dealt with soon.  It’s not an emergency as he is not displaying any of these symptoms at the moment and it appears that the fluid has been building up over quite some time, so it probably won’t increase dramatically in the next couple of months.

There are two possible treatments for hydrocephalus, both of which are surgical.  One is to put in a shunt, which would drain the fluid from his brain into his stomach, to be reabsorbed there.  The other, is to put a hole in one of the ventricles and let the fluid drain on its own and be reabsorbed back into the brain.  The shunt surgery is what the neurosurgeon is recommending, but it has a high chance of known complications.  The doctor says there is about an 85% chance that the shunt will fail at some point, either due to infection, blockage, or wear and tear.  This is especially common for shunts put in babies because they are adult-sized shunts that are expected to grow with the child, but often they end up getting calcified and breaking instead.  Shunt failure would, of course, lead to fluid build up again and another surgery.  The second option, however, is not one that the doctor feels Lukas is a good candidate for.  He said it has about a 50% chance of failure for Lukas because he’s not sure if Lukas’ brain is capable of reabsorbing the fluid on its own.  If it failed, we would have to do another surgery to put in the shunt.  Also, even if it works, it takes a couple of months before we can know if it’s working.  In that time, if it doesn’t work, the fluid will continue to build and could, as mentioned, cause more problems.  If it worked, however, there would be no need for further surgeries in the future.  It’s a tough call, but the neurosurgeon is recommending the shunt surgery and that is probably what we will end up doing.  Some time either this week or next, we are going to get a second opinion from another surgeon and then make our decision from there.

In better news, Lukas has been smiling, laughing and talking so much more!  During the holidays, we had a lot of visitors and he really seemed to enjoy everyone’s happy energy.  On Christmas Day, as we were all opening presents, we looked down and saw that he had a big smile and then he let out his first laugh!  It was the best Christmas present of all.  He also really seems to enjoy when we sing to him.  He often smiles and tries to look at us and then he will sing along with us.  Novel sounds also seem to capture his interest.  He got a stuffed dolphin for Christmas from his aunt Karen and uncle Mallory that plays whale sounds.  Often, when we play it, he’ll turn his head toward it and talk and laugh.  It is so great to see him interact more with us and the world around him.

We have also been working with a vision specialist more to help him with his vision and we have been reading a book about Cortical Vision Impairment.  It is very encouraging because the condition almost always resolves to some extent and the earlier we intervene, the better.  We work with him by presenting him with objects that he seems to prefer.  For Lukas, these are usually monochromatic (either red or yellow), shiny, and/or objects in motion.  He also still responds to high-contrast objects as well as long as there are not more than two colors.  We bought him an Elmo doll and a Big Bird doll, which he really seems to like.  Often, when we show him these toys, he will smile and laugh or talk to them.  It often takes him awhile to focus on them and, even after he does, he will look away and then look back again repeatedly.  This is common with CVI, but the important thing is that he keeps looking back to the object.  Every time he does this, the neural pathways in his brain get strengthened and, eventually, he will be able to see more complex items and be able to focus for longer periods.  As I mentioned above, he sometimes even tries to look at our faces, even though faces are incredibly complex for kids with CVI.  It is very exciting to see the progress he is making!

In terms of his physical development, Lukas is still doing physical therapy for about three hours a day.  He is still working on building his neck strength, rolling, and trunk strength primarily, but he is steadily making progress.  Early Intervention continues to provide occupational therapy, speech therapy and vision therapy, but they are also going to start bringing in a physical therapist to work with his regular physical therapist.  We figure the more resources we can offer him, the better.  We are also considering trying a different kind of therapy known as Advanced Biomechanical Rehabilitation.  We are still learning about it and aren’t sure whether or not it will be worthwhile yet, but from what we know so far, it looks promising and seems to have helped a lot of kids like Lukas.

Speaking of Early Intervention, they recently came in to do an assessment because they have been working with him for six months already.  The assessment found that, physically, he is mainly about at the 0-2 month level, but in other skills, he is about at the 5 month level!  This is very exciting because it really helps us to see how much progress he has made!  We know he will just continue to make more progress as we continue to work with him.

Lukas is still doing very well with eating solids too!  He has tried a number of different things at this point, but pears are still his favorite.  At this point, he usually eats about two ounces twice a day and manages it pretty well.  For the last week, he has had a terrible cold and so we have been holding off on the solids, but he was doing wonderfully with it before the cold hit.  This cold has been very tough on all of us (Andrei and I got it too).  Lukas had a fever for several days, and still has a cough and lots of mucus.  Not fun at all for a little baby!  Luckily, he is getting better and will probably be fully recovered long before Andrei and I are!  At the same time, he’s also finally starting to get some teeth!  His gums are pretty red and swollen and, on the bottom, we can see two little teeth just barely starting to poke through.  Fortunately, it doesn’t seem to bother him as much as I would expect.

Well, I think that’s about all for now!  Some scary news, but generally we are so happy with how well he is doing and we are certain he will conquer this new challenge with the same stubbornness as all the others before it.

Lookin' cool

Playing with the yellow balloon.

Chinese New Year Parade

Watching the parade

With Mom at the aquarium

With Dad at the aquarium

With Grandma Tallent

Christmas presents!

2 Responses to Happy New Year …

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Monica Henderson-Salomon

February 22nd, 2011 at 7:11 pm

That is some pretty scary news, but I think it sounds more scary to you than it should. My cousin had her baby at about 25 weeks along. Sierra was 1lb 6oz at birth. She had a shunt put in very soon after her birth. She will be 17 years old in July! and She did have to have her Shunt replaced when she was about 10 years old. I have faith that Lukas can handle it! :) He is a tough little man! :)

He loves pears huh?? Isabelle really loved her pears too! She definitely preferred fruits over veggies. Now she is an applesauce fiend! Especially when it is made by her Aunt Rachel! :) It is soo great to hear that he is doing so good eating solids! :)

Not sure if you guys know that when some little ones have teeth sprout, that they can have a funny nose. Every single time Isabelle has a new tooth come in, she has a runny nose for about a week.

I love the “Christmas Present” he gave you! :) The first time I heard Isabelle laugh a real laugh, I was soo happy that I cried! :) It is still the sweetest sound to me. :) Thanks for the update! :) And keep them coming! Or I will have torture Jeff with cold showers or something! 😉

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G. P. Skratz

February 25th, 2011 at 4:56 pm

Sorry to hear that we’re still on the roller coaster with an upcoming surgery, but, MAN, do you guys ever seem to be one joyous family! Love to see & hear about all of it! & wow: is he ever MR. COOL Himself w/those shades! He’s got himself a spot on my band if he’s ever tooling through Oakland! We could USE a hip young person, actually…

Hope you can spare Jeff them cold showers!

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This blog is all about the beautiful Lukas Timothy Tallent.

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