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

 

 

 

 

 

 

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!

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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Yes, as usual it has been far too long since the last post!  Since our last post, so much has happened, the most important of which is that Lukas turned 1 year old!!!  We had a fabulous time visiting the aquarium (he loves to look at the fish and the jellyfish), eating red velvet cupcakes (well, as you’ll see in the pictures, he didn’t enjoy that as much as we’d hoped!), and playing with all the new toys!  Thank you everyone for the lovely gifts and birthday wishes!  It is truly hard to believe that it has been a year already.  We are so blessed to have Lukas in our lives and so blessed by all the progress he has made over the past year.

Since Lukas’ surgery we have seen so many positive improvements!  The best one is just how happy he is.  It used to be that days would go by between smiles, but now he smiles every day!  Every morning he wakes up with the biggest smiles and loves to play before we get our day going.  He is starting to get a bit ticklish and tickling his belly and feet sometimes makes him laugh.  He also loves kisses from Mom, which is fortunate because he gets covered in them whether he likes it or not!

His vision has been improving a lot as well.  He is looking at things more and starting to look at different colors than he did before.  More and more often now he’ll lift his hands to touch something that he’s looking at.  It is very encouraging to know that he will just continue to make progress over time as long as we continue to work with him.  After a visit last month from an expert in cortical vision impairment (CVI), we have been learning more and more about what we can do to keep improving his vision.  She was very optimistic about it and we really have seen great improvements even in the past year.  There was a time when it was unclear if he could see at all, but now he is even starting to look at faces, which can be very difficult for kids with CVI.

Lukas has also been communicating better since the surgery.  He’ll let us know if he is tired or frustrated or if he really needs something.  He doesn’t always communicate when he’s happy, but we have faith that that will come in time.

It is amazing how well he is eating these days!  At this point, he is up to about nine ounces a day of baby food plus four bottles a day.  It used to take him about 30-45 minutes to drink his bottle, but now it usually only takes about 20!  We are starting to introduce him to thicker foods and chunkier foods too, which he is getting better and better at eating.  It was such wonderful thing to be able to give him a cupcake for his birthday.  We are so so thankful that he no longer needs that feeding tube!

At his last check up, we learned that he is in the 90th percentile for height and 75th percentile for weight!  He is already 25 pounds, which is just about the same weight as some two-year-olds we know!  He is definitely a big boy and he is already outgrowing some of his 24-month clothes!

Lukas has been doing so well with his physical therapy these days too.  He is really starting to get head control and is even able to lift his head up to 90 degrees at times when he’s on his belly.  He does best right after a nap, but then that’s probably true for most of us!  His therapist has him spend a lot of time practicing rolling, holding his head up on his tummy, standing (which he loves), and sitting.  We have also been visiting the pool fairly often  and occasionally the beach as the weather’s gotten warmer.  He seems to enjoy it, though he definitely lets us know when the water’s too cold!

Well, I think that’s all the news for now.  Below, you’ll see lots of pictures of Lukas’ birthday, some of his physical therapy, and a great video of him talking to his stuffed monkey.  The monkey has his own voice recorded on it and he really seems to respond to that.  Lots of loves to all of Lukas’ fans!

He's lifting his head so well these days!

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In: Home Update|Pictures

7 Mar 2011

As of yesterday morning, we are home from the hospital!  The surgery went well and we noticed an immediate difference in the fullness of his soft spot after the surgery, so it is clear that the fluid is already draining.  Lukas had some nausea and vomiting for the first twelve hours or so after the surgery, but they gave him some anti-nausea meds and they helped a lot.  His pain doesn’t seem to be too bad.  He has only needed tylenol intermittently for the pain, even though they were prepared to give him morphine, if necessary.  We were really lucky that he didn’t have a roommate until just a few hours before we were discharged.  This meant that both Andrei and I got to spend the night at the hospital with him, though none of us got much sleep.  With the constant beeping of monitors and checking of vital signs by nurses and doctors, it’s amazing anyone gets enough rest in the hospital to actually recover!  Not mention how wonderfully comfortable those hospital “beds” are.  At any rate, we are very happy to be home and to see him recovering so well.  The doctors say that he’ll probably not have much pain at all after the first week and should be able to go back to his physical therapy.  It will be very interesting to see if we notice any positive changes in him now that he has less pressure on his brain.  We really appreciate all of the support and encouragement.  It has been a challenging couple of days, but it has gone as smoothly as possible.

Sleepy Mom and Baby

Recovering with Elmo

So, we decided to go ahead with the shunt surgery and it is scheduled for Friday, March 4 at 12:15 pm.  We weren’t expecting it to get scheduled so quickly, but it’s definitely better to get it done with.  The actual surgery will take about 45 minutes, but he will probably have to be in the hospital for about two days afterward.  We’re not sure yet if he will be in the pediatric intensive care, or if he will be in a room on the regular floor.  The latter is preferable for us, because then at least one of us can spend the night with him.  It is definitely scary to think about him having surgery at all, but we know this is not an uncommon surgery and that it will help him a lot.

Now that he’s finally getting over his cold, Lukas has been talking a lot more!  We’ve included a few videos of this.  As you’ll see, he loves it when we sing to him and likes to sing along.  We’ll keep you all updated about the surgery.

Enjoy!

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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!

Lukas has had a lot going on lately!  Today, he had his first few bites of baby food!  His speech therapist helped us to give it to him so that it was as successful as possible.  Lukas wasn’t quite sure what it was or what he was supposed to do with it, but he definitely made some attempts to deal with it and swallow, which is very encouraging! He didn’t spit any of it out and he didn’t really seem to mind it too much, either.  You can see our first attempt in the video below!  We’re going to try to feed him a little bit, once a day and help him build the skills to eat more.

Over the past month, we’ve also discovered that the source of his fussiness and discomfort was likely nothing to do with teething or reflux, but with muscle spasticity.  It took us awhile to figure out that the increasing tension in his legs and arms was not voluntary, but actually a result of the brain damage to the motor areas of his brain and that it was pretty uncomfortable for him.  Once we realized this, we took him to see the neurologist, who promptly put him on a very small dose of Valium.  This is a common medication given for spasticity, and also seizures, but drowsiness is one common side effect.  We were worried that it may relax his muscles, but make him too sleepy to really function.  Fortunately, it seems to be making an amazing difference for him.  His nightly crying spells are completely gone and he has started kicking his legs and talking again, which he hadn’t really done for about a month.  He also doesn’t seem too sleepy.  He gets pretty drowsy right after we give him the medicine, but it doesn’t seem to bother him for most of the day.  He also seems like he is looking at things more and interacting with things more.  It seems all the tension in his muscles was distracting him too much to allow him to focus on anything else.

Meanwhile, we also had a visit to Lukas’ nephrologist recently.  He’s the doctor who monitors Lukas’ high blood pressure.  He took Lukas’ blood pressure and it was finally low enough for us to try taking him off of his medication.  He hasn’t had any of that medicine for a few weeks now and seems to be doing just fine.  We’ll see the doctor again in another few weeks and make sure that his blood pressure is staying low.  At this point, he is now on one seizure medication, one reflux medication, and one spasticity medication.  His reflux also seems to be slowly improving, so we should be able to take him off of that one before too long as well.

Early Intervention services have also recently brought in a vision specialist to work with Lukas.  She told us that Lukas seems to have cortical visual impairment, also known as CVI.  This basically means that his eyes are structurally fine, but his brain is not necessarily processing all that he sees.  Kids with CVI share some common characteristics, like preferring high-contrast or simple images, preferring light, bright colors (like red and yellow), and shiny objects.  They also tend to not see things very far away, tend to prefer looking in one direction, and tend to prefer familiar objects.  Lukas does all of these things.  The good news is that it can get better as the brain grows and reorganizes itself.  Of course, we have no way of knowing how well he can see now or how much better it might get, but we are hopeful.  The vision specialist gave us some ideas of what we can do to keep helping him develop his vision.  She was also very encouraged by how much he does seem to see, so all in all it’s a positive situation.

Lukas is getting to be so big and so handsome!  He’s wearing 9 month old clothes these days, though he just made seven months.  He weighs about 18 pounds now too!  We are so encouraged with all of the progress we’ve seen lately and Lukas continues to do great with his physical therapy as well.  He is getting good at holding his head up and is learning to support his trunk more too.  As you can see from the pictures below, he may just be the cutest little baby ever!  Enjoy!

Lukas loves his bath these days! He's so relaxed, he often even falls asleep!

Hanging out at home

Looking cute

Little Bear in the yard

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Halloween

In: Home Update|Pictures

15 Nov 2010

I forgot to add the pics from Halloween, so here they are!  We went to a party at a friends’ house down the street.  Some friends had given us the little monkey outfit for Lukas, so Andrei and I decided to join him and go as a monkey family.  Pretty silly, but he was so cute, though a bit grumpy in the photos.  Enjoy!

Silly monkey family

Lukas looks disdainfully at the camera

Our little monkey!!

I know, it’s been far too long since our last update!  We spend so little time at home these days, that it’s been hard to find time to post.  Lukas has been having a tough time lately.  For about the past week, he’s often seemed quite uncomfortable when taking his bottle, arching his back and squirming a lot.  Towards the end of the day, he’s usually just too fussy to take it at all and trying to give it to him can set him off on a two-hour inconsolable crying fest!  His pediatrician thinks he might be teething, though we can’t see or feel any signs of that in his gums.  His GI doc thinks his reflux may be coming back.  His speech therapist thinks I should, sadly, stop eating so much chocolate.  It’s hard to know what’s going on, but we’ve increased his reflux medicine, just in case, though this can take a week or more to take effect.  I’ve also cut out the chocolate for now to see if that helps.

For the past two days, he’s also had a low-grade fever and has been sleeping a lot.  This lends support to the teething theory, but it may be unrelated to his other troubles.  Needless to say, we’ve had a rather unhappy baby of late!  We’re really hoping something will make him feel better again soon!

In the last few weeks, we’ve had a couple of doctor appointments, which are becoming increasingly more positive and less frequent.  The neurologist has taken Lukas off of his phenobarbital completely and so far we don’t think he’s had any seizures.  He occasionally displays some behavior that *might* be seizure behavior, but it always lasts for just a few seconds, so it’s probably not harmful even if it is a seizure.  He’s still on one anti-seizure med, Keppra, but that one has less severe side effects.  Since he’s come off the phenobarbital, he seems to be generally more aware of his surroundings and is smiling more often!!  We are very excited about that!  It’s also been great to have one less medication to force down every day.

We also saw the ophthalmologist recently, who said that he sees huge improvement in Lukas’ vision.  He said he can definitely see, it’s just a matter of how well and we won’t really know that for sure until Lukas is older.  He noticed that Lukas’ eyes drift a bit when he tries to focus on things, but he said it’s fairly minor and may improve on its own with time.  We keep working with Early Intervention to help him look at things.  He still prefers high-contrast images, but not just black and white anymore.  We have a dinosaur book with brightly colored high-contrast pages that he really seems to look at.  He also likes anything shiny!  Grandma Susan and Grandpa Richard in Denmark recently sent some black and white books in Danish that he really seems to enjoy.  Lately, when we read books to him, he’s started putting his hands on them and pushing.  Sometimes he’ll hold the edges of the book along with us!  We are confident that his eyesight will continue to improve over time.  He definitely seems to see more, looks at our faces a bit more often, and tracks a little bit better than he did when he first came home from the hospital.

He’s still doing great with his physical therapy too!  He still loves to bounce and is doing really well holding his head up when sitting or on his tummy.  He’s getting better at rolling too, though he still detests having to do it.  Yesterday, he actually smiled while he was on his tummy, which was not something I ever thought I’d see!  After that, he rolled back onto his back by himself for the second time.  Usually he needs at least a little help in rolling.

Well, I think that’s all the news to report for now.  We really appreciate all of your comments and thoughts and patience with our very sporadic posting!  Now for some pictures and video!

Lukas in his new chair.

From the archives: Little bear with bear.

Lukas loves his little pink bouncy seat!

The cutest smile ever!!

Practicing sitting with Mom

Sleepy bear

Happy baby surrounded by toys!

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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 [...]