Poor baby!

In: Home Update|Pictures|Videos

12 Nov 2010

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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8 Responses to Poor baby!



November 12th, 2010 at 5:54 pm

I was so glad to read the update about Lukas, and especially glad that he seems to be improving. He’s such a darling baby. Are you not staying home because you’re at appointments for him? Do you get out with him in the stroller to the beach or wherever? I hope you are enjoying him every moment!


Becky Christensen

November 13th, 2010 at 1:50 pm

Sorry to hear Lukas is a bit unhappy but sure he’ll get feeling better. Wonderful other news though!…Keep up the good work to all three! Love you



November 13th, 2010 at 9:53 pm

I guess I should explain: we’re never home because Lukas’ therapy equipment is all at my mom’s apartment (she has more room) as is the portable hyperbaric oxygen chamber which we use five days a week. We also have a lot of doctor appointments too. We do manage to get out and have some fun sometimes, though. We’ve taken Lukas to the pool, the park and the mall, among other places. He’s not a fan of his car seat, so we try to go only place within walking distance when we can.


aunt jenn

November 15th, 2010 at 5:07 pm

so excited to see him in december, he’s improving so much – such a strong-willed baby. love you all and big hugs from over here.



November 15th, 2010 at 5:28 pm

Nice to have an update! Thank you for doing these despite how busy you must be. That last photo of happy Lukas is just too adorable! Good to hear he continues to improve. Sending lots of love



November 15th, 2010 at 8:01 pm

Hi! I was just checking in you the blog– Sorry to hear that Lukas is fussy. I hope he feels better soon! Great news about all the dr. appointments, though! Take care!


aunt bean

November 18th, 2010 at 7:41 pm

So handsome, love the costume (all three). It’s great he is coimg off some of the medicines especially the pheno that stuff can make you not yourself. Thanks for the pics! Bean



December 7th, 2010 at 10:11 am

Sorry he hasn’t been feeling well but excited to hear about all of his progress!! I miss you friends!!

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This blog is all about the beautiful Lukas Timothy Tallent.

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