Friday, December 30, 2011

ABM Therapy

We are adding a new member to Team  Luke!  I took Luke to meet a new therapist named Chad Estes with Evolution Through Movement (http://www.evolutionthroughmovement.com/).  He is trained in the Anat Baniel Method (ABM).  In a very, very simple nutshell, this kind of therapy teaches children movement that helps their brain create new connections.  I've been reading this book, The Brain that Changes Itself.  It basically deals with the plasticity of the brain and the ability of the brain to create different pathways to overcome damage.  I know that the damage to Luke's brain can't be undone - ever.  But I do believe that his brain is working hard to make different connections and overcoming the damage to his brain.  Hopefully working with Chad will help Luke make those important connections and fire up parts of his brain to take over different things that the damaged parts can't. 

I first heard about this therapy from a friend I've made because of this blog - Susan.  Her son has macrocephaly and PMG also and he has been doing this therapy for awhile now.  She loves it and it's been helping her little guy.  I read about it awhile ago but didn't think it was available in this area. 

Soooo we're going to give this ABM stuff a shot.  It's a very intensive therapy that at this point is not covered by insurance.  We're not sure what to expect but we feel like it's one more thing we can try to make sure we give Luke the best chance possible.  We're starting a little under the recommended therapies.  We'll be going 2 days per month with 2 therapies each day.  From what I understand - 5 therapies is the lowest recommended number.  Due to my work schedule and concerns over Luke's tolerance we're starting out slow...

I wasn't sure what to expect when we met with Chad.  And honestly both Luke and I were a little under the weather so I wasn't expecting much.  But it went well.  Chad was very calm with Luke.  It looked a lot like he was just massaging Luke and moving his body parts around.  While he was doing it, though, he was quietly commentating on everything he was doing to Luke.  And he was speaking to Luke not me.  He encouraged me to give him snacks/drinks while he was working with him so he was comfortable and happy.  While it looked very relaxed and calming - the things he was doing were very deliberate.  It's hard to explain but I was impressed. 

Here's a little bit of an explanation.  There's a link to the website if you're interested in reading a little bit more about it.  And just to clarify - we are NOT ending any part of our traditional therapy.  I LOVE our therapists and credit them with Luke's amazing progress so far.  We are looking now - and always - for anything at all to further Luke's progress.  I don't know if we're going to love this or not but we're going to go ahead and give it a shot! 

With the ABM the focus is very different. Rather than try to fix the problem directly by focusing on the limitations, the focus is shifted to where the solutions actually lie – with the brain. The ABM focuses on helping the brain of the brain injured child do its job better. It helps the brain right itself and regain its ability to powerfully and consistently create new neural patterns that bring about successful solutions. We apply gentle techniques that directly communicate with the nervous system of the child through, primarily, movement, enhanced awareness and non-verbal kinesthetic experiences. With the ABM, the brain of the child with cerebral palsy or any other brain injury regains its ability to function in a healthy way. That is when the brain damaged child can begin doing what healthy children do.
(from http://www.anatbanielmethod.com/cerebral-palsy-treatment.htm).

That's it for now!!  I'll update you after our first FULL intensive session!

Wednesday, December 28, 2011

We love you, Miss Erin!


We had a wonderful, uneventful holiday.  We enjoyed time with both of our families and had lots of down time.  Luke has been continuing to grow by leaps and bounds!!  He's starting to use his fork and spoon successfully.  He's drinking from an OPEN cup pretty well with limited spillage.  He's spitting out  more and more words everyday!  He is a little monkey climbing up on everything and creating danger everywhere he can!!  We couldn't be more thrilled. 
Look at this fork action!!!  And yes, he's also ready
to pick up a handful with his hands, too, but I'll
take what I can get!!

He wasn't a huge fan of Christmas with all the noise and excitement.  He's a pretty low-key kinda guy!  He would've been much happier if we let him climb up and down the stairs everywhere we were instead of forcing him to open his brand new, fun toys.  I know, we are awful parents. His presents largely centered around OT/PT/Speech but I think they were fun enough that he didn't really notice!  He did get a really cool dog from Santa Daddy!


I do have some sad news to share regarding Luke.  As I've said before - we've been blessed with fantastic therapists.  His OT and PT have been with us since he was two weeks old-regular, solid, dependable.  I have often talked to them about how worried I was to lose them when he turns 3 and is not able to be in the First Steps program anymore.  Well, sadly, our OT is moving on to help other children at a school in the area.  She will be working mostly with autistic children - our loss is definitely their gain.  I am truly devastated which might seem silly but I am.  Erin is so sweet and patient with him at all times and with me.  She answers all of our questions patiently and has helped Luke progress in ways Dan and I never would have been able to do on our own.  She is very sweet with Ben and always takes time with him at every session to listen to his stories, let him play with her toys and allow him to climb all over her for a little while.  We will get a new OT - hopefully quickly - but there is no possible way to replace Erin.  So while we wish her all the best - we will miss her more than she can imagine. 


We will miss you, Miss Erin!!
The new year will quickly be upon us.  We've had a lot of ups and downs this year - but mostly ups.  We hope that 2012 will bring lots more ups for Luke and our family. We have some exciting things (we hope) in store for Luke.  We are looking into a different kind of therapy that specializes in people with brain injuries/abnormalities.  We meet with the only person in St. Louis who offers that therapy tomorrow and will keep you posted on what that will look like when we find out more.  We are also hoping to get Luke signed up for Equine Assisted Therapy in the spring if there are times available that work for our crazy schedule.  We are going into 2012 hoping to continue to not only do our best for Luke but do all that we can to ensure that he reaches his best potential! 

We hope that your families had a wonderful Christmas and celebrate a safe, relaxing and uneventful New Year. 
Playing on my new trampoline.  Luke's Grandma Beth takes him to a gymnastics class once a week offered by PT's from the Cerebral Palsy clinic at Children's.  It took him a little bit to warm up to the class.  He now really seems to enjoy it and she discovered he likes to bounce on the trampoline. 


Annndddd....let me try to climb off of the couch this way!  He has been caught several times by the back of his pants as he tries to launch himself off the side of back!! 


Super Ben and Super Luke gearing up for a whole new year of amazing everyone!!

Happiest of New Years to everyone!!!

Monday, December 12, 2011

MAMA!!!!!

Sooo many exciting things going on with Luke these days!  First, as you can tell by the title of the post - we have MAMA down pat!  He's been saying mama for awhile but not necessarily in reference to me.  NOW I AM MAMA!!!  It's so exciting! 

It's especially exciting because I really feel like his language is taking off right now.  He has lots of words now...mama (!!!), daddy, ball, up, down, all done, more, outside, apple, elbow, duck and a few more!  A lot of his words he tends to say the beginning of the word (duh for duck, sss for stomp, smoothie and spoon) but he's consistent.  He will sometimes get a word and then lose it but our speech therapist feels like he's gaining more words than he's losing. 

He also seems to really be understanding language and making lots of connections.  Saturday the most exciting thing happened!! (Now, prepare yourself, I might be a little more excited about this than you will be - but it was really, really exciting to me!!)  Dan left to go to the store and I was working in the kitchen.  Luke was playing with his toys in the kitchen.  All of the sudden, he went over to the chair where his coat was and brought it to me.  He was shoving it at me saying 'Daddy.  Outside.'  I tried to explain that Daddy was gone, but I went ahead and put his coat on him.  He walked over to the garage door and stood there saying 'Daddy.  Outside.'  (Kind of pitiful, really....)  It was SO exciting to us because he knew he needed his coat to go outside, he knew where to get it and to bring it to me, he was able to SPEAK to communicate what he wanted AND he knew to go to the right door!!! 

He's also developing quite the attitude!!  When he gets mad at us, he blows raspberries at us.  Now he's squatting down with his hands on his knees screaming at us when he gets mad.  It is great to see him developing all the normal toddler craziness!!!

Ok, the rest of this we'll call the 'Pictures episode'. I have pictures from when was casted for his new feet orthotics. I also wanted to post some pictures of him working with his OT, Erin, because I haven't yet. And of course some random recent pictures:)! Enjoy!



This is part of getting 'casted'.  They put bandages around his legs and dampen them.  They only have to dry for a few minutes and then they cut them off. 

The one on the left is for his right foot - his AFO.  This one goes to about the middle of his leg.  It will control the snapping of the right leg.  The one on the right is his SMO. This is what he was wearing before. 



Sporting his orthotics for pajama day at school!!  He seems really comfortable in them - I really wish this was something that they had that adults could try on.  They don't look comfortable AT ALL but he doesn't seem bothered by them.

Playing with Miss Erin!  He's working on his fine motor skills - strengthening his hands and using his pincer
grasp.

Do you want more, Luke?? 

Miss Erin has to get very creative to keep Luke's attention!!  He wanted to play on his zebra so she adjusted therapy so he could play on his zebra.  She was working on his hand/eye coordination. 


My sad attempt to get a picture with my boys....this is Luke's 'mad' face I wrote about!!  I love it!!


This is one of my favorite pics of Luke.  It pretty much sums up his personality!  He makes this face at us often right to the dripping drool!!







Friday, October 28, 2011

NO SURGERY!!!!

Luke's MRI was this morning.  Everything went well.  His ventricles have not enlarged very much since his last MRI so that is great news.  The fluid around his brain has also slightly decreased - which is great news. 

When we were on our way to the hospital this morning we were resigned to accept whatever happened.  I said that my first choice would be that they would say that his ventricles haven't really enlarged, we'll keep an eye on it..no worries.  And they essentially did. 

I also was worried that they'd find something new or different wrong.  I didn't want one more thing to worry about.  Dr. Limbrick (super awesome surgeon) took us to show us the MRI scans.  As he was showing us, I noticed that it said that he has damage to his perisylvian area.  Some types of PMG have that word in it.  I've read about kids with damage to that area and thought that we didn't have it.  Well, I thought wrong.  His is damaged and has been all along.  So there's not something 'new' wrong, just a little more damage than we knew about.  It is an area that has a lot to do with language development (from what I understand) and we already knew there was a problem in that area. 

When we first found out about Luke's diagnosis, I still had a small, secret hope that they'd do his MRI after he was born and come back to us apologizing profusely for messing up because they were wrong.  I was on the fence about starting this blog because I was hopeful that I'd have to quickly shut it down with a 'Whoops!  Sorry, the doctors were wrong...didn't mean to worry everybody!'  Then I'd think that, fine, if he had to have this stupid PMG then maybe the damage wouldn't be as extensive...maybe it was only on a small portion of his brain...not almost the whole thing.  But I guess it doesn't matter.  It seems like no two kids with a PMG diagnosis  - even if it's the same - are doing the same thing or progressing the same way.  So another little piece of puzzle isn't really life altering here.  I just hope it's the last piece of the puzzle and there are no more unknowns out there.  Maybe these are the stages of accepting a PMG diagnosis?? 

So our good stuff - it's what we like to focus on!!
1.  NO MORE SEIZURES!!  (Dan WILL be knocking on wood when he reads this.  Wouldn't hurt if you did, too, please!)
2.  In the last week or so, Luke has REALLY seemed back to his old 'self'.  Really back.  He's pretty much always happy (except around doctors...he doesn't like anybody in scrubs!).  He's eating great.  He's making lots of progress! 
3.  We have AWESOME doctors and care from Children's.  I've 'met' some people already through this blog and other support groups. I've learned that we are so, so lucky with the exemplary care Luke has received and will continue to receive.
4.  You guys.  As usual.  You're the good stuff.  Thanks for all you do to support us.  We have had a relatively easy ride so far - busy, but things could be much worse.  It's nice to have you all here for us for whatever life throws at us.
5. And of course...this has nothing to do with Luke...but the Cards in the World Series.  Obviously, that's the good stuff!  Now if only I could pretend like I was going to stay awake throughout the game tonight....Go Cards!!

Sunday, October 16, 2011

Hanging in!!

Luke had a really good week!  No more seizures!  He seems to be adjusting to his medicine well.  WHEW!  Every day that passes without a seizure helps us to breathe a little easier.  We so appreciate all the sweet words and phone calls this week.  It helps us so much to know that people are thinking about him and pulling for all of us. 

We met with the neurosurgeon this week and I just wanted to give you a little update on that.  First of all, I didn't think there would be a need for an update.  I thought (as my sister in law says) we were just going in for a 'meet and greet.'  Not so much.  There is no huge alarm right now but it was disappointing.  I thought we knew all that was wrong with Luke's  brain.  And we might.  But we might not.  Basically in a nutshell (since I keep writing these short novels!!!) the surgeon is concerned enough about the enlarging ventricles to order another MRI sooner than later.  He thinks there might be another problem in Luke's brain where there may be a blockage not allowing the spinal fluid to pass through therefor causing the enlarging ventricles.  Both problems are correctable...surgically.  BUT no one is saying that we are anywhere near that now - or (HOPEFULLY) ever. I think that I have been telling myself that surgery wasn't really ever a possibility so it was a little bit of an eye opener to me.  Thankfully Dan went into the meeting more realistically so a level of calm was maintained!

The great news is that the day we have the MRI we will also meet with the surgeon and should have our answers.  He said at this point, best case scenario is we go in for the MRI and not much has changed and we come back for another in 6 months.  So that is what we are hoping for.  After having a little time to process, we're glad that he's getting this MRI sooner than later because then we know that he is being monitored closely and if the ventricles are enlarging enough to become a problem then it will be caught quickly.  The problem is that the signs that the enlarging ventricles are a problem are the SAME as the side effects of the medicine and the aftershocks of seizures!!  So it's really a blessing for our peace of mind to get this MRI quickly. 

The MRI is tentatively set for October 28th so again we wait...I should have called this blog 'Waiting'!!!  :)  Honestly, right now our biggest concern is making sure his seizures are under control and at this moment in time they seem to be. So we are very happy! 

This fall has been a little bit more difficult than we anticipated.  We are very lucky to have understanding employers, caring and concerned friends and a loving family to get us through.  We continue to celebrate the fact that Luke is doing far better than we ever expected.  We'll update more after the MRI!  Fingers crossed for another 6 month waiting game!!!!!!

I started this way earlier today.  Since then I found out a good friend's son had a major seizure today.  There are major and minor ones.  To every parent, seizures are major ones.  But I need to remind myself often and be thankful that we have only really had minor ones so far and hope that it continues that way.  To all the families out there who are experiencing any kind of seizure or worrying about the probability of a seizure...our hearts go out to you. Thinking of you J & hoping you are all resting well tonight...

Monday, October 10, 2011

So far, NO good....

One of the scariest things about this whole PMG diagnosis is the seizures.  We were hoping (duh!) that we'd escape that aspect of PMG.  No such luck.  Now, even with medicine, they are unfortunately increasing.  Luke had two seizures over the weekend.  I say that with sad confidence even though we didn't witness either one. 

When we first brought him home, I was terrified.  Babies are so jerky and weird!!  EVERYTHING looked like a seizure to me.  There were a few dark weeks when Luke was going through a particularly jerky period where I had my camera out every two seconds trying to capture his 'seizure' on video.  I've said this in a previous post - we were told that we'd just know.  And there is so much truth to that.

After his first seizure we purchased a video monitor for our peace of mind.  We love it.  It's been super helpful.  Sunday morning I glanced at it after hearing some noises and saw that he was sitting up.  I went in to get him up and noticed that it smelled in his room.  Upon turning on the lights I discovered that he had thrown up.  So this is where I have realized my life has totally changed.  My mind instantly went to, 'Did he have a seizure??'  After his first two seizures he threw up.  So of course that's where I go.  I tell myself to stop being psycho, crazy mom (I tell myself that a lot these days) and that he probably has a stomach ache.  Toddlers get the stomach flu and right now, in our house, WE GET EVERYTHING. 

Dan and I got him cleaned up and watched him carefully throughout the morning.  And the gut instinct kicked in - he was super sleepy, pretty irritable and slightly off balance.  He fell asleep in the car about an hour and a half before his nap and then napped again that afternoon.  Not good.  We decide to play it cool - he's on new meds, we have to give it time, could be a reaction to the medicine....

We know one of us has to sleep in his room.  We also wrote down what happened just in case it started to happen more frequently.  If it happened again we were going to call the neurologist to get his take on the situation.  We are trying to keep track of any unusual behaviors/sleep patterns just in case the medicine isn't agreeing with him.

And then comes Sunday night.  This time we are both awake and I'm not in his room yet.  Video monitor is sitting beside Dan and we see it all occur - well not the seizure because unless you're looking at his sweet little eyes, you can't really tell.  Luke got sick and we flew up to his room.  He wasn't even able to lift his face out of it - saddest and scariest thing I've ever seen.  After we cleaned him up I was holding him and he was really lethargic.  He would look at us after we called his name several times.  He could stand on his own but only for a few seconds before he'd start to fall.  Gut instinct kicks in.  Again.  And for us it confirms both seizures at once.

We called the neuro on call at Children's.  Can I just say how very much I love Children's?  The neuro on call (I can't remember his name - I was a little stressed) was awesome.  He listened to what happened and said this fancy word that I am too tired to look up right now about post seizure behavior - we're going to refer to them as aftershocks.  Eventually we got him back down and I spent the night in his room and Dan spent the night listening to and watching the monitor.  Luke slept well...

Today Dan stayed home with Luke.  It was really hard to leave him but I've missed a ridiculous amount of work this year already and I knew he was being well taken care of.  Luke was pretty sleepy and definitely not himself this morning.  Two naps (on a normal day he only naps once) into the day and he was pretty much his old self.  Whew.

We spoke to our neurologist's office and they are upping his meds.  They said it might take awhile to find the right dosage.  I asked the nurse what we could do to figure out if he was having a seizure at night since he doesn't tend to move around during a seizure or make noises. 

"You're just going to have to watch him carefully."  Hmmm....goodbye sleep. 

And that is what we're doing right now.  We are on high alert and I'm trying to make sure I look at him closely every time he moves. We gave him the new dosage tonight and of course we are hoping that it is the magic fix.  We will see.

We are trying to figure out the right balance of trying to take care of one kid while not forgetting to take care of the other.  Last night while we were trying to clean Luke up, Ben was yelling for us from his room.  We finally let Ben get up and be with us because we wanted to make sure Luke was fully alert before we would let him go back to sleep.  Ben was full of hugs and kisses for all three of us.  He knew things weren't right.  The other night Luke was crying really hard for some reason before bedtime.  I was with Luke and Dan was with Ben.  Ben told Dan, "Daddy my eyes are wet because Lukie is crying."  He is so sweet (and wild, but that has nothing to do with this) and I hope we figure out a way as all of this passes to make sure he's getting his due attention, too. 

And we continue to take it one day at a time.  I hope and pray that the seizures don't hurt his development.  I hate, hate, hate giving him this medicine but know that at this point it is necessary.  It would be a lot easier if he could tell us how it was making him feel.  He does seem to be tolerating it well and doesn't seem to be having any ill effects minus the whole thing where it's not stopping his seizures yet.  Grrr.

Thanks in advance for all your prayers and positive thoughts for Luke and our family.  It means a lot to us.  Fingers crossed for an uneventful night and for the meds to kick in strong!! 

Lots of love.

Thursday, September 29, 2011

#2

Just over three months after his first one - Luke's had his second seizure.  It sounds like it was pretty much identical to the first one but perhaps a little bit longer than the first one.  It happened at our daycare, Lakeside, this morning.  The kind of seizure he has had so far doesn't look like anything I've ever seen before.  I searched You Tube before and after Luke was born to make sure I was familiar with different kinds of seizures and I didn't see any like his. 

Anyway they called us before 911 because they weren't 100% sure what was going on.  When I spoke to Karrie (one of the teachers at his daycare),  it sounded exactly like what happened before.  Karrie did say that when she remembered to start timing it, it did go 5 minutes without him really 'coming to'.  Dan and I met the ambulance at Missouri Baptist.  Karrie rode with Luke.

So here is where we are at.  He's totally fine.  He is now taking levetiracetam (generic form of Keppra) to control (*STOP*) his seizures.  The side effects that our neuro mentioned is sleepiness and the big one is a behavior change/agitation among other things.  But it seems to have the least amount of side effects from the ones we have looked at.  Hopefully this will do the trick.  However it made him shudder and he spit it out.  Uh-oh.  This is a mean mom comment - but it was pretty funny!  Today.  Tomorrow when I'm desperately trying to make him swallow it, it's probably not going to be so funny to see the 'shudder/spit'. 

He also now has an epilepsy diagnosis.  Dr. Smyser said that once a person has 2 unprovoked seizures they are considered to have epilepsy.  Really, that changes nothing.   With the Polymicrogyria, we knew that was pretty much a given.  We also have the emergency drug, diastat, that we can give him if he is having a seizure lasting longer than 5 minutes. 

He also has his second ear infection within the past month...WITH TUBES.  Grrrr....but that's a whole other issue. 

Shortly after getting to the ER, he fell asleep for awhile.  When he came to, he was signing that he wanted a drink and saying 'outside' over and over.  It made us feel better to see him perk up so quickly.  He's been fine the rest of the day.  His balance seems slightly off, like last time, but  by this evevning it seemed much better.  He is sleeping right now and I'm so glad we decided on getting the video monitor.  That makes it much easier to put him to bed on a day like today. 

I'm really hoping we have NO new news for awhile.  We meet with the neurosurgeon in October but I'm really thinking it's just a precaution so hopefully there won't be a lot to report. 

We're thankful that our little guy is home and sleeping in his bed!  Take care!



Tuesday, September 20, 2011

SPEECH!!!

We had our First Steps meeting tonight and it went GREAT!  Luke will start receiving weekly speech services!  Sooo excited.  He will be seen every other week here at home and every other week at daycare.  His other services - PT weekly/OT every other week - will stay the same. Our team was great and they made it very easy...so I was nervous about nothing!!  Whew!

He did decide - as I was trying to make my case for speech services and show them how very delayed he was - to say 'outside' for the first time.  Ever!!   He was standing at the back door trying to open it because Ben was outside with the babysitter and he desperately wanted to be out there, too, instead of inside with all of these boring women who were staring at him.  He said it pretty clearly. While I was excited to hear him say it, it wasn't really the best timing when his mom was trying to get him speech/language services!!! 

I'm really glad we're going to be getting help in this area.  I will be beyond ecstatic when he finally looks at me and says 'mama'!!!  It's got to be coming soon!!!!!!!!!!!!!!!

MUCH LOVE!!!!!!!!!!!!!!!!!

Thursday, September 15, 2011

Big Day!

Today we had 3 biggies...Parents as Teacher's 18 month evaluation, neurologist appointment and 18 month pediatrician.

18 month evaluation

Go Rams!!!  How cute am I????

There are five areas Luke was evaluated in - communication, gross motor, fine motor, problem solving and personal-social.  To start off with - Luke rocks the personal social!!  He wasn't terribly behind in the gross and fine motor areas - which was good.  He's not quite in the normal range but he's not far behind.  He was behind in problem solving - which isn't surprising to me.  He doesn't really get upset about much.  If he can't reach something that he wants, he just moves on.  So he doesn't apply problem solving skills.  He doesn't show interest in putting marks on paper or copying us when we do but that could be because he has a really hard time holding a crayon or pencil.  That was included in the problem solving area.  And.....communication.  Well, it wasn't a shock for us but he scored 0.  Our PAT educator, Lori, went home and assessed him based upon the information I had given her and at this point, developmentally, he is communicating like a 10 month old.  It was a little bit of a punch in the gut even though we knew he was delayed. 

Neuro appt.
I had a HUGE list of questions for Dr. Smyser which he patiently sat with us and answered.  I LOVE  him because he sat in the room for probably 45+ minutes, didn't look at his watch once and was totally focused on us and Luke. So here were the major points of conversation...
Of course it's great news that Luke has continued to be seizure free.  However, we do get a little worried about times we don't see him - the night.  Dr. Smyser assured us if we ever have a time where we are concerned about night time activity we could do an overnight EEG.  We don't have any real reason for concern right now but it's nice to know it's easy enough to get it checked out if concerns do arise.
I've had some concerns about his peripheral vision lately.  It's probably nothing but we're going to get him checked just in case.  He will run into something on the ground and he never looks down to see what it is.  I've also set food in front of him before without saying anything and he'll continue to fuss until I physically show him.  It didn't raise any huge red flags for Dr. Smyser but since it seems to be somewhat unusual, we're going to have it checked.
Luke's head size was my biggest concern today.  But I really don't have much to report.  It has grown.  Of course.  But honestly we got caught up in some other things so we forgot to check back with him after he went to look at Luke's measurements from last time.  While we were talking about our concerns, Dr. Smyser assured us that he didn't see any reason for alarm still at this time.  However, he wants us to meet with a neurosurgeon so that we have someone we are comfortable with if the time comes that it has to be addressed surgically.  He said he would rather us meet with someone while we were calm rather than at the time when we HAD to meet with one.  The concern is still hydrocephalus (fluid build up in the skull) which would result in surgically implanting a shunt.  Hopefully we will never get there but it will be nice to meet a neurosurgeon before it's ever a real issue.  I have an e-mail in to Dr. Smyser's office to find out if his growth is starting to even out or if it's still skyrocketing.
Every time we go to the neurologist, we also meet with his physical therapist.  She was watching Luke walk bare foot in the office in his diaper.  She noticed immediately that he is snapping his right knee when he walks.  Her conclusion is that the shoe inserts that he wears (SMO's) are not appropriate and we probably need taller ones (AFO's) to keep that knee bent forward.  Also his  inserts are getting too small already anyway.  Soooooo they wanted us to stay and meet with the lady from orthotics today but it was getting too late and Luke was losing steam fast.  The PT said that she would recommend starting with a strap across the back of his current style of orthotics but she doesn't have high hopes that it will help.  If it doesn't help then we go on to the taller ones.  We have that appointment next week.
Dr. Smyser agrees that communication is a problem.  He is recommending weekly speech/language therapy.  He is also recommending that we increase OT to weekly sessions as well.  Now....we wait for our First Steps meeting next week. 

Pediatrician
Well, they can't measure Luke's head anymore because their head circumference tape isn't big enough.  And he got 3 shots.  That about sums up the pediatrician appointment. I used to always be eager to get Ben's percentiles for his height and weight and head circumference..I realized, just now, that I didn't even ask for that today.  Things change...


So that was our day.  Overall it was fine. I'm nervous about our First Steps meeting.  I understand they have guidelines to follow to grant services.  I hope that his delay is significant enough to get speech/language services.  However if it's not, we can always go the private route.  It will just be more difficult (time wise).  We might end up doing both anyway since the gap between what he can do and his actual age is so wide at this point. 

Also, the DAY after my last post...Luke ran his first fever!!  Knocking on wood DID NOT HELP!!  But we survived it.  It was certainly stressful but he was OK.  Through the course of the next week, he ran two more fevers which finally erupted into strep!  And then Ben got it less than 24 hours later!!!  Of  course.  And through it all - no seizures.  Whew. 

We also received word from someone at Seattle Children's Hospital about a research study they are doing specific to macrocephaly and polymicrogyria.  I mentioned this awhile ago and it is finally taking off.  This is the hospital that Dr. Dobyn's - THE PMG guy (among other brain malformations/abnormalities) - is at.  They have our paperwork, blood, and all of Luke's MRI scans.  We may never hear anything from them but we may also get some long sought after answers!  It's pretty exciting.  The lady that I've been talking to in Seattle said that macro and PMG is a 'hot topic' right now! 

We're pretty tired.  Luke was out within minutes tonight after such a long day  We knew that his language was delayed but for some reason it's a little more upsetting than I expected it to be.  I want to stay on top of things but I think that deep down, I'm always still hoping that maybe this PMG thing really won't affect us that much or be that big of a deal.  The seizure was a big whammy and now this 10 month developmental age for language. :(  Things are going so well overall and we are staying focused on that.  Hopefully with the right resources we can start tackling the language and speech delay and close that gap quickly.

OK, that's it for now. This is my favorite current picture of the boys.  Ben got a new big boy bed and they both LOVE it.    In my never ending quest to get the perfect picture of these two little monkeys, I asked Ben to put his arm around Luke....Poor buddy.  I won't do that to him again! 
Last thought....we are thankful everyday that Luke is doing as well as he is.  Watching him walk across the backyard and watching he and Ben head butt each other and listening to them laugh in the bathtub...we know these are all HUGE blessings since we didn't think he'd be able to do any of these things.  Thanks for reading. 
Love from us.




Monday, August 29, 2011

Lots of good stuff!!!

So it's been awhile since I posted - consider that great!!  I've had several people ask how Luke is doing so I thought I'd update.After the seizure, he had a couple weeks that were kind of scary.  On many levels...scary because we were just waiting, first of all.  And scary because Luke kind of backtracked developmentally.  He was walking short distances independently before the seizure and for about two weeks after, he lost it.  I thought maybe I was just over analyzing but our PT agreed that his balance was definitely affected.  But now!  Oh, boy!  The kid's a wonderful, glorious NUT!  He is EVERYWHERE!!!  AND it all really started at the end of 16 months - well within the normal developmental range!!  He's doing this thing where he walks with his hands in his mouth.  We're trying to break him of that habit but having no luck so far.  He is also getting ALL of his molars at once so that doesn't help.  But we are still working on it. 

As far as we can tell he has had no more seizures.  I know that his diagnosis hasn't changed and he can have another one any day but everyday that passes without one is sweet.  It's been tough leaving him with anyone else. We purchased a video monitor that helps ease my mind at night.  I'm a fairly light sleeper so I hear him moving pretty often and can just look over and see what he's doing.  I went in and talked with his teacher and the director of his daycare before he went back.  They were really great and I'm comfortable with their knowledge of seizures and their plan if one happens. I also was in contact with someone from the Epilepsy Foundation at my neurologist's suggestion.  They made a few preventative recommendations that we've been trying to do such as keeping his diet low in sugars, not getting overheated and making sure he's getting enough sleep.  It will be even scarier now when he gets sick because fevers can trigger a seizure although I don't think he's ever run a fever yet.  (KNOCK ON WOOD).

He is still happy, happy, happy.  Even more so now that he can really get around.  We had him evaluated for speech/language therapy this summer.  The therapist said she had several concerns but he wasn't really at the bottom of the barrel so he probably wouldn't qualify for services at this point. She was considering giving him a therapist once a month to continue working on decreasing the drooling and loss of thin liquids(since the evaluation his swallowing has really improved, we're not concerned about thin liquids anymore.  The drooling is an entirely different story...)
However, since then I have seen him around other kids approximately his age and have gotten feedback from others and I'm afraid we are starting to see a rather significant language delay.  Now, if I wasn't looking for this would I think anything of his language delay?  Probably not.  He's a boy and he's working really hard on his gross motor stuff.  Both factors tend to slow down language development.  Ben was a little slower in the language department, too.  BUT since we know Luke is predisposed to language problems - I'm ready to do battle to get him services to head off any problems in the future.  I used to think he had some words but realized he doesn't really say them with meaning.  He does use 2 signs and can point to a few body parts.  So that is all good.  He's also making lots of noises and repeating a lot of sounds - which is also good.  I think I was seeing things I wanted to see for awhile because I so desperately want everything to be OK.  It is OK, though, even if he is delayed with it.  As long as we know and get it taken care of!

Our Parents as Teacher's educator is doing an 18 month screening on him in September.  We also have our 18 month pediatrician appointment and neurologist appointment.  These were all carefully planned BEFORE our First Steps reevaluation.  The speech therapist who evaluated him will be present as well as our therapists and coordinator.  I'm busy reading up on language development (thanks, Sue!!) and what's within the normal range.  I truly believe the reason Luke is doing sooooo well is because of all of the early intervention.  If speech/language is going to be a problem - I want to start taking care of it.  Now. 
And...Luke and Ben!  Delightful!  Totally normal, crazy brothers.  One of their favorite activities is to take turns screaming - yes, screaming.  It's pretty funny.  Another one of their favorite activities is head butting each other.  See?  Totally normal:) 
I'll update you in September after all of our meetings!! 
Much love!

Wednesday, June 22, 2011

Answers...sort of, not really.

Just a quick update - first of all, thanks. Thanks for all the kind words that came our way today. 
We had a great day - Luke woke up in a great mood and had a perfectly uneventful day.  It was easier than I thought it would be just to get back into our routine.
I did hear from our neurologist about the EEG from yesterday.  The EEG came back normal which means at the time the EEG was done there was no seizure activity detected in his brain.  At that point, I thought it meant that maybe he didn't have a seizure but he said that from what we described he's fairly certain he did.  All the EEG results did was confirm our decision not to go ahead and start anti-seizure medication for Luke right now.  Dr. Smyser said that seeing the results made him comfortable with NOT starting Luke on anti-seizure meds.  Where it leaves us is exactly where we were when we woke up yesterday morning - due to Luke's brain malformation he is more prone to seizures.  Where, when, how often those will occur - we still have NO answers.  He could have another one in 5 minutes.  He also may not ever have another one again.  So we're in exactly the same spot we were when we brought him home from the hospital - except we've dealt with and made it through one seizure. 
We're going to go ahead and read up on different seizure medications so that we're prepared if it happens again.  Dr. Smyser said that if he has a second seizure then we'd probably want to go ahead and start him on anti-seizure medication.  At least this way we'll have time when we're a little calmer to make some decisions that will best suit Luke.
Dr. Smyser knows a doctor in Seattle who works with this doctor who is 'THE' doctor to go to if your child has PMG.  He has shown this doctor Luke's MRI's and also talked to him last night about his seizure to see if there is anything else we should be doing, any tests we should be having Luke go through.  They are going to include Luke  in a research study.  All we have to do is have Luke's blood drawn and sent to Seattle.  We have to wait for them to contact us to get the ball rolling.  It sounds like with ongoing research and comparing Luke to other children who have similar diagnosis they might be able to tell us more about what caused Luke's PMG and maybe more of what we would expect. 
Again - thanks for the kind words today.  It means a lot to us. 

Tuesday, June 21, 2011

The Waiting Game...continued.

So far Luke has been exceeding all of our expectations.  He has been 'beating' this brain malformation and doing pretty much everything a typically developing child should do.  When we first brought him home, because of the various seizure warnings we were given, I was often worried about odd movements he would make or when he was sleeping too much or if he was acting 'funny'.  You know, I was worrying about all the normal things babies do anyway!!  I was sure, just positive, that he was going to have a seizure and I would miss it. 
Time went on and I eased up.  I  stopped worrying about it constantly.  The thought of him having a seizure never left my mind but I eased up and relaxed. 
But you don't.  You don't really relax and you don't 'miss' it.  And now, sadly, we know. 
(Let me preface what I'm about to write by telling you that Luke is totally back to his normal, happy self at this point in time!!)
This morning, Dan found Luke laying face down in the family room.  He was fairly limp and not really responding to him.  Luke was NOT unconscious.  Dan brought him upstairs to me and you could tell he was awake but he wasn't able to keep his head up and he wasn't looking at us.  We knew something was wrong.  He kind of came to and became responsive to us.  We were both really upset.  I decided to call our neurologist office.  We left a message for the nurse to call us back.  In the meantime, Luke was sitting up in Ben's room and kind of trying to play.  He was falling over a little and having a hard time crawling.  Then he threw up...for the first time.  While I was holding him so Dan could clean up, his eyes were focused to the right and he was pretty limp again.  While I was trying to soothe him and get his attention.  He threw up again. And again. 
All of this probably happened in a matter of 5-10 minutes.  The nurse from our neuro's office called back.  I described what had happened and she consulted with Dr. Smyser.  They decided that it did sound like a seizure and told us to come to Children's ER. Luckily for me Dan was off this week and also my mother in law was available to come get Ben.  As we were getting ready to leave, Luke seemed very tired but way more focused.  He fell asleep for a little while on the way to the hospital.
We were at Children's most of the day.  We were answering the same set of questions for numerous people...What happened?  How long was it?  Which way were his eyes looking?  Which way was his head facing?  How long before he responded to you?  Has he been ill? 
We saw our neurologist and the neurologist on call.  They decided to do some blood work to rule out the possibility that maybe it was all a fluke and he had a stomach bug or something.  All his bloodwork came back normal.
They also decided to do an EEG.  They said that it sounded like the seizures were firing from the left side of his brain because he was rolling his eyes to the right and he seemed to be resting his head towards the right when Dan found him.  They had to glue 26 leads on his poor head.  He did not care for that situation!  But then, luckily, he fell asleep for most of it.  We'll get the results of the EEG in 2 days. 
Our neuro said it sounded like he had a 'cluster' of seizures because they said it sounded like he had 2 seperate seizures in the time the whole 'episode' happened. 
And now we wait.  Again.  Still.  We wait.  Obviously no one can say when or if he'll have another seizure.  Dr. Smyser said that we could opt to go ahead and start medication but we want to give it a little time and see what happens.  He's going to send us some literature about different anti-seizure medications so we can decide what looks *best* (ha) if a next step has to be taken.  It kind of sounds like with his guidance, we can choose the one with the most optimal side effects....If that even makes sense. 
He didn't have any more episodes all day. By the time we got home and fed him something more than animal crackers and apple juice he was pretty much totally back to his own self.  He was happy and sassy and ready to play. 
Now Luke's sleeping and I wonder how we sleep easily tonight (or the next night, or the next....).  We're not the first parents whose child has had a seizure (duh).  But it is our first seizure with Luke.  And I know we'll sleep - we're both wiped out today.  But how do we sleep easily?  When Dan was finished putting him down for the night, my heart was just racing.  Dan's already upstairs checking on him right now.  Not that it will really tell us anything just by looking at him - but we'll feel better. 
We are trying to remember that he's still doing sooo well.  We are amazed and proud of him everyday.  We'll see where this new road takes us....Thanks in advance for your continued prayers and positive thoughts. 

Wednesday, June 8, 2011

Making progress!!

video
Luke is quickly approaching 15 months!  He has his orthotics and is adjusting easily to them.  The inserts are much smaller than I expected and he is very patient while we get them on in the mornings. He has been taking a few steps here and there.  He's not walking on his own...yet! This video is during his PT session. Walking was one thing we were not sure if Luke would ever be able to do.  Now it's looking like it's going to be one more thing that he CAN do!  Yeah!
Luke is continuing to eat well.  He's doing MUCH better with his drinks, too.  He doesn't lose a lot of liquids when he is drinking anymore.  Drooling continues to be an issue that we are working on with him. 
We'll have his 15 month pediatrician appointment this month.  I'm a little worried about head size.  I'm hoping that maybe it's starting to slow down! 
He seems to be understanding more and more when you talk to him.  He understands (and ignores - typical!!) when we tell him no.  Luke loves to get into the dog's room and play in the water.  Luckily we have Police Officer Ben to let us know when he's up to no good!! 



Friday, April 22, 2011

Team Luke

"There is no such thing as a self-made man.  You will reach your goals only with the help of others."
-George Shinn

Last week we had Luke's 1 year First Steps evaluation.  Basically it's like an IEP in a regular school setting.  Our coordinator, PT and OT were there.  They are all amazing.  Just amazing.  I am struck again with how very fortunate we were (are) to get Luke's diagnosis so early. He has pretty much met all of the goals that we made at his 6 month appointment.  We are continuing to work on fine motor skills and walking.  He has taken a step or two towards someone but isn't walking independently yet. 
Our PT has been watching his feet carefully because he was walking flat footed with his left foot. She now notices it in both feet.  We met with a man this morning that casted him for these special inserts to put in his shoes to help with that.  He thinks at this point Luke needs moderate support.  When he examined Luke he said that he does have good arches so that is really good.  He was really sweet with Luke and I'm excited to get the shoe inserts.  I believe they will look something like this http://www.dafo.com/products/dafo-4/.  They are less obtrusive than I thought they would be so that's good.
We are sticking with PT weekly and OT every other week.  He's made good progress with swallowing liquids so we're not pursuing the speech avenue.  We were going to have to go to the hospital and get a swallow study done to rule out swallowing issues.  No one that works with him feels like he has any kind of swallowing issues, though, so we decided not to go ahead with one more test....Our OT is going to continue to help with the liquids.  He's doing really well with thicker textures through the straw - smoothies, applesuace, pudding.  We haven't tried a milkshake yet but I'm sure he'll dig it!!
Luke also had his 5th ear infection about 2 weeks ago.  Grrr.  Our pediatrician referred us to an ENT so we can talk about getting tubes.  My fear with his frequent ear infections is that it could be causing him to hear things differently or less.  Since speech could be a problem I DO NOT want him to continue getting ear infections!  That appointment is coming in a couple of weeks. 
Thanks for being a part of Team Luke!!  Happy Easter!
xoxo Mel

Wednesday, March 23, 2011

MRI Report

We had Luke's MRI yesterday at Children's.  We were really fortunate that they were able to get us in so quickly so we didn't have to wait and wonder.  We heard from Dr. Smyser this morning and it's all pretty good news. He does have mild ventriculomegaly (enlarged ventricles) which is why we went for the MRI when I was pregnant.  He said it is NOT hydrocephalus (fluid on the brain) which would require the surgery and shunt. He had a neurosurgeon look at it yesterday, too. He agreed with Dr. Smyser.

So at this point it's not a 'game changer' (Dr. Smyser's words). We can still expect the same development from Luke that we've been getting. We're still on the lookout for seizures, developmental delays, other problems - the same as what we're already watching for with the PMG. He said we'd continue to watch the growth curve and keep a little closer look at his head.

Apparently kids grow really quickly between birth and 2 and then kind of level out. If his head doesn't level out like it's supposed then we may have to do another MRI to see what may be going on but he won't really make predictions about that at this point in time.

I'm a little disappointed that his ventricles have enlarged enough to be the ventriculomegaly, but oh well. He didn't really say if it increases his chances of having seizures, delays, etc. So pretty much nothing has really changed from the PMG diagnosis.

He also said the PMG has not changed at all - which was expected and that his brain stem looks normal. That's good.  We're happy that it is over and that the news wasn't bad. 
 


Birthday boy!!


Friday, March 18, 2011

The Good, the Bad and the Unknown....

The Good...
Luke's neuro appointment went great.  Dr. Smyser is pretty conservative when making predictions about Luke's future & abilities - which is smart.  But he said he was excited about how well Luke is doing and for a child with PMG he is a 'star student'.  Yay!  He confirmed that Luke does indeed have low tone overall but it's not even significant enough to have an official diagnosis (there is a name for that particular condition).  He also said that we should be able to make better predictions about Luke's future abilities when he turns two.  He said it's great that every time he sees Luke he is making constant progress! 

We met with his office PT also who talked to us about Luke's liquid swallowing issue.  She wrote us a script for a speech therapist to work specifically on the coordination of swallowing liquids from a cup or straw.  I consider this good because even though we might be acting overly cautious here I can't help but to think that all of the early intervention has worked miracles for Luke.  So I'd rather get on this sooner than later.  Hopefully we can get the therapist through First Steps but if not we'll just do that one on our own.  I have a call in to our First Steps coordinator right now.  One thing that the therapist we talked to mentioned (as well as our OT and our Parents as Teachers educator) is to have him swallow thicker liquids - milkshakes, smoothies...Hmmm....NOT such bad exercises for him:)  He had his first smoothie this morning and LOVED it.  He did ok with swallowing - lost some but not a ton of it.

The Bad...
The geneticist noticed that his head size is not only continuing to get larger but substantially so.  His body is following this growth curve but his head is off the charts.  It's always been off the charts but it's not following a curve.  When she showed us the computer growth charts you could see his body going in this curve and his head chart is pretty much going straight up.  Her office is connected to Dr. Smyser's office so she went over to talk to him.  At the point she went to confer with him he was actually looking at the computer charts, too.  They decided that Luke needs to have another MRI to rule out any other problems.   The very first MRI while I was pregnant was ordered because the ultrasound was showing not only extremely large head size but slightly enlarged ventricles.  When Luke had his own MRI several hours after birth, his ventricles were measuring normally.

If his ventricles are measuring large then he will likely have to have a shunt surgically placed in his brain to drain the ventricles.  That is worst case scenario....with that being said - they both agree that he is not presenting any of the symptoms of a child who has enlarged ventricles (there is a scientific word for that, too, but I can't say it so we'll just stick with enlarged ventricles) so hopefully this is just a precaution.  However his little (big) head continues to be a medical mystery.  The geneticist said she has never seen a child with a head that is growing like Luke's.  Grrr.

I followed up with his neurologist this morning and he restated several times that he is impressed with Luke's progress and is NOT presenting any of the issues that a child would have if he had enlarged ventricles.  So that is promising.  He is working on getting is scheduled ASAP.  Please keep your fingers crossed for as soon as possible so we can get this out of the way.  He does have to be put under for the procedure which I hate, too. 

He also has his 4th ear infection (not as big of a deal as the MRI but frustrating to me all the same!!!). 

The Unknown...
I am really, really hopeful that the MRI is just a precautionary measure.  I hope that it just brings us peace that his ventricles are still fine and the rest of his brain is developing normally (well, normally for him anyway). 

So we're waiting.  Again.  I must say that yesterday was an emotional roller coaster for me.  I was so overly excited before and during his neuro appointment.  I just knew things were going to go great because how could they not???  Luke has been making progress and pretty much been a 'typically' developing baby.  And then, as my sister in law put it, my balloon burst.  I was deflated. 

I'm trying to hold on to the positives - he's making steady progress, he's super busy and interested in the world around him, he's not having seizures.  We are so, sooo lucky with how well he's doing.  I'm hoping and praying that the MRI comes back normal.  I'm trying to remember that just because we had a minor set back, it doesn't mean that it didn't go great.  In my rational mind I feel good about his MRI. It will give us more information and if it's not great news at least we are catching it early before he starts to have problems because of it.  And it's fixable...

But in the other part of my mind - I'm worried.  We never expected the news we got after our first MRI.  Everything has been going so well for Luke.  I don't want anything at all to happen to set him back. 

I'm sure there's something I'm forgetting but that's it for now. Our fingers are crossed that the MRI will be scheduled for next week.  Hopefully we'll find out later today.  Keep positive thoughts coming our way!  Thanks!!!