Mighty, mighty...good!

We have had a busy, busy week!  A lot of great things have happened that I want to share. 

Luke is continuing to grow by leaps and bounds!  I cannot believe he's going to be TWO in less than 2 months. Sunday, he had a dirty diaper and without us even asking him, he went and got himself a diaper and took it to Dan!  When asked to go get the wipes he toddled over, grabbed them, and brought them back.  Then later in the day, he was wet and went and got himself a diaper!  AMAZING!  He seems to understand most of what we say and is following a lot of simple directions - well at least as many as any almost two year old!  He's adding lots of words to his vocabulary although a lot of them are still hard to understand.  Hopefully with time his language will become more clear.  He's very steady on his feet and is starting to walk backwards without assistance.  We are just thrilled with him on a daily basis!  AND best yet...still 'S' free!!  (Not going to say the word!)

Dan and I had the opportunity to attend a fundraising event for The Mighty Oakes Foundation (http://www.mightyoakes.org/) Monday night.  One of the blogs that I follow is for this little guy, Oakes (http://babyortyl.blogspot.com/).  Oakes was born with congenital heart defect. In his short life has had two heart surgeries and one double lung transplant and various other medical issues.  He's about ten months old right now and according to his mom, Becky, he has only spent about 20 days at home since he was born.  Becky and her husband started the Mighty Oakes Heart Foundation to help other families whose children are dealing with congenital heart defects.  There is soooo much to this story but very briefly, as Becky was talking about some of the reasons they started the foundation, she said as she walks out of the CICU, where Oakes has been for the last 6 months, she sees other babies, children, families and thinks..."It could be worse."  She put this far more eloquently than I am right now and this is completely out of context from her speech.  What really touched me is that this family, who has had a lot of stuff thrown at them since before little Oakes was born, has not drowned in sorrow or pity or heartbreak.  They are so positive and working hard to GIVE to others.  It's inspiring and touching and just flat out beautiful.  I have been on a natural high all week from the joy and positive energy generated from this event.  Oakes is ridiculously cute - you should check out the blog JUST to see how darling Mighty Oakes is!  It takes a mighty kind of strength to look past your own troubles and focus on the great things in life and to put so much effort into helping others.  This family is impressive. And this mighty little boy will keep you on the edge of your seat as you follow his story!

A strong positive mental attitude will create more miracles than any wonder drug.

-Patricia Neal

On to more exciting news!  In the PMG world there is this one guy...this one doctor who is THE PMG doctor.  His name is Dr. Dobyns.  He is based at Seattle Children's Hospital  I think I might have mentioned him in a previous post.  The research study that Luke is in is through his office.  He is a geneticist and a neurologist.  He seems to be the one to know more about PMG than anybody else.  Wellllll we're going to Seattle.  We have an appointment with him on June 11.  I'm not sure what I am expecting to hear from Dr. Dobyns.  We've never felt like we have had unanswered questions by our doctors (besides the whole 'wait and see' thing...but that seems to be the norm with PMG).  We have been lucky from the start to have a knowledgeable doctor who knows a lot about PMG.  At the same time, with Luke doing so well and making so much progress, I'm interested to hear what Dr. Dobyns has to say about Luke.  I'm interested to hear if he thinks there's another type of therapy we should be pursuing or if he has any more specific information about the damage to Luke's brain.  He's seen A LOT of PMG kids so I'm also hoping that he can give us some more specific insight as to what to expect from Luke.  We have learned, though, not to take the doctor's expectations to heart.  So while I want to hear what Dr. Dobyn's has to say - we KNOW our little guy and we KNOW he is willing and able to do much more than the doctors expect.  We're hoping to make a fun family vacation out of it!  Any ideas for fun things in Seattle in June????  Anyone know the least expensive days to book airline tickets?  Isnt' there something about traveling over a weekend?  Any advice would be appreciated!  His appointment is on a Monday morning and I'm hoping that is towards the beginnning of our stay so it is not 'looming' over us for our fun family time!

AND we started ABM therapy officially this week!  Luke had his first two sessions today and did really, really well.  His Grandma Beth is taking him tomorrow so I don't have to take off of work which I appreciate.  Obviously I can't say that there's this big, giant change...yet.  But I really believe that this will do amazing things for Luke. 

We also met Luke's new OT this week.  Her name is Stephanie. She's been an OT for 2.5 years and her experience is mostly with adults.  I have a feeling Luke is going to teach her a lot!!  She was very sweet with him.  We will continue our same schedule of twice a month with her.

Oh and last funny thing!  We are able to sign up for Equine Therapy next week.  Apparently it's such a saught after thing I literally have to get up at MIDNIGHT next Sunday to send my e-mail to try to get our times!!  I have to set an alarm to sign my toddler up for classes....never thought I'd be doing that!  Ha!

So that Luke's world this week!  Have a great weekend!

Working with Amy, our PT



Doing the 'wheelbarrow' with Amy!  He usually HATES this but he did really well that night!  It's good that she likes to sing to keep him entertained!!



And this is Christine, Luke's speech therapist.  We love her.  She loves Luke and every single accomplishment he has.  She's amazing.



Crazy boy on his trampoline!  He's jumping in this one but I didn't get it in the shot! 



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!

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!!!

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!!



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!!

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...

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.