Introducing......Dr. Silva

Hello there!  The last time I posted, we had an unusually long doctor day.  During that day, Luke had an Echo and EKG done due to recommendations from Dr. Dobyn's because of the MPPH diagnosis.  I didn't hear anything from our genetics office (who is taking the lead on taking care of all of the stuff associated with MPPH) so I assumed all was fine.  Well, you know what happens when you assume...

It is fine.  BUT I received a call from the genetics office last Friday at the END of the day to set up our visit with the cardiologist.  Hmmmm?  Of course, the lady who called me to set up the appointment was surprised I didn't know why she was calling.  AAANNNDDD she couldn't tell me WHY we needed to see a cardiologist and what was wrong with the tests we took.  All she could tell me was, "Anytime there is an irregular test result, we want you to follow up with the cardiologist."  Not. Helpful.  So after calling the cardiology department at Children's - who wouldn't answer my questions because our geneticist ordered the test - and waiting in vain for the office to call back, we waited out the weekend.

Monday we found out that Luke's left ventricle in his heart is slightly enlarged.  His heart is pumping blood normally and functioning normally.  It probably means nothing but due to the irregularity, we need to follow up with cardio.

So we did today...Everything went well.  Our newest member to Team Luke is Dr. Jennifer Silva.  She is not concerned about his ventricle.  She wants to do another echo in six months to see if it's changed at all.  If it hasn't changed, from what I understand, we can probably rest easy.  If it has...we deal with it then.  She also did another EKG which was normal.  The last part that we had to do was a Holter 24 hour monitor test.  He is hooked up right now to a special heart monitor which will give the doctor a more accurate read of his heart rate.  Sometimes with MPPH patients, heart rhythm can be a problem.  Luke does not care for it at all:(  But we'll get through...we had to stick it on with band aids in a few spots because he was sweating if off.  Ugh.  Keep your fingers crossed that he keeps it on tomorrow morning!  We FedEx the whole thing back tomorrow and will have the results in approximately 10 days.  If it's fine, we wait and repeat the whole process in 6 months and then, I believe, yearly after that.  If there's a problem....I guess we'll find out the next step in 10 days...

I'm glad that it was another uneventful visit.  I wish he didn't have to go to allllll of these doctors visits but I'm glad all the visits have been resulting in not too much to worry about.  I was under the impression that once we had his heart tests done we would be done with that part.  Having a cardiologist added to the team is not something I expected to happen but the most important thing is to make sure we avoid any problems if possible.  So...I'll keep you updated!

I took some pictures during PT and Speech this week!  Hope everyone's enjoying fall so far!!

Working on standing on one leg.

Working on running by chasing Miss Amy!

Working on jumping

Helping Luke get into standing from tall knees

Pumpkin carving during speech - ALL of our therapists include the other therapies during their time.  Luke has some issues with touching different textures.  So while Christine was working on language and speech development, she also worked with Luke on touching strange textures like the pumpkin guts!

It went well...

....for a minute. 

NO THANK YOU.

Ben was concentrating really hard on making hair for the pumpkin.

Ms. Christine and her boys!

The final product!  While putting the pumpkin together we worked on OT and speech activities like color words and words to describe the pipe cleaners and different parts of the pumpkin and face!  I LOVE our therapists!!!

It's ALLLLLLL Good!

So in the last three months since I posted (whoops!) lots of wonderful things have been going on.  First, we finally - as of today - have finished all of the initial testing that Dr. Dobyn's recommended when we went to Seattle. 

A few weeks ago, we had Luke's MRI.  It showed little to no change which is fantastic.  His ventricles have not increased and his brain is not growing at a pace to turn into Chiari at this point in time.  Yay! 

Today we had a marathon of appointments...kidney ultrasound, neurologist, geneticist, echo cardiogram, EKG....And it was all good.  Great even.  We found out that, as a precautionary measure, Luke will have to have kidney ultrasounds every three months until he is eight years old to check for tumors.  He doesn't have any at this point in time.  Our neurologist was really impressed with Luke's progress.  He recommends to keep doing what we are doing!  He'll have another MRI around three and then yearly after that as needed.  His brain growth has (finally!) slowed significantly.  We will go back to see neuro and geneticist in six months.  We didn't get the 'official' results from the echo/EKG, but the tech who did the procedure told me not to worry.  And it was really quick...so I'm just thinking those are good signs.  Right?? 

We always see a physical therapist from Children's Cerebral Palsy clinic when we see Dr. Smyser (neuro).  Ashley was checking out his walking and stance and we were discussing his orthotics (which he grew out of in record time this time!  He went up by TWO shoes sizes!!).  I asked if he would eventually outgrow the need for them.  I thought he could build up the strength not to need them.  But she doesn't think so.  She thinks he will always need them due to his low tone.  He tends to stand with both knees buckled when he is at rest which uses little to no muscle power.  As he gets older, we'll have to make sure he's doing exercises to strengthen his legs and make his stance better. 

Luke was such a trooper today.  I was really anxious about today because we started at 7 and didn't get done until almost 3.  He was awesome!  We took a walk to a local cupcake shop and bought a little sugar to keep him awake through the day and to share with some friends who also had a long day at the hospital.  We sang a lot of songs. 

Our summer was great!  We had the opportunity to go to Branson with some old friends and went to Silver Dollar City.  I thought that Luke would HATE it.  He absolutely LOVED it.  With the help of his orthotics, he was just tall enough to ride the kiddie rides.  Every time we pulled him off of a ride, he would throw out his bottom lip and just let us have it!  He still talks about the teacups and the elephants (Dumbo ride). 

Ben and Luke together are fantastic!  Luke has really started to stand up to Ben.  Pretty much every time Ben comes near Luke, Luke smacks him.  I have to be honest - I love it.  I love hearing them bicker and fight.  It sounds just great!! 

Luke's language continues to blow me away.  He's talking so much more!  He's able to sing entire nursery rhymes - BINGO, ABC's, Jack and Jill, Skidamarinkadink - to name a few.  He's asking for things and using longer sentences.  The other day he told me, "I want to go bye-bye in the car" and proceeded to go get my purse and head out the mudroom door!  He's replaced 'HI-YAH' with 'Oh Man!'  Although he still pulls hi-yah out sometimes.  My favorite thing is when Ben is bugging him and Luke starts yelling at him which leads to Ben running in to tell me, 'Mom, Luke's hi-yahing me again!'  It's officially become a verb in our house...

This fall we'll begin the process to do his official IEP for the school district.  He'll have to undergo testing by Special School District to determine what he qualifies for.  I will be absolutely heartbroken when we have to transition away from First Steps.  Our coordinator and therapists are so amazing and have worked wonders with Luke. 

When Luke was given the new diagnosis by Dr. Dobyn's, I asked his office to put me in contact with other families who are dealing with MPPH.  They told me they would send out my contact information and then the families could contact me.  Well, that hasn't happened.  However, shortly after Luke's diagnosis my very first PMG friend who I met through this blog, Susan, received an e-mail diagnosing her son with MPPH.  Then another family (Andrea and Kyle) who is in St. Louis that I met through a support group received an email with the same information!  Their daughter was diagnosed with MPPH.  Luke and I were lucky enough to spend some time with them at the hospital today while their daughter was going through some of the same testing as Luke.  Then just this week another woman I 'met' through a Facebook group got a phone call with the diagnosis for her son.  So my MPPH world is slowly growing...Anyone else out there???? 

I'm ready for a good nights sleep now that all of this testing is finally behind us...for now!!  Good night!!

Game changer....

Our little Superman!

Flight to Seattle with toddler.....exhausting but uneventful

Hotel with spiders and an adult video store across the street.....scary but kind of funny

Visiting with old friends and family.....joyful

Finding out your 2 year old has a completely different diagnosis.....priceless

****************************************************************************************************

Where to begin...?  OK so we are home from Seattle.  The visit that I anticipated being uneventful was anything but uneventful!!! 

We had our appointment with Dr. Dobyns at Seattle Children's Monday morning.  We arrived super early for our 8:00 appointment.  Seattle Children's is a well oiled machine!  My aunt and uncle came in from Vancouver, WA to be our taxi cab service and spend time with us.  The four of us plus Luke were ushered into the hospital, given ID badges and shown to the waiting area. 

We were called in right at 8.  As we were shown into the examining room, Luke, of course, started SCREAMING.  He really doesn't like doctor's offices!!  The sweet lady struggled through his weight and height and measuring his head.  Then we met Darci, one of Dr. Dobyn's research assistants.  She took some family history and then we waited for Dr. Dobyns. 

Luke & Dr. Dobyns!  Clearly Luke was excited to
meet him!! 

He came in and asked us to tell him basically our story.  So I start in....20 weeks, big head, blah, blah, blah, ultrasounds, MRI, blah, blah, bilateral frontoparietal polymicrogyria, bl...This is when he stops me.  Stops me COMPLETELY - even shuts me up for a minute.  He says, "Your son doesn't have bilateral frontoparietal polymicrogyria.  He has MPPH syndrome."  Me: (in my head because as I said he did silence me for a small amount of time) WHAT THE HELL?  I think he might have been talking still.  I wrote down MPPH and then managed to stop him.  And the whole meeting stops for a second as he realizes that we are COMPLETELY out of the loop right now....

Now, I'm going to do a little definition work here....
M - Megalencephaly - means really large brain.  The way this was explained to me awhile ago is that macrocephaly refers to head circumference and megalencephaly refers to brain size - specifically a really large brain.  To have megalencephaly your brain has to be over 2 standard deviations above normal.  Luke's brain is 6 standard deviations above normal....no big surprise there.

P - Polydactyly - Having an extra finger(s) or toe(s). 

P - Polymicrogyria.  Well, if you've been reading my blog at all you know what this is!

H - Hydrocephalus - fluid on the brain.  Luke never was officially diagnosed with hydrocephalus.  He does have mild ventriculomegaly which is some fluid build up. 

The megalencephaly, PMG, and ventriculomegaly put Luke in this syndrome.  He doesn't have the polydactyly part but he has the other markers which puts him here.

It's a relatively newly named syndrome.  At this point in time, Dr. Dobyns said they have approximately 100 people worldwide that have been identified with this syndrome but he believes that is an extremely low number.  There are between 20 and 30 people worldwide have been identified that are presenting like Luke. 

I'm going to explain the rest of the appointment and what it means for Luke the best I can.  Since we were NOT expecting this news - at all - I have a LOT of questions that I'm going to send on tomorrow to Dr. Dobyns.  Pretty much NONE of our questions applied after the whole game change....so if anyone who really knows anything about MPPH happens to be reading this please correct me if I'm wrong and please, please, please contact me!!  So the only thing I can guarantee is I'm going to tell you the information we received as we understand it.

Dr. Dobyns said that there is no way Luke could have BFPP because if he had BFPP he could not be functioning as he is.  He also said that while he does have damage in his frontal and parietal lobes, Luke's main areas of damage are actually his perisylvian areas of his brain.  He told us if Luke's brain was average sized to below average sized he would be severely affected.  Since his brain is so large he told us, "Take everything you've read about polymicrogyria and forget about it.  It doesn't apply to your son."  WHAT?  OK, you guys know I've spent a lot of time reading and trying to figure all this sh*t out!!  UGH.  (update July 2015 - because I've gotten a few questions about this recently - in following up with our doctors here and gaining more understanding over time, Luke does have BFPP but the way it typically manifests itself doesn't apply to Luke due to his gene mutation and the size of his brain.  I think that the PMG portion of his diagnosis doesn't affect him the same way because of his mosaic gene mutation.  So essentially he has PMG but the MPPH diagnosis trumps the PMG diagnosis.)

From what we understand everyone has these three genes that are responsible for growth.  What he thinks is that Luke's genes are in overdrive.  They don't know how to turn off.  He thinks they have a 75% chance of identifying the gene but it will probably be years before that happens (update July 2015 - not long after this post the mutated gene was identified as the PIK3R2 gene mutation - there are now at least 3 different gene mutations that I'm aware of that are associated with MPPH). 

With MPPH there are a few things we have to have checked out and start looking for.  Neither Dan or myself felt like Dr. Dobyn's was terribly concerned about any of this.  In the research his lab has been doing along with other doctors - again the sampling is approximately 100 people - they have found a few commonalities.  Because there are so few people currently identified they are looking at common problems and having the people in the study checked for these issues. 

1. Heart and kidney abnormalities - We have to have an ultrasound to check his heart and kidneys.  Quite honestly we can't really remember exactly what he was talking about.  We heard ultrasound, possible defects....So we'll get that checked out.

2. Cancer - because he has genes in overdrive this somehow increases his chances for cancer, specifically brain cancer.  At this point, they think that a child with MPPH has a 2-3% chance of developing brain cancer.  At this point, they have a 1 in 30 rate in their subjects - but again that's out of approximately 100 subjects and they think there are a LOT more out there.  So those numbers are probably skewed.  He thinks they are on the high side.  To stay on top of this, we continue to have yearly MRI's.  Done.  We're on it. 

3. Chiari Syndrome - I looked it up and tried to find a link that explained this the way Dr. Dobyn's explained it to us.  I couldn't find one.  Basically Luke's brain is growing at a rapid pace.  Everyones skull has a certain amount of room for your brain.  Everyone has a little extra space in the back.  What could happen is that Luke's brain could possibly outgrow his skull and start pushing into that extra space which would then create pressure on his spinal cord.  Again, yearly MRI's check for this. 

(Did I mention already that Dr. Dobyn's didn't seem overlly concerned about any of this?  It's all just things we need to check on as time goes on - the doctors still have a lot to figure out about this MPPH thing.  I'm just telling you guys what we learned - we're really not all that concerned about any of it.)

4. Seizures - Luke will always have a high risk of having seizures.  That hasn't changed.  What has changed is that out of their research they've found that MOST patients with MPPH have controlled epilepsy.  With typical PMG, you have a higher chance of intractable seizures, with MPPH there is a higher chance of having seizures controlled by medication.  He said that since he is at risk, he wouldn't recommend taking Luke off seizure medications for a long time even if he remains seizure free.  Again, DONE.  We'll keep him on his meds. 

While we were there, Dr. Dobyn's measured Dan's head, too.  Dan's head is less than a centimeter larger than Luke's currently is:(  Luke's head circumfrence is a little over 58 cm and Dan's is 59.  He expects Luke's head circumfrence to top out around 64/65 cm.  But Dan's head at 58 cm is really large.  He had Dan and Luke give a spit sample to try to figure out if Dan has a gene that has a mutation and if Luke has that same mutation.  He thought it would be years - if ever - before we found anything out about that. 

Ok, friends, nutshell....since we visited Dr. Dobyn's after Luke has already accomplished so much we didn't have as many questions about development.  He told us that Luke's life is an open book - which we already know.  He said it is unlikely that Luke will grow up 'normally'.  What is that anyway?  He said that he does know some people affected by MPPH who are in mainstream classes with learning disablities then there are also some who are profoundly affected.....does that sound a lot different than our original diagnosis?  Not so much.  He recommeneded we continue to push the speech therapy and continue with the other therapies we are involved in.  From what we understand from here on out, he will be following Luke's progress carefully (or his lab will!) to help gain more information about individuals affected by MPPH. 

We have a TON of questions already for Dr. Dobyns!  We took a list of questions with us that didn't end up pertaining to our meeting!  When we get more information, we'll keep you informed.  The new diagnosis doesn't necessarily change how we are handling Luke's treatment right now.  We have a few things to check as a precaution but his therapies continue to be on the right track. 

Oh and Seattle was fun!  Gorgeous city!  Luke decided to play out the real life movie - Sleepless in Seattle.  He took pretty much NO naps which was stressful to me but he weathered it well.  Hopefully we can get him back on track now!  We got to spend some time with an old friend of mine, Sara, who is doing her residency in Seattle.  She was a camper of mine when I was a camp counselor in college - now she's all grown up and living in Seattle with her fiance, Luke.  And as I mentioned, my aunt and uncle came down to be our personal taxi cab drivers and love on Luke.  Some pictures below!! 

That's it for now - that's a lot!  We have a lot of reading and learning to do...again....still!! 

Throwing rocks with Dad

Sara & me....so good to see her!

Pretty view from the ferry

Riding the ferry

My sweet family!

Updates Galore!

Hello!!  Our little cowboy was on break this week but we ended our first session of Equine Therapy on a great note!  Luke even got to go on a trail ride with his horse, Sparky!  We never really achieved riding independence (riding without mom...) but hey, he's TWO!  It's OK to still want your mom with you while you're riding a great, big horse!!! 

I'll try to keep this update concise but I have lots....I'll start with GPR56.  This was a genetic test that we have wanted to do since Luke was born.  We've been trying to figure out for the last two years if insurance was going to cover it.  Thanks to the persistence of a sweet lady from our genetics office we finally had it done.  From what I understand a mutation in this gene is a known cause of Luke's particular type of PMG.  Also if he was found to have this gene mutated, then it would have shown that Dan and I were random carriers.  Well, his is fine.  So of course, I think that means that we are not carriers. Not necessarily.  We're pretty much exactly where we were from the very beginning.  Apparently as Linda from the genetics office explained, we all have a whole bunch of meaningful genes and since no one really knows what caused his PMG we still could be random carriers.  Or not.  She thinks there is going to be a more generalized test available within the next year or so that could give us a more concrete answer. 

Now you might wonder why it's so important to me that we find out.  Would it really change anything that we're doing?  No.  At this point it doesn't really matter.  But at the same time it does.  If we're random carriers, the boys could be random carriers.  And I'm going to be forever curious if there was something I did that could have caused this or something I didn't do that could have prevented it.  I don't have some persistent, unhealthy guilt but nagging questions in my mind.  Honestly, I've come to realize as I've talked with more and more PMG families, it is likely we'll never know.  But I'm still holding onto hope.

Moving on!  Speech!  Awhile ago, I read a post on a support group that talked about how her child had apraxia of speech.  I learn a lot - A LOT - from these groups.  So I looked it up. As I was reading it, I realized that it sounded a lot like Luke.  Some of the indicators include the child's receptive language is significantly ahead of their expressive language, the child will have a word and then 'lose' it, the child will often 'grope' for a known word, the child is typically quiet - not much of a babbler.  I mentioned it to our speech therapist and after working with him for a little while she agreed.  She came to me with a book called Becoming Verbal with Childhood Apraxia.  As I read it I realized just how much it fit Luke.  Christine started treating him for apraxia and HOLY COW!!  The kid has taken off!!  It's amazing.  He is becoming much more understandable, imitating everyone and everything, talking up a storm and really starting to communicate.  She tested him and found that his receptive language is slightly above his age level and his spoken language is a few months below.  His articulation test showed how he has many spoken errors.  Between his articulation test, the split between his receptive and spoken language and the positive response we have gotten from being treated specifically for apraxia, he has a tentative apraxia diagnosis at this time.  He also tends to vary his tone of voice and put emphasis on the wrong syllables.  This video was shot a few weeks ago.  It shows the amazing progress he's made as well as how very smart he is!! Whoohoo!! 

As usual, Luke is working his tail off.  He is well within his terrible twos and not only tells us no often, he now kicks at us with a lovely 'HI-YAH!'  (Thanks to Amy, our PT, since that's how she gets him to try to kick!!)  I try not to, but can't help but to laugh at his energy and spunk.  He is starting to be able to really communicate to get his needs met.  He is able to say 'Help, please' pretty clearly.  Today, for the first time, he asked for a specific food that he wanted - not one that was being offered (peanut butter and jelly - soooo my child!).  I usually give him choices that are in front of him that he can pick but today he didn't like my choices and picked his own and I understood what he was saying!  It was a really huge moment!

Our OT has been working a lot of different sensory issues.  Luke remains kind of mystery to her because with some sensory things like ooey, gooey things he becomes very agitated and gets really upset.  He doesn't like squishy balls and things that feel funny.  But then they made cookies and he was fine getting his hands into the gooey cookie batter.  So he continues to stump her...but I have some really great pictures from some activities recently.  Unfortunately, I can't always take pictures because I'm a mess, too, but I managed to get some of the cookie making and shaving cream play (he wasn't a fan of the shaving cream!).

Last weekend we had the opportunity to meet several other families from St. Louis whose children are affected by PMG. It was really nice connecting with them and meeting their children. There were five families all together with children ranging from 1-5 years old. All five families have two children.  It was a busy meeting but so fun!  I'm excited to get to know all of them better and use each other for support.  Here are some pictures from our meeting.

William and his mom, Wendy

Gage

Lucas and his mom, Esther



Esther entertaining Luke and her daughter, Eliana, with 'We Are the Dinosaurs'. 

Willow letting me hold her!  Yay for big victories!! 
We're going to be friends, Willow!!

Finally (for now, I'm sure you've all heard enough!!) we leave Saturday for our appointment with Dr. Dobyns.  I'm excited to meet him and see if he has any new information to help us with Luke.  I'm glad he'll be able to see and handle Luke so he can give us his opinion about Luke's development based on HIM and not an MRI image.  Fingers crossed for a safe trip and that Luke tolerates the plane.  I'll update when we get back.

Through the last two years with Luke I'm constantly reminded of how lucky we are and what a blessed and beautiful life we have with both of our boys - even with all of it's insanity.  We are forever thankful for our friends and our family who make this journey such a sweet ride.  All of our love!

Giddyup, Cowboy Luke!

This was the first few minutes of riding the first day -
I'm not sure what made him change his mind during
that session....

We are almost four weeks into Equine Assisted Therapy.  It's a really amazing program that works on many skills with Luke - it encompasses PT, OT and speech into 45 minute sessions.  I was a little apprehensive about how Luke would handle being on a horse.  I was also nervous because due to his head size, we had to get him a men's size large helmet. It is heavy...and well, LARGE.  Luke was not excited about it.

The first day I show up with Luke and he is going to ride this sweet little pony named Gumdrop.  He's already kind of ticked off at me because I put his helmet on.  Then I put him on a horse and walked away from him.  I wasn't allowed in the arena because I was wearing flip-flops.  I wasn't thinking - duh, of course I can't go around all of the horses with flip-flops.  Ugh.  So...he's doing OK for about 25 minutes.  He's not happy but he's hanging in there.  Then comes 'The Lip'.  For those who have not experienced 'The Lip' when it comes out you have about 5 seconds to figure out what's wrong before a huge WAIL follows.  Well.....the wail followed which was then followed by Luke getting sick on the horse and on one of his side walkers.  And so ended day one.

Day 2 - Yes, we went back.  There are no pictures.  There was no camera involved.  We were down to business.  I had my tennies on and I was ready to go.  We pulled in and Luke says, "Home-uh, Home-uh, Home-uh".  It goes on but I'll stop there.  He was riding a different horse that day named Goose.  Goose was a horse - not a pony so I immediately thought that was our first strike!  A bigger horse could not be a good thing.  BUT today I was prepared with tennies on my feet and tissues in my pocket.  They decided to try it without me going in at first.  That lasted less than a minute before he wailed and got sick again - WITHIN THE FIRST MINUTE.  I wish I was exaggerating.  (Note to self at this point was next time bring a towel...tissues don't clean up puke very well.) 

Now, you'd think that was the end of day 2.  Nope.  The man who was leading the horse had a towel in his car.  He cleaned up Goose and luckily Luke didn't have much on him.  Soooooo we got back in the saddle with me as a side walker this time.  And we sang and sang and sang and got through 40 minutes with a lot of lip but no wailing.  There was  alot of 'All done' and 'Down' but no.  We couldn't stop the horse to participate in the therapy parts but WHEW we made it.  And yes...keep reading for Day 3.



Day 3....

 Day 3 - This time I brought reinforcements!  Dan came with me.  This was the 'make it or break it' session.  I was ready to give up the battle if he hated it again.  So I wanted Dan to come just so he could see Luke on the horse and because I wanted quitting to be a joint decision.  Equine Therapy was supposed to be fun for him.  This two year old has a lot on his plate and he has a lot of therapy so if he HATED this....I was preparing myself to throw in the towel. 

I don't know if it was having Dad there or he had just resigned himself to his horse riding fate but Day 3 was OK.  There was some lip action but not terrible.  AND he participated in the therapy parts and seemed to have fun. Best yet - Dan walked with him for awhile while I kicked back and took pictures and then Dan walked out for about the last 15 minutes and he did fine.  Whoohooo!!!!!!   We go back tomorrow and I'm hoping we've turned a corner! 


Kisses for Goose!

This sweet lady, Jeannie, has been with him all three times.  She
experienced him getting sick both times - personally:(



Luke was keeping the ball in the spoon while Goose was walking
around.  By keeping the ball in the spoon he was
sitting and holding himself upright without holding on. 

There is a crate on the ground.  Luke is supposed to be throwing
the ball into the crate.  While the side walkers support his legs, he
is supposed to use his trunk to bend over and throw the ball
in.  He had different ideas about that - they eventually picked
the crate up for him!   


 

Noooooo....(we don't know why he's saying it? 
It's over at this point.  Hmmmm?

 

I don't know who was smiling bigger at the end of Day 3...stay tuned! 

 

Speech, OT, PT, Oh My!

We had our First Steps reevaluation yesterday.  At a reevaluation meeting we look at where Luke is performing and decide what services need to continue, what services need to be added, what services need to be cut. 

As you all know - Luke is doing amazing.  I try to never forget that or let myself get bogged down in what he can't do.  But when I go into one of these meetings....that has to be my sole focus.  What isn't he doing that other two year olds are?  Where is he behind?  What should be be doing more independently?  The last several weeks, I have been focusing on watching the other kids in his daycare room when I pick him up.  I watch to see what words they are using, how easily they are moving around, what kind of interaction they have with each other.  I have researched developmental milestone lists and more about the brain and its areas of function. 

Looking at where he is and what he is NOT doing, I started stressing out about trying to maintain our PT services while increasing our Speech and OT services.  I wanted to increase Speech to twice a week and OT  to once a week.  I do not want to 'over-therapize' (I might've just made that word up...) Luke and burn him out but this time period in his life is critical for development.  The proof in that statement lies in how incredibly well he is doing after 2 years of early intervention services. 

Another worry I have, of course, is Ben.  As a teacher, part of the joy I have is getting to spend the summers with the boys.  If we were to get all of the therapy I wanted - then it would probably greatly decrease the amount of summer fun we were going to get to have. 

This quote has come to mean a lot to me.  Please don't think I feel like we are making huge sacrifices for Luke.  But in a way we are.  We are sacrificing our time with Ben.  We are sacrificing time with friends and with each other.  But if those sacrifices right now mean the very best quality of life for Luke - and our family - later, then they are indeed not sacrifices at all. 

Sooooo our First Steps coordinator is AMAZING.  She looks past the black and white of the paperwork and the guidelines she has and listens to his therapists and me talk about Luke, about his PMG and about his brain.  On paper, Luke is not terribly far behind.  But given the areas of damage in his brain his risk for becoming farther behind - particularly with his speech/language - is high.  She agreed - easily - to speech twice a week and OT once a week and maintaining our PT!!  So our lives have gotten crazier and better! We have one more year in First Steps and we are certainly making the best use of our time! 

I'm not sure what our schedule will look like this summer - Speech, OT, PT, Equine Therapy, ABM (Yikes!).  Of course, I'm worried about the amount of time that I'll have to occupy Ben while we have therapy as well as finding 'extra's' for Ben.  Luckily I have a lot of people who are more than willing to help so Ben may even end up with a better summer than I had planned for him!! 

Today we had Luke's neurologist appointment.   It was great.  Luke was not in a showing off mood because the appointment was not at a good time for him.  However, he did well and we come back in another 6 months.  I was under the impression that Dr. Smyser would be our neurologist until Luke was an adult.  I was wrong...eventually we 'graduate' from his program.   I DO NOT agree with this and am planning on figuring out a way for Dr. Smyser to keep his first 18 year old patient...Ideas on this???  Dr. Smyser just kind of laughs at me...he doesn't fully realize how very serious I am!!!!!!!

I've said it before but again, I am so thankful for the high level of support we have gotten and are getting for Luke.  In 'meeting' people around the country and the world, I have come to know that we have truly been blessed with the doctors, therapists and services we are getting to help Luke be the very best he can be. 

Happy 2nd Birthday, Luke!

Today Luke celebrated his second birthday!  I can't believe how fast time has gone.  Two years ago yesterday, I was crying on my way to the hospital.  We knew about his Polymicrogyria. But we had no idea what the road ahead was going to look like for our family and for our son(s).   I wasn't ever sad about him coming - I just didn't know how or if we were going to be able to protect him once he came.  But man is this child a fighter & hard worker! 

I think I've said before that this blog has become somewhat of a journal for me.  I like to go back and look at his progression - how big he's getting and how much he's learning.  So to mark this important milestone - here's what Luke is up to at two years old!!

*He is doing well with his gross motor skills.  He is learning to jump - he can jump with both feet when he's holding onto something.  Sometimes he can make a small jump by himself.  He is walking backwards and is sooo proud of himself!  We are working on running.  He is starting to walk up hills independently and is becoming more fearless as he goes down them (yikes!).  He is able to climb up into our play set and is going down the slide on his belly.  He loves it!!

*His speech is coming right along.  He seems to understand most of what we say.  He is still difficult to understand but it's becoming easier.  He has a lot of words that I understand.  He is still inconsistent with producing some of his 'known' words.  He'll have a word but then when you ask him to use it - he can't spit it out.  We are trying to get him to understand how to use two words together and to speak more clearly.  His speech therapist has worked wonders with him.  I think he is starting to show some frustration as he tries to communicate something to us but is unable to - but that's normal toddler behavior:)  Yay!

*His fine motor skills are improving.  He still has difficulty using the pincer grasp but is making progress.  We are continuing to work with him while he is eating.  Luke still tends to shove too much food in his mouth.  He understands the concept of picking up one piece of food at a time but he doesn't choose to do it most of the time.

We had a quiet birthday day for our big boy who tends to get a ton of attention.  Since we hadn't really planned anything for the big day (GASP), we forgot to get him a present!!  Yes, we are terrible parents!!  We went out for dinner tonight and then to Toys R Us.  Luke got to pick out his very own toy for the first time.  So we walked out with an Elmo doll & some Elmo books.  The kid loves Elmo (Ehhhmmmo!). 

He has a neurologist appointment coming up next week.  We are also meeting with our First Steps coordinator to determine his services for the next 6 months. 

Of course, his birthday celebration continues tomorrow.  I am a big believer in Birthday Weekends (weeks, months...milk it!).  Again nothing too exciting planned - except for time with our little family.  Wait - that's huge! 

Happy St. Patrick's Day to all of you and most importantly - Happy Luke's Day to everyone!!  Love to you all!