Thursday, January 26, 2012

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 ( Monday night.  One of the blogs that I follow is for this little guy, Oakes (  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!