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!!!