Well, we managed to keep Meghan healthy for 6 weeks straight!  It was the longest amount of time she has ever stayed healthy and we enjoyed every single second of it!!  However, Meghan has hit a little rough patch lately and has been very irritable/emotional, not sleeping the best and has come and go fevers - but - it's pretty common for Meghan to run low grade fevers - especially when has sensory overload (too much activity/overdoing it).  She did end up with an ear infection, cold and cough a week ago, which is still lingering, so I think that is contributing quite a bit to the crankiness - as well as FINALLY getting a boat load of teeth.  On top of all of this, she's recently had a couple falls - hitting her head both times :(  I called Children's and spoke to Meghan's NS nurse practitioner and she reassured me as long as she isn't showing any abnormal neurological symptoms (which she isn't), she is okay.   Jeff and I know what we need to watch for - but it's more reassuring for me to hear it come from the neurosurgery staff that she's okay versus hearing it from the local doctors who I trust...mmmm....not so much.

Meghan started speech therapy.  She understands way more than she can say, so the first thing the speech therapist wants us to do is to introduce basic sign language to Meghan.  That way, she has a way of being able to communicate to us - and others.  Luke thinks it's pretty neat to teach Meghan some of the signs he's learned at school!  The first group of signs we are introducing are Mom, dad, drink, eat, puppy, I love you, all done and book.  She's signed "more" for a few months, so we have 1 sign down!  We were also given great ideas of things to work on with her each day to improve her speech.  PT/OT is going good.  For some reason, Meghan's left side is weaker than normal lately.  Her left side has always been her weaker side, but she sometimes goes out of her way to use her right side, even when using her left side would make things easier on Meghan.

We hope everyone has a wonderful Easter!  Last Easter was spent in the hospital with Meghan after she had her shunt placed, so we are looking forward to having an uneventful Easter at home this year! 

Little Meggers has officially been scanned from top to bottom.  In the last 21 months, she's had MRI's of her brain, neck, and spine - ultra sounds of stomach, kidneys, bladder and esophagus - x-rays of upper GI tract, and the newest x-rays of hips, legs and ankles.  She had her lower extremities x-rayed last week, as requested by her therapists.  The x-rays came back clear which is great!!  However, Meghan's therapists wanted x-rays of her feet as well, but the doctor didn't include the feet when he put in the order (ugh!).  The therapists wanted her hips and legs x-rayed to check for bone deformities which could be the reason why she has gait abnormalities.  They wanted her feet x-rayed since she has moderate in-toeing.  Our next adventure will bring us to Gillette Children's on April 23.  We will have a consultation regarding Meghan's feet to see if she needs to be fitted for SMO's (braces that come to ankles) or not.  St. Paul Children's - where we usually go - sent us to Gillette's as they also have a gait analysis lab if needed.  I have waited a long time to have her feet looked at by a specialist so I am anxious for this appointment.  Below is a picture of what Meghan's feet do when she stands/walks.




This is not Meghan's actual feet.  Too impossible to take a picture of her walking and not end up with a blurred pic :)

What a difference a week makes!  Meghan is walking again and is off all of the medications she was sent home on.  YAY!  Other than her neck being slightly stiff, she is pretty much back to her normal self again.  It is SO great to have my cuddly, little helper back!!  Luke is pretty thrilled to have his partner in crime back, too :) 

Since surgery, one of the first improvements I noticed was that she now sounds like she has more of an open airway - her voice sounds clear and not as raspy.  Also, one of her symptoms prior to surgery was chocking and gagging when she would eat.  She did not have these issues at every meal, but it would happen about once a week.  We are now almost 3 weeks post op and we have not had ANY chocking or gagging issues!!!  This is huge as Jeff and I would be on edge every time she ate just waiting for her to choke - thank goodness we are both certified in first aid as we have had to put our training to use with her a couple of times.  The best part since surgery......we have never seen Meghan as happy or as smiley and giggly as she has been these last couple weeks.  I think for the first time since birth, she isn't in pain (other than from surgery). 

Meghan has finally been cleared from her doctor to switch from her infant carrier to a big girl car seat that faces forward!  As of Thursday, she weighed 19.6 pounds with clothes and shoes on - so not quite at the 20 pound mark, but given her age, he okayed her to switch.  Meghan thinks it's pretty cool to see what's going on now while we're in the vehicle. Hopefully facing forward will help with her car/motion sickness, too!

Therapy resumed on Wednesday and Meghan did great.  I wasn't sure if she'd tolerate the entire hour of therapy but she did.  My mom came over to watch the daycare kids so I could sit in on therapy with Meghan.

We placed our 2nd shirt order on Wednesday!  We are definitely getting awareness out to the public!! 

I am in the process of putting together a walking team for the Hydrocephalus walk.  Unfortunately, an exact date hasn't been scheduled for the walk yet, but I am guessing it will be toward the middle of September like it has been in years past and it is held in the Cities (Fridley if I remember correctly).  If you are interested in walking with Team Meghan, or if you'd like to donate towards the team, let me know by emailing me (jennasuess@comcast.net) and I would be more than happy to get you information regarding the walk or how you can donate.  I am brainstorming fundraising ideas to raise money for Team Meghan!  The more money we raise, the closer we are to finding a cure!!