Happy New Year (a few days late)!  2013 started out rocky with Meghan getting sick with the big flu bug 2 days before her 2nd brain surgery.  But, we got through that and rescheduled surgery for a month later.  The surgery date came.  Surgery went great and recovery went better than we expected.  The first 3 weeks post op recovery was hard, especially watching her re-teach herself to sit unassisted, crawl and walk again, but we got through it and Meghan showed us -- once again -- how much of a warrior she is.  Then, she got sick with rota virus, which almost landed her in the hospital, but thankfully we were able to get her well again in the comfort of our home, with daily check ups from her doctor.  We've learned of new diagnosis' in 2013, but none of this stops Meghan from proving to everyone that nothing will stop her.  We ended 2013 as well as I could have imagined.  This has been the first winter that she has been so healthy and it is great!  She has gotten a few mild illnesses so far this winter, but NOTHING like the last 2 winters!  We are also hoping for a hospital-free 2014, which would make it the first year she hasn't been hospitalized!  Fingers crossed!!!

Meghan's biggest issue is the back of her shunt turning red periodically.  We've discussed this with her neurosurgeon and he believes this could be because her shunt is draining at too fast of a rate.  We noticed this issue happening 1-2 times/week a couple months ago, but it does seem like this is happening more often lately.  The plan is for Meghan to have a rapid MRI (no sedation and the MRI will only look at her ventricles so the MRI will only take 5 minutes) in about a month.  Her NS will look at the size of her ventricles and if they are still small in size, he will turn down her shunt which will allow the cerebral spinal fluid to flow at a slower rate.  This will hopefully take care of the redness.  I have noticed her itching around the area of her shunt and shunt tubing lately as well.  Hard to say if she is just feeling it though as she now knows her shunt is there.  I always held onto hope that her head didn't hurt her.  However, my heart broke a couple weeks ago when she woke up in the middle of the night.  She was unconsolable for a good 10 minutes.  I finally got her calmed down (thanks Dora) and she laid down and pointed to the back of her head and said owie (in her own word).  I just wish I could go inside her little body and feel whatever she feels and take away any pain she might have.

Her speech.......oh.my.goodness!!!  LOTS of progress the last few weeks!  She has added 3 words (yeah, ice and on) to her vocab in the last month.  Her favorite thing to say right now is ah-o-moe, which is Meghanese for I don't know.  She is doing great saying single words!  She does struggle stringing a group of words together, but this will all come along eventually.  Once again, we are so lucky to have a great group of therapists working with Meghan!

We did hear back from the Geneticist and Meghan tested negative for Russell Silver Syndrome (a form of dwarfism).  So, the next step is a skin biopsy which will be done during her next sedated MRI sometime in May.

Meghan had her eye doctor appointment last week, which went great!!  The eye doctor has no concerns about her vision and from what he can tell, she doesn't have any neurocuteounous syndromes (which is on the Geneticists list of possible conditions).  He will get in touch with Meghan's geneticist with the results from today's appointment so they are up to date as well.  He would like to see Meghan in a year again to double check her vision seeing objects distantly.  He said she wasn't seeing as far as she should be, but she also wasn't very cooperative during this point in the exam, so her uncooperativeness is most likely the result of her low score when he checked her distance.  So it sounds like one more check up in a year and if there are no issues, he will not need to see Meghan again!

Meghan's biggest news is that she is now able to walk down an entire flight of stairs unassisted!!!  She did this for the first time on Monday...twice!!  The little stinker hasn't done it anymore since Monday, but that's fine because now we KNOW she can do it.  This is one of her therapy goals that she has been working on for a good 6 months.  But, in order for her therapists to be able to call this goal accomplished, Meghan has to show them that she can do this for 3 consecutive home visits.  Let's hope she will be willing to show off her new talent to them the next 3 visits so we can get this goal crossed off her "to-do" list!!!  This goal was dedicated to Meghan's runner, Jenn!  Meghan's next goal she will dedicate to Jenn is to walk up an entire flight of steps unassisted.  This will take time yet as it's a lot of work for Meg's little legs.  At the end of this blog post is a video from the day she walked down the entire flight of stairs unassisted.  She wouldn't go down all of the steps by herself while being videotaped as she gets camera shy!!! 

Today, Meghan and I set out on an honorary run for Meg Cross Menzies.  She was a mother of 3 small children, wife of a police officer and a dedicated runner.  She was tragically killed by a drunk driver the morning of January 13th while she was on her morning run.  I have very recently started running...very small distances.  This tragedy touched me and I wanted to do something to honor a life that was taken way too soon.  An event was created called Meg's Miles.  Anyone who wanted to run, walk, jog, could do so anytime of the day on January 18th.  So...Meghan and I decided to run 1.5 miles in Meg's honor.  It was the longest I have ran since high school, but we did it.  We did this in honor of Meg, her children, her husband, but we also wanted to do this to show our support for Meghan's runner.  We want her to know that we support her love for running and we think about her while she's on her runs or at a race event and we pray for her safety all the time.  Please take a moment to say a prayer for Meg's family, especially her husband and children.  Hold your children and loved ones closer, take a moment to call someone you haven't spoken to in a while and tell then how important they are to you and count all of your blessings.  RIP Meg!

Here's the stairs video...

It's been a while since I've updated, but like the saying goes...no news is good news :)

There hasn't been too much going on lately.  We are on a little break from doctor appointments until January.  This break has been wonderful!  We still don't have any news on the genetic test.  Meghan is being tested for Russell Silver Syndrome which is a form of dwarfism.  I had no idea, but there are over 200 different types of dwarfism!  However, the geneticist doesn't feel this is something Meghan has, and to be honest, neither do I.  But, it is part of the process of elimination.  In January, Meghan has her dermatology and eye doctor appointments.  Then, sometime in January or February, will be her ultra sound, AFP test, rapid MRI, neuro appointment, and Endocrinology appointment.

Meghan had her last therapy session for 2013 last Wednesday.  She is now done with therapy until January 16th.  She continues to work very hard on all of her goals.  She has MASTERED simple sorting (i.e. sorting cows vs. pigs)!!!  She also recently mastered identifying all items she was asked to identify from her therapists!!  This is a great indication that she is very receptive cognitively (she understands what is being told to her), which we already knew!  Her therapists check her receptive skills every couple of months to make sure there is no regression, which can sometimes happen with kids with neurological conditions.  She is working so very hard on expressive language (saying words).  She has added 2 new words to her vocabulary - yeah and ice.  I know I am a little biased, but she has the sweetest sounding "yeah."  She continues to expand her sign language.  Some goals she is still working on: running, jumping, going down an entire flight of stairs unassisted (and going back up), dressing and undressing, using a fork to stab food, climbing onto furniture, standing on one foot.  I love her therapists as they understand Meghan responds best to praise (and lots of it).  This gets Meghan's determination going while working on a goal.  We are so proud of Meghan with every accomplishment and every time she works on a goal.  She's very determined and she will one day master every single goal!

Meghan has been a busy girl wanting to do everything all by herself lately!  She missed last week of therapy as she wasn't feeling well.  She has this week off due to the holiday.  She has learned lots of new signs including cheese, cracker, cereal, apple, cookie (her favorite new sign lol), kitty, shoe, ball, hot, cold.  She is trying so hard to get words out.  We are seeing small progress in language, but we'll take every little bit of progress that we can get!  Her favorite thing to do lately is talk on the phone! 

We are still waiting on the results of the genetic tests from a few weeks ago, but we did get the Geneticist's dictation from our appointment, or as I refer to it - the what they never tell you report.  The dictation states that the Geneticist has a very high concern for Meghan to have an underlying genetic condition and she highly suspects a mosaic difference in which there are two genetically distinct cell lines in her body, one of which contains a genetic abnormality.  This is where the skin biopsy will come in to try to make a diagnosis, however, it is possible that the mosaicism is secondary to a single gene change, in which case, identifying an underlying diagnosis would be more difficult.  She suspects that Meghan's rash is related to her underlying diagnosis.  Because of the possibility that Meghan could have a neurocutaneous mosaic syndrome, she wants Meghan to see a pediatric ophthalmologist.  This is scheduled for January 15th and will be a 2 hour appointment.  God help us that day!  Neurocutaneous syndrome is a broad term for a group of neurologic (brain, spine, and peripheral nerve) disorders. These diseases are life-long conditions that can cause tumors to grow inside the brain, spinal cord, organs, skin, and skeletal bones.  Just to clarify...underlying genetic diagnosis simply means the genetic condition hasn't been identified yet.  It doesn't particularly mean it's a rare genetic condition; although depending on if a genetic abnormality is found, it could end up being a rare condition.  All of this genetic testing takes a lot of time - sometimes years - to get answers.  I wish I understood mosaicism more, but it's way too scientific for me to even try to comprehend.  It would make sense if Meghan has 2 different cell lines as all of her conditions (except neurological and spine conditions) are on the right side of her body - fused toes, body rash, leg length difference, girth difference (hemihypertrophy), Hydronephrosis.  She even has an epicanthal fold (skin of the upper eyelid that covers the inner corner of the eye.  The fold runs from nose to the inner side of the eyebrow) on her right eye, but not her left.  Strangely, the right half of her hair is different than the left side as well, but is only noticeable when wet. 

Jeff left a couple days ago to go on a hunting trip with some of his friends.  I think Meghan was trying to stop her Dad from leaving :)

Meghan's runner ran her first race since being matched with Meghan!  She did awesome and placed 40th out of 117 runners!  We are so proud of her!!!  Meghan got a special package in the mail recently from Jenn.  The package included a Mighty Meghan cape, a book of Dora stickers, Old Bay seasoning along with suggestions on what to use the seasoning on and a yummy recipe, a package of delicious cookies made locally from where Jenn lives, the race medal and bib from their first race together and a Raven's window cling for Luke.  I think it's pretty awesome that she sent Meghan her very own medal and bib!!  We have the bib, medal and cape displayed in a special place in Meghan's room.  Meghan loves wearing the cape and medal!!  Jenn will be running another race in a few days so we are busy making her sign.

A little motivation we sent Jenn the night before her first race as Meghan's buddy :)

 

Look closely...Jenn's shoe laces say I RUN FOR MEGHAN

Opening her special package from Jenn

 

Showing off all of her goodies!!  Thanks Jenn!

Meghan wearing her Mighty Meghan cape hand made from Jenn...this girl is talented!!!

 



Hard to tell from her expression but she was telling quite the story while looking at her medal!

Day of Thanks # 24:  I am thankful for short work weeks!!!  Enough said :)

Day of Thanks #23:  I am thankful that Jeff's sister, Jennifer, was able to watch Meghan for a little bit this morning so I could go to Luke's First Reconciliation.  I am also thankful for my mom and Jeff's mom who watch Luke and Meghan when needed.

Day of Thanks #22:  I am thankful for wonderful neighbors!!  Everyone is so helpful and willing to help each other out!  I am also thankful that Luke has kids to play with in the neighborhood.

Day of Thanks # 21:  I am thankful that I have 2 kids who like to help out with house stuff.  Mom gets help and the kids learn to do chores and help others....a win, win!