We've had a busy couple of weeks!  A few weeks ago, we had our big therapy team meeting.  At this meeting, her therapists went over Meghan's test results.  It is so awesome to see the progress on paper that Meghan has made since last year!  She is doing a super job!  While she is still developmentally delayed, she is making progress and has never plateaued - and that is what matters the most.  We also learned that Meghan will graduate the birth-3 program when she turns 3 in June.  If she would've scored super low on her testing, she could've qualified for extended services during the summer months.  Not going to lie, I tear up just thinking about Meghan's last day of therapy because her therapists have been such a huge part of our life for the last 2.5 years.  They have unbelievable patience and knowledge and I will forever be thankful for them.  We did find out that Meghan will start ECSE (early childhood special education) in September at the public school.  She will go to school 4 mornings a week.  She will receive all of the therapy she gets now, but will have therapy at school instead of at our home.  Going to school will be a HUGE change for Meghan (and me), but I know it will definitely help with her social skills and is the best thing for her so she doesn't fall farther behind.  The nice thing about the class Meghan will be in is that a couple of the other kids are smaller in size too.  Her class can have up to 8 kids.  We started writing her IEP plan and will finish the final details when we have a team meeting at school in August before school starts.

Today, Meghan had a couple appointments in the cities.  She had an ultra sound and a check up with the Endocrinologist.  We were a little shocked when we found out that her weight and height has stayed the same since our visit with the Endo 6 months ago.  Miss Meghan weighed in at 19.6 pounds today (shoes off/clothes and diaper on).  The original plan for today was for Meghan to have her IGF level retested and if her level was still low, she would've then talked about doing a growth hormone stim test.  However, the plan changed when the Endo saw no growth from 6 months ago.  So, the doctor decided to skip over having her IGF level retested and is going right to having a growth hormone stim test done.  This is a test that takes several hours.  We will stay at the short stay unit while this test is performed.  This is what I know about the stim test:
 A stim test shows the amount of growth hormone your body makes. Not enough of it may cause one to grow slowly.
A stim test is used to test your pituitary gland. It helps the doctor see if this gland is working well. The pituitary gland makes growth hormone. The stim test shows whether your gland makes enough growth hormone. During the stim test, you receive special medicines by IV to trigger the pituitary gland to make growth hormone. In some people, the gland does not make enough growth hormone in response to the medicine. This could mean you have growth hormone deficiency, or GHD.

 

The pituitary gland releases growth hormone in pulses or bursts, mostly while you sleep at night. During the day, not much growth hormone is produced. To see whether your body makes enough growth hormone, the pituitary gland must be triggered to make it. Then the doctor can see how much is made. A stim test is not like most blood tests. A blood sample is not taken just once. Instead, the doctor measures growth hormone by taking many blood samples throughout the coarse of the stim test. The test usually takes between 3-5 hours to complete.  After the test, the blood samples are sent to the lab. There, the amount of growth hormone will be measured.  We should get Meghan's results the next day.  If Meghan does have GHD, we will consider starting growth hormone therapy, which involves daily injections until puberty.  If she doesn't have GHD, her doctor said she would consider trying growth hormone therapy to see how her body reacts to it.  While we don't look forward to giving her daily shots, I think we are both at the point where we are willing to try this to see if it helps her grow.

In the mean time, she would like us to add extra calories to Meghan's meals.  She would also like us to add carnation powder to Meghan's milk for extra calories.  She would like us to meet with a dietician and we are hoping this can be done while Meghan is having her stim test.  The stim test should get scheduled in the next day or two. 

She wasn't sure about the ultra sound at first today.  She held onto my fingers for dear life!

A much happier girl now that no one is poking at her.  Waiting for the Endo doctor.

       

Today we celebrated Meghan's 2 year Shuntiversary!!!  We are so proud of how far she has come the last 2 years!  This is a pretty big anniversary, because 50% of shunts will fail within the first 2 years.  Phew!!  We made it this far and I KNOW we'll make it many, many more years with this shunt!

How did we celebrate?  By spending the evening at the doctor's office, in true Meghan fashion :)  Miss Meghan has had somewhat of a rough month.  She had strept a few weeks ago, had the flu last weekend, and now has strept again.  She is on a stronger antibiotic now so hopefully that does the trick!  We also had a super yummy DQ treat after the doctor visit.  This weekend, we'll take the kids to a hotel to have a weekend of fun and to celebrate this milestone, and also Luke's awesome report card!!  Looking forward to a weekend away!

 Meghan resting after her shunt placement on 4-7-2012

 

Meghan (2 years old) at the Hydrocephalus walk



Meghan has been a busy little girl.  She has been working hard at therapy and we are seeing progress.  She is making the most progress with fine motor skills and speech.  She LOVES to learn and she picks up on things very quickly.  Gross motor is still a big struggle, but she continues to work hard!!  She has spent the last month going through lots of testing with all of her therapists.  Her therapists asked us to take a tour of the ECSE (special ed) preschool through the public school system.  We had our tour a couple weeks ago.  There is a good chance that Meghan will begin preschool in September, depending on how she scores from the tests she's had over the past few weeks.  The classroom can have up to 8 kids and there are 2-4 para's in the classroom on a given day.  Preschool will be 4 days a week, from 7:45-10:45ish.  While she is at preschool, she will still receive all of her therapies she is currently receiving.  The only difference is Meghan will have therapy while at school, instead of at our house. We were very impressed with the preschool room, the teacher and the para's.  The room is very structured and everyone gets very involved.  While we were there, Meghan got to participate in a few things, too!  It was so cute watching her!  We will find out how she scored on her tests and we will work on transitioning Meghan from an IFSP plan to an IEP plan on April 9.  This meeting will be with all of Meg's therapists, a developmental specialist and the special ed preschool teacher.

She also had a follow up MRI a few weeks ago.  We met with her neurosurgeon after the MRI.  She was unsedated for this MRI and it was only 5 minutes long.  I was able to go in the MRI room with her and rub her feet.  They put a mirror above Meghan so that she could see that I was there.  I think that really helped her.  By the end of the MRI she wasn't crying anymore.  I am so proud of how far she has come with being okay with doctors and procedures being done on her.  A year ago, we couldn't even walk into a doctor office without her crying hysterically.  Her MRI results were essentially good.  Her neurosurgeon said her shunt was overdraining, which caused her ventricles to become too small in size.  Ventricles that are too big aren't good, and ventricles that are too small aren't good either as they can become slits.  Meg's NS said Meghan's weren't quite slits, but close.  So, he turned up the setting on her shunt.  This is done by putting a special magnet over her shunt valve and he can adjust the shunt setting by turning the magnet.  It takes just a few seconds to do and it doesn't hurt.  The hope is that by changing the setting, that the fluid will increase in her ventricles.  He said ventricles become too small due to overdraining, or because there is a blockage somewhere along the shunt system (again, Meghan's was due to overdrainage).  We just love her neurosurgeon.  When we first met him almost 2 years ago, he was very serious and we couldn't get a smile out of him.  Now, he walks in the room and greets Meghan and talks away with her.  He talked to us about having a couple things done down the road.  Meghan has had a change in her sleep pattern lately and is up often throughout the night.  If this continues, he would like to have a sleep study performed on Meghan.  He would also like Meghan to have neuropsychologic testing done within the next year to determine Meghan's particular learning profile.  As far as her Chiari malformation goes, at the moment it is stable, but features of Chiari are again noted on this MRI.  That is a little disheartening, BUT, we know what to watch for neurologically and we will just take it as it all comes.   Her next MRI will be in 3-6 months. She will be sedated for this MRI and it will be of her entire brain and spinal cord.  These MRI's usually last 1.5 to 2 hours.  She will also have her skin biopsy performed after the MRI while she is still sedated.  Next month she will have her ultra sound and will meet with the Endocrinologist again. 

It is crazy to think that one year ago, we were sitting in Meghan's PICU room waiting for her to wake up from her latest brain surgery.  These anniversary dates are always a day filled with many emotions ranging from ecstatic to angry to joyful to sad to thankful.  I'm not sure how to sum up all the emotions that I go through.  I am so ecstatic that surgery improved Meghan's daily life.  I'm angry that Meghan can't do some of the things that other kids her age, and younger, can do.  I'm joyful that we see continued improvements.  I'm sad that she has to go through so much at such a young age.  But I'm thankful for all of this, because if it wasn't for this journey we are on, we wouldn't have met the awesome families that we've met along the way, I wouldn't have changed my outlook on life and I wouldn't have such compassion for little ones that are fighting big battles.  We've learned so much and we are blessed to be on this journey, even though it can be a wild roller coaster ride at times!  We are so proud of everything you have overcome and continue to overcome!  We love you to the moon and back a million times over sweet girl!  And always remember to rock those scars!!!

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!