Will you walk for me?

WILL YOU WALK FOR ME??

When Meghan was diagnosed with Hydrocephalus, we knew we wanted to do what we can to find a cure.  We found a wonderful organization called Hydrocephalus Association.  One of the ways HA raises money for education and research is by setting up walks all over the country.  We would like to support this organization financially by participating in their walk.  Minnesota's HA 2013 walk will be held on Sunday, September 15, in Rogers, Minnesota.  Anyone is welcome to walk with Team Meghan!!  If you would like to walk with us, you will need to register online at http://walk4hydro.kintera.org/faf/search/searchTeamPart.asp?ievent=1077849&lis=0&kntae1077849=0D4E954D632D4981A2CF781E6E025D35&team=5568491.
When you click the link, it will bring you directly to the Team Meghan page.  Click on the Register Here icon on the top left of the team page.  On the next screen, chose the "I Agree" button.  Then, choose the option that best suits you (do not click the Join as an individual option).  Then, click the down arrow and chose Team Meghan.  When registering yourself, or your family, you will need to know the following info on Meghan: Her birth year is 2011, she has Congenital Hydrocephalus and she was diagnosed at 9 months.  If you are registering as a family, there is an area on the registration page for registering notes.  You can type in all the members of your family who will be walking in that info box.  Once you are registered, you will receive a confirmation email.  If you are unable to walk with our team but would like to donate, just click on the above link and choose the donate now icon on the top right of the screen.  Please let me know if you are having any problems registering.  This is the first time we've registered Team Meghan as a walking team so this is all new to me :)  There is no fee to walk!  If you raise $50, you will earn a free HA walk t-shirt!  Our team goal is to raise $500!  Please help us meet our goal so we can provide money for the HA to conduct research to find a cure for Hydrocephalus!  My sweet little girl, along with SO many others needs a cure!  ***Shirt orders are due by July 31st!***

We would like to have all of the Team Meghan walkers sporting the Team Meghan hydro shirts on the day of the walk.  If you would like to walk and do not have a shirt but would like one, let me know and we'll order you a shirt!  If you prefer not to purchase a shirt but would like to walk, we ask that you wear a blue shirt - if at all possible.

**** Walk info****
Walk location: North Community Park
                         13750 Bittersweet Lane
                         Rogers, MN 55374
Registration 8:30am - 9:30am
Kids Activities 9:00am - 12:00pm
Opening Ceremonies 9:40am - 10:00am
Walk 10:00am - 12:00pm
The walk is a 2 mile walk

Very tentatively, we are planning on meeting as a group at the park at 9am on September 15!  We hope to see your family there :)  If you have any questions, email me at jennasuess@comcast.net

Meghan had a great 2nd birthday!  She is having a lot of fun playing with all of her new toys!  It's so great to see her so happy and full of life!  She is definitely getting more spunk in her, but she is still my little mellow cuddlebug and loves to help out.

Meghan had her 2 year well baby check up last week.  She loves having the doctor use the stethescope to listen to her belly.  The appointment went well.  We discussed the last MRI results and got him up to date on that.  His biggest concern at this point (as is ours) is her growth.  She has now lost some weight and is at 20.2 pounds and is 30 inches.  She has now dropped to being less than 1% for weight and is at 1% for height.  He would like her to be seen by an Endocrinologist.  This topic was discussed a couple weeks ago with the geneticist.  She wants to give Meghan's body a few more months post op to monitor growth before adding another specialist to our list.  The doctor was surprised they want to wait a few more months as she is getting to a critical stage of development and if there is a growth issue, we need to address it before it affects her long term.  Jeff and I have talked about this and we have decided that we are going to wait to see what the genetic tests come back as.  If everything comes back okay, we are going to go ahead and see an Endocrinologist.  The primary dr. thinks she might have a growth hormone deficiency.   He is also having her do speech therapy at the clinic this summer.  Meghan's speech therapist through the school district is off during the summer and there hasn't been anyone hired to fill her position yet and her speech definitely needs continued help as her vocabulary is around 7 words.  Her sign language is going great and she will sign around 13-15 signs!  She picks up on them very quickly.  The newest sign we are doing is fish.  Luke, of course, loves doing this sign with her as fishing is his favorite thing to do :)  We haven't gotten any of the genetics results back yet and don't expect to for another week or two. 

Luke is getting his turn in the OR tomorrow as he will be having his tonsils and adenoids removed.  So far, he's being brave about having this done, and I'm hoping for a smooth recovery.  We stocked up on lots of ice crème, popsicles, jello, pudding and plenty of water!

Happy 2nd birthday to our sweet little Meggers!!!  I can't believe two years has passed since you were brought into our lives!  Happy Birthday!!!

 

Meghan had her Geneticist appointment earlier this week.  We were warned it would be a long appointment, but neither of us were prepared for a 2.5 hour appointment.  Needless to say, the kids were ready to burst out of the room.  The Geneticist confirmed that Meghan has right sided hemihypertrophy affecting her right foot, leg, arm,face and tushie.  There is another condition - Beckwith-Wiedemann syndrome - that some people with hemi have.  Meghan has some characteristics of this syndrome so they did a blood test to check for this condition.  If she has BWS, she has an 8% chance of developing stomach tumors (she has 6% chance if she has hemi without BWS).  We should find out results in a week.  They also did an AFP - which is a tumor marker blood test.  This test will be repeated every 3 months until she is 4.  This looks for cancer in and on the liver which isn't visible on ultra sound.  This test came back at a good level for her age so that is great news!  We will do full abdominal ultra sounds every 3 months as previously planned.  This is to monitor for development of a childhood cancer called Wilms tumor until she is 8.  The next 2 ultra sounds and AFP tests will be done at Childrens, but we are hoping they can then be done in Mankato.

They also did a microarray analysis blood test which looks at the structure of her chromosomes.  They are looking for any chromosome abnormalities (deleted or extra chromosomes or a chromosome that didn't fully develop) that could explain why she has the conditions she has.  This test could come back totally ok, show a chromosome abnormality, or it could pick up on other conditions.  We will find out results in 3-4 weeks.  We will go back in 6 months and the geneticist we saw today would like to bring in another geneticist to take a look at Meghan at that appointment.  We will also go over the findings on blood tests - if anything is found.  She said if the microarray test comes back okay, she wants another geneticist to look at her to see if they have any ideas.  She said the strange thing is that some of her conditions (fused toes, short statue, leg length difference, hemi and seldomly hydrocephalus) can be hereditary.  Since no one on either sides of our families have any of these (except short statue) it is strange why she has these issues.

 I think, still, a big concern is her growth.  My wish is for any growth issues to be pinpointed.  We need our girl to grow and for her organs to grow and stay healthy!  At 2 years old, she is at 1% on the growth chart for weight or height for her age category.  The geneticist wants to give Meghan a little more post op time to see how she grows.

 Other than confirmation of hemi, we didn't learn too much yet.  We will see what the blood tests come back as - hopefully all is okay, but it would almost be nice to know a chromosome didn't develop "normally" which is why she has the several conditions she has and we would have our answer on our unique girl.  We will also know, after the microarray test, if any of her conditions will be passed down to her children.  This will be good to know.

Today, we got the best news we have received in the past 13 months!  Meghan's brain MRI looks great!  The size of the ventricles (hydrocephalus) are normal in size and her cerebellum (bottom part of the brain) is decompressed and is now sitting inside of Meghan's skull right where it should be (Chiari).  CSF flow anteriorally and posteriorally is freely flowing! It was AMAZING to see the pre op MRI images compared to today's images.  Complete difference (I will post pics when I get the CD)!  The syrinx in the thoracic area (lower spine) is still there, but it decreased in size, which is what we were hoping for!  Thank you God!!  He would like to see Meghan in 6 months for neuro check and to check on her development, but he does not feel a need to do another MRI for a year - unless symptoms come back.  Thank goodness.  Today was Meghan's 5th MRI and her 3rd sedated MRI (2 of the MRI's she was not sedated for).  She always came off of sedation real nicely and woke up calmly.  That was not the case today.  She woke up FIESTY and very disoriented.  She didn't know what she wanted and fought us for a good half hour straight.  Man this itty bitty 20 pounder sure is strong for her size!  The nurse gave her 2 icies thinking the cold would snap her out of her fit.  It helped while she was eating, but once she was done, her fit continued.  The nurse said this behavior is very typical of kids ages 2 and 3 after waking up from sedation.  Since her surgery 3 months ago, she grew 1.5 inches and gained 2 pounds.  Pretty amazing considering it took her 9 months to gain 2 pounds before surgery!

 I feel like a huge weight is lifted off my shoulder after today's news.  I am so proud of Meghan.  And I'm so proud of Luke for being so caring for his sister.  For a 7 year old, he has seen his little sister go through more than any brother should see his sister go through.  Luke is a rough n tough boy who picks on his sister as much as he can - BUT...he cries with her when she hurts - he cheers her on when she reaches a milestone - he holds her hand when she is sick - teaches her sign language so they can "talk".  Bless his heart.  He got up extra early this morning just to hug Meghan before we left for the cities and to tell her good luck today. 

On top of all of this...Meghan has started signing "I love you" to us.  I can't hear her sweet voice say those 3 awesome words quite yet, but I can watch her sign it to us and feel the love from her. 

Tonight, I just feel amazingly blessed!

Where does the time go?  This is the last week of school for Luke.  I can't believe I will have a 2nd grader!!  To celebrate the end of his school year, Jeff and I are taking him to Mankato to his favorite place to eat - just the 3 of us.  He could use some one on one time!

Finally, we got some good news!  The urologist looked at Meghan's ultra sound images and he feels that it is not necessary to do the VCUG on Meghan right now!!  He said since her urinalysis came back negative, she hasn't had any UTI's yet and since the fluid on her right kidney is mild, there is no need to put her through the procedure yet.  He gave us a list of symptoms to watch for.  If she develops any symptoms, gets a UTI or if the fluid increases in the kidney, she would need to have the procedure.  So, for now, she will have her next ultra sound in July and we will meet with the urologist afterwards to review the images and talk about a long term care plan.  I am just so happy that she is in the clear for now!!  Meghan is doing super in PT/OT and speech.  She will get a little break during the summer months.  Instead of having therapy 8 times a month, she will go down to 4 times a month as the therapists run on a summer schedule - lucky them!  She is doing excellent with feeding herself and is close to mastering the scooping motion.  We are still working on stabbing food with the fork.  She has also mastered throwing a ball overhand and kicking a ball.  We are working on placing shapes in a shape sorter.  This is a little trickier for her, but she can do it.  She has the patience to work on placing a shape in the correct spot, but has trouble manipulating the object to fit into the correct spot.  She is walking great with her lift in her shoe.  Her gait improves when she walks with the lift...her gait isn't as wide and her legs have a forward pattern.  When she doesn't walk with the lift, her gait is a little wider and she swings her legs out and then forward.  The lift is definitely helping!  She has also mastered 6 signs and we can introduce another group of signs.  In a couple weeks, we will introduce a picture board to Meghan.  The ST took pictures of common things Meghan requests during the day.  She will print out the pics and will laminate them and place them on a Velcro board.  The idea is for Meghan to go to the board, take the picture of what she wants and bring the picture to us so we can get it for her.   She is beginning to use her tongue and mouth to form "words" instead of only using the back of her throat, so this is a sign of progress!  Still no new words, but it's a good sign that she is starting to use her tongue and mouth when babbling!  Words will follow soon! 

Upcoming appointments - Meghan's pre op this Wedensday (this is because she will be sedated for MRI) and her 3 month post op MRI on Thursday.  We will meet with the neurosurgeon that afternoon for MRI results.  Then on June 4 is her Geneticist appointment.  A couple weeks after that, Luke has his pre op for his tonsillectomy and will have his tonsils and adenoids removed on June 20.  Meghan will have an abdominal ultra sound in July and will meet with the Urologist afterwards.  Then, fingers crossed, we will get a little break from doctors for a while :)

It has been a busy couple of weeks at our house!  Between speech, PT, OT, doctor appointments, baseball practices and meetings, life has been hectic but that's okay!  The weather is finally cooperating and we have been able to get back outside and enjoy the fresh air!!

Meghan was supposed to have her 3 month post op brain and spine MRI tomorrow, but that has been rescheduled for May 23.  I'm so anxious to see post op results!

We  have a little more information about Meghan's kidney.  She had a urinalysis last Friday which came back good - they were looking for an infection or blood.  Neither were present so that is great news!  It has been suggested that the next step is for Meghan to have a VCUG (Voiding Cystourethrogram) which checks for problems in the structure or function of the urinary system. It can evaluate the bladder's size and shape and look for abnormalities, such as a blockage.  However, until we talk to a urologist we aren't 100% sure this will absolutely need to be done.  We are hoping this will not be necessary as it does not sound like a fun procedure to put Meghan through.  Otherwise, it sounds like they will just monitor the kidney by routine ultra sounds every 3 months, which she will have anyways for her hemihypertrophy condition.  Right now, we are waiting to hear from a urologist on a definite next step and to get the Geneticist appointment scheduled - hopefully we can cross both of these items off of the to-do list by the end of this week.

Meghan must've been notified by someone that she is almost 2 and that when one turns 2 they need to develop an attitude :)  That is okay though - I will take her feisty attitude anyday over her being sick and no energy!


Having fun on the swing!



Meghan saying good-bye to Luke before he leaves for school