Meghan has been such a jabber box lately!  She not only cracks us up, but she cracks herself up, too!  She will tell quite the story - just wish I knew what she was saying!!  A few weeks ago she started to mimic some sounds we make and we are working on learning to blow (out of a straw, blow a cottonball etc).  She's working on it!!  She hasn't said any new words and we are still at the 7-8 word vocabulary.  She now knows about 20 different signs.  Here's a little video of her showing off the signs she knows.  She has an audience of some of the daycare kids so she doesn't do some of the signs like she should and she is being a little silly :)  The video displays small, so if you want a larger view, on the bottom right - next to the youtube logo, click full screen and it will do a larger view :)

 

 

Next Wednesday we go to the cities for a busy day of appointments.  She will start the day with PT and OT and we will then go to Children's for her ultra sound, blood draw, and urologist appointment.  Then, hopefully we can go to Gillette's to have her fitted for a new shoe lift.

A few weeks ago, Jeff and I made a decision we have been contemplating about doing for a year.  We have changed Meghan's primary doctor.  She will now be seen by a pediatrician in Mankato.  It was a hard decision to make, but one that was necessary.  Since she will be having routine ultra sounds and AFP tests every 3 months to scan for stomach and kidney tumors, we needed a medical facility - preferably closer than the cities - that is knowledgeable enough to know what to look for during these procedures.  My mommy gut just doesn't have the trust in our hometown clinic to do these.  We met with the new ped and discussed Meghan's different conditions.  She works closely with a couple of Meghan's specialists in the Cities, which is a good feeling. 

We still don't have any news on the chromosome tests :(  This momma is getting very anxious to find out the results so hopefully we hear something soon!!

Therapy is going very well!  Meghan can now take steps down stairs.  Not on her own, but she can DO IT with support - which is great!  I got an unexpected call from her speech therapist (who is supposed to be off during the summer) a couple weeks ago.  The school district talked her into working with a few kids during the summer since they were having a hard time finding someone to fill in for her during the summer.  I am super happy she is working with Meghan during the summer, but sad for her that she isn't able to enjoy her time off this summer.  We are looking into getting an iPad for Meghan to help with her speech and cause and effect.  Meghan is starting to mimic some sounds we make!  While her progress is slow, it's still progress and we are so super proud of all the progress she makes and all of the hard work she does every single day.  The bond we have made with her 3 therapists is awesome - they are like family to us.  It's amazing how God places just the right people in your lives when you need it the most.  I remember when Meghan was first evaluated for therapy - before we had any diagnosis' for Meghan - the PT and OT girls picked up on some red flags with Meghan (wouldn't look up, clenched fists with thumb tucked in).  These red flags were indicators of neurological issues and I'm so happy we are blessed with therapists who know what to watch for.

Meghan has taken a couple big falls the last few weeks - resulting in a small chipped front tooth, split lip in 2 different spots and a bruised forehead on right side.  It's so heart breaking watching all of this happen :(  We try so hard to make her life as easy as possible and we are so afraid that one day she will take a bad enough fall to do damage.  She doesn't have the best reflexes, or upper body strength, so when she falls, she isn't always able to catch herself, which results in her landing on her head :(  Most of the falls happen when she is walking on concrete :(  I talked to her therapists about this issue today.  They suggested it could be due to depth perception issue which I agree with.  She said to someone with altered depth perception, concrete becomes invisible after a while because it's too monotonous and blends in.  In grass, she can see different lengths of grass so she is able to visualize it's there.  She suggested using colored chalk to color the sidewalk with different colors to see if that helps Meghan be able to visualize the depth of what is under her.  Might sound silly - but makes sense to me.  She suggested a closed toe sandal as well.  We purchased a pair of closed toe sandals tonight and tomorrow, the daycare kids are set to color the sidewalk til their little hearts content :)

We are getting a nice break from doctor appointments for a while!  We will go to the cities early August for ultra sound, AFP test and meet with the urologist (regarding Meghan's Hydronephrosis) to make a treatment plan.  Then we'll have a break again, but will be hit hard in October/November when we are back in the cities for Neuro, orthopedic, genetics and ultra sound/AFP appointments throughout those months.  So we are completely enjoying our nice break right now!!

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