Meghan had a long day of therapy and doctor appointments today.  I had the day off so I was able to sit in on therapy...wish I could do that more often!  After therapy, we left for her doctor appointments.  I was nervous about her ultra sound - last time she did not do so well with it.  Today, she was such a trooper!  She walked right in the room when the ultra sound tech called her name and I laid her down on the table and she let the tech do what she needed to do!  No crying whatsoever!  I think we were in and out in 15 minutes!  Then we headed up to the Urologist appointment and she walked right with the nurse when we were called back!  This is pretty huge as Meghan has been very apprehensive at doctor appointments so it was great seeing her be so willing to go with the flow today! Today was the first time meeting with the Urologist and he was super!  Meghan has a little more fluid in her right kidney today than she did 4 months ago.  However, this could be because she had a fuller bladder than last time.  The severity of Hydronephrosis is graded from 1-4 with 1 being minor and 4 being severe.  Today, Meghans was still a Grade 1, but closer to being Grade 2 than she was in April.  Because Meghan has never had a UTI, he feels comfortable not doing any invasive testing right now and waiting a year to see her.  However, if she would get a UTI within the next year, we would automatically have to do a VCUG.  Although we are waiting a year to see him again, her Hydronephrosis will be monitored via ultra sound every 3 months (for a different condition) and if the fluid continues to increase, we will be back to see him.  He did let us know that because of her syrinx on spine and Hydronephrosis, she could be difficult to potty train, but time will tell!  Otherwise, everything looked good on the ultra sound images and no tumors were seen!!  I always feel relieved when I hear that!  Meghan also had the AFP test (tumor marker test) done today and we should have results by Tuesday.  We waited 9 weeks to hear results of the chromosome test, and we just so happened to get those results while we were at Childrens!  Everything came back good, but she does have a duplicated area on either the long or short arm of the X chromosome (I can't remember what the geneticist said).  From what I understand, females with a duplicated x chromosome have no other health conditions associated with the duplication.  I am happy but a little bummed that we don't have an explanation as to why Meghan has the conditions she has.  The geneticist was bummed she wasn't able to provide us with answers yet, but we will be back to see them in November and have another geneticist look at her and possibly have more in depth testing done.  She also couldn't give us an answer as to if any of Meghan's conditions will be passed down to her kids until further testing is done.  She did put in a referral for Meghan to see an Endocrinologist.  We all agreed it is time to find out if Meghan has any growth issues going on - especially since there isn't a chromosome issue affecting her growth.  She is at a stand still height and weight wise.  Meghan knows no different, but it literally breaks my heart when I see a 15 month old tower over my 26 month old.  It could very well be that Meghan has no growth issues and will just be small, but as parents, we want solid answers from professionals!!

Of course, a trip to see the doctors in the cities just wouldn't be complete without a stop at Chili's!!  We love Chili's!

Sleeping beauty after a busy day!  Tuckered out!!

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

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.