September is a BIG month for our little lady!!  The month of September is Hydrocephalus awareness & Chiari Malformation awareness month AND September 15-21 is Growth awareness week.  We walked to raise awareness of Hydrocephalus on September 7th.  Our team, Team Mighty Meghan, had 19 walkers and we raised $800 as a team, and all of the Minnesota teams combined raised $55,684 (to date)!!!  All of the money raised goes towards research to find a cure.  This was our 2nd year walking to support our Mighty Meghan, and everyone else affected with Hydrocephalus.  A huge thank you to those to walked, donated, or both!  We are forever grateful for your support! 

Meghan started Pre-school on September 2nd.  AHHHH!!  It's so crazy that my baby is in school!  There were some big tears the first time she rode the bus, but otherwise she seems to really like school!  There are 6 kids in her class.  She has a bus buddy, Wyatt.  She has OT/PT once a week and speech twice a week, while at school.  Her speech is really coming around!!!  Since school, she has learned the words me & you.

We've always known that because of Meg's neurological conditions, she has a higher risk of having a seizure than typical people.  She had her first seizure the evening of September 12.  She had a febrile seizure, lasting between 8-10 minutes, which was caused by a sudden spike in her temperature.  It was a very scary night for Jeff and I, and it was hard to see what a seizure does to a person.  It took her a while to fully recover from it.  I spoke with neurology, and because of Meghan having this seizure, they are moving up her MRI to be done as soon as possible.  At this point, a shunt malfunction is not a concern because she is not running a fever, irritable, vomiting, or hard to wake up.  They would also like Meghan to have an EEG to look for seizure activity.  Most likely, she will have a 1 hour EEG done.  She will be prescribed Diastat (a rescue medication) incase of another seizure.  The EEG and MRI/skin biopsy have not been scheduled as of yet, but should get scheduled this week. 

Finally...we got GOOD news!  This past Wednesday, Meghan had a full day of appointments which included 3 urology procedures followed by an appointment with the urologist for results.  The good news is that there is no bad news :)...except that the poor girl had to endure several hours of not-so-fun procedures.  But, atleast now we have solid answers.  Meghan has increased fluid in her kidney's because...plain and simple...that is how God chose to make her :)  There is no blockage or reflux.  Woohoo!  The Urologist basically said that since there is no medical reason for the extra fluid, he does not need to see Meghan again unless she would start having urinary tract infections, or if more bladder/kidney issues are seen on her future ultra sounds.  This is very awesome news to us!

 Meghan got to decorate her gas mask with princess stickers

Thank goodness she was able to eat during this test!

What else do you do while trying to keep a little one occupied during 5 hours of testing? 

Take a selfy :)

 

 

 

Happy Fourth of July!!!

Last Tuesday was Meghan's last day of speech therapy, and Wednesday was her last day of PT/OT until she begins preschool in September.  They were very bittersweet days!  It is SO different not having the therapists coming to our house twice a week! We sure do miss them!  I forgot to take a picture of Meghan with her speech therapist, but remembered to take a picture of the PT/OT ladies. We made Meghan's therapists a little thank you gift.

We got results from Meghan's growth hormone stim test.  Meghan had 7 blood draws to measure how much growth hormone her pituitary gland produces.  Meghan's results were: 2.9, 1.5, 1.5, 5.6, 3.9, 3.2 and 6.2 ng/ml.  In order for her Endo doctor to officially diagnose someone as having true growth hormone deficiency, the peak number needs to be 5.0 ng/ml or under.  Meghan's peak number was 6.2.  Normal is 10.0 ng/ml and up.  What her numbers show us is that growth hormone is being produced, but at a pretty low amount; hense Meghan's growth issues.  Since Meghan's peak number was 6.2, which is a low number, she does qualify to receive growth hormone shots.  We are going to wait until August and we will meet with the Endo.  At that appointment, she will evaluate Meghan and we will discuss treatment to make sure we are all in agreement.  She sent us information to read about hormone therapy that she would like us to read before we meet in August.  There are definite pros and cons to GH therapy!  If we all agree to try hormone therapy, we will do a one year trial first.  If her body accepts the growth hormone and she grows, we will continue for 10 years.  If her body does not accept the growth hormone, we will stop.  I am glad that we have answers on her suboptimal growth.

Miss Meghan had her 3 year pictures taken a couple weeks ago.  Here are some of her super adorable pictures.  Her brothers even got to join in on the fun!! I just looooove the sparkles in her eyes!!!

Still no news from last week's tests.  I am going to wait another week and if we still haven't heard anything, I will call in and see if the results are back.

The Urology tests will be done on July 2.  This was the earliest we could get all 3 tests done AND meet with the urologist after the tests all on the same day.  Meghan will be slightly sedated due to her having to have a catheter placed.  As a parent, I do not want any new findings....BUT, I am feeling really bad having to put her through these tests, so I am just really crossing my fingers that they are able to find something so we don't put her through all of this for nothing. 

We are again signed up to walk in the Hydrocephalus Minnesota walk.  The walk will be on Sunday, September 7, and it will be held at Mall of America.  The walk will be on the first floor of the mall.  Registration and check in is from 7-8am, opening ceremony is at 8am and the walk will be from 8:15 - 9:30am.  If you would like to join our team and walk - OR - if you are unable to walk but would like to donate, follow these directions:
- log onto www.hydroassoc.org
- hover your mouse over the WALK tab towards the top of the main page
- Click on 2014 walk events
- Scroll down until you see the MN walk for September 7.  Click on the link for Minnesota-Twin Cities
- On the right side of the screen, click on Team Mighty Meghan
- On the right side of the screen, click on the JOIN NOW button
-Follow the registration process
**Each member of your family will need to be registered seperately to walk.
**There have been A LOT of issues with the hydroassoc.org website lately, so please be patient if it takes a couple of tries to register or donate.
**I can place another clothing order, so let me know if you or someone in your family is in need of more Team Meghan clothing!  We also have a lot of bracelets left, so let me know if you need any!
We look forward to walking again this year!

Meghan had her growth hormone stimulation test done a couple days ago.  From start to finish, including IV set up, and placement, we were there for 5 hours.  The test involved 7 different blood draws to monitor her growth hormone level, one oral med in the beginning to get her pituitary gland jump started since it doesn't produce much growth hormone during the day, and then another med through the IV about 1/2 way through the test.  Overall, Meghan did super!  The child life specialist brought in an Ipad to keep Meghan distracted while the nurses placed the IV.  She did great until the needle poked through, then the tears flowed.  The hardest part was keeping Meghan distracted since she couldn't eat from midnight before the test until the test was complete - which was around noon.  She fell asleep for about an hour and even slept through an entire blood draw and IV med change.  We don't have any results yet.  Hopefully by the end of the week.



Snuggled in with Mom, finally getting some much needed rest!!

Enjoying some ice cream after finishing the test!!

Meghan had a routine abdominal ultra sound a few weeks ago.  I got a call from genetics last week saying that her Hydronephrosis (fluid in kidney's) is more severe and that we need to schedule an appointment with her urologist.  With Hydronephrosis, there are Grades 0-4.  Grades 0-2 is considered mild, Grade 3 is moderate and Grade 4 is severe.  Meghan has always been at Grade 1.  The last couple of ultra sounds the fluid has increased and she is now at Grade 2.  Given the fluid increases over the last couple of ultra sounds, the urologist would like to do a series of tests to see if we can get answers as to why urine is collecting in her kidneys.  There is a blockage somewhere - just need to figure out where, and if we find the blockage, what the next step would be to correct the blockage.  So, our next step is to have 3 different tests performed - 1. Urodynamics  2. Renogram      3. VCUG  All 3 tests will be done on the same day and will require her to be cathed and have an IV.  Depending on how she tolerates being cathed, she may be slightly sedated so the tests can be performed.  We will schedule the appointment as a sedation procedure, as it's a good possibility that Meghan will need to be sedated in order to be cathed.

The very best news of all lately is that Meghan's runner and her husband just booked a flight to meet Meghan in November!!!  Jenn and her family live in Maryland.  It will be so awesome to have the two meet in person and Jeff and I are excited to meet them, too!  Meghan and Jenn have quite the bond.  November can't come soon enough and we are so fortunate to be able to have this opportunity!

Meghan has 2 more weeks of therapy and then she will graduate from the birth - 3 early intervention program.  It will definitely be a bittersweet day!

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