Meghan had a couple appointments yesterday.  First we met with her Geneticist.  Meghan's regular Geneticist moved out of state, so this was the first time we met with her new Geneticist.  We were pretty impressed with him and I loved that he got to her level and joked with her throughout the appointment.  It made her feel at ease.  To sum up the appointment, he is putting Meghan in the category of having an undiagnosed genetic condition.  He feels very strongly that she has a genetic condition that can tie most, or all, of her conditions together.  However, it could take years to find our answer.  She's had some genetic testing done already, which has come back with no answers so far.  But, there are other tests we can do to see if we can find our answer.  She's been tested already for Beckwith Wiedeman syndrome, which came back 80% negative.  He said there are a handful of people whose test comes back as 80% negative, but end up having BWS.  So, our first step is to completely rule out BWS, which will be done with a blood test once insurance approves the testing.  If that comes back okay, our next step is to have a fibroblast cell test done, which will be done using the cells from the skin biopsy she had done in November.  The lab that did the test on her skin biopsy froze some cells, and if we end up needing to do the fibroblast, the lab will grow new cells from the biopsy and the test will be done on the new cells.  If, after we don't have answers from that, we will have genome sequencing done.  There are 22,000 genes in our bodies and this test looks at every single gene.  However, this test is extremely expensive, so it could require the Geneticist to write a letter on behalf of Meghan as to why the test is needed, which he is on board to do.  If all of this comes back without answers, we will re-submit all of the bloodwork/cells in 5-10 years.  Science is always evolving and even if we don't get answers in the next year or two, 10 years down the road there could be a test available which could give us our answer.  He also feels that Meghan's lack of growth is probably due to her undiagnosed genetic condition, especially since growth hormone shots aren't helping her grow adequately.

Then we saw the Endocrinologist.  She agrees with the Geneticist that her lack of growth is most likely due to her unknown condition.  We just don't know how to treat her growth because we don't know what the cause is from.  She would've expected to see much more growth by now.  3 months ago Meghan was at -3.79 on the growth chart.  At yesterday's appointment, she was -4.07% behind.  She increased the GH dosage and we are going to give it another 4 months.  If in another 4 months, there still isn't adqueate growth or catch up growth, we will discontinue GH shots.  We can always try again at a later date.  We all agreed that if it isn't working, there is no need to continue giving her the shots.  She did enroll Meghan in a study that will watch her growth and will follow her on what works and what doesn't work on her.  We discussed a problem that we are running into with Meghan lately.  We have been trying the "eat what you want" approach with her.  However, this has not been a good thing at all.  Meg will over eat and will be up all night long with bad stomach pains/nausea.  Meghan just doesn't have the ability to stop eating when she is full, and over eating could cause her stomach to burst open, which would be extremely devastating.  So, we are to limit her portions so she doesn't over eat, as well as have strict set meal times, which we already have.  We are learning as we go with her food.

She was due for blood draws yesterday, which resulted in 3 failed attempts.  The nurse tried taking blood from each arm and was unsuccessful in getting any blood at all.  Her veins kept rolling.  So, we need to let her arms rest for a few days and try again to get the blood.  We need to check her AFP tumor marker.

Meghan is almost finished with her first year of preschool!  I think she will really miss going to school and it's been great to see her develop great social skills!

Three years ago yesterday, Meghan's life was literally saved when she had her brain MRI.  Finally, after almost 10 months of searching for answers, we got answers!!!  While the news was a huge relief and the biggest scare of my life at the same time, I knew she would now be okay.  I am so so so proud of Meghan's accomplishments and her will to fight each and every day.  Three years ago today, her shunt was placed and our baby got a second chance at life.  It is amazing how much happier she became after her shunt was placed.  We are very blessed!!

Holding Meghan in pre op room. 

After surgery

This is the picture that I think of when I think of Meghan's first smile.  This is the first picture of her smiling that I don't see pain in her eyes.  Thank you God for leading us to the right doctors!!



Happy Spring!  Now that winter is officially behind us, we look forward to spending a lot of time outside!

Meghan started participating in a program called Special Olympics Young Athletes.  The program meets for 1 hour every Monday night for 7 weeks.  There are 6 or 7 other kids in the program - some she knows from school.  Since she is unable to participate in contact sports, this is a wonderful program for Meghan to be involved in.  Last Monday was the first get together and Meghan had a blast!  She is excited to go back next week!

Jeff and I met with Meghan's school a couple days ago for an IEP meeting.  The meeting went great and everyone adores Meghan (who doesn't?!?!)  Gross motor and speech continue to be her biggest struggles, but she continues to progress at her own speed and there has been absolutely no regression in any area!  Cognitively, she is doing super!  She is able to count to 6 consistently and recognizes numbers 1-9.  She knows the major colors and shapes and can label them.  She knows her first and last name.  The alphabet is a little tougher for her.  She recognizes the letter M and is trying really hard to write that letter.  This school year, Meghan was in the Special Ed classroom which consisted of 6 special needs kids in the class.  For next year, we all agreed that it will be best to place Meghan in the preschool class that has 10 typical kids and up to 8 special needs kids in the same class.  She is ready for this transition cognitively.  There will be a few modifications needed for Meghan and due to Meghans size, she will have a more one-on-one para with her at school, mainly for her safety.  It is a faster paced class, so that concerns me a bit, but she will be allowed extra time to do her work. 

An issue that has come up within the last couple of months is sound sensitivity.  Meghan has always been sensitive to louder noises, but it has gotten noticeably worse recently.  It seems to be the higher pitched sounds that will bring her to instant tears, as well as sounds she has heard all her life that never bothered her before, but they do now.  Other than having her avoid hearing sounds that are sensitive to her, there isn't anything we can really do.  I do not think it is shunt related at this point.

This is still in the works, but when we will be in Maryland visiting Meghan's runner and her family, the Special Olympics torch run will be going through their city.  Meghan's runner has been in contact with an organizer for this event, and it's a big possibility that Meghan, her runner and her family, as well as Jeff, Luke and myself, will all be able to participate in the torch run!!  We are super excited about the possibility of this becoming a reality and are truly, truly blessed to have some pretty amazing supporters in our life! 

Growth hormone shots are going well for the most part.  There are still some days where she cries, but overall, it's going well!  Next doctor appointments will be in May and then I believe we will have the summer off from appointments...YAY!!!

Happy 2 year Zipperversary to my little Chiari warrior!!!!  It's hard to believe it was 2 years ago today that Meghan had her second brain surgery.  It seems like it was just yesterday.  I remember the day so clearly.  So many emotions and these anniversary dates always bring back all the emotions from surgery day.  I'm so proud of Meghan for the fight she fights.  She may be little, but she sure is fierce and she won't let anything stop her, or slow her down!  She doesn't have school on Wednesdays, so she is home with me today, which is what I need today.  We are getting lots of snuggling time in today!!

In PICU

2 weeks post op

Meghan's scar today!  Barely even noticeable, except a bald spot where hair still hasn't grown in around the scar.

This is one of my favorite pictures.  Meghan was in PICU and all she wanted was the purple Chiari Warriors bracelet on her.  She also wanted her puppy (who was able to be in the surgery room with her and got it's own wristband) next to her. 





 

 

New shirts for the Hydrocephalus walk/raising awareness are now available for ordering!  All shirt designs are the same but there are 3 different order forms - 1 for tshirts, 1 for non hooded sweatshirts and 1 for hooded sweatshirts.   I will close the orders on February 22 and will place the order that day.  If you need help ordering, let me know and I would be happy to help!  Please note that the prices listed on each order form are estimated prices based on a minimum quantity.  Prices could change depending on how many shirts are ordered.  If there are more shirts than what the minimum is, the shirt prices will go down.  $2 from each shirt sale will go towards the Team Mighty Meghan walk team donation to the Hydrocephalus Association.  The money donated to the Hydrocephalus Association will be used to fund research to find a CURE!!  If you know anyone else that is interested in ordering, pass this info on to them.  You can copy and paste the order form link by clicking on the blue 'share' down arrow towards the top of the order forms, then copy and paste the link.  As of right now, youth sizes are not available in either of the sweatshirt styles. However, if I have enough interest in youth sweatshirts, I can create an order, so be sure to let me know if you are interested in youth size sweatshirts.  Thank you for your support!

T-shirt order form:
Price based on minimum quantity of 25 orders
Estimated price $15.73 + $2.00 donation to TMM walk team = $17.73/shirt
**Youth sizes available**
https://www.customink.com/g/snd0-0016-2enz

Hooded sweatshirt order form:
Price based on minimum quantity of 10 orders
*Price is based on 10 orders, but need minimum of 6 orders to order this shirt*
Estimated price $40.19 + $2.00 donation to TMM walk team = $42.19/shirt
**Youth sizes are not available**
https://www.customink.com/g/snd0-0016-2euf

Non-hooded sweatshirt order form:
Price based on minimum quantity of 10 orders
*Price is based on 10 orders, but need minimum of 6 orders to order this shirt*
Estimated price $35.18 + $2.00 donation to TMM walk team = $37.18/shirt
**Youth sizes are not available**
https://www.customink.com/g/snd0-0016-2etp

I am a very happy Mommy!  Meghan had her first growth check up this week with her Endocrinologist since she started growth hormone therapy.  When she started GH 2.5 months ago, she weighed 20.8 pounds.  Today, she weighed 22 pounds.  To put this into perspective, Meghan has been at 20 pounds since her last surgery in February 2013!  In 2.5 months, she gained 1.5 pounds!!!  She also gained 1 centimeter in height!  I didn't think we were ever going to get her past the 20 pound mark.  The doctor would like to see a little more growth next time we see her in 4 months.  According to the growth charts, she is still -3.79% below the 0 percentile for her age.  The only concern from the appointment is that Meghan has been complaining for a few months about leg and knee pain.  She complains about pain in her right leg, which is her larger leg.  She is going to check with Meghan's Orthopedic doctor to see if she wants to see Meghan sooner than October, which is our next scheduled Ortho appointment.

Meghan also had an abdominal ultra sound.  She did super!  She even helped the ultra sound tech while she was having her scan.  She has a little more fluid in her right kidney than previous scans, and Urology was consulted, but it's not concerning enough for them to see Meghan!

I have spent the last few weeks talking to Meghan's teacher, OT and neuro about Meghan's last MRI in November.  When I got the MRI report in December, one of the findings listed on the report is that Meghan has a slipped disk in the C2/C3 area.  She also has early disk degeneration disease in that same area.  After reading the report, I talked to Meghan's OT about the findings (she is super knowledgeable and has many times helped me understand things more than doctors).  Her concern was if there should be any activity limitations and if Meghan needed some kind of stabilization and advised me to talk to her neuro.  I talked to Meg's neuro who has decided to limit some of her activity.  He doesn't want her doing any tumbling of any kind, no summer saults, jumping on big trampolines or bouncy houses, or doing any activity that would put pressure on her neck area.  No stabilization is needed at this point, but it is something that will be monitored over time.  Luckily, Meghan is very mellow and not much of a risk-taker, so we don't have too much limiting to do.  The neuro is also recommending that we have a neurophsych assessment done on Meghan.  Jeff and I have known about this for a couple months and we have decided that at this time, we do not feel this is something we need to put Meghan through.  I think a year down the road when Kindergarten gets closer, we may decide to have this done, but not right now.  Meghan's teacher and OT agree with us that it will be beneficial as Kindergarten approaches, but no need to do the assessment right now.  A neurophsych assessment is broken up into three 2 hour testing sessions.  An assessment includes tests of the child’s intelligence, academic skills, attention and concentration, learning and memory, processing speed, visual spatial perception, language skills, visual motor and fine motor skills, sensory perception, executive functioning (such as planning, organization, initiating and inhibiting behaviors) and emotional functioning.  A pediatric neuropsychologist interprets the pattern of results in the context of the child’s developmental stage, their current setting and the child’s medical history.  An intervention plan is developed to support the development of skills and/or how to use the child’s strengths.  Why would an assessment be beneficial for Meghan?  It would give us a description of her strengths and weaknesses, give suggestions on what we can do to help her, give us recommendations for educational programming, and help us know what is fair to expect from Meghan at this point in time and suggest further therapy if needed.

 

Some good news is that the biopsy from November is normal!  We will meet with the Geneticist in 4 months.

We will have a team IEP meeting end of Feb/early March to discuss schooling next year.  I am hoping we can transition Meghan into the preschool class that has typical kids and special needs kids combined so we can ready her more for Kindergarten.


Meghan helping the tech while having an ultra sound

FINALLY!!  This sweetie has officially gotten past 20 pounds!!!

 

Happy New Year!  2014 was a great year for our Mighty Meghan!  It was the first year since she was born that didn't consist of a hospital stay!  It was also the healthiest year she has had since birth!  Woohoo!!!  We hope to have another great year in 2015!

Meghan is getting much better with taking her growth hormone shots.  She doesn't cry as much when she is given her shot!  We will have a check up with her Endocrinologist in a couple weeks to see how she is doing and to see if she has grown at all since starting growth hormone.  We have already been told not to expect to see much growth at the first check up, but we will see! 

We are very excited for this summer! On Christmas Day, we surprised Meghan's runner and told her that we booked tickets to fly to Maryland to visit them in early June!  We are excited to have this opportunity to visit Jenn and Ryan again and to meet their 2 adorable little boys!  While we are in Maryland, we are going to try to meet up with a family who has a little girl with Hydrocephalus.  The Mom of the little girl and I have been friends since Meghan was diagnosed. 

Otherwise, there isn't a whole lot going on with her right now, which we are very thankful for.  We - like everyone else - are doing our best to dodge the influenza bug that is going around right now.  It seems to be everywhere.

The annual Hydrocephalus Association - Minnesota walk will be held on Sunday, September 20th, so mark your calendars if you would like to join our team and walk for a cure!  I will post more information as soon as it becomes available!