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!