Life has been such a roller coaster.  Just when I feel like things are starting to get back to "normal", life throws a curve ball and I'm reminded just how quick things change.  Last night, I got a call from the orthopedic doctor we took Meghan to a couple days ago.  I knew something wasn't right when the voicemail said she has a few things to talk to me about and to call her pager.  I just prayed she wasn't going to tell me they found tumors from the ultra sound she had on Tuesday.  Of course, the all too familiar...well, the good news is........but the bad news is this.......conversation was had.  The good news...no tumors!!!  The bad news is that Meghan has Hydronephrosis.  This is a collection of fluid on her right kidney.  This fluid is coming from a blockage.  I really do not know much of anything, other than the ortho dr is waiting to hear back from Meghan's primary doctor in New Ulm and she will update him with the finding and they will collaborate a plan.  She mentioned having a urine sample taken to look for infection or blood and then having the ultra sound done sooner than the 3 month mark we talked about on Tuesday.  From what I understand, this ultra sound will look for where the blockage is coming from.  She also said she talked to a geneticist about Meghan, and it sounds like she wants us to meet with the geneticist sooner than later.  I am very pleased with this ortho doctor.  From our experience, there are so many doctors who blow you off and don't take the time to listen, but this doctor is so compassionate.  It's a huge relief as a parent knowing your child is in the best of hands.  We are blessed having an awesome team of doctors.

I realized I was no longer up to date with technology when I saw Meghan operate an Ipad...and she knew how to swipe the screen :)  Meghan's speech therapist brought an Ipad to one of the sessions and Meghan got to play with a couple different speech apps on it.  It was pretty neat!  Speech is going really good and Meghan has learned a couple new signs.  We are up to 4 signs that she will consistently sign...more, eat, puppy and book.  The signs that are there, but not yet mastered are - all done and drink.  The signs she uses the most......more eat :)  Go figure ha!  That's my little chowhound!  Luke and the daycare kids love doing the signs with Meghan, too!  She hasn't spoken any new words yet, but they will come!!

Yesterday was Meghan's orthopedic appointment at Gillette's.  It was a long day, but we got some answers.  Most importantly...Meghan is officially 20 pounds!!  This is a huge milestone!  Other things we found out... as of now, Meghan doesn't need SMO's for her feet.  She has strong enough ankles which doesn't qualify her as needing the extra support from SMO's.  She said Meghan should outgrow the intoeing.  If, by the age of 8, she hasn't outgrown the intoeing, braces or corrective surgery to straighten her feet may be an option, but for now we are good and will just monitor! We did however find out that Meghan has a condition known as Hemihypertrophy.  This is a condition in which one side of the body, or a part of one side of the body, is larger in size than the other.  Basically, one side of the body grows at a faster rate than the other side.  I'm still trying to get answers on this, but children with hemihypertrophy have an increased risk of developing stomach tumors - mainly in the kidneys...not something any parent wants to hear.  BUT...most children, IF they develop tumors, develop them before the age of 8.  After the age of 8, the likelihood of developing stomach tumors drops dramatically.  So...because of this, Meghan will have ultra sounds of her abdomen every 3 months to check for tumors until she is 8 years old.  She had an ultra sound yesterday and we are waiting on results.  Back to the Hemi diagnosis.  Meghan is right sided hemi.  Meaning the right side of her body is growing faster than her left.  Her right side of her face sticks out farther than the left side of her face and is asymetrical (has been since birth), her right leg is chunkier than her left leg, and her right foot is a little bigger as well.  However, her arms do not seem to be affected.  This MIGHT just explain why her right kidney always measured larger than the left during ultra sounds when I was pregnant with her. She also has a leg length difference.  Her left leg is shorter by 5 mm...which explains why she walks with a cute little limp.  Because her left leg is shorter, she needs to wear a shoe lift in her left shoe.  The lift brings her left leg height to be equal to her right leg when she wears shoes.  She will have orthopedic checks every 6-12 months to monitor leg length difference and her feet.  If her legth difference would get to 2cm or more, she would need some kind of a quick outpatient surgery to stop the one leg from growing so the shorter leg can catch up.  She was also referred to see a Geneticist.  The nerd that I am - I am excited to meet with a geneticist...something I have wanted for a few months.  We have added orthopedic checks every 6-12 months, abdominal ultra sounds every 3 months and a Geneticist to our list, but we will do what ever it takes!  All in all, it was a very good visit!

We are so excited for warmer temps coming this weekend and finally being able to get out of the house and play outside!! 

We had a great night away celebrating Meghan's first anniversary of her shunt placement!  It was great to get away with the kids and focus on them and hearing them laugh and have a fun time.  I love the simple things in life! 

 

 

Unfortunately, Meghan has become ill yet again :(  Today is day #4 of being sick.  She's been hit pretty hard this time around....poor girl.  I wish I could trade places with her...I'd give anything to do that!  We were concerned for a while about the possibility of this illness being due to a shunt failure, but luckily it's just a viral bug.  On Wednesday, I consulted with Childrens regarding her symptoms.  They felt it was a viral illness, so they said that our first step is to have her evaluated by her primary doctor for dehydration and to see if it's just a viral bug before we bring her up for an MRI to check her shunt.  They said if she's ill due to a viral illness that we have our answer on why she's sick and they don't need to do an MRI.  She was seen on Wednesday by her PCP and he did full blood work up and strept test.  She tested negative for strept and the blood work indicates viral illness - her white blood cell count was pretty low.  Right now, we are home monitoring her with her PCP.  He called this afternoon to check on her.  So far we have avoided having her admitted for IV fluids and hopefully it stays that way!!  Today - day #4, she's kept everything down, but her energy level is very low, she eats very little and sleeps/rests most of the time.  In February, she was prescribed Zofran (anti nausea med) for car sickness.  I didn't want to give it to her when she first got sick incase her vomiting was due to shunt failure.  I didn't want the Zofran to mask any symptoms, but since its a viral bug, I decided to give her a dose of Zofran on Wednesday night.  Since that dose, she hasn't vomited.  I sure hope she turns the corner soon and gets some spunk back.  Her poor little body has gone through too much.

Her 3 month post op MRI of brain and spine has been scheduled for May 9.  She'll be sedated and the MRI should take 1.5 hours.  We're praying for the best possible news!!!  This is MRI #5 so we are getting to be pro's :)

Today marks the first anniversary of the day that Meghan was diagnosed with Hydrocephalus.  When we woke up a year ago today, we had no idea how much our life was about to change.  On this day last year, we took Meghan for an MRI of her brain to rule out any brain issues.  Little did we know, she had been suffering for the past nearly 10 months of her life because she infact had 2 brain conditions that was discovered during her MRI. What turned into the scariest day of our life was also the best day of our life as Meghan’s life was saved with her diagnosis. She was taken for her first brain surgery the next day to install a shunt for her Hydrocephalus.  Tomorrow will be her one year anniversary of her shunt being placed.  I am so proud of Meghan with all she has gone through and everything she has accomplished this past year.  We will be forever grateful for God placing the right doctors in our lives when we were so desperate to be listened to as concerned parents.  Once we were finally lead to the right doctors, everything fell into place and our little girl was able to get the relief that she deserved.

To celebrate her first “shuntversary” we are going to Chili’s in Shakopee, and then spending the night in a hotel for a fun night away with the kids.  Chili's was supposed to be our dinner stop on our way home from the MRI last year, but God had much different plans for us that day.

My sweet little girl...You have come such a long way this year and we are so very proud of you! You are the strongest little girl that I know and I wish I had just 1/4 of your strength, determination and courage.  Thank you for letting me and your daddy be your proud parents.  Thank you for being patient with us while we learn all about your conditions and learn through trial and error on what makes life easier on you.  You have taught me how to fight for answers, demand to be listened to - but most of all, you have taught me to be much more of a patient and understanding person.  I love you to the moon and back baby girl and I will always fight your fight right along with you every single step of the way.  Remember to always rock that shunt and wear it proudly :)
 



Meghan resting after having her shunt placement surgery last year 

Meghan - today!  A very happy, helpful girl!

 

Well, we managed to keep Meghan healthy for 6 weeks straight!  It was the longest amount of time she has ever stayed healthy and we enjoyed every single second of it!!  However, Meghan has hit a little rough patch lately and has been very irritable/emotional, not sleeping the best and has come and go fevers - but - it's pretty common for Meghan to run low grade fevers - especially when has sensory overload (too much activity/overdoing it).  She did end up with an ear infection, cold and cough a week ago, which is still lingering, so I think that is contributing quite a bit to the crankiness - as well as FINALLY getting a boat load of teeth.  On top of all of this, she's recently had a couple falls - hitting her head both times :(  I called Children's and spoke to Meghan's NS nurse practitioner and she reassured me as long as she isn't showing any abnormal neurological symptoms (which she isn't), she is okay.   Jeff and I know what we need to watch for - but it's more reassuring for me to hear it come from the neurosurgery staff that she's okay versus hearing it from the local doctors who I trust...mmmm....not so much.

Meghan started speech therapy.  She understands way more than she can say, so the first thing the speech therapist wants us to do is to introduce basic sign language to Meghan.  That way, she has a way of being able to communicate to us - and others.  Luke thinks it's pretty neat to teach Meghan some of the signs he's learned at school!  The first group of signs we are introducing are Mom, dad, drink, eat, puppy, I love you, all done and book.  She's signed "more" for a few months, so we have 1 sign down!  We were also given great ideas of things to work on with her each day to improve her speech.  PT/OT is going good.  For some reason, Meghan's left side is weaker than normal lately.  Her left side has always been her weaker side, but she sometimes goes out of her way to use her right side, even when using her left side would make things easier on Meghan.

We hope everyone has a wonderful Easter!  Last Easter was spent in the hospital with Meghan after she had her shunt placed, so we are looking forward to having an uneventful Easter at home this year! 

Little Meggers has officially been scanned from top to bottom.  In the last 21 months, she's had MRI's of her brain, neck, and spine - ultra sounds of stomach, kidneys, bladder and esophagus - x-rays of upper GI tract, and the newest x-rays of hips, legs and ankles.  She had her lower extremities x-rayed last week, as requested by her therapists.  The x-rays came back clear which is great!!  However, Meghan's therapists wanted x-rays of her feet as well, but the doctor didn't include the feet when he put in the order (ugh!).  The therapists wanted her hips and legs x-rayed to check for bone deformities which could be the reason why she has gait abnormalities.  They wanted her feet x-rayed since she has moderate in-toeing.  Our next adventure will bring us to Gillette Children's on April 23.  We will have a consultation regarding Meghan's feet to see if she needs to be fitted for SMO's (braces that come to ankles) or not.  St. Paul Children's - where we usually go - sent us to Gillette's as they also have a gait analysis lab if needed.  I have waited a long time to have her feet looked at by a specialist so I am anxious for this appointment.  Below is a picture of what Meghan's feet do when she stands/walks.




This is not Meghan's actual feet.  Too impossible to take a picture of her walking and not end up with a blurred pic :)

What a difference a week makes!  Meghan is walking again and is off all of the medications she was sent home on.  YAY!  Other than her neck being slightly stiff, she is pretty much back to her normal self again.  It is SO great to have my cuddly, little helper back!!  Luke is pretty thrilled to have his partner in crime back, too :) 

Since surgery, one of the first improvements I noticed was that she now sounds like she has more of an open airway - her voice sounds clear and not as raspy.  Also, one of her symptoms prior to surgery was chocking and gagging when she would eat.  She did not have these issues at every meal, but it would happen about once a week.  We are now almost 3 weeks post op and we have not had ANY chocking or gagging issues!!!  This is huge as Jeff and I would be on edge every time she ate just waiting for her to choke - thank goodness we are both certified in first aid as we have had to put our training to use with her a couple of times.  The best part since surgery......we have never seen Meghan as happy or as smiley and giggly as she has been these last couple weeks.  I think for the first time since birth, she isn't in pain (other than from surgery). 

Meghan has finally been cleared from her doctor to switch from her infant carrier to a big girl car seat that faces forward!  As of Thursday, she weighed 19.6 pounds with clothes and shoes on - so not quite at the 20 pound mark, but given her age, he okayed her to switch.  Meghan thinks it's pretty cool to see what's going on now while we're in the vehicle. Hopefully facing forward will help with her car/motion sickness, too!

Therapy resumed on Wednesday and Meghan did great.  I wasn't sure if she'd tolerate the entire hour of therapy but she did.  My mom came over to watch the daycare kids so I could sit in on therapy with Meghan.

We placed our 2nd shirt order on Wednesday!  We are definitely getting awareness out to the public!! 

I am in the process of putting together a walking team for the Hydrocephalus walk.  Unfortunately, an exact date hasn't been scheduled for the walk yet, but I am guessing it will be toward the middle of September like it has been in years past and it is held in the Cities (Fridley if I remember correctly).  If you are interested in walking with Team Meghan, or if you'd like to donate towards the team, let me know by emailing me (jennasuess@comcast.net) and I would be more than happy to get you information regarding the walk or how you can donate.  I am brainstorming fundraising ideas to raise money for Team Meghan!  The more money we raise, the closer we are to finding a cure!!