Meghan is resting as comfortably as possible in PICU right now.  Sounds like she will be in PICU for 48 hours (she'll be moved to regular room after PICU), but that depends on Meghan.  It's too early to tell right now as she's still pretty drugged up from anesthesia.  Tomorrow will most likely be a little different story.  But, for now, she's been sleeping okay.  She is on pain meds for the pain and steroids for swelling and headaches.  The hardest part is when she wakes up she holds out her arms to be picked up and we were told she cant be held for 48 hours.  She needs to stay at a 45 degree angle in bed for 48 hours.  The biggest concern is vomiting the first 1-3 days.  So far, she hasn't vomited (knock on wood).  Meghan did require a little oxygen tonight for a short period of time.  She had a little rough patch around 10pm but is sleeping now.  Jeff and I are taking 2 hour shifts for the next few nights so someone is always up with her.  Will update more tomorrow.

We can finally breathe a sigh of relief that Meghan stayed healthy enough for surgery.  We arrived around 7am, had blood taken around 7:30 and went to preop at 8am.  We then waited for what seemed like eternity for Dr. Petronio to arrive.  Meghan was a trooper while we waited and thank goodness Grandma Linda brough her deck of cards...that was a life saver!  Dr. Petronio arrived a little before noon and they took her for surgery around noon.  They will remove a portion of her skull, open the dura and remove a portion of the C1 vertebrae.  At this point, surgery has not officially started.  I will update as we know more.  PLEASE keep her in your prayers!!!



Pre-op playing with the nurses blood pressure cuff



Meghan's puppy has a nametag just like Meghan :)

We have had a very hard worker on our hands these last few weeks!  Meghan has been able to cross off several items on her to-do list (therapy goals)!  She's accomplished feeding herself with silverware (and doesn't always need to use her special utensils), she can stack 2 large objects on top of each other, climb onto her toddler bed, hold a book with both hands and turn pages with her thumb, says hi baba (baby) and hi papa (puppy) AAAAANNND...when I have to leave the house she holds out her arms for a hug instead of crying (woohoo!!!!)!  This all makes for very proud parents!  She has also developed a HUGE love for Molly and puppies.  Molly is the first thing she wants every time she wakes up. 

Meghan has been in therapy for almost a year.  The plan is to meet with the therapists and an official from the school district the week after surgery while we're at home recovering with Meghan.  We'll review Meghan's goals from the past 12 months and write new goals for the next 12 months.  There has been talk of adding speech therapy to her plan.  IF that gets added, she will not start that until the fall.  BUT, there is a possibility that her speech will improve after surgery so I am not too concerned about speech at this point.

Meghan has a hydro friend that is need of prayers!  This little girl is almost 2 years old and has hydrocephalus like Meghan.  She had a couple big seizures on Sunday evening and was flown to a hospital that can handle her needs.  Her seizures stopped, but she spiked high fevers several times and the family still doesn't have answers.  They checked her shunt and everything looked good with no infections present.  She is doing better, but still needs prayers.

"Think positive."  I will admit - for the last 10 months, every time someone told me to think positive, I wanted to scream (okay, I actually wanted to slap them)!  From the day Meghan was born, I watched her go through more than anyone should ever have to go through in their lifetime.  I've been upset at God for chosing her to go through so much.  I've been upset at the world for people not understanding her conditions.  I've had a negative attitude, not because I felt burdened by the extra attention Meghan needs, but because I just couldn't understand why her.  However, my attitude suddenly changed last week.  I was watching the nightly news and they were reporting about a little boy that was taken hostage by a man after he shot the little boy's bus driver.  They reported on the news that this hostage situation was going on day 4.  As I was watching the story, Meghan was sitting right next to me giggling and playing with her toys.  I couldn't help but get teary eyed.  It hit me that my little girl, while she goes through daily struggles and has health conditions that she will have the rest of her life, is physically here with us.  I can see her smile.  Hear her laugh.  Watch her sleep.  Dry her tears.  That poor little boy's family is worried sick about their precious little child who isn't with them.  They haven't been able to hold him, tell him they love him, watch him play, hear him laugh - in many days.  My heart aches for the little boy.  He doesn't have his mommy to wipe his tears, or to hold him and tell him everthing will be okay.  This story put everything into perspective for me.  Meghan's issues suddenly became SO tiny compared to all of the families out there that do not have their child to hold and comfort each day.  Or for the families that know their child has a terminal illness.  We make our own happiness.  If we constantly have negative attitudes, we will live a negative life.  I don't want to live the rest of my life with a negative attitude.  So, my head is held a little higher now and I've stopped wondering why and stopped getting consumed in all of the negative articles about Meghan's conditions.  I starting moving forward and am ready for anything life throws our way.  We are strong and will get through everything.  There might be hills and valleys, but we'll stay positive through it all and enjoy every single second with all of our amazing children and will count our blessings each and every night. 

I am finally playing catch up and I was able to download pictures of Meghan's MRI images and Meghan's Dora pillowcase.  I thought it would be interesting for others to see what is going on inside of Meghan's body.  I will do my best to explain the images.

This image is of Meghan's spine from October.  There is a very small syrinx that is starting to form on the cervical area (top of spine) of the spinal cord.  Syrinx's that are formed due to Chiari Malformation are typically in this area.  The cervical area of the spinal cord controls neck muscles, diaphram, shoulder, wrists, triceps and fingers.  Meghan also has a larger syrinx in the thoracic area (lower spine) of the spinal cord.  Syrinx's that are in this area can be from Chiari, but are typically due to Tethered Cord.  If, after surgery, the syrinx in the thoracic area does not decrease in size, she will need to have her cord released.  The thoracic area of the spinal cord controls hand, trunk and abdominal muscles.

This is a better look at her syrinx on lower spine.

This is her brain MRI from October.  The area in the green circle is her cerebellum (brain) herniation which is being pushed out of the bottom of her skull and onto her spinal cord.  You can see where the herniation is next to the spinal cord that it is very crowded (tight), which is causing blockage of cerebral spinal fluid.  The blockage of CSF is causing her syrinxes.  It is very important to have the syrinxes decrease in size - or better yet - completely diminish as the syrinxes can cause permanent nerve damage, and scoliosis.  This is a HUGE reason for her surgery.  If you look a couple inches below the herniation you can also see the syrinx that is beginning to form - it is black in this image instead of white like the images above (this was a different kind of MR image than the spinal images - hence the color difference of the syrinx).

Here is little Meggers and her Dora the Explorer pillowcase!  She loves it and she especially loves cuddling with it.  Thank you to Pillowcases for Patients for donating this pillowcase to Meghan so she has something extra special while she's recovering in the hospital and at home.

In a previous post, I mentioned that a teacher at Luke's school contacted me about her having Chiari.  We have been chatting with each other, and she also has a 4 year old nephew that has Chiari...and they live in New Ulm!!!!  I will be contacting the little boy's mother to get us all together to meet.  I can't even explain how humbled I am knowing we are not alone in this community...I don't feel like we live such a foreign life anymore!  It will be great for Meghan to have a friend who has one of the same conditions as she has, too!  And it be will great for Jeff and I to be able to have another couple to talk with who knows what we go through.

Meghan has had really good therapy sessions these last few weeks.  She no longer cries when they come (yay!!!). 

We have been hibernating this week as it's WAY too cold to go outside. 





All has been quiet around here lately, which has been a nice change of pace.  Meghan is feeling good, Luke is back to school (and talking non stop about ice fishing) and daycare has resumed.  However, Jeff caught Meghan's bug last Wednesday.  He is feeling a little better, but he still isn't 100% himself yet. 

Meghan resumed PT and OT last Wednesday.  The girls were very impressed with the improvements Meghan made over Christmas break!  She is now able to get to the standing position all on her own and doesn't need to hold onto someone or an object to stand.  She has also mastered placing an object in a container and turning pages in a book.  Some areas we are still working on is feeding herself with silverware (still a huge struggle), stacking objects, pulling objects apart (Lego's or velcroed toys).  They started doing sensory testing and will do some more testing this Wednesday.  Sensory processing refers to the way the nervous system receives messages from the senses and turns them into appropriate motor and behavioral responses.  I will update when I know more on how she scores.  They also said it's time for Meghan to wear either SMO's or AFO's.  SMO's are shorter braces that come up above the ankle and AFO's are taller braces that come to the calf muscle.  Meghan curls her toes under and also curls both of her feet inward.  Braces will also help with her low muscle tone in her ankles.  We will meet with a physical therapist and orthopedist in February while at Childrens regarding this.

Meghan received her beautiful Dora pillowcase which was donated to her from Pillowcases for Patients.  I will post a picture of Meghan with her pillowcase soon!

Luke wore his Chiari shirt to school recently and I was contacted by one of the teachers at his school.  She said she noticed Luke's shirt and asked him about it.  She said that she has Chiari and was decompressed in 2001 (if I remember correctly).  She said she wanted to contact me so I could talk to someone who has this and ask her any questions I had.  I couldn't believe it!  It is so nice knowing someone else in the community goes through the same thing as Meghan. 

Meghan would like you all to keep her great uncle Gary (Jeff's uncle) and his family in your thoughts and prayers.  He was in a farming accident on Thursday and got his leg caught in a sweeping auger.  He's had a couple surgeries already and has more to go through.  BUT --- there is a 95% chance that his leg will be saved!  We are told that he is in very good spirits and has his sense of humor, which is great to hear!  We're praying for you Gary!!

Surgery has been rescheduled for Monday, February 18th.  We have to arrive at 7:30am for lab work, then head over to OR at 9:30.  Surgery will start at 11:30am.  Surgery time is roughly 4.5 hours long.  We are really hoping there are no more set backs for surgery this time.

We have decided to place another shirt order.  If you, or someone you know, is interested in ordering a tshirt or sweatshirt, please call me (507-276-4311) or Jeff (507-276-2352).  Or, you can email me with the information (jennasuess@comcast.net).  We are looking at placing the order in early February.  Also, if anyone is in need of more wristbands, let us know and we can get them to you.

Meghan is getting better as each day passes.  Her fever broke on Wednesday night.  It's great seeing her play and laugh again.  The flu has been terribly bad in this area.  I don't remember it being this bad!