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!