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!

Today turned into the day I have dreaded for the last 3 months.  We have been trying so hard for the last 3 weeks to keep Meghan healthy for surgery.  We have not taken her out of the house for over 2 weeks, she's been on a vitamin for the last 3 weeks and she just got off an antibiotic one week ago.  We have all been washing our hands and sanitizing everything like crazy.  But, as Meghans luck would have it, she woke up ill last night at 11pm.  The poor girl cried most of the night and developed a fever at 4am.  She had her pre op this morning at 10am.  Before her doctor would clear her for surgery, he wanted to test her for the flu, strept and do a WBC blood test.  I thought she just had an ear infection.  Her ears turned out perfectly fine.  Meghans doctor called this afternoon to tell us she tested positive for Influenza A and that she's contagious for the next 5 days and surgery had to be postponed.  We do not know when surgery will be rescheduled for as of yet.  Hopefully we will find out Wednesday or Thursday.  I have told myself many times, and people constantly tell me that everything happens for a reason.  I am really struggling trying to figure out why all of this happens to my little girl.  I know it could be so much worse, but she just can't seem to catch a break from being sick.  It seems like the more I try to keep her healthy, the more she gets sick.  I would give anything to take this all away for her. 

I have to say a HUGE thank you to Jeff's dad.  He has been staying with us for the last 5 days and he has taken care of most of the "to do" items on our list.  We even got him to paint Meghan's room for her.  It turned out great!!! 

This year has been such a rollercoaster ride for us.  We've had many ups and downs.  I will never forget this year, but I am so ready to put 2012 behind us and move on to 2013 to see what this year has in store for us.  I have to believe it can only get better.  Through it all, we couldn't keep going without the love and support of our amazing family and friends - so thank you all for the many thoughts, prayers, emails, phone calls, texts.  We hope you all have a very blessed New Year!!

Merry Christmas!

We would like to wish you all a very Merry Christmas from our family to yours!  We hope you all remember the reason for this day, and take time to remember Jesus' birthday.  Happy Birthday Jesus!

Here are some pictures taken of the kids throughout the holiday get togethers.  Enjoy!

This is one of my favorite pictures of the kids!  It's like they're saying "alright!  we got one by mom...high five!!" 

Meghan (18 months), Lucas (7 years) and Colin (15 years)
Christmas 2012

They both look REAL thrilled ;)

Outta my way mom...I'm headed towards the deserts!!!

Meghan's new cupcake kitchen from Grandma Marcia.  This is just her size!!!

:) 

Some of you have tried leaving comments on the blogs.  I am not sure why you aren't able to leave comments as I have the blog set that anyone can comment.  But for some reason, you have to create a username and password to leave a comment.  All you need to do is type your comment, hit publish and then you will be asked to create a username and password.  Once you do that, your comment will post.  For those of you with a smart phone, I believe you can just use your gmail ID and password.  Or, if you prefer not to create a username/password, type your comment, then under the comment box, choose "anonymous" from the drop down box.

Merry Christmas everyone!!!

The countdown is on and Meghan will be having surgery in 13 days.  Wow.  13 days.  I can remember the time where we had 3 months to go.  The surgery date is approaching too quickly.  I find myself many times lately second guessing myself if surgery is necessary.  Then I remember she has a secondary condition, syrinx (syringomyelia), and blocked CSF flow - along with other symptoms -  and I come back to reality and remember it is necessary.  I hope and pray that Meghan comes out of surgery as the same cuddly, helpful, giggly little girl that went into surgery.

In this season of giving, I wanted to share a couple places that are near and dear to our hearts.  The first is Childrens Hospital.  Obviously, this is very dear to us as this is the place that finally found what was causing Meghan to have a rough life.  If you would like to donate to Childrens Hospital, please go to: https://giving.childrensmn.org/donate

The second is called Pillowcases for Patients.  I urge you to go to the facebook page, Pillowcases for Patients, to see first hand the amazing person who runs Pillowcases for Patients.  Her name is Erin Kirby and she is just 15 years old.  She was involved in a car accident in 2011, causing her a TBI.  She was hospitalized and knows first hand how much being hospitalized stinks.  She wants to brighten the days of young patients in the hospital, so she makes personalized pillowcases.  She relies solely on donations.  She is donating a pillowcase to Meghan, so Meghan will have her very own Dora the Explorer pillowcase.  If you would like to donate, please send your donations to:  Pillowcases for Patients- PO Box 346- Oregon City, OR 97045.  I think this young lady is just incredible and the world could surely use more people like her!

Update on Meghan.  Meghan and I were very sad to have to miss Jeff's family Christmas last Saturday in Iowa.  We were looking forward to getting out of the house for the day.  Meghan wasn't 100% yet so we decided it was best if I stayed home with her while the boys went to Iowa as planned.  They had a great time.  Hopefully we'll be able to join everyone next year again.  On Wednesday, Meghan had her last physical therapy session until she is well enough from surgery to continue sessions again.   I love those girls. It was a tearful session as they have become family to us.  They are going to stop over to visit Meghan after we get home, and read her a book or two.  I received the MRI images, radiologist reports and the Neurosurgeon notes from appointments from July and October in the mail today.  I find it very interesting to read all of the reports and learn the medical language.  I am learning so much as we go through this adventure.  I didn't find too many surprising news that we weren't made aware of, but her radiologist report from the MRI in October stated the brain herniation extends down to mid-level of the  C2 vertebrae.  The report from July's MRI stated top of C1 vertebrae, so the herniation did worsen from July to October.  Because it extends to the 2nd vertebrae I think Meghan will have her top 2 vertebrae's removed, but won't know foresure until post surgery.  As soon as I can figure out how to do this, I will post an MRI picture of Meghan's Chiari and post a picture of a "normal" brain.  Then you will be able to visualize what Chiari Malformation is.  I took Meghan back to the doctor on Thursday to recheck her ears and throat.  She still digs in her ears often, and she has decided since Wednesday not to eat very well.  She will eat a few bites at each meal, but thats it.  Her ears and throat were clear so atleast I know the antibiotic is working.  As for not eatting, we will have to keep an eye on that.

Please keep Meghan in your thoughts and prayers in these days leading up to surgery.  We are saying many prayers that she stays healthy enough for surgery.   

Have a wonderful weekend!

TGIF!

TGIF!!  Friday is finally here!  It has been a very busy week, so I am very much looking forward to this weekend.  Although we have a busy weekend planned as well, but atleast we all get a break from working.

Well, little Meggers has had somewhat of a rough week.  It started on Tuesday evening when we were on our way to Mankato to pick up our shirt order.  Meghan started getting restless in her seat.  I went to the back seat to try to comfort her, but that did not help.  Then, she started throwing up.  We quickly picked up our order and headed home.  After her episode, she clonked out and slept til we got home.  I gave her a bath and Jeff cleaned the car seat.  After her bath I gave her some toast and she didn't have anymore issues.  Late Wednesday afternoon she developed a fever, but nothing else.  She was very clingy by the end of the night.  Thursday morning she woke up crying so I waited 15 minutes to check her temp was 101.9 so Jeff took her to the doctor.  Both of her ears were red and inflamed, along with her throat being red, so her Dr. put her on antibiotics and is treating her for ear infection.  She has had many coughing spells at night this week as well.  I thought she'd be doing better today, but she still has a temp of 100.5 and has no desire to play or be away from mom.  She is congested in her chest.  I sure wish she'd get a break soon.  I hope she turns the corner soon as we are supposed to leave for Iowa tomorrow morning for Jeff's family Christmas. 

I hope everyone is staying healthy and has a wonderful weekend!