Sunday, December 21, 2008

Home at last!

Isaiah 9:6b--And He will be called Wonderful Counselor, Mighty God, Everlasting Father, Prince of Peace.

This is Lisa again . . . In my last post, I explained to you the medical details of our visit in NY. I touched on God’s goodness and the people we met along the way. In this post, I want to share with you how God was with us every step of the way. He is so good, and I promised Him I would tell you about it . . .

On Tuesday, as Mackenzie was having her radiological studies done, a sweet family walked into the imaging center. We were about to leave, so our conversation was limited to hello. Well, the next day at The Chiari Institute, there sat the same family! Will (dad, who has Chiari malformation), Claudia (mom), and Gerson (pronounced Herson, 10 year old son). We were in the same waiting room all day, and by the end of the day we shared e-mail addresses, hugs, and promises to pray for each other. God binds our hearts with other believers in ways we cannot explain; we love this family and ask you to pray for them as well. Will is going to have surgery at some point in the future—I will let you know when.

I told you already about Emmanuel coming to take Mackenzie to surgery on Thursday and how that blessed our hearts. God truly was with us every step of the way!

On Friday, the day of my last post, I told you a winter storm was bearing down on NY. We left the hotel about 10:30 am as the snow began to fall. Remember, I am driving in Long Island back to the airport! We get packed, and Willie the door man comes up to help us, even laying down on Meghan’s suitcase so he could zip it for her. He told us how he had two daughters, same ages as our girls. He was so kind. He walked us downstairs and loaded up the car. The girls had made fast friends with Willie, so they said their good-byes. He asked if he could take our picture, which he did. Then I asked if I could take his picture with the girls. I thought he would cry. He was so concerned about us driving and flying in the snow. He said he would pray and did as we drove away. God heard and answered him—we are home safe and sound.

We are home, but not before we had another adventure! Imagine the three of us going through a NY airport in the snow, three suitcases, three tote bags, and a wheelchair. It was quite the sight! We boarded the train to the terminal and, of course, our gate was at the very end! We got down there, and the monitor said our flight was on schedule.

They called us to board, even though the snow was coming down sideways and sticking to everything. We were in line when the announcement came that our flight had been canceled. You have to know that we are all basically homebodies. We were so homesick at this point that even though we were in NYC, the thought of not getting home was very disappointing.

I left the girls at the gate and headed to the line of about 300 people where they were rebooking and giving hotel vouchers. While in line, I began talking to the couple in front of me. They were from Asheville and had been in the city for the weekend. They asked me why we were in NY, so I gave them the short version of our story. The wife asked me Mackenzie’s name and promised to pray. While we were standing in that line, Meghan called—our flight had been reinstated! As far as I know we were one of the last two flights out that day.

Now the challenge was that the plane had to be boarded outside in the snow. Remember, I have all this baggage! Well, the wife from Asheville grabbed one bag, the husband took another, I wheeled Mackenzie, and Meghan had the last bag. Once we got to the plane, we had to ascend metal steps covered in snow. Mackenzie struggles with carpet-covered steps; we had never tried snow covered ones! The husband from Asheville took Mackenzie’s arm and practically carried her up those stairs! God is so good! I hope they read this so they can know how much love God showed us through them that day.

We finally took off after an hour on the runway for de-icing and arrived in Charlotte around 6 pm. After a long drive home, we were welcomed by Mitchell, Michael, Morgan, and the dog, Molly! We were also welcomed by a hot meal prepared by a friend along with pound cake, muffins, and homemade bread prepared by another friend. (Thank you, Eileen and Debbie.)

So please know God hears and answers prayers! He is so good and faithful. Although He is taking us through a very difficult time, He is near. He is refining and growing our faith. He is using this struggle in the lives of others who are praying for us. You can be sure that your struggles are in His hands as well. He is trustworthy. I pray that all of you find rest in His loving arms today.

We love you all and hope to be able to thank each of you individually someday (maybe not this side of heaven, but someday).
Mackenzie is very encouraged by all of your comments. If, however, you would like to send her a private e-mail, please do so (mackenziemathis@bellsouth.net). She would love to hear from you.

Keep praying . . . we will keep you posted.

Love,
Lisa

Friday, December 19, 2008

Summary of Our New York Trip

Good morning, friends. I (Lisa) am going to post for Mackenzie this morning so I can give you a summary of what we learned on our journey to New York.

I know you are all eager to know the medical details of our trip, so I will try to briefly summarize the information we gained through these doctors’ visits and procedures.

As you may already know, Mackenzie has a connective tissue disorder that may be Ehlers-Danlos Syndrome. This means her connective tissues do not function as they should and cannot hold her skeleton in place properly. This, of course, affects all parts of her body, including her head and neck. The doctors here confirmed by radiological studies and the invasive cervical traction that Mackenzie does indeed have craniocervical instability. (In her words, she is a “bobble head.”) The effect of this on her body is that her head is settling down on her neck pressing on her cerebellum and brain stem. This can cause many neurological problems, which she has experienced.

Secondly, they feel she has a tethered spinal cord (another diagnosis common to people who have connective tissue disease). The spinal cord is connected to the bottom of the spine by a cord of connective tissue called the filum termale; if this is not functioning properly, the spinal cord can be pulled downward, again causing neurological symptoms and pain. The good news is surgery can be performed to correct both of these issues. Although the recovery from these operations is a long process, most patients’ severe symptoms have been relieved.

The surgeons here are experts in this surgery and have performed over 2,000 in the last six years. We are confident in their ability and knowledge.

Now, those of you who know Mackenzie well know she does not do things in conventional ways—even the simplest tasks take a Mackenzie spin when she does them. This medical issue is no different. Dr. Milhorat, the founder of The Chiari Institute, is concerned with the sudden onset of the pain she is having. He says the structural and brain stem issues have to take a backseat right now to the more troublesome issue of her rapid decline.

He has been in contact with a geneticist in Baltimore who is the expert in connective tissue disorders. They put their heads together over the phone yesterday and concluded something has set off Mackenzie’s immune system, causing an attack on her connective tissues. They are going to try to suppress this attack with medicine before making a decision about further treatment. Our prayer now is to get an earlier appointment than the one we already have in February, and that the medicine will halt and reverse the attack on Mackenzie's connective tissues.

Let me give honor and glory to the Lord for hearing and answering our prayers and yours. He has been faithful to keep us safe, to surround us with kind people, to bring new friends into our lives, and to guide us further in our quest to find help for Mackenzie’s health. Most of all, however, He has been faithful at every turn to bless us with His presence and peace. One of the sweetest ways He did this was to send a male nurse named EMMANUEL to take Mackenzie to her procedure yesterday. I just had to smile (almost laugh) at how good the Lord is. I was able to walk Mackenzie only as far as the big metal doors to the OR hallway. I leaned down and told her to remember Emmanuel was with her! God is so good! He has also blessed us with all of you. How can I even begin to tell you how thankful we are that you are praying for our girl? There is nothing greater you could do for us than to carry our child before the Throne of Grace.

So, now you know what we know. We are about to leave for the airport. There is a winter storm bearing down on NY as we speak, so we are trusting the Lord to get us home today.
Thank you again for praying for us and for the practical things you have done for Mitchell, Michael, and Morgan while we were away.


We love you all!
Lisa, Meghan, and Mackenzie

Wednesday, December 17, 2008

New York: Day 3

Hey! I had a long day of appointments today! It went well and was very informative. We don't have a definite diagnosis yet, but we should have more information tomorrow after the invasive cervical traction! I will post again as soon as I am able to. Sorry for such a short post. I did not sleep at all last night and I have an early morning. I have to be at the hospital at 5:30am and the procedure starts at 7:30am. I ask that you pray specifically for wisdom for the anesthesiologist. I don't respond to normal pain medication, such as morphine and toradol. We hope that he will know exactly what to give me!

Thank you so much for your support, prayers, and comments!

Mackenzie

New York: Day 2

Today was a good day! Despite my exhaustion from seeing the city, I could not fall asleep until 3am. Other than that, I slept pretty well and almost through the whole night! We were able to sleep late, because my appointment at the imaging center was not until 4pm. We had a great lunch at a small pizza restaurant down the block from our hotel! It was delicious, especially since pizza is my favorite!!! Then, we came back to the hotel for a short nap before my appointment.

At 3pm, our taxi came to pick us up at from the hotel. I was nervous about riding in a taxi because taxi drivers aren't usually known for their safe or smooth driving! We were blessed with very nice drivers, who didn't drive TOO badly! My neck brace helped a LOT!!!

The people at the imaging center were wonderful! The guy who took all of my images was a rather large man with a heavy northern accent. He was not very gentle putting in my IV, and he made a mess! But it was okay because I didn't have to have it in for very long. It took a lot less time than we thought it would, so we didn't back too late! I was very thankful for that because I was not allowed to eat or drink anything after 12! After getting lost, the taxi driver dropped us back off at the hotel. We ordered take out and just relaxed for the rest of the evening.

We have an early start in the morning. I have to be at the North Shore Hospital at 8am to get blood work done, which as most of you know is my favorite thing... NOT! I'm not worried about it though. I have to do what I have to do! After that appointment, I go to the Chiari Institute to meet with the nurse practitioner at 10am to give her my life history. Then at 12pm, I have an appointment with a neurologist to have a neurological work up. He will go through all the images that were done today, and basically tell me what is going on. Then at 3pm, I have an appointment with a neurosurgeon who will tell me what we can do about my problems. It is going to be a LONG day of sitting and waiting. I ask that you pray specifically for mom, Meghan, and me to have patience while we wait.

I am very excited for tomorrow! I have been waiting a while to have a doctor that is able to tell me what is wrong with me! These doctors are some of the best in the world, and I am absolutely BLESSED to be able to see them, especially so quickly!!! I have been thanking God for that everyday since I found out that I was going to be able to come, and I have been the ENTIRE time that we have been here! It is so surreal to me! What an awesome God! He has blessed me in so many ways just over the past few weeks! I am VERY thankful for what He is doing in my life, despite how difficult and painful it is! I am already able to see some of the amazing things He is doing and the amazing people He has brought into my life through this! It makes it ALL worth it!

Again... Thank you for all the support, prayers, and love you have sent my way! I really appreciate it! I hope you are having a great week so far, and if not, it will be okay! It is almost Christmas break, so hopefully you will be able to relax!

Click here to view pictures from today:
http://s478.photobucket.com/albums/rr149/mackenziemathis/NYC/NY%20Day%202/

Love,
Mackenzie

Tuesday, December 16, 2008

New York: Day 1

Wow! What a day! I'm not even sure where to begin! I guess the beginning of the day would be most logical!!!

First of all, our drive to Charlotte was very quick and easy! When we got to the airport, we were able to park in one of the first spots in the parking garage. That was definitely a blessing to mom and Meghan, who had to do all the walking, pushing, and dragging along luggage! We were quite the trio! Meghan was dragging 2 suitcases with bags on top of them, mom was trying to push me along while trying to drag another suitcase, and I just rode along with a stack of stuff on my lap! It was very funny to see! We did have some difficulty with sidewalks and maneuvering the luggage, but other than that, we had an easy time getting through the airport! God certainly blessed us with short lines and very helpful workers!

I wasn't sure what to expect when I got on the plane, seeing as this was my first flight! Our plane was NOT like the ones I saw on TV that were huge and noisy! Our plane was small with only one isle dividing a row of 3 seats and stayed fairly quiet. We all had window seats and were seated close together, which was great! The take off was very exciting for me! I was afraid it would hurt, but my neck brace stabilized my neck, so it wasn't bad at all! Once we were in the air, I stared out my window the ENTIRE TIME!!! I was so amazed to see how high we were, and how small everything looked! Once we made it above the clouds, I was in awe of how beautiful God's creation was! I was shocked at how beautiful such a simple thing as clouds could be! The rest of the ride was very smooth overall.

As we started descending, I felt something that I haven't felt in a LONG TIME! The pain in my back was gone!!! My headache wasn't so bad!!! My knees did not hurt! The weightlessness that occurred when we had descended relieved my pain! It was only for less than a minute, but I was so excited that I almost cried! The pain returned as soon as the plane evened back out, but I was so happy that I had the few moments of relief! It felt like God was showing me that we are on the right track in thinking that EDS was allowing my joints to be compressed! It was the most incredible feeling I have ever experienced! The whole way down, I sat in anticipation for us to descend more so that I could have a few more seconds of relief! I was VERY thankful for those moments!

The landing was fairly smooth and did not cause me any more discomfort. It was difficult getting through the airport to the place where the shuttle took us to our rental car, but everyone was very helpful and patient! After we got the rental car, we had an easy time getting to our hotel, which is in Great Neck, NY, where the Chiari Institute is. We checked in with ease and again, everyone was so helpful! God really blessed us with wonderful people!

Then we were off to the big city! After a train and subway ride, we were there! This was Meghan and my first time to NYC, so we were very excited! We were able to see The Waldorf, Rockefeller Center, Saks, Time Square, the Chrysler Building, Broadway, and so many more incredible places! We took TONS of pictures! We had a wonderful dinner at an Italian restaurant and had a great time together! The sidewalks were definitely NOT ideal for a wheelchair, but we managed! I had to get up several times so that mom could lift the chair over the curb. I am very lucky that I can still stand and walk short distances. It would've been much more difficult, if not impossible, if I couldn't!

I have really learned that despite all the ADA laws, many places are NOT very accessible for people with disabilities! It began to frustrate me very quickly! I was able to get in and out of the wheelchair and walk down some steps when there was no way I could use the chair, but there are handicapped people who CANNOT do that! I was angry for those people! Most people do not realize how difficult simple things become when you have to use a wheelchair! I became very discouraged because of this! It seems like common courtesy for business and public places to be COMPLETELY handicap accessible, but they just aren't! This also made me very thankful for the amount of mobility that I DO have!

Well... Those were my experiences for the day! I don't have an appointment until 4pm tomorrow, so we can sleep late and relax until then! I am having a TON of imaging done tomorrow that will probably last until 8-ish. We will have them on disk in our possession before we even leave tomorrow. The images will also be sent directly to TCI so they can be read before my appointments with the nurse practitioner, neurologist, and neurosurgeon on Wednesday.

Thank you for all of your support and prayers! My family and I appreciate it more that we can ever put into words! Please let me know if you have any questions or comments! If you want, you can just leave the comment/question on my blog, or if you would like it to be private, you can email me. Thank you again!

Click here to see pictures from today:
http://s478.photobucket.com/albums/rr149/mackenziemathis/NYC/NY%20Day%201/

Mackenzie
mackenziemathis@bellsouth.net

Wednesday, December 10, 2008

Mystery Diagnosis About Ehlers-Danlos Syndrome

There is a show on Discovery Health Channel called Mystery Diagnosis. On Monday night, there was a new episode where the second half was about a woman with EDS. We found it very informative! It is airing again on December 13 at 5PM and December 20 at 9PM. I hope you get a chance to see it.

Thank you for all of your support and prayers! It means more to me than I can put into words!

Mackenzie

Sunday, December 7, 2008

More Helpful Websites

My mom found the following article that someone wrote to help people understand what a person with chronic pain and fatigue goes through on a daily basis. I have shared it with a few friends and it really helped them understand! I hope that it helps you understand too!

http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

I have also been asked to share with you some poetry that I found. I am NOT a great writer, but when I read this poetry, it was as if I had written it myself! I also sent these to several friends to help them understand!

http://www.butyoudontlooksick.com/2007/07/poetry_sleepless_nights.php#more

http://www.butyoudontlooksick.com/2007/01/poetry_alone_at_night.php#more

http://www.butyoudontlooksick.com/2006/11/poetry_being.php#more

http://www.butyoudontlooksick.com/2006/06/poetry_pain.php#more

http://www.ehlersdanlos.ca/dialogue.htm

http://www.freewebs.com/chiariwarrior/mypoetry.htm

This is a long, but VERY good, letter that someone dealing with chronic pain wrote to help a "normal" person understand! EVERYTHING described is how I have felt, so I thought it may help you understand as well!

http://www.thedailyheadache.com/2008/02/helping-others-understand-a-letter-to-people-without-chronic-pain.html

I hope this has helped you better understand what I have been feeling. Let me know if you have any questions!

Mackenzie

Saturday, December 6, 2008

Helpful Websites

The following are websites that explain Ehlers-Danlos, Chiari Malformation, and other related conditions much better than I can.

EDS:

http://www.medicinenet.com/ehlers-danlos_syndrome/article.htm

http://www.emedicine.com/derm/topic696.htm

Chiari Malformation and related conditions:

http://chiarilifeline.blogspot.com/

http://www.ninds.nih.gov/disorders/chiari/chiari.htm

I hope this is helpful! Let me know if you have any questions!

Mackenzie

Friday, December 5, 2008

Waiting for TCI

By a miracle, I have gotten appointments at The Chiari Institute in Great Neck, NY, December 16-18. They received my paperwork Monday and called Tuesday. This is a HUGE deal! We were expecting to have to wait until the beginning of next year, but God worked it out where I won't have to wait that long!

We have been praying that God would send me where I needed to be, and we kinda felt like this was the path we needed to be on. I had been thinking that my appointment wouldn't be until January or February at the very earliest. When I found out that it was going to be in less than 2 weeks, I wasn't sure how to feel! I was excited because I know that they possibly have the answer, but I was scared because it was NOT the answer I wanted! I'm still not quite sure how to feel!

I am very excited to go to NYC! I have never been there before and never even been on a plane! We fly into NY on the 15th, so I will be able to visit some of the places I've always dreamed of visiting! My first appointment is on the 16th, and I am getting a LOT of MRIs, CTs, etc. The next day I have appointments with the neurologist, neurosurgeon, and the nurse practioner to get my life history. On the 18th, I am going to have a test done called invasive cervical traction (ICT). Then, I come home on the 19th.

I will try to update while I am there, but if not, I will when I get home.

Mackenzie