Bits of a Puzzle

Last week was a very busy week.  I wanted to post sooner, but all my energy has been channeled into traveling from one destination to the next.  Last Wednesday I made a trip up Lorain for an MRI on my cervical spine.  They have a special machine where you sit upright for the MRI.  This shows if there are instability issues, and also shows a different view of spine than just laying down.  My dear friend Monica accompanied me on this trip.  She warned me that I would feel awful afterwards, and wanted to be there for me.  We joked on the way up that 2 girlfriends should be driving to cleveland for a spa day or a day at the art museum not a trip for MRI's.  But this is our life, and I feel so blessed to have her.  I know it was truly painful for her to go, and yet she comforted me in my own misery.  The MRI was Brutal!!!!  I almost passed out and I was so sick afterwards.  The drive home was torture.  We stopped to pick up a drink from Panera to try and make our day see normal.  After picking all the kids up, I crashed in bed.

First thing Thursday morning we left for New York.  My mom, myself, and Chan accompanied Brooke to see Dr B.  Again another long, tiring journey.  Of course we hit horrible traffic in NYC.  Of course I was once again amazed at the way other humans drive and treat each other.  But thankfully we made it.  We walked into the Ronald McDonald House which now feels like a second home.  Thankfully dinner was stored away in the fridge for us, and we sat down to eat.  While eating we met another Chiari family.  The young girl, Mace, had had fusion surgery a short time ago.  She was in a collar and her Brooke talked for awhile.  She passed her email on to me so we could keep in touch.  Her mom, dad, and I talked for awhile about life, future, and docs. It is always a blessing to find other families who are walking your road.  We headed to bed to prepare for the next big day.

Friday morning we headed to see Dr B.  Brooke was so excited and had painted a picture for him, a self portrait!  Thankfully we received some good news!  We found out that Brooke's odontoid bone is still retraflexed (which is not good) but her pannus muscle has shrunk in size by .010 of mms.  Which may seem small but is actually a step in a good direction.  He said this rarely ever happens. (miracle, perhaps!)  So he felt confident in saying that she does not need a fusion right now.  He said there is a chance she may never need it!!!  Of course only time will tell.  But he felt like the collar was doing what we wanted it too.  She needs to continue to wear it.  But she also needs to strengthen her core by doing PT in a pool.  He felt safe in saying we could do yearly MRI's and check ups as long as symptoms stay the same!  Hooray!!!

I had sent him some info on Aidan.  He could not give me specifics because he has not seen him and it needs to be reviewed by the board before we go....but he was able to show me a few things on his MRI.  He showed me how the cerebellum does dip down below the skull floor.  He showed me on a side view and back view.  It is not as large of a herniation as Brooke's and some docs might say it is not Chiari.  But docs who work on patients with Chiari call it a "Chiari Variant" because there is herniation.  He said to say that a person with a herniation does not have any kind of Chiari is "poopoo"(my word inserted for his).  This very much can cause headaches and all the symptoms Aidan has been having.  Right now it will probably be a watch and see.  We will treat him with pain meds, but he does not need to take the migraine meds, as they do not really help.  As he grows it may become worse and it may get better.  He wants to treat it with caution so he said no roller coaster, no trampolines, and no contact sports.  He said for now basketball is ok.  Aidan took this news very well.  He said "Mom I might even want the surgery cause my head hurts so much."  Makes you sad to hear your kid say this!  But I know he just wants to feel better.

After we left Dr B's office we headed to New Jersey.  My cousin Kim was getting married and Brooke was the flower girl.  After a 2 1/2 hour drive we arrived at the hotel.  Unfortunately the room was not clean.  We had to ask for another room and move all our luggage.  After a full inspection of this room, we started getting dressed for rehearsal.  My dad, Aidan, and brother, and sisters arrived right before we left.  Brooke and I headed to rehearsal, were she did great.  We then went to the dinner.  Much coaxing and yes some bribing to get her in the room and willing to stay for awhile.  We got through the salad part, but then she started melting down because of being exhausted and the noise.  We did not leave before sweet Kim gave Brooke the American Girl Doll Kit!  Brooke was over the moon!  She just loved loved that gift!  Thank you Kim for your extreme generosity!!!!  We took our meal to go and headed back to hotel.

Saturday we woke up to a quick breakfast, nail time, and making our selves gorgeous!  ;)  We headed to my aunts house to take pics.  All went well and we were off to the church!  Brooke did an awesome job, and my cousin was stunning!  I am so thankful for all the help we had getting there!  It is a day I will treasure!   We went back to hotel to rest before reception.  Unfortunately Brooke was completely worn out.  We drove to downtown Philadelphia for the reception.  We walked to the Academy of Natural Sciences were the reception was.  What a beautiful venue for a reception!  Unfortunately Brooke is terrified of dinosaur bones and also of large animals that are stuffed.  As soon as you walk in the door there were 2 giant bears.  Then over to the side Huge Dinosaur bones, and tables were set all around the bones.  Again Beautiful!!!  But to Brooke terrifying!  She immediately started holding my hand really tight.  Then the tears came.  Then the pleading to leave, and her looking over her shoulder like something was after her.  Sadly we had to leave.  She fell right asleep at the hotel and I watched the "Murder She Wrote" Marathon! :)

Aidan, Brooke, my brother Jimmy, and my sis Cassandra

Sunday was a long drive but we made it home!!!!  Yesterday we rested, and today more resting!  I have found out a few things from my blood work and MRI.  What I know now is I need to see 2 specialist in Cincinnati.  One is Dr Tinkle who specializes in Ehlors Danlos Syndrome.  This is a connective tissue disorder.  And also Dr Duranni who is an orthopedic surgeon who also knows about EDS.  I go this week for another MRI of my Thoracic and Lumbar Spine.  I do know that I may have rheumatoid arthritis.  But we are pretty sure I have EDS.  I will see Dr Tinkle and Dr Duranni at the end of June.  I do have a significant curve in my spine.  And I have Dural Ectasia.  Which means I have cysts on my spine.  Again I am just finding things out and do not have the puzzle pieces all locked together.  I am so thankful I have the right people and docs in my life and in the lives of my kids!  We have been blessed in so many ways and I am thankful that we can figure out what is going on.  Sorry for such a long post!