Life has been very busy here at Crown Central....some good and some not so good. I thought I would post a tiny(ok let me be honest, not so tiny) update. I know so many still fervently pray for our family. I am not as good at posting because I worry many may find me complaining. Silly maybe but nevertheless one of my fears. Right before Christmas we brought Chandler and Brooke back home to school. It had nothing to do with the school. We were so blessed by the love and support that our school district showed us. We sincerely felt blasted by Chan's diagnosis and part(most) of me just wanted my babies here. They were missing many school days due to sickness. It was always a struggle in the mornings because no one felt well. By the time everyone got home, they were in pain and completely exhausted. We are loving being home together again. It is a huge blessing to support each other on our bad days, and have fun on our good.
With Chan's diagnosis, some new tests were ordered. We were supposed to have a sleep study. Sadly we have had to cancel twice. They will not do if he is sick, and well this is cold season. The other is a full spine MRI. The doc is checking for a syrinx or a tethered cord like Brooke had. The Neurosurgeon is recommending surgery as soon as summer. I am not terribly keen on this idea. Although Chandler has symptoms, they are not as severe as Brooke's were. I would like to consider holding off longer. Once we have these tests done, we will look for a second opinion. Unfortunately this means travel most likely to New York. If you know Chan, having Chiari has not set him back! He is still crazy, charming, and a cuddle bug all wrapped in one little man. I just cringe a little more when he leaps off of tall buildings(well tall jungle gyms).
Brooke is managing. She is still battling tummy issues and fairly severe headaches. She becomes overwhelmed by loud noises when her head is bad. Brooke is struggling with some Mast Cell issues. The other day we were in Target. There must have been a spill somewhere. First she started getting angry. Then hot. Her face started getting red and eyes itching. Next I saw the rash climbing up her neck. We left and came home. She took a cool vinegar bath and felt much better. I feel so bad she is dealing with this. I think out of everything this is the most misunderstood of our illnesses. People think you can't possibly get sick from a smell. I assure you that you can. She has a terrible time with perfumes and lotions just like I do. We are headed back to the allergy doc to see if he can help her. Brooke also has a follow up MRI in her near future.
Aidan is headed back Wednesday to his geneticist in Cincinnati. Aidan has really been struggling. We are not sure if it is EDS or something else going on. His poor shoulders slide in and out of socket. It is hard for him to carry anything very heavy. Even his sax gives him trouble. His energy levels are what concern me the most. For a 12 year old boy, he barely functions. Thankfully he has swim to keep him moving a bit. He is suffering from what we call crashes. We might be out at grocery and he will be walking. He will feel light headed and sick. If he does not sit down, he will get sick. He turns very pale. We are going to discuss all this with doc. Hoping to get him PT as well.
I finally saw Dr Grubb in Toledo a few weeks back. He is a doctor who specializes in POTS/Dysautonomia and the correlation with other autoimmune diseases like EDS. He was a great wealth of knowledge. He was in the room with us for 2 1/2 hours! Some of the things he said made me understand myself better and why I do/feel the way I do. One thing I thought was very interesting was how I sit is actually a coping mechanism for my pain. I have always curled up in chairs or on the floor. If you know me, I love to bring my legs up into the chair. I know people always look at me odd. I remember as a kid my parents telling me to put my legs down at the dinner table. When my legs are down though, it pulls my neck and head. This is a way I have adapted. But I am getting older. I am nearly 40. Having EDS I can still fold myself up pretty well but it is harder on me. Plus the blood pools more and is not getting back to my brain. This can cause muscle spasms, cramps, headaches, and many other things. He said my muscles are hard as rocks. This is not due to exercise I guarantee you. It is due to tensing. I tense because my joints are sliding out of sockets, so my muscles tense up to hold things in place. The problem is they are never relaxing. He recommended PT and massages. Just what every super busy mom, who home schools, and has three chronically ill children wants to hear. He also prescribed a medication to try to target one of my headaches. (I have 4 very different types of headaches) He said with my terrible track record with meds we would start out super slow. Sadly it has not been going well on the medication. Even though I am on a very low dose I feel like my whole body is buzzing. Still deciding if it is even helping head.
There is my not so tiny post! We are so grateful for this life we are living! God has put us in the perfect house, near my parents and friends. Hubby has a job that blesses us daily. And hot water runs from our pipes! Seriously!!! Without hot baths, we would cry. Sometimes we need prayers that our smiles would continue to show. We would find the blessings amidst the storms. Not for one moment do we want to be ungrateful for what we have been given! But some days we have to be sad and a little bit angry. For those days we are thankful for grace.