Ladybug Secrets

Ladybug Secrets:
Don't let the small stuff bug you. And Spot new opportunities.

Friday, December 2, 2016

The Video

I woke up this morning to a video on Facebook of a little friend of ours. She just had major reconstruction surgery due to Chiari and Ehlers Danlos. Her little "thanks for the prayers." made me remember how easy it is to get caught up in the How. It is hard to get to the How if we first do not step out in Faith. Right now everything around me seems very uncertain. I wish I could say I have never experienced this before. Sadly uncertainty pops up often in our life. But lately has been different. Before it was easier to reach out in Faith. I have grown very weary.

The last few months have been hard. We went through a family rough patch here. Most families experience highs and lows. Through the lows we try to drag each other along. This year has been different. Instead of pulling together, we did a bit of pulling apart. After realizing we are better together...life went back to semi-normal. Through it all I have been becoming more and more depressed. I wish I could say rainbows and unicorns fill my mind but that would be a lie. Seeing my body continue to fall apart and watching my kids hurt more felt like a weight I could not carry. I think another struggle has been having family and friends tell me sharing our story is wrong. Asking others to pray for us is selfish. And not letting my kids be kids is bad parenting. It has felt like a terrible slap in the face. Instead of feeling love, I felt great sadness. I have heard many times from other people with chronically ill family members, how toxic others can treat them. I thankfully had never dealt with it. Now I am. I think because I have always been a sensitive person I dwell too much on how to make it better. In doing this, I take away from the healing that needs to happen with myself and kids. It is mind blowing we are still in a place where others call you out on physical and emotional differences. It leaves me feeling trapped in a place I do not want to be.

All of this brought me to the video this morning. God always finds a way to place goodness in your life. A little girl, braver than I will ever be, can make me stronger. It is not an easy task living life with medical uncertainty around every corner. Yet we can choose to be brave, seek joy, and comfort others. This is something we must do. It is ok to be broken, sad, and cry out for help. It is never ok for someone to tell you not to "feel" so much. If that brokenness overwhelms you though, find someone who will hold your hand and lift you up. That is what makes us feel whole again.

A little update on our future:
Today we head to CC for Brooke to have an EEG. Next Tuesday she will have her MRI. I will be able to talk with her neurologist before I head off for surgery. Brooke has been nervous her seizures are returning or her Chairi is bad again. We hope the test can shed some light on what is going on.

Next Thursday I take Aidan to a specialist in Cleveland. We are hoping he can help Aidan with his very low energy levels and terrible pain. I would love if he could get some relief.

Next Friday Amy has a colonoscopy. Although this is routine, I am praying it will go well. I know she will be nervous and I want to have the strength to calm her fears.

In a little over a week, I leave with Tim for my surgery in Maryland. I am less than thrilled to being going through this again. I am very hopeful it will help. We will be there almost 2 weeks. I am not able to drive for at least 6 weeks. The last time I had this surgery my recovery was not easy. I am praying this time will be easier. I am so very thankful for all who have helped us! We are humbled by meals, car rides for kids, donations, and offering to come do our laundry. We are beyond grateful to all who are helping us with kids, Amy, and animals why gone. I love my village!

Sunday, February 21, 2016

Called Here for a Reason

January, February, and even March are Birthday Central at our house. Thankfully March is just Hubby and my birthday's, so no planning or crazy parties. Amidst all the party planning, we had several doc appointments and procedures scheduled. Sadly due to a nasty head cold that every single one of us has had...all procedures(sleep studies and mri) had to be postponed. Thankfully we muddled through sickness and made our way to Cincinnati for Aidan's appointment with the geneticist. One of the most frustrating things about kind of rare chronic illnesses is travelling for specialists. The next frustrating thing, going even when you know exactly what the doc is going to say but needing to stay established as their patient. 

I knew seeing the geneticist would not be terribly enlightening. Aidan has been struggling with pretty specific things. We had not seen this doc in several years though. We had tried a more local geneticist with not great results. This particular geneticist is very hard to get into and we really like him. It was worth the 4 hour journey to be set up as his patient again. He was also very blunt with Aidan. I think this was good. Aidan needed him to tell him like it is. Here are a few things we learned or relearned. 

Aidan's shoulders are not great. Doc feels they are subluxing in and out of socket. He wants Aidan to see sports medicine. Hopefully they will be able to guide him on healthy ways to keep shoulder in shape. He did feel like swimming was great. He did tell Aidan to lay off butterfly for awhile. Thankfully Aidan has 6 weeks off of swim. Doc said another thing to look at is rowing. The rowing movement is very good for people with EDS. This is great since Aidan loves kayaking. The important thing is to keep him moving. The less movement the more EDS will rear its ugly head. Water is great therapy and we should keep it up. He also said Aidan's 2 and 3 baths a day to soak is not uncommon. He agreed Epsom Salts are great. We also like to add our oils in too. 

Next was Aidan's poor diet. He is concerned with the very low caloric intake Aidan has. He also does not like the binge eating we see in him. He stressed to Aidan his 2 jobs in life are eating and drinking, nothing else. He went through a scenario of wild animals to illustrate what he meant. Thankfully Aidan was all ears since the doc was using animals as an example. Doc wants less sugar and more high calorie/high protein foods in his diet. He wants us to see a nutritionist for this. He does not want this to lead to further complications of needing food supplemented in other ways. Neither do I. We have to work with him on having a healthy relationship with food...seeing it as fuel and not luxury. We also need him to hydrate. He should be drinking 3/4 to a gallon of liquid per day. He should carry fluid with him every where. 

Doc addressed Aidan's headaches. He talked about posture. Where swimming is great for EDS it is awful for posture which in turn leads to more headaches in EDS patients. So I have to work with him on keeping his body aligned correctly. He recommended yoga or core strengthening for this. I may just pull out my ballet training on him! :) The doc said Aidan is basically trying to hold a bowling ball(his head) on very loose rubber bands. We need to teach his body to hold his head up with bone not muscle. 

The last thing we discussed were the "crashes" Aidan has been having. He will be fine and then he will get hot, feel flushed, sick, upset, angry, light headed, thirsty, and agitated. I was pretty sure I knew what doc was going to say about this. He feels like Aidan is experiencing episodes related to Dysautonomia(POTS). Sadly I recognized the symptoms because I have them too. The main things though to help dysautonomia are the same things we need to work on for EDS- high protein, more liquid, endurance, and salt intake. 

The really good news about all of this...Aidan is a boy. Boys tend to have a few years right before puberty where they get worse. Then testosterone kicks in and many if not all symptoms can get better. No this does not always happen but it does happen. Where a girl will see many of her symptoms start in teen years, a boy will see many leave. The doc encouraged us to keep moving forward. We need to help Aidan have a healthy exercise plan, a good food relationship, and high liquid intake. 

This is all simply fantastic news! I say that with a certain level of sarcasm. I read in a book I am reading for lent, "Don't you want to get better?" Do not get me wrong...YES we want to be better. But all of what I just said takes work! Don't believe me...think about this for a moment. Brooke has several food allergies, requiring certain food prepared before we even walk out the door. I also have allergies and have to watch certain foods. Now Aidan needs his food monitored. Plus others who live in the home need fed. All of us need to drink lots of fluids to keep headaches away. It is my job to stay on top of that. When someone gets a headache, I must decipher from how they are crying and holding their head what kind of headache. This will help me to figure out best treatment. What if I have a bad headache and so does a child? This leads to another complication. What if something slipped into our diet and makes poor Brooke sick? I have to retrace my steps to figure out what it was. Brooke and I react to soaps and perfumes. I have to be super careful what smells are brought into our home. Just the other day I started reacting to a detergent I had been using for six months. So now all my clothes need re-washed. If someone comes in with a strong perfume, I have to wash or clean where they were. I take large amounts of benadryl just so I do not have hives all the time, which in turn makes me super sleepy.  I am supposed to have PT. Aidan now needs sports medicine. All kids need to be in swim to keep them strong. I actually should be in something to keep me moving as well so a wheel chair is not in my near future. I am supposed to see a nutritionist to figure out how to help Aidan. Both boys still need sleep studies. Chan needs a full spine MRI which requires sedation. All of the tests are followed by doc appointments to hear results and learn what is next. Plus our regular follow ups with geneticist for Aidan and I, allergy doc for Brooke and I, Neurology for all 3 kids. And none of us feel good. 

I have thought many times of going the completely natural route. And for some things we do. We try to eat very healthy(minus parties). We carry our oils every where. We rely on non-traditional treatments when possible. The thing is...no amount of "natural cures" will put a brain back in a head or change or genetic structure. So yes they are very helpful when talking about allergies and many many other things, we still need our docs for many many others. 

Believe me I write none of this to say "LOOK AT ME". I write it to explain to anyone just beginning, "yes this is lifelong and the road is hard sometimes, but it is so worth it to fight for your kid and yourself!" I write it for my friends who think I am a flake for cancelling or not being there again, "my kids need me right now." I write it for the stranger who thinks I am making this all up, "please just take a moment. learn about ehlers danlos syndrome, pots, chiari, and mast cell activation disorder." I write this for my mama friends who are crying tonight for their babies, "i wish i was there to wipe your tears and hug you." We do want to get better...but sometimes we were called here for a reason. 

Monday, February 8, 2016

A Tiny Update

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.

Tuesday, May 26, 2015

A Favor...A Request

This is a post to ask you for something. Not something big and hopefully something you want to help with. I am asking for a donation. Please I beg you do not stop reading here. This donation does not directly benefit our family...but it may save a life. This Sunday is our annual Chiari Walk for a Cure. It is sponsored by CSF. I do not write enough or say thank you enough to this organization! It is led by a very small staff who tirelessly raise funding to fight Chiari and related disorders. Sunday will be the third time we have participated in the walk.

Please know I do not ask lightly for donations. Our family truly does take fundraising very seriously. We know every family has something they are struggling with. For us...a donation is never easy. Our money is carefully budgeted and rarely do we have extra to give away. So I get it. Sometimes you just can't give. But if you can...please follow the link below. It would mean so much to us. Even a $5 donation is amazing! Nothing is ever not enough. Every little bit helps.

I was thinking back to those moments before Brooke's first surgery. This is what I wrote that day, "What an amazing day!  From start to finish things have just gone well!  Brooke was a trooper this morning and marched right back to the OR waiting.  She was a little nervous about the hospital gown.  I mean they are kinda ugly.  But with some coxing and tears, she put it on.  They gave her some meds to make her a little loopy, and I was able to carry her back to the OR.  I stood next to her as they put the mask on for sedation. (the anesthesiologist was so cool!  Very kind.) As she drifted off to sleep, we named all the colors of Bubble Gum!  Dr Bolognese helped us and even comforted Brooke by rubbing her legs.  With a high five from the anesthesiologist I headed out.  Dr B says to me on the way out..."Wish me luck!"  Funny Guy!

We waited 8 hours, and got great news!  He was able to not cut the c1 vertebra.  He feels this will keep her from having a wobbly head and needing a fusion.  He had to make a slightly larger incision.  But all of her cerebellar tonsils are back in her skull cavity.  He used only a small bovine patch.  He is confident this was a good surgery.

Aidan was then most upset because he wanted to see his sis.  I told him it just was not gonna happen.  With many tears we made our way down the elevator.  As we step off the elevator, there she is!  Brooke right on her hospital bed!  The anesthesiologist called Aidan over so he could see Brooke was ok.  They then took her on the elevator to PICU while Aidan went out of the hospital smiling!

So Brooke was resting peacefully in her room.  She woke up with a scratchy throat from the tubes.  But then she promptly asked "Can we paint my nails?"  Gotta love that!  Then a little later she wanted to color.  Poor thing she would not even be able to hold the crayon right now.  But at least she is positive!  She looks good.  Her blood sugar is low, but then she has not eaten since yesterday.

I was super sad to leave her, but Tim is taking the night shift so I can be with the boys and help my mom.  Was kinda questioning leaving.  I get back to RM House and Aidan is having an asthma attack.  Of course I remembered his machine, and meds, but forgot the face mask!  So after a little while my mom and I rigged a way to get a dose of allbuterol to him with his machine.  He is now sleeping peacefully.

Thank you all for prayers.  With these prayers we managed to survive a very hard day!  We truly felt wrapped in love!  I can't imagine not having all of our family and friends.  Some people might say fate or karma, but here we like to just call it Faith!  And in the end, I had smiles from all my kiddos and my hubby!  Can't ask for anything else!"

Please help us fight Chiari! Thank You!!
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Wednesday, April 8, 2015

A New Approach

     I have said this before...but feel I should say it again...my heart is not really in this blog anymore. I feel like I do write here to update those who want to know what is going on. Please know my heart though, I am not writing to complain or say "look at us". This is just an update or a way to maybe help others on a similar journey. I know our story is not unique, so many struggle daily within their own lives. So with that here is our update. 
     After a busy few months we are getting back on track. Swimming started again and Spring Break is over, meaning our schedule is full! In between the normal day to day, we are still trying to figure out some of these health issues. Aidan, Hubby and I finally had the blood work done for the whole exome sequencing test. Our blood was sent off to the lab in Maryland and we wait. It will take at least 15 weeks before we hear anything back. In the mean time we are trying a new approach which I will share more about. We are also trying to get in with our Neurosurgeon. We are hoping our appointment can be by skype so we do not have to make the trip to NY. 
     Back in October I started drastically changing my diet. I gave up all sugar (yes even my beloved Dr P!), gluten, and many other processed foods. I was hoping to also see a drastic change in my health. The good part was I lost 28 lbs. My body did not recover the way I had hoped. Along with these food changes, I started seeing an allergy doc. He was helping me try supplements to help my body heal. Now before you think I ditched modern medicine...I did not. In September I started having allergic reactions to almost all of my medications. It was awful. I was breaking out in hives, lips and eyes swelling shut. It was scaring me because I rely on meds for many of my conditions. If I could not take them...what would I do? Plus I knew if I ever needed surgery, I needed to figure out why I was reacting like this to medications. And it was not just meds. It was cleaners, soaps, perfumes and some foods. Now I have always had trouble with smells and cleaners. This was different though, these reactions were more severe. They would cause a reaction that lasted days. I was and still am living on benadryl. 
     The Allergy Doc was awesome! He agreed I needed to figure this out before I needed surgery again. With his help, I was able to make some progress. Unfortunately I got to a point where I was stuck. I was not really getting better but I was not getting worse. I would have a few sorta great days, then crash for a week. I could not exercise to build strength because it zapped my energy for daily tasks...like caring for my family. Plus with the food changes I felt like I lived in my kitchen but needed to be in my bed. 
     I have seen similar issues with Aidan. One minute he feels relatively decent...and the next few days he can barely lift his head up. It is as if our bodies just do not have what they need to function at even a normal capacity. The genetics doc had an answer for this- wheel chair. She felt it would conserve our energy. She felt Aidan and I both should have one. And for about half a second I thought about it. Some day it may be our reality and at that point I will say ok. I feel we have not reached that day yet. Aidan and I have not explored all of our options. 
    So I did what most crazed, tired, and pitiful people do...I called my brother and cried to him. He listened and then we both started researching. We both came across "functional medicine". The truly amazing part...Cleveland Clinic recently opened up a Functional Medicine Center! Back in December I made Aidan and I an appointment. Mine was yesterday and Aidan goes the end of this month. Just to give a little info on what this is all about- functional medicine looks at the whole body. These docs believe all of our systems are related. There is a reason why one part of the body is not functioning well, and they search the whole body to figure this out. They use both traditional medicine, holistic medicine and diet to treat the person. They also want to be a partner with you and all your other docs. It is kind of like they are steering your ship (body) keeping the lines of communication open between you and all your docs. 
    I approach all appointments the same way..nervous, cautious and with zero expectations. First let me say I got to the Cleveland Clinic early. Of course I parked a million miles away. My hip(due to my walking at zoo day before) was slipping. So I was doing this strange dragging my leg while trying to keep my other hip from slipping while trying to walk at a quick pace as to not be run over by all the crowds of people. Yes I am sure it was comical to watch. I kept saying to myself "don't you dare cry!" and focusing on the signs to figure out where I was going. I got lost. Which ended in me walking much further than I needed and I was late. I did arrive though! 
     The appointment went very well. It was long! I started with nurse at 10:30. Then I saw the doctor for an hour. They cover everything! They start at birth and work their way through your life, looking for triggers and family history. I met with the dietitian. She basically told me I could eat nothing. Just kidding! She told me I could eat very weird food and had to give up coffee. Yes I just said I have to give up coffee. I do not have to start this for a week or so though(just letting you know I will be drinking a good amount of coffee in this time). Then I went and had 10 vials of blood drawn(no joke). I was handed orders for several other tests. The doc did say she was looking for a few specific things: adrenal crisis, deficiencies in vitamins, poor absorption of vitamins and minerals, histamine issues, intolerances or allergies to foods, immune issues, and a few other things. 
    It is a bit overwhelming. It may not seem like a big deal but it is a huge life style change. It is time consuming and takes a lot of prep. It is also hard to get the whole family on board. The good news is it is mostly covered by insurance. My hope is I will see some healing from all of this. I know it will not "fix" my brain or my neck. But it may help with inflammation, allergy reactions, and a few other things. I am also hoping Aidan and even Brooke could benefit from this. It is a different, new approach but I think worth a shot. 

Tuesday, December 23, 2014

The Follow-Up

I will keep this quick and just update on today's visit to geneticist.  I took Brooke, Chan and myself.  Doc does feel we all have signs of hyper-mobile ehlers danlos syndrome.  But she also feels like we are not typical cases.  She sees the various traits throughout our family.  She does not feel there is any need to test for any other form of eds.  I agree with her on this.  She does feel that there are good reasons to take a broader look at other genetic issues within our family.  Aidan and myself are her main reasons for this.  She suggested ordering a whole exome sequencing test.  This test would take a "bird's eye view" of our genetic make up.  The doc said she does not recommend this test very often.  She warned it may create more questions.  But she feels it is worth that risk.  She thinks it may help us understand how to proceed.  On our end it is simple.  They need blood work for Aidan, Tim and myself.  The blood test will be anaylzed by a lab and a report will be made.  It can take up to 15 weeks for results.  Doc and genetics counselor both strongly cautioned that we may learn things that simply can't be answered by science today.  I felt like I needed to ask if alien dna may be found, and how this will be covered by insurance? 
 In all seriousness though....I am kind of confused what we are going to learn and how it will help.  Is this test going to help us help Aidan and me?  Or will it just muddy waters?  I know knowledge is power...but if we do not have the knowledge to decipher the info how is that powerful? Yes it may some day be powerful....but can it help us now?  
We are going to proceed even with many questions.  First we need to find out if insurance will even cover.  Some insurances do not.  So we are praying ours feels this may help.  We are also taking Aidan to a pain management doc and a Physiatrist for a consult.  Thank you for prayers and support as we continue on.  Many days I am drained and not sure which way is up.  But hearing encouragement keeps me fighting and moving forward!

Wednesday, December 17, 2014

Geneticist Visit

I decided to jump on here and give an update on Aidan's appointment.  I know so many prayed and I thank you for that. I can't say we have any clear answers.  I did really like the staff and doc.  They were all very caring and understanding.  Honestly the doc did not offer a ton of hope.  But I guess that is not her job.  She works in facts and realities.  If you have ever been to a geneticist, you know the extensive family history questions they ask.  You also know it is a bit like putting together a 5000 piece puzzle.  It can get confusing and muddy very fast.  This doc was very gentle and soothing in her tone.  I felt comforted by her looks of care towards Aidan.

This is what we know....Aidan is in pain.  Most of his days are spent sitting or laying.  He hurts to walk or do much.  He knows if he plays for a few hours, the next few days he will need rest.  For example I suggested a group I thought he would like.  He said, "Well I probably would. But if I do it I will not be able to swim."  He knows picking one thing means missing out on another.  The doc is not completely sure what is causing the most pain.  We know his joints hurt.  If you sit by him, you will hear popping and cracking from his joints subluxing in and out of socket.  He can't sit still because he needs to move to keep from getting stiff or limbs falling asleep.  We also know he is very weak.  He is not eating the greatest, so we need to determine if he is low in vitamins.  We know his head hurts 70-90% of the day.  She feels this is most likely due to his small chiari herniation.

The doc did some basics tests to test for EDS.  Not that she did not think he had, just wanted to confirm.  She said he has some pretty classic symptoms-doughy skin, pale, see through skin, hyper-mobile joints.  She did not think he was extremely flexible which I have to agree with.  But she also feels he is in so much pain he resists moving in certain ways.  Hyper-mobile EDS is tricky to diagnosis.  There is no blood test to confirm, just observation by doctor.  She feels like Hyper-mobile EDS is the right diagnosis.  With that said, she wants to see myself, Brooke, and Chandler as soon as possible to see and compare whole family.  They have us all coming back on Monday.  She may want to order further genetic testing to rule out any other form of EDS or connective tissue disorder.  But genetic testing is very expensive and not always covered by insurance.  After seeing all of us, she will make the determination if the testing is needed.  She did rule out Marfan's but is still curious to see if his heart is ok.  She will order an EKG to just double check.

She gave us a few other options to pursue.  She definitely thinks he needs a pain management specialist.  We are also referred to a physiotherapist at children's.  Hopefully they can help with some strength and endurance.  She did suggest a scooter or wheel chair.  I was not super thrilled about this simply because I do not want him to become weaker.  But she feels that it would help preserve his energy.  He might use chair for store so he has energy for swim.  She also feels like I am correct in having him see neurosurgeon as soon as possible.  Although I do not want to jump into surgery, we need to sit with him and have him read MRI.  He read and we have talked via email, but I need that face to face.  I need to hear him say...it is time or we can wait a little longer.  We are not just talking a decompression like Brooke (which is nothing to sneeze at).  We are talking a decompression and fusion from skull to c-2.  Yes I know kids have this surgery and do great.  This surgery is not necessarily a fix.  Some are worse after, some require many further surgeries.  I just want to make sure we have covered all our bases and that he is healthy enough for surgery.

Next step is going back Monday with all of us.  If you are praying for our family, please pray for strength for me.  I am not well.  I try to hide it but honestly my body is broken.  Driving, sitting in appointments(while wrestling a 4 year old) and then having to go about the rest of our day is beyond draining.  I do not want to complain....I know we are blessed.  It is just very hard to pick up your feet and move forward some days.  I know what I need is rest but when you have children who need you there is no rest.  I am so grateful for all of the people who have helped us this Christmas season!  I have felt so much the love of others.  I dream of some day writing a post saying "We are healed!"  I pray as time goes on they will find new ways to help us and even ease the pain a bit.  For now, we will move forward and find hope in the future.  And we thank those who walk this journey with us!  You help more than you could possibly know!