Ladybug Secrets

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

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!!
http://unitenight.kintera.org/faf/search/searchTeamPart.asp?ievent=1134779&lis=0&kntae1134779=07AB2E83B5A041EF83759BCB3D315614&team=6375651

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!

Saturday, December 6, 2014

A Rambling Mess

Here I am not able to sleep.  I can hear the slight sound of rain on my window.  I know the weather is why I hurt so much today.  Aidan and Chan joined me today with headaches and body aches.  I wish desperately for their sake we could find a cure...a better way to survive this.  Over the past few weeks we have made some pretty big changes again.  It seems like the more we try to live a "normal" life, the more we realize it is just not possible.  That does not mean I quit fighting for it.  I wake up every morning praying and clinging to the idea of health and feeling ok.  I have steered clear of writing because most days I really struggle with what to even say.  But I do find writing it out, seeing it in print helps me to work through it.  Maybe it seems strange to some to have it all out there, but there is a part of me who believes I am supposed to be transparent.  Those who know me know how awful I am at this.  I love to hide behind the "Oh I am doing great" face.  This is my place of honesty.  I do not have to feel the guilt of not having it all together.

I am not really sure about the path we are on right now.  I will say it has been difficult.  Brooke thankfully is thriving in many ways.  School, although a challenge, is going good.  She has dealt with a few health issues.  So far they seem to be related to diet.  We cut gluten out and she is doing much better.  She is seeing the allergy specialist I am seeing in February.  For now she is swimming to continue to strengthen her neck.  I am amazed every day by her fighting spirit and willingness to push through.  Chandler has been struggling.  He has been complaining of headaches even when he is in fun environments.  He has an MRI scheduled for the end of December.  He also is seeing a geneticist in December.  When Brooke was diagnosed all those years ago, I never dreamed my whole family may one day share Chiari and have another Chronic illness like EDS.  If I am being honest, dealing with one chronically ill child is difficult...dealing with 3 plus myself seems impossible. I know it is not but the scheduling of appointments alone is staggering.  Add into that the learning challenges we also face and my days are full before I even blink.

Aidan is my kid I am most worried about.  His headaches have become much worse.  He tries to be a typical boy but pays for it later.  A 2 hour play date with a friend one afternoon, lands him in bed the following day.  School was not working as he was consistently missing.  We are now home schooling.  This adds a whole new layer of crazy to our life.  With me working part time and also needing to be his teacher, plus staying on top of medical issues....I am beat.  Many days I just tell the kids I need them to play quietly so I can rest.  I push and push until my body just crashes.  Sometimes in the midst of the crash I wonder how much longer.  How much longer will my body allow me to treat it this way.  Aidan has been adapting well to being home.  Many days we just lay on the bed and read.  He understands my pain and I understand his.  He and I will both be seeing a new geneticist in December.  We are hoping to be able to travel to NY in the spring to see our neurosurgeon.  I worry about surgery for Aidan.  His surgery will be more complicated than Brooke's was because of the EDS.  I keep praying that swimming will strengthen his neck and head, letting us wait a little longer for surgery.

About 4 1/2 weeks ago I started on a pretty strict diet.  I am doing all of this because of my severe reactions to medications, smells, and foods.  My body has become so reactive to things in my environment it was becoming difficult to go places.  There are certain stores I can't even go in because of smells.  It is horrible torture to be around people who wear heavy cologne.  And I so hate being rude and saying anything.  My reactions though can be anywhere from a skin rash to headache to nausea and vomiting.  Yes just from a smell.  I am not a hypochondriac and it really is not helpful to be called that.  Although the reactions to smells was annoying, my real concern was the reactions I was having to medication.  I broke out in a rash from Zyrtec.  Did you know you could have an allergy to allergy meds?  Several of the meds I was taking on a regular basis caused reactions.  My one doc office did not believe me.  The nurse swore there was no way I was having a reaction to the med.  I asked her if I could please send her a pic of my face.  She called and apologized, telling me she had never heard of someone reacting to that med.  Thankfully I found the brilliant allergy doc in Akron.  He has been a huge blessing.  At this point I must be very careful what meds I consume.  There are only a couple of antibiotics I have not reacted to.  So I researched and my brother researched.  We came up with an elimination diet for me.  It started with 2 weeks of only chicken, leafy greens, herbs, chicken broth, water, and a small bit of tea and coffee.  Those 2 weeks were a bit nuts.  I felt like I was hit by a bus.  It was like 2 weeks of the flu.  Slowly now I am adding in foods.  But honestly if I slip up or get something I should not have...I know it.  The one thing I know my body reacts crazy to is sugar.  And yes I am sure many of you are wondering....no Dr Pepper.  After not having it for over a month, I am really not missing it.  The main thing that is so difficult is all my food must be made from scratch.  I have to plan ahead if I am out.  It is just one more thing I must be committed to.  Even with this food change, I am still reacting to things.  I still need to take one benadryl every morning and night.  I also found out my Vitamin D was super low.  It should be around 40 mine was 8.  My one doc said it was the 2nd lowest he had ever seen.  I am on pretty high dose of Vitamin D now.  Just hoping my body will absorb it like it should.

I have no idea if any of this makes sense.  I used to be able to put thoughts together.  Now I feel like I ramble.  Probably because in my brain that is exactly how it is....a rambling mess.  I have been trying to give myself permission to just not do certain things.  I try not to live by a list anymore.  Because honestly the lists become so long and overwhelming they make me crazy.  I try not to worry about cupboards being in a disarray or toilet paper not on the roll.  I try not to be angry about our circumstances, or regret not being able to do certain things.  I try not to be sad when I just can't do whatever.  I desperately try to find joy where ever I can.  But let me just say I am so thankful for those people in my life I can be completely real with.  The ones who hear my heart of sorrow.  The ones who do not judge me for decisions I make.  And the ones who will listen even if they have no answers.  Having people like that in your life make days like today bearable.

Friday, October 24, 2014

Good...no GREAT NEWS!

Over the past few months I have been trying to come up with a plan of action.  Not always easy when you are never sure what each day will bring health wise....for me or the kids.  But I knew I needed to find a new primary care doc, have a new MRI done, fill out paperwork to make an appointment with neurosurgeon, find a new geneticist for the family, and see a doc who specializes in Mast Cell Activation Disorder. Whew!  So far....here is what I have learned.

My new primary doc is great!  He listened and I felt really understood my need to not just jump on the next medication.  He also agreed that my head symptoms seem Chiari related. (whooshing in head, severe shooting pain at base of skull, and dizzy/vertigo)  He ordered a new MRI which I go for on Monday.  He also wants some scans of my neck to make sure the screws are where they should be.  We are also trying a med I was already on before, so I should not have a reaction to it.

I scheduled for all of us to see a geneticist at Akron Children's.  I have heard some good things about her, and honestly I just can't travel to Cincy for these visits.  Having someone local would be so helpful!  Aidan really needs a doc who can help with possible PT and OT to strengthen his joints.  And since Chan is popping and cracking, I am just going to have him see her.  Praying he is just a noisy kid!  Either way we will all benefit from seeing her and getting answers.

Today I went and saw the doctor who specializes in MCAD.  It was quite possibly one of the best doc visits I have ever had!!  Not because I received GREAT news, but because he listened, understood and wants to help.  He told me right off that I am not well.  Hmmm kind of thought this might be true.  He said he was amazed I was even functioning.  I assured him I was not doing a very good job.  He is very concerned with my allergic outbreaks to so many meds.  He agrees with me on holding off on surgery.  Although I may need a brain decompression, my body is too sick to handle it.  With a weakened immune system from surgery, any new meds introduced could cause a severe reaction.

The interesting thing was everything he would normally start out with for a new patient....he can't do with me.  I can't come off benadryl to have more allergy testing done because I am constantly reacting to things in my environment.  He can't put me on a medication he typically uses because I am allergic.  And another treatment option he feels I might tolerate but he has to slowly introduce 2 meds into my system.  He told me I was on the right track with lotions, soaps, and cleaners.  Making them is a good way to eliminate the chemical part.  He did urge me to not get caught up in essential oils.  Even though I may be finding some benefits, I must be super careful.  Because of my extreme sensitivity these oils can and probably will trigger a reaction at some point.  So fragrance/smell free is the way to go.  Please when you see me do not criticize my lack of smell! ;)

He also expressed concern over some of my other symptoms.  He feels it is very likely that I have celiac disease or a gluten sensitivity/intolerance.  He ordered blood work to look into this.  As of right now I am not supposed to change eating habits (this could change results).  He did stress which ever I have, I must become gluten free.  He feels like my allergies are increasing due to the imbalance the gluten causes in my system.  He also is testing for Vitamin D and Iron deficiencies which he is certain I also have.  It was very odd how he could explain symptoms or things that happen to me without me even telling him.  Like he had already read my book and knew what was on the next page.

He asked me if I played the lottery.  I asked why. He responded, "Well you have to fairly rare illnesses, chiari and eds, and now I may be diagnosing you with 2 others.  Just seems like you have good chances."  Ummm good chances for being sick?  Later I was telling him about the mold growth in our old home. He said, "Yeah the lottery is probably not a good place to put your money."  Funny guy!  I guess this means I will be investing in doctors for a long time?

The bad news is I am sick. Well I already knew this.  And it is a long road to figure out.  Once I have the allergies better controlled I will more than likely need brain surgery.  After that months of healing and rebuilding my system once again. The bad health days will still probably out-number the good ones. There will never be complete healing and I will have to continue to change our life style.  The good, no GREAT, news is....I found another doc who is on my side and wanting to help me fight!  After seeing so many docs this was a sigh of relief.  He said at one point, "Most doctors probably look at you and see so many illnesses they do not know where to start.  But I want to focus in and find a place to start."  Thank you....thank you for stopping in your crazy busy day to listen, to help, and to try to help me find the answers!

Friday, October 10, 2014

In the middle of Blessings

It seems like life may have exploded over here!  Being a home schooling mama I never realized how much work went into the kids being in school.  Just when I think I figure our schedule out....it changes.  So many pray and many more ask how we are doing.  I normally say "great".  Honestly if I told people how we are really doing, they probably would run away screaming, "I really did not want to know!"  I am not terribly good at telling people face to face how things are going.  Probably because of the well of tears that are right behind the eye lids.  Or maybe it is because I feel they are tired of hearing yet another problem with our family.  I also loathe hearing myself complain.  I know many though want to know how they can help, how they can pray.  So for you all, here is the update! :)

Brooke is continuing to do well physically.  She has moments of exhaustion but is growing stronger!  She loves school and is working really hard.  I have been working with her teachers and principal on her IEP.  It is definitely a learning curve for me.  As time goes I feel more confident on what to ask and how to help.  She loves music and art, telling me in detail everything she learns!  Her swimming is improving and she will compete in her first meet in a few weeks!

Aidan is struggling.  He really likes school.  He is doing well academically but physically the days are draining.  Aidan is only on half days right now.  But even this is hard.  His head hurts most days and his pain level has been very bad.  He tries to control his feeling but sometimes the pain is just too much.  He really needs to see the neurosurgeon.  We do have an appointment with a pain doctor soon.  He also is going to see a new geneticist in November.  We are hoping for some answers and ways to deal/manage his pain.

I started working very part time again.  I love the job and really enjoy working.  Sadly though my body does not agree.  Right now my job is getting the best of me and my family the worst.  I somehow manage to make it through getting kids to school and to the job, but then I am done.  Dinner is near impossible, and cleaning is well....not going well.  Thankfully other people in the family pick up the slack as best as they can.  Most days it is just very hard to hold my head up.  I thought about wearing my collar but worry about perception (which I know is silly).  I am really giving me all and trying to make life work.

I am seeing a new doc next week.  I also see a Mast Cell specialist at the end of the month and a new geneticist in December.  I am truly praying for some answers.  One of my main issues right now is I can't take meds.  Every time I am put on a new med to help symptoms, I have a severe allergic reaction.  I am hoping the Mast Cell doc can help me figure this out.  I also know I need a decompression surgery on my cerebellum.  The neurosurgeon recommended this over a year ago. The whooshing sound and weird rushing in my head is only getting worse.  I notice more and more my eye sight and balance are not what they used to be. It is also quite possible that the screws from my fusion are causing irritation and pain.

I was supposed to go and see a neurosurgeon in Virginia this month for a second opinion.  He is one of the best in his field.  Sadly I had to cancel.  Just to see him was $600, and on top of it there is travel.  The bad news is he is cutting way back on new patients.  So by me not going now, means I will probably never be able to see him.  This scares me.  I worry what if he was the only one who could truly help?  But I am trusting that God has this.  Aidan and I do need to see our neurosurgeon in New York.  I need to know how to best help Aidan, and figure out what both of us need done.  He just moved into a new office, and there are some major hoops to jump through just to get an appointment.  I have to take time to fill out all the paperwork and get it mailed.  The thought of this is a bit exhausting and overwhelming.  And even if we have appointments, how will we get there?

So so many of you have helped us over the years. I know our drama may seem never ending....and I understand those who have to move away from our lives.  I assure you though we do not take one thing for granted.  We are so grateful for those who help in love and prayers.  A good friend of mine who suffers from similar conditions set up a gofundme account for our family.  I felt so weird about this and still do.  I wish I could figure out how to do this all on our own.  The idea of any more travels for doctors or surgeries is crippling.  And asking for help is also very hard!  I will honestly tell you that any money that is donated is strictly for medical use. I have prayed and fought with myself over this for awhile.  I am humbled and honored that my friend would take the time to do this in her own sickness.  And I am beyond grateful for anyone who can help, even through prayer!

GoFundMe