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!!
Ladybug Secrets:Don't let the small stuff bug you. And Spot new opportunities.
Wednesday, April 8, 2015
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.
Posted by Melinda at 9:38 PM