Back to the tube

I just wanted to give a quick update to you all. Over the last week and a half I have had a lot of symptoms return. This has given me obvious concern and worry. I had a Dr. appt yesterday and he said I really need to give it a few months, it hasn't even been 1 month yet. I will go for a follow up MRI this Thursday to confirm that the surgery did make the room for my brain as it was supposed to. They will also be confirming that I do not have a syrinx, which is a fluid filled tumor on the spine that can cause some of the symptoms I have had return. He feels confidant that I don't but just want to rule it out.

I am glad the sun is shinning today, the rain was getting old. I am really trying to keep myself in a "good" place and not let my fears get the best of me. I just pray that time will bring me relief. PATIENCE! Those of you that know me well are probably laughing now knowing that I have NO Patience.

Hope you are all well! My little Lexi turned 3 this weekend! We had a family party at my in-laws, it was so nice to feel normal for the day and be with family.

Not a lot going on :)

The last few days have been pretty good. I truly am feeling better everyday. I am just a little nervous and praying lots about some returning symptoms. I have a couple of things that "are back" but I am not freaking out about it yet. The Dr told me it took a while for these symptoms to occur so it could take a while for them to leave. It is just strange that the first week I felt none of them. Maybe it was just the pain in my head was more severe so I didn't notice, who knows. I just pray this is temporary and soon on it's way out of my life.



Either way things are good. I had a dear friend come to the house today to cut my hair so I look a little less like a skater from my 8th grade class. Thanks Jenn M!!!!! Now it looks much better and isn't as obvious. As long as there isn't a big gut of wind my comb over effect will go unnoticed.



Hoping I can sit outside this weekend and enjoy the weather while the girls play. Just hard to remember that just because I feel better doesn't mean I am healed. The healing process takes so long because of the internal healing necessary. My neck muscles were all cut in order to get to the portion of my skull they needed to get to. I am getting more and more range of motion in my neck everyday and the swelling is much less.



I'm pretty boring for the most part. Enjoying all the gorgeous flowers that have bent sent, THANK YOU ALL!!! I am so grateful for the people in my life. I am blessed to work for an amazing company (Kohler) who has been very supportive during this difficult time. They also sent me an amazing flower arrangement, Thanks Indy branch! The support we have received is indescribable. God has truly blessed my life with wonderful people, not a day goes by that
I don't appreciate that. My family has been there every step as well. My mom "babysits" me during the day everyday with Art stopping in to visit us and bring us lunch sometimes! My in-laws come early in the morning to help Pat get the girls ready and everyone out the door. And then there is Pat! He has been everything for me and the girls and never has a complaint. I don't know what this experience would have been like without these particular people as a part of it.

Have a great weekend!
Amy

Stitches out

11th day and stitches are out! I have been feeling a little better everyday, but slow paced. I actually watched tv today for the first time since I have been home. Sitting up is not comfortable, well laying down isn't either but it is more do-able.


Since returning home I have realized I have super sonic senses! My hearing is so sensitive I have to walk around my house with Kleenex stuffed in my ears, that is when I am downstairs. The girls think this is pretty funny looking. The TV and computer also make my eyes hurt, so I don't do either very often. Food doesn't taste good, well egg drop soup has been the only oldie but goodie. This reminds, I need to tell you guys about finding my "goon" I will fill you in on that later. This will all even out over time, but really weird for now.

The Dr. said I am healing really well and everything I have experienced so far is normal. After my body evens out and replenishes the spinal fluid lost during surgery things should start to feel normal again. Knock on wood I haven't had any of my previous symptoms sense my surgery.

I am able to spend more and more time with the girls each night. Lexi and I laid in bed and held hands watching a movie and it was WONDERFUL!!!! Lani just got in my lap tonight for the first time. I hope to have dinner with them tonight after they go play for a while. Although they are 1 & 2 yrs old they totally get it. Lexi always asks if my boo boo feels better and Lani looks at the back of my head to see if there is still something there.

It was nice to feel up to visiting with a friend for a bit today. Tracy said said she felt like she was at the spa when she walked in my room. Lights out, nice breeze, meditation music (thanks Jamie) and of course the Sage and Cirtus candle burning (thanks Jenn). Minus the facial, massage, cut and color it was an Aveda experiance. I know I keep saying it but I look forward to everyday and seeing what feels better!!!

Breathe by Breathe, Day by Day

Everyday will get better. I keep reminding myself of that every minute of the day. I had no idea what to expect but WOW, this is more then I could have even imagined. Breath through it and know that it will only get better from here. Still can't believe that I have had all this happen, very surreal feeling.

I sleep alot, which is good for my healing process. I am just having some trouble figuring out what drugs work the best. The really good ones I can't take at home without medical supervision because they can cause neurological changes. When I was in ICU for a few days they check my nueros every hour confirming I wasn't having a reaction from the surgery or drugs. Although I always passed I still can't take them a home. So I am trying to figure out what works best and get into a pattern. In due time.

Well the pic is attached, please don't throw up! My brother mentioned it was about 6 inches, I think it is more like 10. That is the least of my worries, but was shocked when I saw the pic. I will have to figure out what to do with this hair now. I was planning to cut it prior to surgery but didn't get it done. I still have bandages covering everything, this was taken while they were changing them. I will get my stitches out on Monday. Well off to lala land.

Thank you all so much for your kinds words, thoughts and prayers. I couldn't have made it this far without each and everyone of you. Loves to you all!!!!

I also had to show you that I still threw some bling in the mix at the hospital.

Settled in at Home

I wanted to let everyone know that I am home!!! I don't feel so hot as you can imagine, so I will try to write more later. If your stomach can take it I will also show you a picture of my incision. Sorry to be so short, but I am back to bed. Thanks for everything. So glad to be home, just have to get the pain management figured out. Chat soon!
Amy

Post-surgery Update: Day 3

Today is Amy's third day in the hospital: She currently remains in the ICU. She is doing fine, but has had a couple of difficult days since the surgery. She has had extreme pain and some high blood pressure issues. Both which are normal. Yesterday was Amy's worst day thus far: She had an allergic reaction to a medication that they had given her which made her already severe headaches worse. Friday and Saturday (on the scale of 1 - 10) her pain levels were alternating between 7 & 10, but thankfully today her pain has mostly subsided and she said it is as low as a 3. Besides feeling much much better and more normal, this morning she was able to walk around the ICU unit and sit up in a chair for an hour and a half. The doctors had been telling her the first 2 days were going to be the most difficult in regards to pain management, but right on schedule, the pain has seemed to diminished greatly.

Hopefully soon she will be moved out of the ICU and into a regular room and she will hopefully be going home in a few days. Once again the family wishes to thank everyone for all of their generosity, prayers, and healing energy, but we would again like to request to please refrain from visitations at this time as Amy is not quite up for visitors.
Love,
Shawn (her brother)

Surgery Update: Status 1

Greetings:
Good News! Amy's family has just met with the surgeon to inform us that the surgery went fine. She went in around 7:30am (K.C. time) and was out by 9am-- quicker than expected. The surgeon, Dr. O'boynick, said that-- per the typical procedure for this condition-- a small part of the base of her skull was shaved away as well as a portion of her C1 vertebrae. A membrane made from cow cells is then put over this area as a kind of patch. This is all done to allow the brain tonsils which are currently getting crammed into her vertebrae enough room to not interfere with her body's neurological functioning. The Dr. said they looked behind these tonsils to make sure that her spinal fluids were flowing correctly and they were. (One symptom of the Chiari malfunction can be blockage of the spinal flow which, thankfully, Amy does not have.) She has approximately a 6" incision at the base of her skull and top of her neck indoctrinating her in the world of "Zipperheads"! lol

Currently she is in the intensive care unit and is doing fine. She will be in the ICU for a day or two to monitor her.

The family and hospital staff is asking visitors to please respect the Dr.'s wishes and give Amy the rest and solitude that she needs. Once Amy is home she may be up for visitors, but right now she needs to focus her energy on getting healthy. The surgeon mentioned that she may be able to come home as early next week.

Thank you so much for all of your prayers, energy, and well-wishes.
Love,
Shawn (her brother) & Pat (her husband)

Tomorrow, the beginning of a NEW me

Tomorrow is the beginning of a new me! I have been in pain for so long I truly look forward to relief that is in my future. The surgery being performed is to relieve the pressure on my brain by removing a portion of my skull and minimizing my C1 and possibly C2 vertebrae. Where the skull is removed a membrane patch will be attached for protection. There will be physical therapy during my recovery in order to get the neck muscles back to full working motion. This is going to be a very long recovery process and REST is very important. I look forward to visitors after getting home and settled. I will let you all know when I am "visitor" ready. Thank you for your understanding.

I must admit that I am very anxious, but I want to get this all past me. I received a phone call from Adam Hamilton, the pastor of my church and it was very comforting. I shared my fears with him and he helped put it all into perspective. I feel so blessed to have had the opportunity to share my thoughts with him and pray with him.

I have to say THANK YOU one more time for all that everyone is doing for my family. God is good and has blessed me with so many fabulous friends and family. I know my girls are in good hands and will have so much fun with their aunties while I am in the hospital!!!

Love to you all!

Amy/Shelly