Well, we finally got back from NYC last night. Thanks Mike for going with me on the trip--for all of your love, presence, service and awesome massages! Thanks also to Barb for going with us to the first programming. Thank you all for a fun Saturday night dinner and evening--Joe, Christine, Scott, Tonya, Mike, Barb, Juanathan, Pete, and Thin-Thin. Thanks also to Tonya for a great Sunday adventure--we went to where the ball drops in Time Square, The "M&M" Store (3 stories high!!!!), to see my first Broadway show and to eat at "The View"--that was so much fun and I ate enough to last me a couple of weeks (ok, ok, Margaret, a couple of days?).
The first programming went okay. Now we just have to sit and wait, and be VERY PATIENT! The honeymoon period is over so a lot of symptoms are returning, so some days are challenging.
Also, with the turning on of the machine, my speech has been affected so if you call and I don't answer or call back right away, I really do appreciate the calls and I will at least email you as soon as possible.
I will post some new pics as they come my way---but I am not sure I will be able to beat Mike's animated captions!?!?!?!?!
All my love and gratitude,
Millie
Tuesday, September 30, 2008
Friday, September 26, 2008
1st Programming! Officially Turned On!!
Well, Millie got her two devices (neural stimulators) turned on today!! She said she was a little nervous before we got to the hospital, but everything went fine during the programming.
The first Doctor (Bowman) said they first needed to check the devices. She had this blue thing that looked like an older type of palm pilot that said Medtronic on it. This Medtronic device had a wire connected to it and a smaller gray box at the other end of the wire. The gray box was placed over each side of Millie's chest on top of the devices that are in her body. She entered some settings on the blue box that were a starting point for dystonia patients. There are 4 settings for each box/device that's in Millies chest. Dr Bowman started on the device in Millies left side. She would change one setting at a time and after each change she'd ask Millie how she felt. She would ask if there is any numbness or tingling. Millie's answer was almost always no in regards to tingling/numbness, with the exception of one time with her right arm. Millie said her right arm felt a little weird, maybe tingly. Dr Bowman made a setting change and then Millie said it was fine. (note: the device in Millies left side controls the right side of her body) Dr Bowman said there were no problems at all and proceeded to do the device on the right side. The device on the right side went the same as on the left. There was one point when Millie said there was a little something and the Dr made a change that made the little something go away.
Millie needs to be careful with devices that have magnetics, such as some of those things that are in the doorways of stores to prevent theft. Another example is the magnetics on the door of a fridge! The reason is because these can sometimes turn her devices off. Millie received a remote control to turn the devices on if necessary though. It can also check the battery life of the remote control itself, the battery life of the devices in her chest, and verify if the devices are on or off. The batteries in her chest devices should last 3-5 years, which will then need to be replaced, which means another surgery adventure.
After all the programming was done Dr Tagliati came in and said a few things. He said the key is to be patient. He mentioned the first few programmings are best educated guesses and they start at low settings. He said sometimes patients see results after the 1st programming, but if you see nothing don't worry. He would like to wait at least 1 month to decide if the current settings are good or they need to be increased/decreased. He said it may take 1-3 years to see the FULL effect of stimulation. He said the good news is we can use ALL the necessary settings because there is nothing that is bothering Millie as far as the device settings go. He also said, look, from now on, it can only get better!!
Millie will return for her 2nd programming on Monday Nov 3rd.
Well, below are some pics from today, enjoy!
Love to all!
Mike
Here's Millie after breakfast ready for the hospital:
Here's Millie and Toeclog in the hospital room where the programming took place:
Here's Dr Bowman pretty excited at getting to level 16 on Tetris! After she finished that game she starting programming Millie's device:
Here's Millie surprised to have reached level 40!:
Here's the blue Medtronic device that was used to program the devices in Millies chest:
It's Millie and Barb!:
Here's a great shot of Millie:
And now that Millie has seen the programming done she's reading the directions to get the specifics on how to do it for Toeclog:
Here she is telling Toeclog everything will be OK:
Here's both of them posing before Toeclogs turn:
Here's Millie adjusting Toeclogs settings!:
Here's both of them happy after everything is done!:
The first Doctor (Bowman) said they first needed to check the devices. She had this blue thing that looked like an older type of palm pilot that said Medtronic on it. This Medtronic device had a wire connected to it and a smaller gray box at the other end of the wire. The gray box was placed over each side of Millie's chest on top of the devices that are in her body. She entered some settings on the blue box that were a starting point for dystonia patients. There are 4 settings for each box/device that's in Millies chest. Dr Bowman started on the device in Millies left side. She would change one setting at a time and after each change she'd ask Millie how she felt. She would ask if there is any numbness or tingling. Millie's answer was almost always no in regards to tingling/numbness, with the exception of one time with her right arm. Millie said her right arm felt a little weird, maybe tingly. Dr Bowman made a setting change and then Millie said it was fine. (note: the device in Millies left side controls the right side of her body) Dr Bowman said there were no problems at all and proceeded to do the device on the right side. The device on the right side went the same as on the left. There was one point when Millie said there was a little something and the Dr made a change that made the little something go away.
Millie needs to be careful with devices that have magnetics, such as some of those things that are in the doorways of stores to prevent theft. Another example is the magnetics on the door of a fridge! The reason is because these can sometimes turn her devices off. Millie received a remote control to turn the devices on if necessary though. It can also check the battery life of the remote control itself, the battery life of the devices in her chest, and verify if the devices are on or off. The batteries in her chest devices should last 3-5 years, which will then need to be replaced, which means another surgery adventure.
After all the programming was done Dr Tagliati came in and said a few things. He said the key is to be patient. He mentioned the first few programmings are best educated guesses and they start at low settings. He said sometimes patients see results after the 1st programming, but if you see nothing don't worry. He would like to wait at least 1 month to decide if the current settings are good or they need to be increased/decreased. He said it may take 1-3 years to see the FULL effect of stimulation. He said the good news is we can use ALL the necessary settings because there is nothing that is bothering Millie as far as the device settings go. He also said, look, from now on, it can only get better!!
Millie will return for her 2nd programming on Monday Nov 3rd.
Well, below are some pics from today, enjoy!
Love to all!
Mike
Here's Millie after breakfast ready for the hospital:
Here's Millie and Toeclog in the hospital room where the programming took place:
Here's Dr Bowman pretty excited at getting to level 16 on Tetris! After she finished that game she starting programming Millie's device:
Here's Millie surprised to have reached level 40!:
Here's the blue Medtronic device that was used to program the devices in Millies chest:
It's Millie and Barb!:
Here's a great shot of Millie:
And now that Millie has seen the programming done she's reading the directions to get the specifics on how to do it for Toeclog:
Here she is telling Toeclog everything will be OK:
Here's both of them posing before Toeclogs turn:
Here's Millie adjusting Toeclogs settings!:
Here's both of them happy after everything is done!:
Tuesday, September 16, 2008
Home Sweet Home!
Greetings from Atlanta!
Today it has been 2 weeks since my first surgery! I can’t believe it. I must admit that I was told by many, I read about it, the doctors told me, everything, but nothing can really prepare you for being awake while they are drilling holes in your head!?!?!? I haven’t quite found the word to describe that experience, but I am grateful it is over and done with.
First, I must say THANK YOU! Thank you to Life for the multitude of blessings I constantly receive. Thank you Barb for opening your home to me for me to stay during my surgeries and my recovery. Thank you Sheri for flying up with me and being with me during the first surgery and the few days after! Thank you Tonya for helping me during the weekends. Thanks Margaret for flying up and being with me during my second surgery and those OUCHIE nights! Thanks mom for your love and being with me during this challenging time. Thank you Susan for flying up with me for that first doctor’s appointment. Thanks to everyone for your visits—Mr.Ken, Pete, Scott, Juanathan, Christine, Tonya! Thanks for all the calls, the emails, the cards, the notes, the prayers! I know that operating room was filled with a multitude of Angels watching over me. ¡Gracias mi Abuelita por cuidar sobre mi! Thanks to everyone who has altered his/her schedule to help take care of me---I wouldn’t have been able to make it without you—Bill, Suzanne, Alix, Deb, Margaret, Sheri, Susan, Margie, Renie. Thank you for all of your donations. I will never be able to thank everyone or fully express my gratitude to everyone for everything! Above all, thank you all for your love! Many of you comment on my strength and my courage, but the the one thing that has gotten me through all of this is the unconditional love that I have received from everyone around me and the absolute faith in ALL THAT IS! I know how TRULY RICH I am because my Life is filled with so much love. Every morning, I put myself at service to Life—Thank You!
Today Sheri removed the bandages from the incisions from my chest and on Friday she will remove the staples from my head—there goes my idea of being Frankenstein for Halloween?!?! Humor makes everything that much easier! Next week I head to NY to be “turned on” and for my first programming session. Thank you Miguelito for taking me—I truly appreciate it!
I will post soon!
Thank you again and I adore you all!
Millie
Today it has been 2 weeks since my first surgery! I can’t believe it. I must admit that I was told by many, I read about it, the doctors told me, everything, but nothing can really prepare you for being awake while they are drilling holes in your head!?!?!? I haven’t quite found the word to describe that experience, but I am grateful it is over and done with.
First, I must say THANK YOU! Thank you to Life for the multitude of blessings I constantly receive. Thank you Barb for opening your home to me for me to stay during my surgeries and my recovery. Thank you Sheri for flying up with me and being with me during the first surgery and the few days after! Thank you Tonya for helping me during the weekends. Thanks Margaret for flying up and being with me during my second surgery and those OUCHIE nights! Thanks mom for your love and being with me during this challenging time. Thank you Susan for flying up with me for that first doctor’s appointment. Thanks to everyone for your visits—Mr.Ken, Pete, Scott, Juanathan, Christine, Tonya! Thanks for all the calls, the emails, the cards, the notes, the prayers! I know that operating room was filled with a multitude of Angels watching over me. ¡Gracias mi Abuelita por cuidar sobre mi! Thanks to everyone who has altered his/her schedule to help take care of me---I wouldn’t have been able to make it without you—Bill, Suzanne, Alix, Deb, Margaret, Sheri, Susan, Margie, Renie. Thank you for all of your donations. I will never be able to thank everyone or fully express my gratitude to everyone for everything! Above all, thank you all for your love! Many of you comment on my strength and my courage, but the the one thing that has gotten me through all of this is the unconditional love that I have received from everyone around me and the absolute faith in ALL THAT IS! I know how TRULY RICH I am because my Life is filled with so much love. Every morning, I put myself at service to Life—Thank You!
Today Sheri removed the bandages from the incisions from my chest and on Friday she will remove the staples from my head—there goes my idea of being Frankenstein for Halloween?!?! Humor makes everything that much easier! Next week I head to NY to be “turned on” and for my first programming session. Thank you Miguelito for taking me—I truly appreciate it!
I will post soon!
Thank you again and I adore you all!
Millie
Saturday, September 13, 2008
Back in the A T L
Millie is back in Atlanta. We flew home Friday. It was a long day. Millie is progressing well. She is doing a lot of sleeping. We took the bandages off today and Millie says she now has her Halloween costume figured out! Seriously, the staples will be gone this week and Millie is on the mend. Thanks for your comments. Millie enjoys reading them. Please continue your healing thoughts and prayers for a speedy recovery.
Above is a picture of Millie leaving New York in her fashionable do-rag, courtesy of Jen and Mark.
Love,
Maggie
Wednesday, September 10, 2008
Millie's new gear
Hi everyone,
Here's a new picture of Millie's new gear! She looks a little tired but - this has been quite an adventure. As always we thank you for your love and concern. Please do leave a comment so Millie can read it. Also, thank you again for all the donations - it means so much.
Love, Sheri
Surgery number 2!
Dear loved ones,
Sheri here with an update on Millie's second surgery. Yesterday the leads on the top of her head were connected to the wires that will run down each side of her head, behind her ears into her chest - where they will connect to her programmable boxes. She had general anesthesia for this part of the procedure unlike the first surgery which she was totally awake for. Imagine being awake while someone is drilling two holes in the top of your head! The vibrations were so strong they had to put a wad of gauze between Millie's teeth to stop them from chattering.
Anyway, this second surgery, although it is just soft tissue, will still be painful and Millie had a bit of a fitful night. I imagine tonight will be better. She was originally given codeine but she did not get along with that drug at all and got terrible nauseous. We are going to try Vicodine today - a synthetic formuation, and see if she tolerates that better. If not - it's back to Darvons and extra strength Tylenol.
I was with Millie from Saturday before the surgery to Thursday at Barb's, then Tonya came for the weekend and now Margaret will be there until Friday when they leave for Atlanta. Then Millie will be in her own home and bed until she must fly back to NYC for her very first programming appointment on the 26th. That is when they "turn her on" and we start to see the results of the surgery. Interestingly - they say there is a honeymoon period after the surgery where the post-op swelling in the brain causes the symptomatogy to abate. Indeed this had been truth for Millie. Her face and arm gesticulations have pretty much stopped and she is even walking a little better. We are all praying that this is a sign of the wonderful things to come when her boxes are turned on.
Here are a couple of pictures from Barbara which were taken before yesterdays procedure. You get to see Millie's head staples!
Here you can see that Toeclog is keeping close watch on Millie before she goes in for her second procedure!
Will all my love, Sheri
Sheri here with an update on Millie's second surgery. Yesterday the leads on the top of her head were connected to the wires that will run down each side of her head, behind her ears into her chest - where they will connect to her programmable boxes. She had general anesthesia for this part of the procedure unlike the first surgery which she was totally awake for. Imagine being awake while someone is drilling two holes in the top of your head! The vibrations were so strong they had to put a wad of gauze between Millie's teeth to stop them from chattering.
Anyway, this second surgery, although it is just soft tissue, will still be painful and Millie had a bit of a fitful night. I imagine tonight will be better. She was originally given codeine but she did not get along with that drug at all and got terrible nauseous. We are going to try Vicodine today - a synthetic formuation, and see if she tolerates that better. If not - it's back to Darvons and extra strength Tylenol.
I was with Millie from Saturday before the surgery to Thursday at Barb's, then Tonya came for the weekend and now Margaret will be there until Friday when they leave for Atlanta. Then Millie will be in her own home and bed until she must fly back to NYC for her very first programming appointment on the 26th. That is when they "turn her on" and we start to see the results of the surgery. Interestingly - they say there is a honeymoon period after the surgery where the post-op swelling in the brain causes the symptomatogy to abate. Indeed this had been truth for Millie. Her face and arm gesticulations have pretty much stopped and she is even walking a little better. We are all praying that this is a sign of the wonderful things to come when her boxes are turned on.
Here are a couple of pictures from Barbara which were taken before yesterdays procedure. You get to see Millie's head staples!
Here you can see that Toeclog is keeping close watch on Millie before she goes in for her second procedure!
Will all my love, Sheri
Wednesday, September 3, 2008
pictures from the anesthesiologist
Hello,
Here are pics from our great day together, looking forward to next week.
Best regards,
Irene Osborn, MD
Tuesday, September 2, 2008
Pictures!!!
These are pictures taken by Barb today. The first is Millie and Mom. In the next photo, Sheri is kissing Millie's naked head. The last two are "after" pictures. She's looking pretty good! Two holes in her head covered with Saran Wrap. The wonders of modern technology...
Out of Surgery
Millie is doing fine. The surgery went well. Textbook, they said. I spoke with her a brief moment. She said, "One down, one to go!" She was also hungry and they'll bring her something around 4pm.
Thanks for all the great healing energy and prayers. Thanks, Grandma!
Love,
Maggie
In Surgery
Millie is in surgery right now. She got her head shaved and the halo put on, then she went for an MRI and then off to surgery. Sheri says she was calm and ready. If there are any more updates, I will post them here. The surgery is expected to go until 1:00pm. Love to all and thanks for the prayers.
Love,
Maggie
Monday, September 1, 2008
Last Friday Night We Held a Healing Ceremony
I (Maggie), Suzanne and Alix spent last Friday evening with Millie in Atlanta before she left for her surgery in New York. While we were all around Millie and praying and sending her love and healing energy, something miraculous happened. Millie's grandma has always been very close with Millie. It's like they had a special connection. Last year grandma passed. When we were doing the ceremony, Millie and I asked Grandma to help Millie get through this. All at once, Grandma spoke in her native tongue, Spanish, through Millie. Alix, who also speaks Spanish, was there and spoke with Grandma. Here is what Alix recalls:
Grandma asked, "Can someone here hear me?
Alix writes: When I first heard that I believed it was Millie who was trying to deliver a message to all of us present at that moment, but after she asked a few more times I answered yes without being sure what was really going on."
Soon after I answered, Grandma said, "Please tell Millie:
• To light a candle and put a glass of water in preparation to your surgery. This is to remind you to have faith that everything will turn out fine for you.
• It is not your time, Mija. You need to be okay because you have a mission waiting for you.
• You will be speaking in front of many people, you will help many people to transform their lives and everything will happen because you transformed yourself.
• This whole process will last about 5 months and at the end of that term you will not recognize your body.
• Please thank all that matters and all who are here with you. Thank them for filling your heart with love and for teaching you to love.
• Thank also her teacher.
• Thank her Mama.
• Thank her Mama.
• Tell her she cannot be afraid because that interferes with the process.
• Tell her I will be there in that room along with her surgeons and I will be taking care of her.
• Tell her she can't be afraid and that I will come back when I am ready because I am not ready yet. I am finishing my training and I will come back."
Alix writes:
I wrote the closest of what I heard that night. As I was writing, the memory of the glass of water came to my head and I try to let other thoughts go for a moment to capture the essence of that moment, that was not only deeply emotional but magical.
Please add to the posting all my gratitude and my eternal love to Milagros Munoz.
Less than 24 hours
Hey Sher, What you thinkin'? Are you tellin' Steph how much we love her? Steph, we are thinking of you and we love you very much!
Hey, Jen-Jen and Mark, look what is on my keppie?!?!?!
We have been enjoying a beautiful day out! A gorgeous day, surrounded by friends and filled with love, what more could I possibly ask for?!
I love you all dearly!
Thank you all for all of the love and support that I have received! I am soooooo richly blessed and I am truly grateful!
With absolute and utmost love and gratitude,
Millie
Subscribe to:
Posts (Atom)
