God of the impossible... Maker of all miracles, I stand in awe You, I am so amazed by how You reach into my brokenness, make me beautiful again, I believe YES I believe NOTHING is impossible with YOU!!!
This is the chorus to a song one of my friends "dedicated" to me recently. They do a good job of putting my feelings into words!
On Monday (May 30)it was two weeks since my surgery. Last Wednesday (May 25) I went back to Philly to get the stitches and staples out of my head. I had noticed a very positive change in my neck movements only a few days after being at home, but my walking was not good at all. Wednesday morning I thought my walking seemed to be a bit improved. The pull in the trunk area was not so strong anymore. I walked into the office more normally than I had since I got sick. I was able to sit on a chair without a wall behind me to steady my neck. When my "programmer" walked into the room he was very pleased and exclaimed how straight I looked. He had me walk in the halls a bit and to his joy and amazement (AND MINE) I was able to walk well. After adjusting things a little more he sent me on my way. It seemed from there on things just progressed more and more. Thursday morning for my breakfast I was able to sit on a regular chair again.
We got word Friday morning that Dawdy (Grandpa Beiler) passed away. The big question was, "How am I going to be able to hold up to all the stress of the viewing and funeral". I hadn't been away from home (other than appointments and a few hours last Tuesday evening) since I came home from the hospital. Prayers ascended to My Heavenly Father on my behalf, pleading for strength and and grace to make it through the next few days without a major set-back! God graciously answered prayers in ways far greater than I could ever have imagined!!! I had a rocking chair at the viewing and funeral which really was nice... however, I was able to sit in the church pews when needed. I felt (still feel) like a walking miracle and I'm thoroughly enjoying every minute of it!!! :)
This evening I sat at the supper table on a regular chair... and even helped clear the table... things I have not done for over a year.
I have plans to head to Lancaster tomorrow afternoon for my cousin's wedding.
No words could ever say how VERY grateful I am to MY FATHER for His wonderful gift of health to me. Yes, there are still areas I hope to see improvement, but for now... I'm just thankful for the improvements I've seen so far.
My next appointment is June 15... from there on it will be up to us to decide how often we want to go back for adjustments. As of now, I still have quite a few restrictions (and one of them is driving) :). I am really hoping when I go the 15th they will allow me more freedom, until then I shall do my BEST to take care, but believe me I'm ready to put on my wings and FLY!!! :) Please keep praying...
*HEALER...HEALER... I'M RESTORED BY A HEALER!!!!*
Wednesday, June 1, 2011
Thursday, May 19, 2011
Hey everyone!! I am back again!!!!
Surgery went very well!!!! I am so glad to be home again and on the mend!!!
I am also very happy to report that we are two steps ahead of schedule!!! I got to have my battery packs turned on and get them adjusted once!!! They said I may not be able to feel a whole lot of changes because they are taking it so slowly!!! However, it should most definitely give me a big boost in the right direction.
Thanking God for a wonderful night and also the fact that the pain seems to be residing a bit!!!
Surgery went very well!!!! I am so glad to be home again and on the mend!!!
I am also very happy to report that we are two steps ahead of schedule!!! I got to have my battery packs turned on and get them adjusted once!!! They said I may not be able to feel a whole lot of changes because they are taking it so slowly!!! However, it should most definitely give me a big boost in the right direction.
Thanking God for a wonderful night and also the fact that the pain seems to be residing a bit!!!
Monday, May 16, 2011
Surgery Day
These were the facebook updates for today.
Posted @ 11:15 am: Crystal was taken for preop @ 8:00. Dr. Baltuch came to talk to us at 8:15 to let us know they are starting with the MRI. He came in again @ 11:00 to let us know everything is going fine so far. She's fast asleep and he will be starting the operation in about 15 minutes. Thank you for your continued prayers!!
Posted @ 2:00 pm: Dr Baltuch was just in again to let us know everything has gone good so far. PTL!! Both sides of electrodes have been implanted successfully. They are doing a scan now, then will proceed with the last procedure which is installing the 2 battery packs. It will take another couple hours.
Posted @ 5:30pm: Surgery is complete. Dr. Baltuch says "Everything went very well. She is awake and moving everything." She'll be in the recovery room for approximately one hour then we will be able to go see her!!! We can't wait!!!:)
Posted @ 8:30pm: She arrived in the ICU around 7pm and is looking good!:) When I asked her what I should write she said "Life is great...or not?" :) She is doing very well considering what she has been through. She is tired. We were impressed to have Dr. Strauss visit her this eve. He's from Lancaster and came down this evening to see her! Thanking God for directing the Dr's today!!!! Thank you for your prayers! It's great to have so much support!
Posted @ 11:15 am: Crystal was taken for preop @ 8:00. Dr. Baltuch came to talk to us at 8:15 to let us know they are starting with the MRI. He came in again @ 11:00 to let us know everything is going fine so far. She's fast asleep and he will be starting the operation in about 15 minutes. Thank you for your continued prayers!!
Posted @ 2:00 pm: Dr Baltuch was just in again to let us know everything has gone good so far. PTL!! Both sides of electrodes have been implanted successfully. They are doing a scan now, then will proceed with the last procedure which is installing the 2 battery packs. It will take another couple hours.
Posted @ 5:30pm: Surgery is complete. Dr. Baltuch says "Everything went very well. She is awake and moving everything." She'll be in the recovery room for approximately one hour then we will be able to go see her!!! We can't wait!!!:)
Posted @ 8:30pm: She arrived in the ICU around 7pm and is looking good!:) When I asked her what I should write she said "Life is great...or not?" :) She is doing very well considering what she has been through. She is tired. We were impressed to have Dr. Strauss visit her this eve. He's from Lancaster and came down this evening to see her! Thanking God for directing the Dr's today!!!! Thank you for your prayers! It's great to have so much support!
Wednesday, May 11, 2011
Surgery Day is ALMOST here!!!! I am just so ready for a change of life-style. I do try to tell myself not to dream or plan too big especially for the next couple months, but sometimes I just can't help it. I have no doubt the doctors will do their very best in directing me to a more normal life as quickly and smoothly as they know how, but really any benefit or addition to the quality of my life-style is completely up to my Heavenly Father!!!!
Plans are as follows:
Dad, mom and I plan to drive to Philly Sunday evening and stay at a bed and breakfast for the night. We will only have a few blocks to the hospital, which will be very nice.
I am to be at the hospital at the early hour of 6:30. From what I understood, they will be taking me to the operating room around 9:30. I really don't know a lot about what's going to be happening between 6:30-9:30, but with my movements I will most likely be put out or heavily sedated most of the time for a quicker and easier prep time. I do know that sometime right before they take me into the OR they will do an MRI of my head and brain, which they will then use to determine the exact spot for the implantation of the electrodes. That part of the procedure is the most tedious due to the fact that the electrode must be at the EXACT center of the peanut-sized target spot. I was told they will have me under anesthesia for this part, however they will monitor it very closely as they will probably wake me up after each side is complete to check for tingliness and maybe a few other things. It sounds crazy, but they said I will be out just enough that I won't know what's happening but not too much so when they want to wake me it won't take long!!! After the electrodes are implanted they will give me a full dose of anesthesia after which they will insert the battery packs (one on each side of my chest just below the collarbone) and also the connecting wires. Monday night I will be in ICU. Tuesday sometime I plan to be moved to the recovery room. I'm hoping to come home again on Thursday or for sure Friday. I will then need to return the following Wednesday (May 25) to turn the batteries packs on and to take the staples and stitches out. Two weeks later (June 16) I need to go back to adjust the simulator for the first time and also close the surgery case. From there on out I will need to return as often as 'programmer' says to turn the stimulator up.
It's rather unpredictable as to how long the surgery takes, just depends how fast they can find the target spot for the electrode. I think nine hours at the most and maybe like six at the least?!
A few questions you might have....Will they shave any hair...will you be able to see the wires or anything...how soon will I see/feel changes...what does recovery consist of...????
They may need to shave a bit of hair behind and above my ear where they make the incision for the wire...the two nickle sized incisions made just a little behind my front hairline for the electrode implantation's will be made by parting my hair (they don't cut deep and they will just lay the skin back and use a little (drill) to tunnel the electrodes down. They will put small caps over the holes, then staple the skin back in place. I will be able to feel two small bumps from the caps but you will not be able to see anything, the battery packs are a little the same way, she did tell us that we may be able to see the wire some. Changes.... maybe some right after surgery (rather unlikely). There's a bigger chance of seeing slight changes after they turn the batteries on. I really have no way of telling how things will go from there. Recovery time... since none of my incisions are very deep that part should not be too bad. I will need to be very careful the first month following surgery. My head should never go below my heart because any extra pressure of any kind in my head could be dangerous. Of course any sports or such thing are strictly forbidden!!! :)
As far as visitors... the nurse said I may enjoy some at the hospital, but most likely more after I'm home. I hope they will allow me to have my cell phone in the recovery room so if someone would like to come see me, it might be good to call me before coming.
I want to thank everyone for your prayers so far! God is giving me grace to face this trial and while looking on it's easy to wonder how I can cope so well, but please remember... God gives each of His children grace to go through whatever HE brings their way... I am just as normal a human being as everyone else...I don't understand why me, but I know I've grown in so many areas and still have things I need to work on! :) My prayer is that God would receive ALL the praise because I could never be who I am without Him!!! I have so many people praying for me... satan has to work hard to get to me thanks to my big band of 'prayer warriors' who are 'fighting' for me especially the many times when I felt no strength to fight for myself!!! You know... God calls some people to have the struggle to deal with and He calls some people to be the prayer warriors... BOTH have the same value!!! I will be forever grateful that Jesus was willing to take upon himself the sins of man-kind, being rejected by His Father when He needed Him most, making it possible to for us to share such a personal relationship with God!
I have two special prayer requests...
#1... they do have a re-chargeable battery that some people have been able to get with this surgery...I would really like to take that route because it would eliminate the 3-4 year battery change that would be required with the other batteries. Please pray that (LW)my hospital would receive permission for this as they have a bit of a problem getting it.
#2 We as a family went to visit dawdy (Beiler Grandpa) last evening!!! It was heart-wrenching. I hadn't seen him since Christmas and as much as I tried to prepare myself...the whole reality is just painful to think about. He is losing out fast, in some ways it feels like a bad dream and I really want to wake up and find everything is OK. We are so grateful that he doesn't have much pain...he just wants to sleep!You know it's bad if he can't even remember everybody's name...Colleen had to tell him her name and he got a little mixed up with Kendrick too!!! Please pray especially for mommie, it was such a tear-jerker watching her so lovingly doing her BEST to care for him and make him comfortable!!!
May God bless you all with a wonderful weekend!!! I will do my best to keep updates coming in the next few days, weeks, and months. My aunt Sharon plans to keep you all updated on Monday as they get reports on the different phases and all...
Plans are as follows:
Dad, mom and I plan to drive to Philly Sunday evening and stay at a bed and breakfast for the night. We will only have a few blocks to the hospital, which will be very nice.
I am to be at the hospital at the early hour of 6:30. From what I understood, they will be taking me to the operating room around 9:30. I really don't know a lot about what's going to be happening between 6:30-9:30, but with my movements I will most likely be put out or heavily sedated most of the time for a quicker and easier prep time. I do know that sometime right before they take me into the OR they will do an MRI of my head and brain, which they will then use to determine the exact spot for the implantation of the electrodes. That part of the procedure is the most tedious due to the fact that the electrode must be at the EXACT center of the peanut-sized target spot. I was told they will have me under anesthesia for this part, however they will monitor it very closely as they will probably wake me up after each side is complete to check for tingliness and maybe a few other things. It sounds crazy, but they said I will be out just enough that I won't know what's happening but not too much so when they want to wake me it won't take long!!! After the electrodes are implanted they will give me a full dose of anesthesia after which they will insert the battery packs (one on each side of my chest just below the collarbone) and also the connecting wires. Monday night I will be in ICU. Tuesday sometime I plan to be moved to the recovery room. I'm hoping to come home again on Thursday or for sure Friday. I will then need to return the following Wednesday (May 25) to turn the batteries packs on and to take the staples and stitches out. Two weeks later (June 16) I need to go back to adjust the simulator for the first time and also close the surgery case. From there on out I will need to return as often as 'programmer' says to turn the stimulator up.
It's rather unpredictable as to how long the surgery takes, just depends how fast they can find the target spot for the electrode. I think nine hours at the most and maybe like six at the least?!
A few questions you might have....Will they shave any hair...will you be able to see the wires or anything...how soon will I see/feel changes...what does recovery consist of...????
They may need to shave a bit of hair behind and above my ear where they make the incision for the wire...the two nickle sized incisions made just a little behind my front hairline for the electrode implantation's will be made by parting my hair (they don't cut deep and they will just lay the skin back and use a little (drill) to tunnel the electrodes down. They will put small caps over the holes, then staple the skin back in place. I will be able to feel two small bumps from the caps but you will not be able to see anything, the battery packs are a little the same way, she did tell us that we may be able to see the wire some. Changes.... maybe some right after surgery (rather unlikely). There's a bigger chance of seeing slight changes after they turn the batteries on. I really have no way of telling how things will go from there. Recovery time... since none of my incisions are very deep that part should not be too bad. I will need to be very careful the first month following surgery. My head should never go below my heart because any extra pressure of any kind in my head could be dangerous. Of course any sports or such thing are strictly forbidden!!! :)
As far as visitors... the nurse said I may enjoy some at the hospital, but most likely more after I'm home. I hope they will allow me to have my cell phone in the recovery room so if someone would like to come see me, it might be good to call me before coming.
I want to thank everyone for your prayers so far! God is giving me grace to face this trial and while looking on it's easy to wonder how I can cope so well, but please remember... God gives each of His children grace to go through whatever HE brings their way... I am just as normal a human being as everyone else...I don't understand why me, but I know I've grown in so many areas and still have things I need to work on! :) My prayer is that God would receive ALL the praise because I could never be who I am without Him!!! I have so many people praying for me... satan has to work hard to get to me thanks to my big band of 'prayer warriors' who are 'fighting' for me especially the many times when I felt no strength to fight for myself!!! You know... God calls some people to have the struggle to deal with and He calls some people to be the prayer warriors... BOTH have the same value!!! I will be forever grateful that Jesus was willing to take upon himself the sins of man-kind, being rejected by His Father when He needed Him most, making it possible to for us to share such a personal relationship with God!
I have two special prayer requests...
#1... they do have a re-chargeable battery that some people have been able to get with this surgery...I would really like to take that route because it would eliminate the 3-4 year battery change that would be required with the other batteries. Please pray that (LW)my hospital would receive permission for this as they have a bit of a problem getting it.
#2 We as a family went to visit dawdy (Beiler Grandpa) last evening!!! It was heart-wrenching. I hadn't seen him since Christmas and as much as I tried to prepare myself...the whole reality is just painful to think about. He is losing out fast, in some ways it feels like a bad dream and I really want to wake up and find everything is OK. We are so grateful that he doesn't have much pain...he just wants to sleep!You know it's bad if he can't even remember everybody's name...Colleen had to tell him her name and he got a little mixed up with Kendrick too!!! Please pray especially for mommie, it was such a tear-jerker watching her so lovingly doing her BEST to care for him and make him comfortable!!!
May God bless you all with a wonderful weekend!!! I will do my best to keep updates coming in the next few days, weeks, and months. My aunt Sharon plans to keep you all updated on Monday as they get reports on the different phases and all...
Thursday, April 21, 2011
Great is Thy faithfulness.... Lord unto me!
I was at my nutritionalist on Monday. Report was much much better than a month ago when I was there! I am Lyme FREE, but even more exciting... the Mono is almost gone too!!!! THANK-YOU Lord Jesus!!!!
I would appreciate prayers for Monday (the 25th). We plan to meet with a neurologist in Philly at 9:00. At 10:00 we need to go to the hospital (only like a block ?up?...I think) to do pre-admission testing and all that comes with that. We have like 3 hours to drive one way, and they said it could take up to three hours just for the testing. Looks like a big day but trusting God will give me strength to get through it.
Also, with the mono almost gone, and the movements still not quite as good as last fall, there must be something else wrong. We feel it's because I came off clonazipam. I didn't think it really helped very much and it made me a little loony. It turns out it did help more than we thougt it did. We are hoping that the neurologist on Monday will have some good advice concerning that.
Happy Easter!!!!
I was at my nutritionalist on Monday. Report was much much better than a month ago when I was there! I am Lyme FREE, but even more exciting... the Mono is almost gone too!!!! THANK-YOU Lord Jesus!!!!
I would appreciate prayers for Monday (the 25th). We plan to meet with a neurologist in Philly at 9:00. At 10:00 we need to go to the hospital (only like a block ?up?...I think) to do pre-admission testing and all that comes with that. We have like 3 hours to drive one way, and they said it could take up to three hours just for the testing. Looks like a big day but trusting God will give me strength to get through it.
Also, with the mono almost gone, and the movements still not quite as good as last fall, there must be something else wrong. We feel it's because I came off clonazipam. I didn't think it really helped very much and it made me a little loony. It turns out it did help more than we thougt it did. We are hoping that the neurologist on Monday will have some good advice concerning that.
Happy Easter!!!!
Friday, April 15, 2011
I apologize for keeping you in suspense for so long. I had a good visit on Tuesday! I got to meet a few members of the team I"ll be working with! So far they are GREAT!!! Surgery date is.... MAY 16!!! ...more details on that later...
I'm sooo ready to move on with life again! I kind of feel like I'm on a roller-coaster...better, sick again, better, sick again...etc. etc.!!! Somehow physical/emotional roller coasters don't give the thrill the real rides have!=)
Please pray that the mono would improve as there is the possibility of it hindering surgery! If, for any reason we would have to cancel the appointment, the next available appointment may not be till July!!! =(
Thankful this is all in God's hands! He knows what He's doing!
I'm sooo ready to move on with life again! I kind of feel like I'm on a roller-coaster...better, sick again, better, sick again...etc. etc.!!! Somehow physical/emotional roller coasters don't give the thrill the real rides have!=)
Please pray that the mono would improve as there is the possibility of it hindering surgery! If, for any reason we would have to cancel the appointment, the next available appointment may not be till July!!! =(
Thankful this is all in God's hands! He knows what He's doing!
Monday, April 11, 2011
Wellll...here goes!!! My appointment to meet with some of the doctors and nuses who will most likely be assisisting with the surgery and follow-ups that come with it!!! I've already givin up trying to sort through all the different emotions that I am feel!!! =) My appointment is at 10:00 Wednesday morning.
A few specific prayer requests...
1. my mono would 'behave' so my muscles can be more relaxed and less tight and painful...
2. I could be ok and able to handle any details I should know..mostly feared are the 'gorie' ones... (I am ever so greatful that there are people who enjoy the 'alarmingly gorrie' things in life.. I tend to think there is likely is someone out there who has an extraordinary 'enjoyment' of such things, because they took all mine!!) =)
3. that I would trust God, no matter the outcome
I thank God for the way He has MANY times in the past helped me through tough, scary things... And know with all my heart He will do that just that once more!!
A few specific prayer requests...
1. my mono would 'behave' so my muscles can be more relaxed and less tight and painful...
2. I could be ok and able to handle any details I should know..mostly feared are the 'gorie' ones... (I am ever so greatful that there are people who enjoy the 'alarmingly gorrie' things in life.. I tend to think there is likely is someone out there who has an extraordinary 'enjoyment' of such things, because they took all mine!!) =)
3. that I would trust God, no matter the outcome
I thank God for the way He has MANY times in the past helped me through tough, scary things... And know with all my heart He will do that just that once more!!
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