New mailing address...
Fisher House
Ben and Katie Rye
PO Box 1886
Los Altos, CA
94023
Sunday, March 28, 2010
Through it all...
A hymn that my dad reminded me of and I have come to love...
Through It All, Through It All
I’ve had many tears and sorrows,
I’ve had questions for tomorrow;
There’ve been times
I didn’t know right from wrong,
But in every situation
God gave blessed consolation;
That my trials come
Only to make me strong.
Through it all, through it all,
Oh I’ve learned to trust in Jesus,
I’ve learned to trust in God.
Through it all, through it all
I’ve learned to depend on His Word.
I’ve been to lots of places
And I’ve seen a lot of faces
There’ve been times I felt so all alone
But in my lonely hours
Yes those precious lonely hours
Jesus let me know I was His own.
I thank God for the mountains
And I thank Him for the valleys
I thank Him for the storms
He brought me through
For if I’d never had a problem
I wouldn’t know that He could solve them
I’d never know what
Faith in God could do.
Through it all, through it all,
Oh I’ve learned to trust in Jesus,
I’ve learned to trust in God.
Through it all, through it all
I’ve learned to depend on His Word.
Saturday, March 27, 2010
7 months ago...
I waited patiently for the Lord to help me,
and he turned to me and heard my cry.
He lifted me out of the pit of despair,
out of the mud and the mire.
He set my feet on solid ground
and steadied me as I walked along.
He has given me a new song to sing,
a hymn of praise to our God.
Many will see what he has done and be amazed.
They will put their trust in the Lord.
Psalm 40:1-3
Yes folks today marks our 7 month mark! Wow, I never thought so much could take place in 7 months! An accident, holidays, trips back to WA, family and friends coming to visit, move to WA, be around family, move to CA and so much more all wrapped up in this short yet seems so long amount of time! God has also done alot in our lives during this time! He continues to heal Ben, work in my heart, bring peace, bring thankfulness, surround us with wonderful people, bless us way beyond what we deserve, love us even when I don't want to love Him, and so many more things! Jesus has been faithful to us and has shown us so much love.
I still have bouts of thoughts and emotions that come my way! I still have the question of not so much why but how much longer Lord are you going to have us on this journey? I wonder all the time why He would allow this to happen to us. We serve Him, we serve others, Ben serves his country and gives selflessly to all of us...why pick us?? Oh that question lags on but for some reason when it comes to me over and over I never have an answer but I always have peace. I don't know sometimes what I would rather have...answers or peace? I think to myself, God, you did not have me wait 27 years to get married and wait to have babies and build a life as a couple ot live it in a restricted way of wheel chairs and yes/no answers with fingers! But this is what is now. Do I like it everyday...heck no, but when Ben and I are laying beside each other and he lays his head on my shoulder or gives me big lip kisses then that day it is worth it! I still have the faith and believe that Jesus is going to heal our Ben 100%...but it has to be in His timing.
I went to the beah today for some me time and time to just be with Jesus. I sat in the sun against some rocks and sang a few familiar songs and just asked for Him to speak to me. I was able to write down a few things that I felt the Lord was speacking to me. As I was walking back to my car (now a red, ford focus.) I was thinking, one part of me is so freaked out and shattered that I am not in control of what is going on because this is so not what I planned in life! If I had my way and it was all in my control Ben would have walked out of the first hospital he was in back in GA!! The other part of me is so relieved that I am not in control because I can sit back and relax (for the most part) and watch God do all the work! His way may be A WHOLE LOT slower then mine but He is way into detail. I would just be patching Ben up and saying...you look good, that will do, okay let's go but when Jesus is fixin things He is all about the detail and getting everything perfected! I am not a perfectionist but He is! So seven months later here were are...God is still in the perfecting business and on His time whether I like it or not!
Ben continues to do well. We have been outside in the beautiful gardens several times and Ben is soaking in the sun! He is trying so hard to stay awake and is much better at opening his eyes when they ask him to...way better then he ever has! The therapists and doctors are doing VERY thourogh exams on Ben which I am very impressed with! So, in the last blog I said they would be taking him off some of the uneaded meds and so far they have taken him off 3! They are tapering his blood pressure meds and the neuro doc is going to start tapering him off the most sedating seizure med on Monday and see how he does! This is a huge answer to prayer to get him off these meds and also taper his seizure meds! Yay God!!
I have settled in a bit. Organized my room, bought some food, met a few people and so on. I have been sick since the night we got here. I think it was allergies at first but it has gotten worse! This makes it so I cannot spend as much time as I want but I did this evening. I went out and bought fresh OJ, Vit C, all natural cough drops and a few meds today. Hopefully that will kick it in the bumm!
One of the biggest things I am going through is a bit of lonliness. Ben and I have been surrounded by family and friends both in GA and WA and here I know nobody! It is hard but I am dealing! I have a few weekend plans coming up which will be wonderful but during the week it gets a tad lonely! I got booted out of Ben's PT/OT today so they could do evals so then I really don't know what do to...well like I said today I went to the beach!
Prayer requests -
1. Ben's seizures would be control and continue to diminish as they taper off his meds.
2. Ben would continue to stay awake!!
3. Muscles and joints would loosen
4. Neck and head control would improve (thinking about more Botox to the neck)
5. Swallow would improve so they can advance Ben to a better diet
6. I would start to feel better
7. My heart and lonliness
Blessings to you all!
Katie and Ben
PS...the photo of Ben above was taken about a month ago while in WA! I thought I would post it in honor of our 7 months of being alive! He is a lil over 180lbs and still has alot of his sexy muscle! To me he looks amazing! I believe that he is the most HANDSOME MAN EVER...sorry to all you men out there...Ben has you beat!! :)
Tuesday, March 23, 2010
Welcome to sunny California...
Thank you for all of your prayers for us on the next leg of our journey! We made it safely and are settling in! I will start with yesterday with some updates on the trip...
Monday - Ben and I were scheduled to be picked up at 0845 at the hospital in WA. We were greeted around that time by 2 ambulance crew and one flight nurse and flight paramedic. I was super excited to see that the flight crew were the same two that transported Ben on the trip from Atlanta to WA! What a blessing that was to have them! We were transported to an airport in Tacoma and took off from there! We were in the air for about 1.5 hours and then landed in San Jose. Ben did great! He only slept for about 30 min and seemed to enjoy all that was going on. About 30 minutes after that we were in Palo Alto and Ben was settled in Bed! We were greeted at the airport by the Special Forces Advocate and a Major from the VA. Both were kind to help us get settled in! Ben's room is called the luxury suite because it is big, at the end of the hall and has 2 large windows! After Ben got settled a bit we got my stuff in my room. It is a perfect location because not only is it right across the street from Ben, it is upstairs and diagonally across the street from Ben! I can look out my window and see his room window! Later in the afternoon one of the Case Managers took me to go and get the rental car they are providing for me! When we got there they said that they were out of cars and would I mind a mini van! I about died when I heard that because Ben and I had always laughed in the face of mini vans...we would never buy one and for sure not rent one! So, I ended up with a Dodge, red one...oh do I look hidious! Anyway, they said it was just for the day and that I could bring it back the next and get a car! I then was able to bust out my new (and pretty trusty) GPS and find a Target and Trader Joes to get a few supplies and much needed food! In the evening I was able to just chill with Ben and stay with him until 9pm! It was so good to be with him in the evening and not feel like I had to drive home before I got to tired! I think the funniest thing that happened to me besides the mini van is that when I went to go to bed I heard rattling under me only to discover that there was a plastic mattress pad under the sheets! Ummm, it has been YEARS since I needed plastic!! Haha, anyways it will come off the next night!
Tuesday - I headed over to be with Ben about 10am (yes, I slept in a bit) and OT/PT were there to check him out and do a small evaluation on him. He was pretty sleepy but able to follow alot of their directions. They then got him in his loaner chair (his is being shipped) and he woke up a bit more. After they left I got to brushing Ben's teeth because that always wakes him up a bit more!! Poor guy, I have found his ways! About 30 minutes later one of his speech therapists came in and did an evaluation with Ben! Ben did amazing! He got 100% on his eval! Well, technically he got 95% because he failed the speaking part! Besides the speaking Ben did great and the therapist was very impressed! I had a great greeting with Ben's new doc and he is very positive and all about geting Ben further along in his healing! We talked for a bit and the plan as of right now is to get Ben off 5 meds that are not really needed anymore and 2 of those have sedative effects! Hopefully off those 2 Ben will be a bit more alert! Also his doc is consulting a neuro doc about Ben's seizure meds and also might trial Ben in a few weeks by decreasing a stimulant med. So, it was a very good chat with the doc and so good to hear some positive thinking and moving forward! Yeah God!!
Towards the afternoon I was so happy to take that red, nasty van back! I got there and told the guy what I was doing. Of course he was not the one I talked to yesterday and of course they had no cars! Oh my....another day with the mini! So, I will try yet again tomorrow!
Another huge blessing is that the weather down here is a-maz-ing!! It is sunny, warm and full of life! The only negative thing is that my allergies are flaring up!!
I wrote most of the above in my journal today and I couldn't help but be reminded of how much Jesus is looking after us! Everything from our room set-ups to Ben's doctor reports! God is looking out for ever little and big need and for that I am so grateful! He remembers those who are faithful to Him! Yea God...you are awesome!
Again thank you for all your prayers and encouragement! Love you all!
Blessings -
Katie and Ben
PS...I will post photos of our new living quarters soon!!
Friday, March 19, 2010
We are on the move...
(Ben and my niece Hallie last year!)
Just wanted to let you all know that our flight is set for this Monday!! We will be leaving in the morning and getting to the Palo Alto VA by noon! Yeah for a 2 hour flight and no time changes!!
I have a few things left to do on my "list" and a wedding, baby shower, time with my sisters, church and a lil family gathering...all before Monday morning! Oh my! I put on my facebook status yesterday...I think I can, I think I can, I think I can!! Well, all I can do is move forward...as hard as it gets, move forward!
Please pray for us during this transition! Ben and I will need it!!
I will be back to update you all this next week when we get settled!
Blessings!
Katie and Ben
Thursday, March 11, 2010
True bliss...
Ya'll are getting two blogs in one day! I forgot to mention the best part of my week! It took place this past Sunday! I went up to the hospital that morning and gave Ben a good shave and shower. Of course he was so relaxed that he slept for about an hour! I try and let him rest as much as possible (not sleep tons though) on Sundays because he has no therapies and needs that day of rest. Later that afternoon there was a movie on and I was on his left side. I asked if I could lay next to him and snuggle with him and he shook his head yes. I then asked Ben to point to the side he wanted me on. Ben pointed to his right side...his stronger side. As I went to go over to his right side Ben totally streched out his arm and I got next to him. When I got comfy Ben totally wrapped his arm around me and pulled me close. Ben has never done this before and my heart was melting. My head was right above his chin so Ben layed his head and chin on my shoulder. He leaned into me more and gave me some kiss noises and puckered his lips! Of course he got lots of kisses! This is the same day when I heard him say I love you the loudest! Breathy and hard to hear yes, but the hardest he has ever tried to get it out!
Oh God thought of me on that day and knew that I needed it alot that day! Ben also knew...he knows my heart just like Jesus does and exactly what I need!
Thank you Ben for your love...I love you with all my heart!!
Oh God thought of me on that day and knew that I needed it alot that day! Ben also knew...he knows my heart just like Jesus does and exactly what I need!
Thank you Ben for your love...I love you with all my heart!!
We may wait til He explains...
We may wait till He explains, because we know that Jesus reigns.
It puzzles me; but Lord, You understand and will
one day explain this crooked thing.
Meanwhile, I know that it has worked out for Your best,
It's very crookedness taught me to cling.
You have fenced up my ways, made my paths crooked,
to keep my wandering eyes on You. To make me what I was not,
humble, patient; to draw my heart from earthly love to You.
So I will thank and praise You for this puzzle,
and trust when I cannot understand.
Rejoicing You do hold me worth such testing,
I cling closer you your guiding hand!
...oh most days I am still puzzled as to what God is doing and why He chose us to go through this. There are so many reasons why He should not have picked us and that list could go on forever! I am sure that He has that ONE reason that He has chosen us to walk this path! Am I angry for it...no! Confused...some days! Hopefull that He is going to heal and restore...every stinkin day! When I get off of the trusting and faith path Jesus is so gentle in leading me back on to the right one of trusting, seeking and praising Him!
Ben has been doing really well over the past few days! He has been very awake and working really hard. I think all his hard work and being so alert has hit him today because he is a bit tired! In spite of being tired Ben pushes on even if his eyes are closed! Go Ben go!
PT got Ben up Mon-Wed this week to walk! On Tuesday he walked 150 feet! He still had alot of help but Ben's physical therapist said that Ben was helping out alot more and lifting his right foot more too! Another big thing on Tues is that Ben pedaled on the hand bike for 10 whole min!! The last time he did it was for only 4!! He was able to go both in a forward direction and backwards! He did wonderful! In speech they are trying to build his ab/diaphram muscles by getting Ben to blow a wistle, blow tissue and a few other things. He is able to make faint noises as he blows the wistle but when you plug his nose he gets a really loud wistle noise out!! Today in OT his therapist was asking about his truck. She asked him what color it was and he totally mouthed grey!! I have also been working on him saying I love you and the best one that I have heard was last Sat evening when I was taking off and today. If you put your ear up to his mouth and ask him to say it he does. It is very soft and breathy but you can tell that Ben is trying to push the words out with evreything in him!
Ben continues to eat pureed foods. They did another swallow evaluation in radiology last Friday and he failed it with solid foods but is still ok with pureed foods! Ben loves bananas and takes the biggest bites from them! This I am sure doesn't surprise any of you boys that know Ben so well. Ben could live of bananas and goldfish if he could! :) I try and give Ben something to eat everynight that I am there and get him to feed himself! He does pretty good with the first few bites and then he gets tired! I think he just likes that I feed him and that he can chill out in his chair and watch the Discovery channel!!
As of today we are stiil making headway on going to the VA. They are putting in the referals to transfer Ben and get his flight scheduled. Ben will probably fly down the same way that we did on the way up from GA. I am hoping to again fly with him! The date will either be the 19th or 22nd of this month. It freaks me out a bit to think we are making yet another move. It makes me question things...how will Ben adjust, what will his improvement be, will this place be good for him, what will they do different for him at this stage in his recovery, am I making the right choice to move us again?? I believe that this is where Jesus is leading us next in our journey but it doesn't always take away the questions, doubts and fears that I get! I have to remember to cling to Jesus and trust in Him...although hard sometimes when I cannot see two feet in front of us! According to me sometimes His timing is catastrophic but according to Him his timing is perfect!
Prayer requests:
~Ben's muscles will continue to loosen and work! That the tone (stiffness) will relax so that Ben can use his body as he needs to.
~Ben's head control...he still is working very hard to hold his head up but his right side of his neck is VERY tight and stiff. His muscles in the back of his neck and shoulders also need to be strengthened!
~Ben voice be loosed! He tries so hard to get just a hint of sound out! We need voice and words!
~Ben would rise up and WALK!!
~God would path the way to Cali and that things would fall into place!
~Peace of mind for me and strength to continue on this journey that is before us! My heart is with my Jesus and my Ben...I want to be strong in both relationships and keep the faith!
My new favorite quote..."It doesn't matter how many say it cannot be done or how many people have tried it before; it's important to realize that whatever you're doing, it's your first attempt at it."
Tuesday, March 9, 2010
A sister in need of prayer...
I was reading this update yesterday by a friend and I felt led to repost (I asked her permission) on here so that ya'll could pray for her and her man! Their journey with a traumatic brain injury started 3 years ago and soon will be going home. Her husband is "S" in this blog to respect his privacy. Please pray for this sweet couple and that the Lord be with her in these trying times!
"Defeat is not a word I like to use in any situations that didn’t turn out the way I would have wished them to be, but I can’t help but feel defeated. Today S and I got the green light to our transition back to Tampa and then eventually home to Birmingham. Dr. F was very sweet to sugar coat his “talk” with me. He feels like S is ready to transition home because he doesn’t need constant monitoring with the protocol, and though he was disappointed that S didn’t emerge to the point he would have liked, that S will continue with the protocol for one year. This will include each part of the protocol and then a knew trans cranial electric module. I need to get more information on that part of the protocol.
It still hurts to hear those words and leave here without S fully emerged. I still miss him each day like it was the first day he left me. I know that time is supposed to heal wounds but in this situation I feel like it numbs the feeling until events like this happen. I try so hard to keep a positive outlook on the situation but today I just feel very down. I am getting very anxious about moving S home, even though I am excited at the same time. I worry that I can not keep him healthy at home or that something will happen on my watch that could hurt him. I have so many anxieties that I know I shouldn’t have but I can’t seem to wane them. We are going home to a BEAUTIFUL home that will be well equipped to take care of S, but I still am very nervous. I wanted to take him home with more cognition. I feel like I have given S my all to find the best and newest treatments to get him better, but since he didn’t get that ultimate recovery, I can’t help to feel like I have failed him. I know that is silly, but when you love someone so completely and unconditionally, you can’t help but to feel that since you didn’t get the ultimate recovery, you somehow did fail.
I know that our transition to Tampa and then to Birmingham will not be the end of our journey. There are going to be future treatments and my commitment to get him those treatments. I guess my frustration is just another reason for me to get on home and establish myself in our new normal. I just miss my man so much and mourn for the life we didn’t have together. I sure do hope it gets easier."
Blessings!!
"Defeat is not a word I like to use in any situations that didn’t turn out the way I would have wished them to be, but I can’t help but feel defeated. Today S and I got the green light to our transition back to Tampa and then eventually home to Birmingham. Dr. F was very sweet to sugar coat his “talk” with me. He feels like S is ready to transition home because he doesn’t need constant monitoring with the protocol, and though he was disappointed that S didn’t emerge to the point he would have liked, that S will continue with the protocol for one year. This will include each part of the protocol and then a knew trans cranial electric module. I need to get more information on that part of the protocol.
It still hurts to hear those words and leave here without S fully emerged. I still miss him each day like it was the first day he left me. I know that time is supposed to heal wounds but in this situation I feel like it numbs the feeling until events like this happen. I try so hard to keep a positive outlook on the situation but today I just feel very down. I am getting very anxious about moving S home, even though I am excited at the same time. I worry that I can not keep him healthy at home or that something will happen on my watch that could hurt him. I have so many anxieties that I know I shouldn’t have but I can’t seem to wane them. We are going home to a BEAUTIFUL home that will be well equipped to take care of S, but I still am very nervous. I wanted to take him home with more cognition. I feel like I have given S my all to find the best and newest treatments to get him better, but since he didn’t get that ultimate recovery, I can’t help to feel like I have failed him. I know that is silly, but when you love someone so completely and unconditionally, you can’t help but to feel that since you didn’t get the ultimate recovery, you somehow did fail.
I know that our transition to Tampa and then to Birmingham will not be the end of our journey. There are going to be future treatments and my commitment to get him those treatments. I guess my frustration is just another reason for me to get on home and establish myself in our new normal. I just miss my man so much and mourn for the life we didn’t have together. I sure do hope it gets easier."
Blessings!!
Friday, March 5, 2010
I am back (for today)...
I got an e-mail saying that my computer was shipped...only to find out that it is being shipped from Shanghai, China! Well, HP must have a warehouse and place to build computers there! They say it should be here by the 10th of March! I am using my sisters computer so that I don't have to type on my minute iPod screen!
A few things before I get into what Ben has been up to! First, a few blogs ago I mentioned how God totally convicted me (really kicked me in the bumm) on how I was missing out on all the things he was doing in Ben now because I was so focused on the big tasks of walking and talking! I have had this in my heart all last week and God has been teaching me and giving me peace about it all. I still long and desire for Ben to do these things but he is doing BIG things now! God is still healing Ben and I need to see that and how Jesus is deciding to do it! So, if you have things going on in your life and are focusing on the end and how it will be done then you are going to miss out on what God has right in front of you! Look to what Jesus is doing right now and praise Him for it!!
Secondly, I am still amazed to how many people are responding to our blog, sending encouragement, sending notes and lifting up prayers....and many of you I have never even met or heard of before! I have been e-mailed encouragement, those sharing their own struggles and many on how a family member or close friend have had brain injuries! I am so grateful for you all and am glad that I can write about our journey and allow God to use it to touch many people and their faith! May it reach thousands and may many people come to know our Jesus, the Healer, protector, Father, and best friend...the list could go on!
And now for my Ben! He has been doing so well and is coming along! He has been more alert (unless he fakes us out with closing his eyes and ignoring us), trying new things and doing the best he can in his therapies! I will list some of the things he has been doing in Physical Therapy (PT), Occupational Therapy (OT), and Speech Therapy (SP).
PT - sitting at edge of mat and keeping himself up with no help for at least 5 seconds (this is a long time for him), he was harnessed in a Ligate walking contraption and he walked from a back mat, out the door and down the hall a bit (he had help moving his legs but he was doing really well at helping), leaning over on his elbows and supporting himself and been spending time on his tummy which is a HUGE stretch for him but he is doing much better with it now.
OT -Ben has been up in the standing frame quite a few times and each time is getting stronger. He has a sling type harness under his bumm that helps him to stand. While he is standing there is a table in front of him where they help him to write and draw certain objects. So far he has attempted to write his name (he gets a good B, half and E and the rest is squigglly lines...which doesn't surprise me), made a circle, heart and square! He also has picked up to sanding a wood tulip that he is making for me! Next comes painting it! One HUGE thing he did is use a pedal machine for his arms. It is like pedals on a bike but you do it with your arms instead. Last Saturday he did it for 1.5 seconds and really struggled with is left arm (it is the weaker one) but come Monday he got on it again and did it strongly with BOTH arms for over 4 min!! When they asked him if he wanted a break after a few min because his left arm was slipping Ben picked up that arm and grabbed that handle and kept going...way to fight Ben!!
ST - Ben is officially addicted to bananas, mashed potatoes and pureed peaches and not failing to mention ice chips with both apple juice and cranberry juice! He has been doing really well with these textured foods! The last few days I have given him a banana and I make him use his arm to give himself his own bit! He takes the biggest bites ever, chews it up and gives a good swallow! Ben eats is as if he will never see a banana again! They have been working with alot of yes/no answers and Ben has been giving very slight head nods!! You have to watch closely to see it but he does it! They have a communication computer that they are working with him on as well and on a good day Ben does a great job!
Yesterday was a beautiful and slightly warm day here! The Rec department had set up another outing to the park so we went! My mom, lil bro and nephew came as well. We saw a 170lb St. Bernard, hound dogs galore, kids and tons of people! Ben was wide awake the whole time and when I asked if he was enjoying being outside he gave me one finger for yes...that finger couldn't have come up any faster! Ben loves his outdoors!
Referrals and paperwork are still being worked on to go down to Cali! We have yet to get an official date of when we might go down! I am excited to go and see what God has for Ben there but sad to leave my family! Thank goodness it is only a 2 hour flight away!! I will keep you posted on dates and all!!
So, as you can see Ben continues to make improvements! I thank Jesus everyday for these and praise Him for them! Ben continues to be strong and very courageous!
Blessings!
Katie and Ben
"Jesus please heal all of the bones in Uncle Ben's brain and heal Aunt Kate's scratches (my scars)...in Jesus name!" My 5 yr old nephew!
Tuesday, March 2, 2010
I will be back soon...
I will be back on here and updating soon!! My computer hit the dust and a new one is on it's way! After it gets here watch out because I will be back in the swing of things!! Ive been doing everything on my iPod touch which has been a blessing...can't wait for a real key board back! Thank you for all your continued prayers and support!
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