Thursday, March 31, 2011

Blessings.. by Laura Story

I heard this song for the 1st time on my way to work Monday morning and couldn’t get it out of my head all week.  I had a friend that found the name for me because after much trying I couldn't find it.  I was able to goggle lyrics, song and even found the testimony of the artist.  I posted the song to my facebook so you can hear her sing it.

The part of what if your healing comes through tears just really jumped out at me and I’m sure it’s because I’m praying for J's healing of his spine, bladder.  I’ve cried many tears and many sleepless nights pouring my heart and soul out to God to restore J's legs to walking and his bladder to work.  I was looking back over J’s blog yesterday and started to see how through the time since we’ve been home my prayer hasn’t changed but I’m starting to accept this is God's plan, there is a purpose so therefore I’ve got peace and contentment only found in him.  I don't know why this happened, perhaps God is using this to show someone there is joy, hope and assurance only found in him?  maybe someone I know struggles with their faith? maybe someone isn't sure if they have ever truly accepted Jesus Christ? maybe someone is struggling with is there really a GOD?  I know Jeremy is going to walk again, I pray and have faith and believe in that.  I pray for God to heal Jeremy’s spine because I know that he is doing that right now as I speak, pray and cry out that he hears every word spoken to him.

I, then read Laura Story’s testimony of where her inspiration came to write this song. In 2006 she almost lost her husband to a brain tumor, “Blessings was written as a reminder that GOD remains faithful even when things don’t turn out the way we expect them to. Her husband’s struggles have provided the basis for the song off her new album which involves a complete surrender to God’s plan as well as redefining exactly what “blessings” really are.  I also know that personally many who ready J's blog is going through a difficult time. I know family members, friends or families I've met that their world has been rocked recently by some news that you weren't expecting and perhaps like me you've said, "this wasn't suppose to happen to me"
Laura Story

We pray for blessings
We pray for peace
Comfort for family
Protection while we sleep

We pray for healing
For prosperity
We pray for Your mighty hand
to ease our suffering

And all the while
You hear each spoken need
Yet love is way too much to give us lesser things

Cuz what if Your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights
Are what it takes to know you’re near
What if trials of this life
Are Your mercies in disguise?

We pray for wisdom
Your voice to hear
We cry in anger when we cannot feel You near
We doubt Your goodness
We doubt Your love
As if every promise from Your Word is not enough

And all the while You hear each desperate plea
Lord, that we’d have faith to believe

Cuz what if Your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights
Are what it takes to know you’re near
What if trials of this life
Are Your mercies in disguise?

When friends betray us
When darkness seems to win
We know the pain reminds this heart
That this is not
This is not our home

Cuz what if Your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights
Are what it takes to know you’re near
What if trials of this life
Are Your mercies in disguise?

What if my greatest disappointments
Or the aching of this life
is the revealing of a greater thirst
This world can’t satisfy?
And what if trials of this life
The rain
The storms
The hardest nights
are your mercies in disguise

Wednesday, March 30, 2011

Life’s about changing, nothing ever stays the same….

There have been a few minor changes in Jeremy World and it’s funny to watch him because believe me he does notice change.

I started wearing glasses again for the first time 5 years. I’ve had glasses but don’t always need them and I realize that is a stupid statement because I obviously seen an eye doctor who checked my eyes and said I need glasses. I have enough astigmatism that causes me issues. When I picked Jeremy up from respite on Saturday he looked at me as if to say, “mom, you don’t wear glasses”. I hadn’t put my glasses on yet this morning so I was getting him out of the car, put his glasses on, put him in the stroller and was taking him in to latch-key my funny boy takes off his glasses and hands them to me.

I personally think it’s time for a change in our house, since it’s just Jeremy and I so I’ve been looking for new living room furniture. I’m not an impulsive buyer, normally have to ponder upon the decision. I knew I was going to buy a new couch, but couldn’t decide if I wanted another love seat or 2 recliners. I have been checking out these French chairs at this antique furniture store for over a month and LOVE them. I thought it would be a good change, make the living room look a bigger and less cluttered. I went by last night, he still had them so they came home to live in Jeremy world. I re-arranged and moved the old love seat out of the house, moved the couch over where the love seat was and put the 2 chairs where the couch was. It was funny when Jeremy got home from respite, he was sitting still, looked over where the couch was, looked back at where it was and now there are 2 chairs. I asked him, do you like our new chairs? He had to sit in both of them.

Tomorrow, we finally have an interview with Oklahoma Health Care Authority to see if Jeremy qualifies for nursing, according to their over the phone interview putting J on the grid he may not. I however believe he will. This will be a change for my control-freak nature to let go of some of his care-giving, but I need help. I hope for one thing it will work out where maybe 2 days a week we can get a nurse in the mornings so J can sleep in and go to school ½ day them days. This will give him some time to rest he works so hard and is normally exhausted on Tuesday and Thursday. It was funny earlier in the week I was asked to answer some questions regarding what is my definition of family-centered care, what it means to me and J’s care? OHCA is cutting back like every agency in Oklahoma, tight budget year, so they aren’t allowed overtime. The nurse has to travel from OKC to Sapulpa. J is going to have another spine surgery at some point, so I’m a single mom, saving vacation, sick leave, plus trying to maintain all his other appointments but yet I have to take 2 hours of vacation to meet them at our house to accommodate their budget????

Monday, March 28, 2011

April showers bring May flowers....

We hear that saying so I thought that would be a perfect title for this post.  We typically in Oklahoma get lot of storms in April along with lots of rain and OK I totally realize that is not set in stone but it does usher in a beautiful new month.  A month of green, beautiful landscape of colors, warmer temps and legally the 1st month you can go without shoes.  My Papa Smothers always told us kids that you can't go barefoot if the month has a letter "R" in it, so that was law at our house.

I think the title also represents our life right now, as we think of the rain which is watering all that has been laying dominate through winter, its waking up and getting ready to spring forth, as I think is the case with Jeremy.  He has been working super hard, making slow progress but last week something clicked and he leaped several steps forward.  He can almost sit unassisted, he is testing the waters with putting his feet down, he is army crawling more and more, yesterday at therapy he was able to get his knees up under his trunk to crawl but then he collasped, his tone went from floppy to stiff.   

I so hope by the time this week ends that OHCA will have approved J for nursing and we can be working on getting one to help me.  J had therapy today so when we got home, he was sore, tired, cranky and if I put him down he whines and cries.  I think the colder, damp weather affects his muscles and he hasn't been sleeping well.  It is hard being the only person who can straight cath him 3 times a day, before school, take off work, drive to school and then before bed.  Then the lifting him up and down, several times, in the car, out of the car, in the stroller, out the stroller, in the bathtub, out of the bathub although he is starting to provide some help in this area with his increase trunk control.  Then fight with him, to get him ready for bed and the fight to get him ready for school.     

I was looking over J’s calendar and mine, comparing the 2 and was in total amazement when I synced the calendars that nothing collided.  One word to describe our month of April, “busy”.

We start out the month with a trip on Saturday, April 2 to Oklahoma City for my Oklahoma Staff meeting. Jeremy is coming with me because I have a friend that lives close by who can watch him, this will also make it  easier to cath him on schedule and not worry about him being 2 hours away from me.  Tuesday, April 5, I am helping with the Children’s Miracle Network sponsor luncheon from 11:00am to 1:00pm, then I will come back that evening for a 6pm Family Advisory council, both events at the Children's Hospital.  Jeremy has his urodynamics study on April 6 at Dr. Confer’s office.  April 7, I have an United Base council meeting at the Children’s hospital at 5:30pm and then at 6:30pm I receive my 20 year service awards from OGE. April 8, we go back to St. Francis for Jeremy to have his Kidney Ultra-sound. April 9, is Tulsa Sibshops, I don’t facilitate this group but I help coordinate and am there for support.  Then we get to breathe for a few days. I have a Scheduler's meeting for OGE in OKC on April 14, then I drive back for a resource fair at the Little Lighthouse.  Friday at 3pm I leave for the Women of Joy conference in Oklahoma City with my sister where I will be until Sunday afternoon. I am SO looking forward to this, wasn’t sure if I would get to even attend, but God and I both know that I need this.  This will be a time to "totally" unplug from my world.  A time to focus on my relationship with GOD, plus I get to see Michael W. Smith in concert and this will only be the 4th time. I’m not sure what the plans are for Jeremy at this time, either my mom will come to the house to watch him, because I will hopefully have a nurse that can help or he will go to my mom’s house and I will teach my mom how to straight cath Jeremy.  Who knows by then maybe his bladder willl have awaken and he can urinate on his own.  April 20, we see Dr. Confer to go over all the test results and see what our next step is.  We then get to totally relax on Saturday, April 23.  Sunday, April 24 is Easter, we get to celebrate and rejoice the resurrection of our Lord Jesus Christ. Then go to my parent's to have a celebration which is a dinner, kids hide Easter eggs, hopefully be a nice, warm, sunny day and I get to try a new Lemon cake recipe and make banana pudding. Thursday, April 28, we are taking a friend and her son with us to head back to our wonderful home away from home Columbia, Missouri and see our Super-hero, Dr. Dan in clinic at 2pm.  We will then go visit at the Children's Hopsital to see J's fan club and this time take pictures.  Then a night of maybe some shopping, relax in a Columbia motel with an indoor pool/whirlpool (OH YEA) and head back to Oklahoma on Friday. That then leads us into our first free weekend of the month and ushers in the Month of May.
"The Mercy of the Lord is from everlasting to everlasting." Psalm 103:17

Thursday, March 24, 2011

While they are yet speaking, I will hear.....

We have had a GREAT week and Jeremy has been in an amazing good mood all week. Monday, J worked very hard for Serena at Therapy, she was proud of his increased trunk control, standing longer with less assistance and the progress we see each week. We came home and went for our 2 mile walk. He went to respite on Tuesday which gave me some MUCH needed time to get 2 months worth of my Tulsa Sibshops and OFN paperwork caught up, and boy did that feel like a major accomplishment. I was also asked to share Jeremy’s story for the United Way Allocation panel for the place he receives respite. I got to take my 2 mile walk by myself.

"Before they call, I will answer; and while they are yet speaking, I will hear." Isaiah 65:24.

This was my verse I read on Wednesday along with making me focus it went along with my prayer that I have been praying. I started praying, GOD please continue to work and restore J’s spinal health, it was no longer God restore J’s spinal health because I knew he was working in Jeremy’s body and at his appointed time he was going to reveal to us. Praise the Lord for Wednesday, something clicked. Jeremy gained some confidence along with muscle control. I went up to the school to cath him and he was Mr. ornery, giggling boy. When I put him back in the room, he insisted that he sit in the chair with his peers at group-time, so I sit him there. Misty told me he sit there throughout the entire group time, he was crawling on the floor really working those legs. When we got home from school we threw the ball around for a bit, then we took our 2 mile walk. I noticed when I put him in the stroller he was stretching his legs straight out, he was also touching them to the ground but skimming almost like he was testing the waters to see how far he could go, if they got too close to the ground he would pull them back up and he has not been doing this. I set him at the kitchen table where I keep his little house, that he likes to put things in, he opens the door, shuts the door and does this for hours. He took everything out of my Wal-mart sack and put in his house. I was busy doing dishes, putting up things, getting things ready for today. I didn’t notice until he started scooting to the very edge of the chair, doing his little ornery laugh at how well he was sitting. I was in awe at how well his trunk control and balance had improved. Jeremy put his hands on the table and I thought he was going to stand up on his own, so I told him, “Go ahead, stand up and walk” he would do his little ornery laugh and he actually tried twice to stand up. While giving him his bath, he wasn’t hanging on for dear life to the edge of the tub or me supporting him, he played and splashed water everywhere. I was amazed when I got him out of the tub, it’s usually carrying dead weight how he was helping support himself. We go back to the kitchen table and he repeats the same steps as before, so I tried to get him to stand, he was able to stand with me holding him up under his arm-pits for a bit. His legs are still really weak, but this is the first time he has even tried to do this.

I was talking to a friend who is going with J and I to Columbia for our return trip so she can meet our super-hero and all the wonderful people who took care of J, I have talked so much about all the wonderful people of Columbia. Her son, Joe told her he wants to go because he wants to ask the Dr. how he can encourage Jeremy to walk, the sweetness of this little boy, who is one month younger than Jeremy, the compassion he has brought tears to my eyes.

Saturday, March 19, 2011

Our home away from home....

 I couldn't get any takers to go with us back to our home away from home, Columbia, Missouri so Jeremy and I made it a mommy and J vacation.  J had been on spring break all week and Thursday was really the nicest day of the week and made for a nice drive.  We made a few stops along the way, to change Jeremy's clothes, eat breakfast, grab a lunch/snack.  We took the scenic drive to Dr. Dan's office and went down Stadium Drive from I-70.  I noticed things I didn't before.  I love Columbia, it is so easy to get around you have I-70 or US-63.

We arrived at Dr. Dan's office, I had to put on J's AFO.  We were greeted by Holly, his awesome medical assistant and then off to X-rays.  When we got back to the room, Holly came in and said, "look who I found" I looked up and was surprsied to see the World's best and our favorite resident, Dr. Daniel Robertson.  I wanted to get a picture of him and Jeremy when J was feeling better but I didn't even think of it.  He knows J and is such a pleasure to talk shop about Jeremy, he is such a sweet, compassionate resident and is going to make an AWESOME family-centered care physician.  He said he would check back to see what the plan was.  Dr. Dan then stuck his head in to say hi to his buddy, shortly thereafter our resident, Dr. Gillizi came in.  I wasn't expecting too much in the way of future plans.  Dr. Dan wants to give Jeremy more time, since he is making progress, we will keep him updated and go back to see him in clinic on April 28.  He also felt this would give us time to get all the test needed and see where we are at on the bladder.  When we will do spinal fusion is uncertain at this time and the only thing he really said is this year. 

We then went to the hospital to visit J's fan club, I don't know why I didn't get a picture of all of his fans around his stroller.  J has a pretty good group of followers there.  It would have made a good picture.  We got to visit with Kelsey, PT who loves J, he loves her, she only seen him occasionally so she got to come by each day and play.  We visited with Lauren, social worker, the same way, she wasn't our social worker so she got to just come by and play with Jeremy when Amber got the hard job.  Corrine, child life, who is awesome, loves J and he loved crazy Corrine.  Caitlyn, PT, was there we got to see her, she had the hard job of working with Jeremy, she also saw him when we were there in August.  J got to see his favorite nurse, Shelley.  He seen some other friends who came by to say, Hi to the Master of Disaster from Oklahoma.  We went to PICU and got to see just a few of the nurses that took care of Jeremy, we did get to visit with Dr. Wankum.   J was really out of sorts and wasn't his usual, ornery, playful self, he would sorta crinkle his nose but I think his anxiety was high thinking he was there for a surgery.  When we go back in April I have got to take pictures of him with everyone. 

We took a trip to Columbia Mall just to look around to see what we could find, but J was tired at that point and could care less, we stopped at Applebee's for dinner and went to the motel.

The next morning we woke up to colder temps and drizzle.  We had made plans to meet 2 families that have became good friends from the area, they both have children with special needs.  We were going to meet at the Nature Center in Jefferson city.  It was a nice visit, I love visiting with other mom's and Zayden and David are adorable.  Julia is good with pictures so she took plenty, I will post some of them. 

J with our friends, David and Julie Hahn
Maydsen, Zayden, Heidi Rayl... Julie and David Hahn... J and mom

J and mommy

A Columbia freind told me about Central Dairy, a local place.   The factory sets in town and next to it is an old time ice cream parlor with good ice cream.  Jeremy and I headed to Osage Beach where we were going to stay the night.  We stopped at the outlet mall to go through a few stores but again J had enough of shopping.  We stopped at Panera Bread and took dinner back to the motel.  I should have known better than to leave my son with a full large glass of sweet ice tea, because when I opened the car door he threw the empty cup at me and my back seat got most of it.  

J got over there by himself

J at Central Dairy, taking out the napkins

Jeremy woke up in a good mood on Saturday, so the trip home was pleasant.  I think he finally started to relax.  On the way home, the warning sign should have been the lid to his small sweat ice tea whizzing past my head.  We were almost to Joplin when my son hands me his McKid's box, filled with a few chicken nuggets, french fries soaked in sweet ice tea and box was leaking. 

We arrived home shortly after 1pm, got everything put up, laundry caught up, trip to Wal-Mart to buy groceries and currently a tired boy who should sleep very good tonight I know I am tired.  It's about time to start getting him ready for bed, bath, teeth brushed, clothes laid out for church tomorrow morning.

Happy Boy, he was glad to be home....

Wednesday, March 16, 2011

Let us therefore come boldly unto the throne of Grace...

“Let us therefore come boldly unto the throne of grace, that we may obtain mercy, and find grace to help in time of need.” Hebrews 4:16

We had such a nice weekend, great weather, we got to spring forward so longer daylight hours.

I went to coordinate Tulsa Sibshops, it was neat to take enrollment and then go into the room and count 14 little heads, this is our 5- 8 year old. This is my age group that I co-facilitate and I love but I wasn’t sure where we would be at on J’s spine surgery so I made arrangements for someone to take it for me.

What did I do? I went to Kohl’s and purchased me some dress clothes, enjoyed a pedicure, so my piggy’s would be ready for warm/sandal weather. One of my missions for the day was to find a kitchen table, because the one we have only has a bench to sit on and it doesn’t provide any support for Jeremy and we needed one anyway. We have a really neat antique furniture store and he always has really nice items plus he’s currently got everything ½ off. I put Jeremy at the table with his little house in front of him and he played for hours, put things in the doors, shut the doors, which this is his favorite thing. This was one of them tears in my eye moments to see J sitting there playing and eating his pizza.

Jeremy has went back to having muscles spasms at night which isn’t anything new for us, he did this back when he was first trying to walk at the age of 5. He is definitely getting more tone, the PT explained this as his muscles don’t know to be floppy or stiff. We stretch him out really good, and I rub lotion on his feet/legs and massage him really well.

This week is Jeremy’s spring break, so he’s been a bum all week which he deserves the break. We went to PT session on Monday and he worked so hard, he was standing longer with less assistance, crawling better, sitting better. We see more progress each week.

We went back to see Dr. Confer, the Pediatric Urologist and like he said before the bladder is the last to wake up. We continue to intermittent cath J 3 times a day. He ordered an Urodynamics test to check bladder function, and Kidney Ultrasound to check the kidneys. We will go back to see him on April 20 for all the results.

Then tomorrow morning at 6am we are leaving for our home away from home Columbia, Missouri for a 1:40pm appointment with our super-hero, Dr. Dan. I am excited for him to see J, he’s made a great deal of progress. I don’t expect any surgery plans for future placement of the rods, but more continue with therapy, and come back see him in 6 weeks. I figured he should be able to give me a time-line of when we do need to get the rods done. I am excited because we are going to get to take some time to relax, see our Missouri friends and take 3 days to do it and do some shopping.

I have been getting frustrated thinking J has not made the fast progress he made in August and the fact is he isn’t where I want him to be. I want him to be walking to get his mobility and therefore gain back his independence the J before surgery. I pour my heart out to God, night, morning and throughout the day for spine & bladder health. If you look back over the PT evaluation of when we first got home and notes from Monday, J has made AMAZING, HUGE progress.

I pulled these 2 verses out of my daily promise box. When I come to work I turn on my computer, pull out a verse, focus and then throughout the day mediate on what it is saying. My attitude has been adjusted by these verses. I boldly come to the throne of God, not as a defeated child who is complaining, but because as a child of God, I have hope, can obtain mercy and find grace to help in time of need. I am expecting God to work every day in J’s body, some days I don’t see him working but I know he is working to restore his bladder and spinal health. Then as a child, I must wait patiently on God, and allow him to direct my path and into his love. Oh the promises, hope, love we have being a child of God’s.

“The Lord direct your hearts into the love of God, and into the patient waiting for Christ.” 2 Thessalonians 3:5

J at therapy, he was standing with minimal assistance
J at therapy, riding the am-tyke

Mr. Happy boy in the ball pit, throwing the balls out while I chased them. 

Thursday, March 10, 2011

Hope thou in GOD...

We switched things around and Jeremy started his outside PT on Monday, I think this will be in his best interest since he has school PT on Tuesday and Thursday. J’s tone is better and he makes progress each week. He was using his knees to do some crawling motions, stood in a toy train with assistance to play and of course was in heaven when he was rewarded to play in the ball pit. We all know how he loves to throw balls, he was laughing so hard as he threw them out and I made a big deal about chasing them down. His center balance improves daily. We will get a gait trainer either Friday or Monday for the house, this will provide him with support as he builds muscles and strength plus give him a way to get around the house. Monday evening I put him in the center of the living room floor and said, “Jeremy you have to learn to get around.” I left the room and came back to my son setting up against the wall smiling. He works so hard. I had a transition fair on Tuesday so it was late when I got to pick him up, they told me that he had fallen asleep. He had a 9:30am appointment with Dr. Cyrus on Wednesday so I let him sleep in, so I’m not sure if he was exhausted or the schedule change threw him off, but he had an “OFF” day. Dr. Cyrus said he looks good, we are leaving his ADHD meds where they are at, he was happy he gained a little weight, his incision looked good, no issues with me cathing him and PT notes show progress. Dr. Cyrus put in orders for Jeremy to get some nursing, so last night the agency came to do their assessment, they send that to the Oklahoma Health Care Authority. This will help me out because I currently am doing this on my own, I’m the only one who can cath him plus the constant lifting him up and down and most days I start my day exhausted.

We go back to see Dr. Dan on Thursday, March 17 at 1:40pm for J’s 6 week post-op appointment. I’m sure there will be discussion on future placement of rods and a possible better idea of what he is thinking of when it will need to be done. I can say however it is not with as much excitement as when we went back in September when Jeremy had fully recovered. I know Dr. Dan wants to see more leg recovery before proceeding with the rods. I admit in Jeremy World, there have been GOOD days, MEDIUM days and LOW days that I struggle. I am thrilled, thankful and excited with each step of progress J has made, but then again I am so dishearten and desire more than anything for my son to walk and have back his mobility. I miss J buzzing around the house and doing the things that J does. I want him to be able to play outside on his jungle gym or just play around the yard.

“Why are thou cast down, O my soul? And why art thou disquieted within me? Hope thou in GOD.” Psalm 42:11. I do have my faith, hope, and trust placed in God and am working hard to be patient and wait.

I am super-de-duper excited that on Sunday we spring forward and will have daylight longer. I am taking off Thursday and Friday of J’s spring break. I am excited that after our visit with Dr. Dan we are going up to the hospital so we can see all the wonderful people who took such great care of him and me while we were there for 31 days. It will be interesting to see J’s reaction when we get there.

I am trying to convince my sister to take the trip with us so I’m tempting her with a few days in Branson and shopping. I must admit a road trip staying in motels with indoor-heated swimming pools/whirlpools, a break from reality sounds fun to me. I’m not a big shopper and the mood must hit me, but after going through my closet to find out that I really didn’t have much in my closet but jeans and casual and cleaning out J’s closet the mood has hit. I’ve been asked to speak at a United Way function about the respite care J gets through Show and I’m helping with the CMN sponsor luncheon and need some dress clothes to wear to those events.

Tuesday, March 8, 2011

We work hard.....

Jeremy has been working so hard since we got home almost a month ago, you can't deny that this boy doesn't have determination and strength.  

Friday, March 4, 2011

To this we end the week.....

and to this we say, Hooray for Friday's because this starts our 2 days off.  It has been a busy week in Jeremy World.  

On Tuesday, they started putting Jeremy in a stander at school which forces him to stand and build muscles but provides support he needs.  He didn't like it at first but he did tolerate it for over 30 minutes in the morning and 30 minutes in the evening.  This is hard work for J because even though it supports him, it also makes him have to build muscles.  I was able to attend Family Advisory Council at the Children's Hospital after missing last month and got to visit families for the first time since January.  Jeremy went to all evening respite and I didn't get him picked up until after 8pm so we were both on the tired side Wednesday.  I was getting extremely frustrated but that stemmed from the fear that Jeremy wasn't going to recover, also the fact that I'm not being patient in waiting for God's perfect timing.   Jeremy started trying to scoot on his butt while sitting up.  We weren't seeing the progress I had hoped and honestly none in the lower extremities.  J would move his legs, push them off things and stretch them out.  If you tried to stand Jeremy up, his legs were like spaghetti and I couldn't even get him to drag his legs around while crawling.  I was thrilled on Thursday when J's para sent me a video of Jeremy working with PT.  Jeremy was sitting in the chair across from the PT, she was holding his hands and he pulled up from sitting to stand 3 times.  We went to outside PT yesterday and she was getting him to start dragging his legs around as well as start to make the motions to crawl.  This is HUGE progress and I was in tears and awe to GOD.  When we got home last night I was getting J ready for bed, he stood up on his legs for a brief bit, but before you had to support him from his butt and he would push back a little.  This morning he stretched his legs out longer than I had see him do since we got home and he did stand on his legs.  He still is not urinating on his own but I just keep praying that will come along, but we are dealing with it and he tolerates me having to straight cath him.   

I spoke with Dr. Dan over email Tuesday.  I asked if he had any thought on future plans and he said he wanted to see more leg recovery before proceeding with the surgery.  That was on Tuesday and what we seen yesterday was HUGE.  We set up our return visit before we left so that is March 17 at 1:40pm.  If we do in fact keep that appointment I am going to make it a 3-4 day mini-vacation give me and Jeremy some time away, have some fun.  We will probably spend the night of March 16 in Springfield.  Then head to Columbia for our visit, after our visit I want to take Jeremy to the hospital to visit his friends and home away from home and spend the night in Columbia.  We might go back to Going Bonkers.  Friday we are setting plans in motion to meet our friends in Jefferson City and go to a nature center.  We will more than likely spend the night in Osage Beach and get up Saturday morning and head back to home in Oklahoma. 

We have a low-key weekend planned.  J got to spend some time with his dad this evening so I went and got my groceries and got that chore out of the way.  J is now asleep on the couch and I'm doing laundry.  J gets to go to respite tomorrow from 10am to 4pm, so that is going to give me some "me" time and I might start doing a little furniture shopping.  My only check list for this weekend is to clean out the shoes in my closet.    It is suppose to be nice Sunday afternoon so after church we may go out to Granny and Papa's and visit. 

Happy, good spirited Jeremy in the stander, he has had the best attitude and sweetest spirit....

Thursday, March 3, 2011

J trying to stand....

This is HUGE progress for Jeremy, this is the first time he has done this where he has even tried to stand on his legs... I am in tears

Tuesday, March 1, 2011

Ta dah... the Amazing Jeremy

Jeremy was balancing himself for over 30 seconds, major accomplishment for him....

His 1st attempt in the stander at school, doing good....