Yes today marks six weeks since we've been here at Akron Childrens. Six weeks since the accident. Six weeks on the roller coaster ride of my life! Nothing at Cedar Point compares to this, I guarantee it! (and I love going there) It doesnt even seem that long to me. I've had a few days that seemed long, but April has flown and here we are 8 days into May. I have this feeling that as hard as I try, this summer will be over before I get to enjoy it. One of my goals before this happened was making the most of everyday and spending time with my little men before the 3 of them head off to school this fall. I was supposed to start this new chapter of my life confident of who I am as a person, not as a wife and mother. Now I have no clue whats going on. But I know the that the Lord has awesome things in store for me as I venture forward into this new chapter I wasnt expecting! I am ecstatic to see whats awaiting me!!!
C walked from his recliner to the nurse's station this forenoon! His room is 3 doors down so it was quite the feat for him!!! I am so proud of him!!! Auntie Em has a sticker chart in C's room and today we told C that he will get 10 stickers if he pushes his walker and does his thing. The PT tech held C for balance and daddy pushed his IV pole and off he went. There were a couple times he wanted to sit on the floor because his legs hurts. Several nurses were cheering him on as he was crying in the hall. He pulled out some spunk and treaded on.
The nite nurse came in and had an order written to turn off C's main pain med that runs in continuasly. He still has the button we can push for pain if he needs it. We got the 411 on how C may act when he starts getting weaned off some of his meds and some of those things I didnt want to hear. I just now witnessed a brutal case of anger coming from C. He's not my angry guy nor does he ever get mad. Occasionally if theres something he cant do right then he'll cross his arms and Hmph, but not like what I just saw. I am hoping and praying this phase doesnt last long, because I'm not sure that I can handle seeing a side of him acting that way. It just showed me what people are like that are hooked to drugs. So sad. :(
C ate more bologna, crackers and cheese with a side of chocolate milkshake this afternoon. I cant wait for the feeding tube to be gone. Tomorrow during C's bath they will be removing C's catheter for good or so they say. We'll see if that actually happens! They will also be removing some more bandages from parts that are healed enough. We are seeing progress everyday, and the light at the end of the tunnel. I wanted to shout out a special Thank you to a fellow preschool mom who gave me a book called 'Meet me at the well' by Virrelle Kidder. I have loved reading this book and adding it with my daily journal! Happy Mothers Day to all moms out there who are underappreciated, underpaid, overworked, over stretched and just plain wore out! May you have a restful day of doing nothing bliss! Thank you all for your continued prayers! Until next time.....
Amy
Saturday, May 8, 2010
Friday, May 7, 2010
Great news
I have some awesome news!!! Doc said today that C has 1 spot about the size of his palm that he has to graft again because it didnt take. He will be doin that on monday sometime. However the great news is about a week after that we get to go home!!!!!!! I am being cautiously optimistic that we have no set-backs and that C's minor surgery will go well!!!! I am thinking 10-12 days from now I will be sleeping in my own bed! C will have to come back daily for day rehab, obviously. But for us as a family to be under one roof again is huge! Praise God for all our answered prayers!!! Thanks to all of you who have been praying as well!
Amy
Amy
two tone again
I cant seem to get rid of these 2 tone posts. I saw when it happened this time, but it wouldnt let me go back to my color. So sorry if you need glasses if after reading these posts~
Staples
So sorry that I've not posted in a couple days. I didnt have a laptop at home and our home computer decided to end up on the fritz. Now we have to look for a new one. I am back at the hospital and have given my hubby a break. He gets 'institutionalized' very quickly when he's here with C. Especially when its beautiful out.
Wednesday forenoon C went in to have all his staples removed. It took Doc and 4 nurses 15 minutes to remove over 500 staples! I was freaking out! I didnt know C's body was big enough to hold that many staples. After Doc was finished he said that he thinks they got all of them but there may be some still embedded under healed edges. They will show up eventually on an x-ray if he missed any. Comforting. Doc said they wont hurt or cause any discomfort because they're not that big and skin just grows around them.
Yesterday C also walked out to the hall from his bed and back in his room to the recliner, all the while just holding onto Mavs and a nurses hands. I was so proud of him! Marv said he cried on the way back. The rest of the day C's legs got the shakes. Out of the blue his legs would start trembling. C thought this is hilarious that his legs shake and he wasnt doing anything. C has been fitted with silicon chin/cheek piece that is to help smooth out the wrinkles from his face graft. Eventaully he will wear it with his Jobst suit but for now they have it bandaged on his face. The OT tech was in to fit C for his gloves/sleeves as well. I'm not sure yet what color I'm going with for his suit, thought I'll let C decide.
On my drive up here yesterday I was listening to my tunes again. The boys were sleeping so I was in my own little world. All of the sudden a song came on that I normally skip over on my cd.
i think the title is call Your Not Shaken. I dont know the artist. The words totally describe my roller coaster of feelings during the whole time.
I am sinking in a river that is raging,
I am drowning will I ever rise to breathe again,
I wanna know why?
I just wanna understand, will I ever know why?
How could this be from your hands?
Chorus
Every little thing that I had dreamed would be, just slips away like water through my
hands
And when it seems the walls of my belief are crashing down like their all made of sand
I wont let go of you now because I know ...Your not Shaken
I am trembling in the darkness of my own fear
All the questions with no answers still grip me while I'm here
And I may never know why
Oh I may not understand, but I will lift up my eyes, and trust this is your plan!
Now matter what the Lord brings my way, I know that he brought us to it and he'll get us through it. Even though I may not understand why or how this accident is going to further His kingdom, its not for us to know just to follow. The Lord loves when he sees obedience in his children. And I want to be obedient to him.
Heres hoping you all have an awesome weekend, despite the rainy forecast! Until next time...
Amy
Wednesday forenoon C went in to have all his staples removed. It took Doc and 4 nurses 15 minutes to remove over 500 staples! I was freaking out! I didnt know C's body was big enough to hold that many staples. After Doc was finished he said that he thinks they got all of them but there may be some still embedded under healed edges. They will show up eventually on an x-ray if he missed any. Comforting. Doc said they wont hurt or cause any discomfort because they're not that big and skin just grows around them.
Yesterday C also walked out to the hall from his bed and back in his room to the recliner, all the while just holding onto Mavs and a nurses hands. I was so proud of him! Marv said he cried on the way back. The rest of the day C's legs got the shakes. Out of the blue his legs would start trembling. C thought this is hilarious that his legs shake and he wasnt doing anything. C has been fitted with silicon chin/cheek piece that is to help smooth out the wrinkles from his face graft. Eventaully he will wear it with his Jobst suit but for now they have it bandaged on his face. The OT tech was in to fit C for his gloves/sleeves as well. I'm not sure yet what color I'm going with for his suit, thought I'll let C decide.
On my drive up here yesterday I was listening to my tunes again. The boys were sleeping so I was in my own little world. All of the sudden a song came on that I normally skip over on my cd.
i think the title is call Your Not Shaken. I dont know the artist. The words totally describe my roller coaster of feelings during the whole time.
I am sinking in a river that is raging,
I am drowning will I ever rise to breathe again,
I wanna know why?
I just wanna understand, will I ever know why?
How could this be from your hands?
Chorus
Every little thing that I had dreamed would be, just slips away like water through my
hands
And when it seems the walls of my belief are crashing down like their all made of sand
I wont let go of you now because I know ...Your not Shaken
I am trembling in the darkness of my own fear
All the questions with no answers still grip me while I'm here
And I may never know why
Oh I may not understand, but I will lift up my eyes, and trust this is your plan!
Now matter what the Lord brings my way, I know that he brought us to it and he'll get us through it. Even though I may not understand why or how this accident is going to further His kingdom, its not for us to know just to follow. The Lord loves when he sees obedience in his children. And I want to be obedient to him.
Heres hoping you all have an awesome weekend, despite the rainy forecast! Until next time...
Amy
Tuesday, May 4, 2010
French fries
As you can tell C had french fries for dinner. He ate about half of them and then he had enough. I imagine that his stomach has shrunk down to the size of a lima bean. It just couldnt hold any more. C has been drinking gatorade and a few sips of sprite but thats been the extent of his eating.
Tomorrow forenoon C is getting put under light anesthesia to pull out all his staples that he has holding grafts in place. I'm glad that these are getting removed. They seem to be a minor source of discomfort for C. Doc covered the grafts with a material called bio-brain. I dont think its made of brains but I havent asked. After the shark cartilage and pig skin they've been using I'd rather not know. This bio-brain is made of a very thin rubbery type material and has very tiny holes all over. (reminds me of the cap they used back in the 90's to hilight hair) C has this on his head right now and its being held on with titanium staples. I only have a high school education but I really liked science and anatomy. It seems to me that there would be a less painful and grotesque way to adhere this material to one's skin. I'm partial to glue or even tape to hold things in place, not to mention a needle and thread. Doc says its so easy to just take the 'staple gun' and run it along the graft and be done. I've watched construction guys frame both houses we've built and I see how quickly they use nailers and staple guns and thats the mental picture I have of the Doc in the OR. The reason they are taking C to the OR is so that they can sedate him a little more and then do his bandage change with out C remembering. I am all for him not remembering that. The last time the tub team took out staples, they removed upwards of 100. This time though I was told there would be significantly more to remove.
A PT tech came by today to work a little on C's hands and arms. She brought with her what looked like a g-string. hahaha Anyway it was a piece of C's jobst suite that he has to wear around his chin and it goes up over his head. It was a confusing contraption until she showed me how it goes on. His suite is available in several different colors and pink was one of the options. My boys are so anti anything pink or girlish. I told C that if he keeps being mean to the PT staff and fights to do his therapy, Im ordering his whole suite in pink and he screamed NO at the top of his lungs and almost woke up the dead. Marv had to have a little chat with C tonite when he got here about his attitude and keeping it in check. I imagine it went in one ear and out the other. We will see how tomorrow goes.
C had a long day and no nap. He has been sleeping now since about 8:30 pm. I am hoping he sleeps really well tonite, I need my sleep too. I am gonna try to hit the hay a little earlier tonite, so until later.....
Amy
Tomorrow forenoon C is getting put under light anesthesia to pull out all his staples that he has holding grafts in place. I'm glad that these are getting removed. They seem to be a minor source of discomfort for C. Doc covered the grafts with a material called bio-brain. I dont think its made of brains but I havent asked. After the shark cartilage and pig skin they've been using I'd rather not know. This bio-brain is made of a very thin rubbery type material and has very tiny holes all over. (reminds me of the cap they used back in the 90's to hilight hair) C has this on his head right now and its being held on with titanium staples. I only have a high school education but I really liked science and anatomy. It seems to me that there would be a less painful and grotesque way to adhere this material to one's skin. I'm partial to glue or even tape to hold things in place, not to mention a needle and thread. Doc says its so easy to just take the 'staple gun' and run it along the graft and be done. I've watched construction guys frame both houses we've built and I see how quickly they use nailers and staple guns and thats the mental picture I have of the Doc in the OR. The reason they are taking C to the OR is so that they can sedate him a little more and then do his bandage change with out C remembering. I am all for him not remembering that. The last time the tub team took out staples, they removed upwards of 100. This time though I was told there would be significantly more to remove.
A PT tech came by today to work a little on C's hands and arms. She brought with her what looked like a g-string. hahaha Anyway it was a piece of C's jobst suite that he has to wear around his chin and it goes up over his head. It was a confusing contraption until she showed me how it goes on. His suite is available in several different colors and pink was one of the options. My boys are so anti anything pink or girlish. I told C that if he keeps being mean to the PT staff and fights to do his therapy, Im ordering his whole suite in pink and he screamed NO at the top of his lungs and almost woke up the dead. Marv had to have a little chat with C tonite when he got here about his attitude and keeping it in check. I imagine it went in one ear and out the other. We will see how tomorrow goes.
C had a long day and no nap. He has been sleeping now since about 8:30 pm. I am hoping he sleeps really well tonite, I need my sleep too. I am gonna try to hit the hay a little earlier tonite, so until later.....
Amy
Monday, May 3, 2010
A nugget
What a great day today was! My roller coaster is at the top again. The last time it went down wasnt as far as it sometimes has been. C had a good day. He got to meet Ceasar, a lab/terrier mix from the doggie brigade. He didnt do many tricks but C was happy to see him anyways. I would like to have Petey the Ponie stop by. I understand he's a miniture pony. He was in Fl for the winter and the nurse wasnt sure if he's back yet. He has to undergo an enema before he's allowed through the doors! If I were Petey theres no way I'd be bringing any joy along to share with sick kids, especially after a violation like that! :)
I asked C this evening if he wanted something for dinner and he said yes. I wanted to jump for joy!!! We went over the menu and everything I mentioned he wrinkled up his nose at. He decided on nuggets and chocolate pudding. He only ate about half a nugget, but I'll take whatever amount he's shoving in. So, small progress.
C has finally got his impish ornery little grin back. Its balm to my hurting heart to see his personality come through again. I've waited several weeks to see his smile truly shine on through! When I was saying our bedtime story and prayers tonite C out of the blue said 'mommy how did daddy hurt his hands'? I was thinking he knew how Marvs hands got burned, but with all the meds and trauma that he's had, it doesnt surprise me that he's forgotten. I asked C if he remembered what happened and he said 'I was on fire and it was really hot'. I told him that daddy saved him from the fire and thats how daddys hands got hurt. He said 'ok' and that was all. I want to erase all that from C's memory! I know that mental healing for C is going to have come from Christ. I reassured C that nothing like that will happen again. He said 'I know mommy'. I feel so useless when it comes to this. I have gotten on my knees and begged God to let C forget that day and what happened to him. In his 5yr old mind he doesnt comprehend that things happen for a reason and that God uses events like this to further his kingdom. Its hard for me to see the good thats going to come from this, let alone trying make a child understand. We may never know either this side of heaven. So we cling to what is true and just and let the Lord lead us!
On a side note please pray for my Grandma. She has been admitted to ICU with multiple symptoms. She is 87. Thank you so much. I am looking forward to more visitors tomorrow. People make my days go so much quicker. Until next time...
Amy
I asked C this evening if he wanted something for dinner and he said yes. I wanted to jump for joy!!! We went over the menu and everything I mentioned he wrinkled up his nose at. He decided on nuggets and chocolate pudding. He only ate about half a nugget, but I'll take whatever amount he's shoving in. So, small progress.
C has finally got his impish ornery little grin back. Its balm to my hurting heart to see his personality come through again. I've waited several weeks to see his smile truly shine on through! When I was saying our bedtime story and prayers tonite C out of the blue said 'mommy how did daddy hurt his hands'? I was thinking he knew how Marvs hands got burned, but with all the meds and trauma that he's had, it doesnt surprise me that he's forgotten. I asked C if he remembered what happened and he said 'I was on fire and it was really hot'. I told him that daddy saved him from the fire and thats how daddys hands got hurt. He said 'ok' and that was all. I want to erase all that from C's memory! I know that mental healing for C is going to have come from Christ. I reassured C that nothing like that will happen again. He said 'I know mommy'. I feel so useless when it comes to this. I have gotten on my knees and begged God to let C forget that day and what happened to him. In his 5yr old mind he doesnt comprehend that things happen for a reason and that God uses events like this to further his kingdom. Its hard for me to see the good thats going to come from this, let alone trying make a child understand. We may never know either this side of heaven. So we cling to what is true and just and let the Lord lead us!
On a side note please pray for my Grandma. She has been admitted to ICU with multiple symptoms. She is 87. Thank you so much. I am looking forward to more visitors tomorrow. People make my days go so much quicker. Until next time...
Amy
Sunday, May 2, 2010
Doing Well
Everything about our church service today was so fitting to our lives right now. Thanks Larry for sharing what God places on your heart! God takes the impossible and makes it incredible!!!!! All we have to do is have faith! The song 'God in this city' is also one of my favorites. It was so great being back again. I dont think I've ever missed this many sundays in a row in my life. Soon and very soon we shall return as a family, whole again!
C did well yesterday and today for Marv. He ate some chocolate pudding and drank almost a whole gatorade. All that was left was the backwash in the bottom! :) I'm so proud of my little man. I asked our day nurse if the tub team was able to take the cover off the actual graft and see if it was taking? She said they did and that it looks good! Horray!! C will now have his bandages changed every other day this week. Hopefully on Tues we will know further if he will need any pieces of the grafts redone. C no longer has his 'hat' on. Doc took some donor skin off his head again and it looks kinda nasty. Its all bloody and kinda seepish. He has what looks like saran wrap covering his head but you can see right through it and they have it stapled to his head. OUCH! It hurts my insides to see them on there but I just look at his face and not his head. I still think he's as handsome as ever!!! :) C also told me his back is starting to itch. I was like oh man here we go again. Then my second thought was cool he's itchy thats healing going on! Sweet!!! The sooner he heals the quicker we can go home!!!!
I am looking forward to this week. I have visitors coming to see me at the hospital!!! I love having people here! Thats about all I have for now.....have an awesome week!!!
Amy
C did well yesterday and today for Marv. He ate some chocolate pudding and drank almost a whole gatorade. All that was left was the backwash in the bottom! :) I'm so proud of my little man. I asked our day nurse if the tub team was able to take the cover off the actual graft and see if it was taking? She said they did and that it looks good! Horray!! C will now have his bandages changed every other day this week. Hopefully on Tues we will know further if he will need any pieces of the grafts redone. C no longer has his 'hat' on. Doc took some donor skin off his head again and it looks kinda nasty. Its all bloody and kinda seepish. He has what looks like saran wrap covering his head but you can see right through it and they have it stapled to his head. OUCH! It hurts my insides to see them on there but I just look at his face and not his head. I still think he's as handsome as ever!!! :) C also told me his back is starting to itch. I was like oh man here we go again. Then my second thought was cool he's itchy thats healing going on! Sweet!!! The sooner he heals the quicker we can go home!!!!
I am looking forward to this week. I have visitors coming to see me at the hospital!!! I love having people here! Thats about all I have for now.....have an awesome week!!!
Amy
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