Party

When I started this blog, never in my wildest dreams did I think I would be posting this heading. But party we did today at muscle school! They had a 'graduation' party for C since he's done with day rehab. They had gotten a cake from giant eagle and I brought some Mudd valley ice cream along. Those city slickers dont make it to amish country very much so I had to introduce them to one of the best ice creams on earth! :) They were all yumming all over the place! I just laughed. At the end of the party C received one of those white graduation dogs with the black cap on that you can write on. All of the techs that C has had wrote some very nice things on it. It about brought me to tears. The one lady we saw everyday just happened to be 'missing' when it was time for us to leave...she did leave us a note though. Her tough exterior was something I saw straight through the first day we were there and she knew it. All around a good day though!



C has 2 half days next week but then the weeks leading up to school starting we have 3 days a week. The sessions will last 1.5 hrs each. This was new to me but they are starting a new schedule for the techs and that means we get longer time with each one. It means an extra day a week in august but thats fine with me. I want C as ready for kindergarten as possible! We are getting such great results. Our main burn tech that we've seen from the beginning (I'll refer to as D), is working on a new set of goals for C which is awesome! She came in the other day and said "Coleson I was thinking about you over the weekend". Thats dedication! Most people when they leave work, work stays behind!



I'm trying as hard as I can to slow down the summer and cram in all sorts of fun stuff for the boys before they start school. When my head hits the pillow every nite I'm thinking to myself, did the boys have quality time and did we make any memories? Most days we get that accomplished on those other days I think how can I change things for next time. Im not beating myself up just trying to become better. The boys each received 10.00 walmart cards and they thought they hit the lottery! They all decided they wanted and air soft gun. It never happens that they all want the same thing. Marv on the other hand had a quick course on gun safety when the boys had them guns loaded! I think the twins still need the nerf guns, that way my windows still stay intact! :)

We have nothing much planned this weekend except relaxing...my hubbys feeling a little under the weather. Probablly a good idea to hang tight, we all know how men are when they dont feel good! jk Love, I'm not exactly a happy camper either! Well have an awesome weekend all! Until next time....Amy

Long time

So its been a while. How have you been? Are you having a busy summer? We are doing good. It seems like our summer just started! C is down to 3 days of muscle school this past week. This week he has 3 half days. That consists of 1 PT and 1 OT each day. They each last an hour. We drive the same amount of time as C is in therapy. Weird but hey its not 5 full days. Friday is C's last day being in Day Rehab. He will be considered outpatient as of friday. They are having a surprise going away party for C. C will have 2 days a week for several weeks then he'll be down to 1 day. I will feel so much free-er! Like sleeping in mornings till 9am...dont tell Mav! :) We got to go to the pool last week, caught up with an aquaintance. It was good to see you Dana. We have been watching movies, having cookouts, and just chillaxing! It feels so good to be 'normal'! I will never take the everyday mundane for granted again.

C is doing extremely well in muscle school! He's met a lot of goals this past week and is progressing wonderfully. He is running, jumping rope, playing hopscotch, riding his bike with no assistance, playing basketball and baseball. To be honest I wasnt sure that C would be doing all these things before he went to kdgtn. There were several techs that were impressed with how athletic C is. I guess I didnt think about it since he's just as good as Tate in playing ball. I cant wait to get the twins into t-ball next year! (so bragging on my kids)

The other day there was a boy who stopped us and was looking at C and asked what happened so i told him. He then replys by saying 'man he's ugly'....I was mortified and his mom was a dark lady and I could tell she was beet red to. She proceeds by slapping him upside the head and told him to say sorry. I felt so bad for C! I cant be with him every second when he goes to school, so if you would please keep C in your prayers that he would be able to handle things like that, and he wont become jaded towards others! It just makes my heart sad.......

We have been camping 2x now and the boys love it. I am planning on doing more of it before school starts. I would also like to go away for the weekend without the boys but that may have to wait until later! :) Theres not much else to report. I will try to keep this blog updated a little better. So until next time.....Amy

Why did I get burned?

This is the question that C has been asking me the past few weeks. How do you explain to a 5yr old that accidents happen and we have no control over them and that the Lord takes the bad and uses it for the good. Never mind the fact that we come out on the other side renewed, blessed, humbled and a whole slew of other words that my otherwise exhausted mind cant think of. Not that we are by any means 'on the other side' of this, but we have come so far in the past 3 months. I was reflecting on piks I had taken in the hospital following C's facial graft and I think 'man how did I get through that'. God's strength and grace has capabilitites to take and keep you where you yourself cant even imagine being. I see his hand all over this accident and still do everyday! So far the answer I keep giving C seems to be suffice until the next time he asks. Sometimes he'll even say 'I wish I didnt get burned'. It breaks my heart and all I can do is take him in my arms and tell him that that will never happen again and that We love him, Jesus loves him and so do a army of other people! I'm waiting for the day that we will understand why a 5yr old had to suffer as he did, but right now we will cling to the fact that God has bigger plans for C and is going to do tremendous things in this little boys life!

C realizes that he looks different. He asked me the other day why people keep staring? He comes up with some hard questions and I'm not sure how to answer him sometimes as they are usually out of the blue and catch me of guard. I told him one time that its because he's so handsome! (because little boys are no longer cute! that term is reserved for little puppies and girls with pigtails) :) He just scrunched his nose up at me said "huh-uh". I pray daily that God would give me the right words to make his young mind understand.

We are still going to muscle school (day rehab) everyday. C is doing amazingly well with his therapy. One of the techs was impressed when she came back from her leave on tues, when she saw C and that he was practically running around the hall. There was some talk of cutting back a day or two and of course they got my hopes up. Next week we still have 5 days of therapy, then the following week we will have 3 days! Thats all banking on C's Jobst garments come in this week or next. Thats the only thing were waiting on!!!! Come on already! I'm trying to be very patient....sometimes it works other times it doesnt! :)

I find that I'm holding my breath sometimes the past several weeks. While we were still in the hospital our home computer crashed, then Marvs truck broke down, then our lawn mower caught fire! Yes we had another ambulance show up along with 2 firetrucks. (We freaked out the neighbors again!) Not to mention with all the rain our property flooded. Praise God we didnt have any water in the basement or shop. If theres anything that I've learned the past several months is that things can be replaced! Its getting late and I feel like I left you hanging, I must rest my weary head for tomorrow will be here before I want it to be! Until next time....Amy

same old same old

I cant believe how fast this week has flown. Having only 4 days of therapy makes it feel shorter to. We had an ok weekend. Marvs family brought pizza out and we played ball in our now spacious yard. Its so nice to be able to hit the ball and not have to worry about it going on the road or rolling down the hill. The boys definetly love it. Sunday night we went to my parents for a cookout and we didnt last long. C was hot and itchy despite my very best efforts at keeping him comfy and cool. I went home kinda frustrated because we left at the very best schmore making time. In due time we will be able to fully enjoy times like that again.

Therapy is goin much better for C this week. We have a rewards system in place when he does well with each tech. He has 4 techs a day so if he gets 4 stickers then he receives a small prize at the end of the day. At the end of the week, if he has gotten all his prizes he gets to pick a bigger prize. The coordinators have an allotted amount of dollars they can spend on day rehab patients for motivation and since theres only 4 patients and 1 is a baby the kids have bigger better things to choose from. It helps to that each ones box is custom made for their interests. C's of course has race cars, lightning mcqueen, and toy story things.

We should be receiving C's Jobst suit on monday of next week. I am kinda excited to how C will fair with it. He has new gloves coming too that only encase half his hand and thumbs. He will like those much better. The main PT tech is worried about C's wrists. He has a graft on each one and the right one is already pulling his thumb down towards his arm. All of last weekend C had a cast on his right wrist to keep his wrist pushed back like he's giving hi-5 and to keep his thumb extended. It worked ok and he'll have another one this weekend. He has a cast on each wrist right now but they are little flimsier and are being held on with ace bandages. She works strictly with burn patients and we have full confidence in her and what she does. C may also be getting his feeding tube out tomorrow! Horray!!! That will be another huge relief once that gross thing is gone. I need to revamp some of C's meds as well. A few I'm almost out of and dont have refills and others we need to see about getting a lower dosage. C only sees Doc once a week, so I have to make the best use of his time while I have him!

Besides feeling like I have full time job driving to and from Akron everyday, life here is going on as best we can. It totally beats being at the hospital and staying at the Ronald Mcdonald house. Theres truth to the saying 'home sweet home'! I was reflecting again today how far C has come and us as a family. I just felt this overwhelming peace wash over me again and while we have been on a roller coaster, there has been an underlying truth that we hold onto. No matter whats going on Christ has been there and he knows before we do and he equips us to handle circumstances that are out of our control. Yes there were days we felt totally and completely helpless and still do and thought that theres no way we would ever get to the next day, but we have felt your prayers. Thank you so much for praying! Your continued prayers would be so appreciated! Were not sure how long we will be doing therapy but its gonna be a while yet. C is doing well with it but still has some balance issues and doesnt run yet although some times he'd like to. With time he will overcome this but until then we will strive to become better. Until next time.......
Amy

worn out

Worn out just about sums it up for me. The first week of day rehab is done and over. Heading into a 4day week this week. I am just about exhausted. I have no energy to even do a load of laundry. If I wasnt writing down all of C's meds I wouldnt know which ones I've given him. That would be really bad. He is getting weaned off 1 right now and tomorrow is the last dose. Slowly but surely.....I was hoping to get some things done this weekend but we have just been sitting and soaking up the sun. (I even let the boys skip their baths last nite...gross I know)

Over all C had a good week in therapy. I have wanted to throw in the towel too many times to count, but from somewhere deep down inside I manage to find an ounce of strength to continue. I drag C by the arm, screaming and crying, while onlookers stare and people offer sympathetic smiles. I just try not to look anymore. C earned a prize everyday and also earned the big prize at the end of the week too. Not sure how much longer he will go for the bribery aspect. If anyone has any other ideas on how to motivate a 5 year old to do painful therapy please do tell. We are up for anything.

We are hoping to have C's feeding tube out and gone by the end of the week, just a goal not saying that it will happen. I am to use my own discretion when to turn it up and down. Its becoming a pain in my backside. C has dealt fine with it. He barely realizes that its in. It has been leaking and thats really annoying. We have to pin it on his shirt during the day so it doesnt hang down and pull on his nose. Any how I feel like I'm complaining a lot. I am tired right now and therefore get a little cranky.

We are enjoying the weekend as best we can. Marvs parents, sister and her family brought us pizza last nite for dinner and we played ball some outside. Tonite we were invited to my mom and dads for a cookout and campfire. C's body tempature gauge isnt working correctly and gets very warm. Then when he's warm he gets itchy like crazy! We ended up leaving early because he was itching like a madman. I cannot wait until we are past this stage in his recovery. Here's hoping you have a relaxing weekend and remember why we celebrate Memorial Day! Until next time....
Amy

The weekend

So after being home for a couple of days, I'm still not in the swing of things. Being at the hospital I had only myself to care for as C wasnt doing much. Now I'm home and have to see to the needs of my 3 other men in the house. I am so thankful that I have a hubby thats in tune to my feelings and see's when I'm about at the end of my limitations. I am also thankful for our babysitter/cleaning gal/nanny! Thanks Anita!

Today was the first day of our day rehab program. This morning we met with the 2 main techs that oversee the Pt and Ot aspects of rehab. C was fitted for his Jobst suit, finally. I was happy to find out that C will only be wearing really high wasted leggings with the butt cutout and wont have to wear a vest and pants. I picked out a royal blue color for 1 suit and a tan for the other one. The techs were really happy with the progress C had made just over the weekend! The whole day C did really good except right after his lunch/nap time he didnt want to go back to play. Its amazing to me how they can incorporate simple things into working him out and stretching certain parts of his body. He feels like he's playing but behind his back the techs are giving each other thumbs up. I'm glad we were able to get into this program.

I got a taste of what its gonna be like when we go out in public with C and having his suit on. People have no problem staring...like flat out stare as if he had 2 heads or something! When I see someone with a handicap or prosthesis I dont think twice about it. I dont stare and gawk, sometimes I even pray for them, you never know what the have gone through and what they may still be struggling with! Having grown up with a father who has only 1 arm I was used to not being in the 'norm'. But some people need to display some tack. If you have questions or are curious just ask. Some people it mite offend but just ask me we will tell you just like it is!

I am about exhausted to my core and need to get to bed a little earlier tonite, Until next time....
Amy

Home

So we were released from the hospital a day early. Our Doc was on vacation so the other partner had sign the release. He was asking me if I feel comfortable doin C's bandage change at home and giving him his tube feeds and meds. I said I can do it becasue if I would have shown any apprehension I know that we would still be in the burn unit. Yesterday afternoon was a whirlwind of information and tasks. I was able to put C's bandages on by myself after they showed me how. I was then given the rundown on his pump for his tube feed and how much to give him and the rate it goes in. I actually remembered it all. C's meds are a little confusing still but lucky for me everything is written out and labeled. There was also so much paperwork to fill out when we go back to day rehab on monday. I think I have that all straight. I may need to borrow a box truck for when we go to therapy. C has so much stuff they want us to bring along...good grief!

After being released yesterday we had to get C's meds filled and our releasing nurse told us to stop at the outpatient pharmacy to check about availability on some of the meds we need. They were nice enough to call the walmart pharmacy and ask what they had available. We would have only been able to fill 2 at walmart the rest they had to do for us up there. So we had to wait another 1.5 hrs before we left the hospital. That was a little frustrating! So goes sometimes!

C was working on therapy over lunch yesterday and I decided to take that time to run down the banquet room where they were having a jewelry sale and some of the proceeds went to Childrens hospital. When I came back C was riding a 3-wheeler...like the ones the old mommies and doddies drive in Fl! He had the biggest smile on his face he was so proud of himself, not to mention the nurses stopped what they were doing to cheer him on! I'll start posting piks here soon, so look out for those! I need to go tend to my little man so..Until next time....
Amy