Thursday, September 29, 2011

Keeping me on my toes....the little prankster...

There isn’t much time for boredom or dull in Jeremy world. It was about 3 months ago that I went to make me a cup of coffee on a Saturday morning and in order to complete this task I needed the lid to my coffee pot which could not be found anywhere believe me I looked. I am accustomed to Jeremy hiding things so I looked in every hiding place I could think his little mind would prompt him to put this. I don’t know was he actually hiding it or thought this little gadget was neat so he was putting it elsewhere for him to keep. This neat little gadget missing causes me lot of issues because it has a nodule that will push down the button on the filter that will allow the hot water that is sitting in the filter to run into the pot giving me what I want caffeine coffee. I had to get creative and found that if I tape down the filter it will allow the coffee to run out. This past weekend I even looked at new coffee pots and considered buying one but decided I wanted to get an electric skillet. I have been cooking more, getting creative with meals so I decided an electric skillet would be better use and easier for meals plus taping down the filter works. I was cleaning out a cabinet doing some rearranging to make items fit where I wanted them, and throw away old items not used and found one of Jeremy’s 4 year ago lunch boxes and thought how did that get in this cabinet and was moving it to the cabinet that has all of Jeremy’s lunch boxes. I thought I will throw this out, but looked inside to make sure nothing was in it, yep guess what was in there? I pulled it out, stood there for a minute, thought how did I miss this, went over to kiss my little precious boys, cute adorable face and asked him, why? Why there? The nurse asked me what it was and I told her you know how each Saturday morning I tape down my coffee filter for the water to run out, this is why the MIA gadget for months and we laughed.

Jeremy world, living with a non-verbal child it’s hard to tell what he is thinking, what prompted him to put it in there, was he watching me all these months tape down my coffee pot filter, laughing, thinking oh yea mom I am so getting you. I was a youth director, work around Lineman and I have a good sense of humor, I like good pranks, I have played some good pranks, still continue to play them and have had some good pranks played on me. J has a good sense of humor, when he’s doing that little “evil witch” laugh he is probably thinking of something he has done or is going to do in the future to someone.

Tuesday, September 27, 2011

AH.... AH....AH... CHOO...

You are probably thinking by reading the title that this post is going to be about Jeremy being sick but Praise be to GOD just the opposite, Jeremy has been healthy.

Here in Jeremy World this is a new game that Serena came up with during the PT session yesterday. I am beyond Grateful, Thankful for all the therapist God has planted in our lives that work so super hard for Jeremy and their creative way of thinking. Serena started with a ball and would say, “ah ah ah choo” and act like you sneeze the ball. Jeremy has always thought it was funny when you sneeze but throw in his favorite toy and it’s even funnier. I didn’t realize this, until last night we were sitting at the kitchen table. J goes, “ah..ah” and I would ask him what are you wanting, show me? The nurse showed me the game and Jeremy would laugh hysterically. It’s one of those J contagious laughs where you can’t help but to laugh along with him you can’t stop yourself. The bigger you make the sneeze, let the ball hit him in the head the harder he laughs, he had me and the nurse laughing so hard.

Serena got Jeremy to use his walker, he walked from the living room, needed assistance down the step, then walked to the back patio, came back, assistance up the step and into the kitchen which is quite the distance walk for Jeremy who was doing all on his own. He is building muscles, uses his walker when prompted, stands up all over the place, working on transferring with less support and last week did some walking with holding my hands.

Jeremy last week fought off what could have turned into an UTI (Urinary Tract Infection, I have to do this for my friend Kelly who tells me to speak English) with no antibiotics. I contribute to the fact he is drinking more water, we irrigate his bladder daily and that is keeping his bacteria down plus has the same 3 people who cath him. We did the Uro-dynamic study on Friday, Dr. Miller got called away to surgery so we didn’t get to discuss the results but what I could tell from what I was seeing and asking the Technician is basically Jeremy’s bladder is unchanged from April so it’s not working. Dr. Miller or the nurse will call me this week.

Here are a few pictures of the amazing, wonder child……

Friday, September 23, 2011

The Chicken dance.....

 Oh Life in Jeremy world with Jeremy is funny.   I got him a birthday card that plays the chicken dance song and he also has chicken dance Elmo.  Jeremy loves just about anything that will play music and loves it even more if you make a big production out of it.  For many years, I've been singing, acting goofy to Elmo who does the chicken dance and the nurse and I have both been showing Jeremy the chicken dance to his card.  Jeremy sits and watch, he started the other day, clapping, flapping his hands and making a sound like "bawk".  He has this book he loves to have read to him a million times, "The Laughing calf" which there is a chicken that says, bawk, bawk, bawk as he walks by.  Jeremy climbed on the table last night, Mr center of attention and was moving his arms around and making a sound like bawk so the best I could tell this is J's version of the chicken dance..... Here are the pictures, I will try to capture a video...

The little monkey boy always scoots a chair over to the sink, sits down and helps me wash dishes Jeremy style so I was surprised last night when he crawled over, pulled himself to stand and stood there by me doing dishes Jeremy style....

Friday, September 16, 2011

Living the days of fall in Jeremy World

Wow, I must say after a 100 plus days of triple digits temperatures Oklahoma finally cooled down and I have to say I’m loving this cooler weather. It has given Jeremy the opportunity to play outside and he LOVES that.

I got the opportunity last Friday to volunteer for the United Way Day of Caring and I worked at Community Care an agency that provides food and clothing for families in need. I’ve been so absorbed in the lives of families who have children with special needs for the past 12 years because that is my ministry so it was good to switch gears and a reminder there are lot of people out there that need help. I am blessed, GOD has always blessed me with a good job that I can provide for Jeremy and I.

Alright let us get to the topic of this blog, Jeremy who is feeling really good, energetic, oh so ornery and full of himself. I walk into the kitchen after going to his bedroom to put up his clothes and find monkey boy standing in a regular kitchen chair with a cabinet door open, 10 mini-cereal boxes laying all around the floor but not before he tore the top off of each one. I was sleeping Saturday morning only to have Jeremy stick his face next to mine and I could picture his sweet little, sleepy face just waking up so I opened my eyes to look at him and say, “good morning” and he blew raspberries in my face. It was time for me to get up and have a cup of coffee. Sunday morning, Jeremy had to wake me up by crawling around to my side of the bed, stand up, pound on the bed with his hands and say “UP”. J’s newest game, he crawls as fast as he can to the door, pulls himself to stand by the banister, unlocks the dead-bolt, swings open the door and out he goes and sits on the porch. He is so funny and so stinking fast, the time it takes me to walk into his room or mine to put up something I come into the living room to find the door wide open and him sitting on the porch laughing so hard he can’t breathe.

J had PT on Monday and did fantastic, PT had him to make the whole circle through the kitchen and living room with walker with no help. He played kick ball while up in the walker for about 8 minutes. Monday he got to meet our 3 new OU PT students, J was sitting in the floor and these 3 young, pretty girls walk in and there went the crinkle of the nose and smile, he was being Mr. charming. We sit around and talked about Jeremy, he had to take pens, papers, write on a few of them to leave his makr and was trying to steal one of their phones but he did really well when I told him to give it back. He then moved on to the “feet” game, you take off your shoes and he sits on your feet or puts your feet on his head. He had one time that he was pulling one of the girl’s hair that we had to battle that one out. He has been tired this week but has worked very hard.

The result of the Kidney/bladder ultra-sound was good, no reflux in the kidneys and no damage.  We do the Uro-dynamic study next Friday and then follow with Dr. Oren Miller.  I am not anticpating much change if any.  I keep Thanking GOD that we've had no UTI's since the 1st of August....

Thursday, September 8, 2011

We are in Middle School !!!!!

Jeremy had a good first week of Middle school and the teacher's report was, he worked very hard, was cooperative, happy and smiling.  I figured he would be exhausted by the end of the day but he hasn't.  He continues to work super-hard, the amazing, wonder child who this morning pulled on my shirt, saying look, holding on to the bathroom sink stands up and balances on one leg.  Tuesday in Dr. Cyrus office he was holding his hands walking through the office and he's doing that more.  The nurse gets Jeremy off the bus, gives him a snack.  I took him to lunch on Tuesday and the children were all saying, "hi Jeremy".  I think it was a tough transition on me, J doesn't miss a beat he is so social. 

The sounds of fall to me include, cooler temperatures, Jeremy starting back to school, united way fundraising, Kiwanis pancake breakfast, chili cook-off, Creek County Fair, trips to the pumpkin patch and corn maize. OK I totally realize them are strange but I am OCD, I like plans, I’m a creature of habit and love traditions.  In my family, we grew up with traditions.  It was 2 years ago, this time of the year words spoken to me in a routine check of Jeremy’s spine would send my life spiraling straight into chaos and uncertainty, but God would use this to draw me to a closer more in dept understanding of him than I ever dreamed was possible or I would ever know. “Faith is the substance of things hoped for, the evidence of things not seen.” Hebrews 11:1.

I reflect back to that time when my prayer was earnestly God just heal Jeremy’s spine, you are mighty to save, can move mountains so I believe beyond a shadow of a doubt that he could reach down at anytime and straighten Jeremy’s spine, but if this isn’t your will then help me find the person and place. It was quickly that my mission of seek and find began and was obvious it wasn’t going to be close to home. My thoughts were changed to wherever, whatever, J is my first priority and I will seek with a passion until God closes the door. It was a cool fall Monday morning that I would load Jeremy into the car, drive to Tulsa to catch the van to Shreveport to the Shiner’s Hospital in what I was for sure would provide answers, yet I came back home disappointed and frustrated in what to me was a waste of 2 days.  A cool Sunday after church, leisure drive with my mom and Jeremy in our new car to St. Louis, Missouri to meet what I thought would be the one, I was running out of surgeons. I thought this trip would prove to find the person, facility and answer but yet left that visit even more frustrated and crying out to GOD, is this it? Is he the one? I just have to trust?  My drive made me continue to keep pushing as I couldn’t accept or rest in what this surgeon’s thoughts were, I felt uncomfortable and that Jeremy was a research project to him. Then a drive to Columbia, Missouri to a place I didn’t know existed to a surgeon who couldn’t even pronounce his name was scary. I was afraid it would be like the ones before, he wouldn’t want to treat Jeremy or I wouldn’t feel comfortable with him treating Jeremy. It didn’t take me long after meeting Dr. Dan to find a compassionate, caring surgeon who did actually see Jeremy as a person and I left the visit with so much peace. The surgeon who I would hand my child over to in August to fix his spine found out J had a sensitive spine, but a surgeon who would pull back and say I’m not going to continue. I was frustrated Jeremy lost mobility but was more scared he would not regain it. We come back in January for what I thought would finally close the chapter of scoliosis in our life only to once again have a sensitive spine act up, lose use of his bladder, 3 units of blood and I would fervently stand praying over my son’s hospital bed afraid for his life.

I think the verse above sums it up, faith is the evidence of things not seen. I can’t see the answer, I can’t see God’s plan or the purpose as to the why things happened the way they did. It’s not always his will or way to reveal and I don’t always have that right to know, that is faith in the things I can’t see and in GOD who is Mighty to save.

What an awesome fall weekend we had, Sunday evening after I got the house clean and we went for a mile walk, J climbed out the door and to the yard he went so we played outside for about an hour, he had so much fun. 

He let go and down the slide he came flying, he was laughing

The ever famous, throw the ball down the slide game while mom chases it

He was telling me, "GO", he is too big for his truck but he didn't care
I end with one of my favorite verses that really sums up the entire world, “I am Alpha and Omega, the beginning and the ending, saith the Lord, which is, and which was, and which is to come, the Almighty.” Revelation 1:8