Heart visit was good....

Today was our 3 year visit with Dr. Klewier. Jeremy was actually acting shy and wouldn't even interact with Dr. K until the end and then he started showing his personality. We did an echocardigram back in March when we got our 3D CT scan because we were going to need one before surgery. Dr. K wasn't even recommending we do one because his last one was so good. Jeremy's heart is doing great, she said clinically it's awesome he continues to have some "mild" mitral valve reguiration but she said it wouldn't be any different then from me and her. J's mitral valve still continues to work better than it did. Jeremy was so good today in the office, he let them do the EKG, get his blood pressure and pulse ox. These are normally impossible test to get done on Jeremy, he will pull off the sticky tabs as they put them on, or he removes the blood pressure cup and they put the finger monitor on him and he's ripping it off. Jeremy even let Dr. K to listen to him, feel his pulse in various locations. Dr. K recommends we come back in 3-5 years, if we are doing a procedure during that time she will coordinate an echocardigram but she really doesn't recommend we get before 3 years. We can also get one done in her office, it only takes 15 minutes of Jeremy laying still and Jeremy showed today that he can do it. I have to call next week and get a copy of her office notes to take to our trip to Columbia. Good office visit, this was one that I always thought we would struggle with.

Here is a picture of Jeremy twirling around in her chair, these chair were smaller than what we were use to and he could climb up there and sit down. He was having fun doing this....

For all I know the plans...

My life has been all about plans for the past year, there have been the plans for Jeremy's future, plans for the surgery, plans for my day and our lives. I was first upset when I found out that the surgery could not be done until August, I wanted to get it done in June so Jeremy would have the summer to recover. I didn't want him to spend his birthday in the hospital recovering from surgery, I didn't want him to miss school. I thought well this way doing it in August he will get to enjoy 2 months of his summer. Jeremy is having an AWESOME, fun summer, he is maturing, learning to be social having fun, he has been humming the song about the speckled frogs for days, he is telling us when he needs to potty, sitting on the potty, doing some on the potty and he is learning. The HTS sent me some pictures of Jeremy playing at the splash pad we have in Sapulpa, last year Jeremy could care less about it, but today he had some friends there so that made a difference. These pictures humbled me, I started thinking, "I don't know how GOD can stand me let alone love me like he does", because he had the plan, he had Dr. Dan picked out, he had the surgery dates picked out, he had the plan it was never me making plans. Jeremiah 29:11 has been one of my favorite verses for a long time, "for I know the plans I have for you , "declares the Lord", plans to prosper you and not harm you, plans to give you hope and a future. Then on to verse 12, "Then you will call upon me and come and pray to me, and I will listen to you.". Verse 13, "You will seek me and find me when you seek me with your heart."

I am a mom of a son who has special medical/developmental needs, I am a mom who LOVES my son so much it hurts sometimes. I struggle with any surgery Jeremy has. If you are a parent whose children are healthy, never really been sick, hurt, had surgery you will probably think that, "how can she think that way?" and probably not understand where I'm coming from. If you are a parent of a child with special needs, you know exactly what I'm talking about, the fears and the reality that presents itself, sometimes daily, weekly, monthly or occasionally. You might even shed a tear for your own child, for me. If you are a parent who has lost a child, you have lived and are living my biggest fear in the world and believe me when I say, "my hearts breaks for you all the time." My biggest fear this is going to be a major surgery for Jeremy, next to his open heart surgery, "is this the surgery Jeremy won't survive? is GOD going to take him away from me? I don't dwell on these thoughts, I know Satan places these but they are there sometimes dominant, sometimes active but it's the reality that I live with. The surgery getting closer they tend to rise to the surface. The biggest part of the ordeal is, I don't know why GOD tolerates me, why he puts up with me, let alone love me enough to die for me. I don't know God's plans for my life or for Jeremy, I don't know what the future holds other than I am a Christian, my heart belongs to GOD and there will come the day that I will be in heaven with him. I must trust him, that is where my faith comes in, and seek him, he will be found....

Yearly visit with our Ped. Neurologist

We had our yearly visit with Dr. Seigler today. Jeremy had an episode back at the end of April where he zoned out for several minutes. Dr. Seigler asked me if he was really tired after that and he wasn't, I know a seizure can wipe a person out so I took note of that. Jeremy was fine after and have not noticed any such behavior since. He said it could have been behavior, he was tired or it could have been a partial seizure. Dr. Seigler has never been able to say with 100% accuracy that Jeremy has ever in fact had a seizure. Jeremy is missing his corpus callosum, has the VP shunt for hydrocephalus so he's never had a normal EEG even at 2 weeks of age. The EEG tells us that Jeremy could be having seizures or is prone to seizures. We discussed medicine but both agreed that these periodic episodes are pretty far in between plus they are not affecting his life which would be the reason for medicine. We also both agreed due to me that if Jeremy had a seizure with convulsions that we would end up in the ER. I also wanted to inform Dr. Seigler that Jeremy would be getting his spine fixed this summer.

Jeremy has became totally fascinated with magazines, he will thumb through them for hours. He gave me and Dr. Seigler a chance to visit as he was thumbing through one, being real content. I went to McDonald's to get Jeremy a Mighty Kids chicken McNugget meal on our way to respite, I keep books, toys, magazines in my car for these car rides. I took this picture of him being so very good in his car seat, thumbing through a parent magazine. It is so cute...

Jeremy's awesome week...

Last Monday, Misty, our HTS took Jeremy to Incredible pizza with some of his peers from school. This is one of Jeremy's goals to be social so this was a good chance and he did well. He followed the cues from the other children which is what he needs to do, see the way they act.

Wednesday, Matt our behavior teacher from ETL was here. I came to visit with him for a little while to discuss what has been going on. Then I went back to work, they went up to the ETL office so Jeremy can see visit with the office people. This is a good chance for him to behave like a big boy.

The rest of the week was spent at home, working on sight words, reading, going to the bathroom some on his own, going to get his clothes and initiate putting them on, helping clean up his dishes.

We will have a big dinner on Sunday, after church we will head to my parents to spend the afternoon.

Jeremy starts summer school on Tuesday, he will go 3 days a week for 5 weeks.

Summer fun....

I realize I haven't posted any summer pictures, but we really haven't done a whole lot of anything just chilling out around the house. Jeremy is having fun, playing outside as you can see. I am so enjoying the summer and feel like I am getting a summer vacation. We enjoy the getting to sleep later than normal, not have to rush off to school.

A game Jeremy loves to play is roll the ball down his slide, the dog runs to get it kicks it around, then Jeremy gets mad because the dog has the ball so he goes down the slide, chases the dog down, normally whacks him and gets the ball back. Then it starts all over again. It is humorous to watch. Let me just say, this is not the normal type of dog, he is great with Jeremy but dog, "Able" has figured out how to open the gate and let himself out" go figure this one. He will balance himself on the fence with his feet and use his nose to open up the gate so I had to put a lock where he couldn't get out. Jeremy and Able make quit the team....

We have the plans in place for our pre-op (mini-vacation) July 15, 16, 17 and 18. We are going to spend the night in Osage Beach do some fun things, go to the pre-op appointment on the 16th and from there drive to Branson, MO where we will spend 2 nights and 1 day doing fun things. I'm ready to get out of town and have some fun with Jeremy.

Summer blast...

Jeremy is having a GREAT summer, he's making some good progression in potty training (WHOA) he continues to verbalize more each day, saying new words. He's loving the summer, playing outside some in his little pool although he hated the big pool at my sisters. We occasionally in the evening will drive to Braum's or Sonic, get a ice-cream cone or a fruit slush and he loves them. It's been nice him having the summer to relax and not rush around, he has one more week at home before he starts ESY 3 days a week for a month but I think he will enjoy it. It won't start until 8:30am. I'm going to get with my agency and see if we can find someone in the mornings to come in so he won't have to get up so early and be rushed out the door. Pray we can find someone it's only about an hour a day.

We got our plans in place for our Pre-op (mini-vacation) in July. My sister & niece are going with us. I was trying to make it fun for Jeremy even though we are going for medical reasons. We are leaving Thursday, July 15 drive to Osage Beach, MO where we will spend the day/evening, they have an 110 store outlet mall. I have found some fun places/things for Jeremy to do, so we will go to one of these places. Miner Mike's (http://www.minermikes.com) Dino-space Adventure (http://dinospaceadventure.com). We will get up Friday, drive approximately 1 1/2 hours to Columbia, MO for our 1pm pre-op appointment which will take about 2-3 hours, we will have to see the Dr. and then do the hospital admission stuff, which will include blood work I'm sure. We are going to spend the night in Columbia, I found this place called Going Bonkers, that has food, indoor playground that Jeremy is sure to love. We will get up Saturday morning go back to Osage Beach or Springfield spend the night, do something fun and then get up Sunday morning and come home.

Our first week of summer vacation....

Has been just TOTALLY AWESOME !!!!!!!! and I could so get use to sleeping until 6am and still having plenty of time to get ready, make it to work without being rushed and rushing Jeremy around to get him to latchkey by 7:15am.

Memorial day weekend we didn't do much, we stayed around the house did some cleaning out of things. We did go out to Granny & Papa's on Saturday to visit. My mom had my niece and 3 nephews so we spent the day at their house, went to 2 garage sales because 2 is all Kellyville had that day, but we all felt like we got some bargains. I got 2 new Home Interior pictures that looked new. I was pleased. We went to church Sunday and came home and slacked the rest of the day.

Tuesday, Jeremy got to take a trip to the Aquarium with the HTS she said he had a good time and I think they were both worn out. Thursday our HTS we will have for the summer started, so excited about that because it's our favorite Para from school, she works well with Jeremy and Jeremy works well with her.

We were suppose to go to the OKC zoo tonight, but I got busy at work and when I got home put a load of clothes in the washer, Jeremy crawled up in my lap and went to sleep. We wouldn't have gotten there until 6 and then it's over at 8. Jeremy for whatever reason today, not sure was tired, Misty said after playing outside for a little bit they came back in, he grabbed a book sit on the couch and took a 15 minute nap. I told Jeremy we would go to that Kiddie Park in Bartlesville one weekend when it's not just steaming hot.

Jeremy did sit on the potty today several times and did his business once.....