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Friday, June 24, 2011

Summer days....

I'm wondering, can someone PLEASE slow down summer as we are about to hit July.  I don't even mind the hot weather we have been having, but it seems to be going by fast.  We haven't done a whole lot so far this summer.  We do have a family celebration scheduled for July 3 to celebrate Independence day, then we will go back to Columbia, Missouri to see Dr. Dan on July 21 and I'm taking the day before and the day to make it more like a vacation.  We did enjoy father's day out at my dad's after church on Sunday, we stayed the day and Jeremy had fun playing with everyone.  J just finished up his 2nd week of summer school, he sure does enjoy getting to be around peers, eating breakfast and lunch in the cafeteria.  Jeremy has also became quit the little pig, he seems to want to eat constantly, eating good, he should surely gain weight when we see Cyrus next week.  Jeremy is normally VERY exhausted come Thursday, after a week of therapy and school.  Jeremy is still recovering plus the re-building of his muscles does take lot out of him.  This week he is initiating standing more, more and lot plus he is getting faster at crawling.

We seen Dr. Kayser, Metabolic Geneticist who really had nothing new to add into Jeremy's complexity other than he looks really good and he likes seeing him.  He thinks at some point Jeremy's issue is going to be come down to the L1cam gene, we both have a significant change not recorded in any medical documents, so what all can go along with it is yet to be determined since it's not ever been documented.  Jeremy inherited it from me but since I have 2-X I had a back-up but Jeremy only has 1 so he doesn't have a back-up.      

I am making a good size dent in the home improvement list I had made and hopefully within 2 weeks I will have done all that I wanted to do on the outside except some landscaping.  I do plan to re-paint my kitchen, but that will require removal of wallpaper and it's hard to do when Jeremy is always home with staff, so that may be a fall project.  The guy got our new roof installed and it looks really nice and then got the guttering installed and it adds to the new roof so that all looks nice.  I've called a representative to come out to give me a quote on some replacement windows.  I then have to stain Jeremy's outside playground equipment with Thompson water seal to protect it and add color back to it.  I have struggled with how much it breaks my heart that Jeremy hasn't got to go outside much and enjoy his equipment this summer.  I have to paint the outside of the carport on the one side, plus the back patio they had to totally replace the entire back patio, so I need to paint all the new wood, which includes the side rails and trim.  I think by this weekend I will have finally purchased a new couch for us.  That will end my outside stuff and drain my budget I had saved for.      

Here are some pictures of Jeremy... he is so funny

J crawled up on the couch and went to sleep 

J in the library, he's on the computer so he thinks that is great

His newest thing, put him on the couch he puts the blanket over his face and goes to sleep

J in his room, doing some work with Misty

Once again asleep after school 

Monday, June 20, 2011

J and all his glory....

We were sitting out on the porch Saturday everning it was such a cool evening.  You are actually seeing Jeremy in all his glory, blow his raspberry, and tell me, "no" to every question I ask him.  He is so darn ornery but so stinking cute....
video

Thursday, June 16, 2011

Lazy summer days....

We continue to enjoy our lazy days of summer and I am getting spoiled.  Jeremy started Extended school year this week and goes Tuesday, Wednesday and Thursday from 8:30am to 11:30am.  He gets to go with Misty his HTS who is also his para at school and he loves that idea.  I reimburse her mileage.  They make sure to get there early enough so he can eat breakfast with his peers and then stay for lunch if he likes what they are serving.  He worked hard for Serena at PT on Monday and was willing to stand in his regular walker for a period of time.  Jeremy did wear out on Tuesday and actually took a nap.  J continues to gain muscle strength, his appetite has increased beyond what I have ever seen and he is becoming very vocal.  J now will sit for a small period of time with not needing both arms to prop him up and can almost sit with just using one arm to prop him up and use the other arm for something else, which is normally get into something and leave a web of destruction in his path.  He has rediscovered that if he stands on his knees that makes him taller so more things to explore, so now opens the front door and crawls out backwards and last night discovered what I call the nurses station with all his supplies which is where most the action happens so he had to check that out.  J just eats and eats it's like you can't fill him up, which is GREAT and if he doesn't gain weight at our next visit with Cyrus I will be shocked.  He is getting pretty good at saying, "I need help", "I want that" and it's becoming clear words.   
J ate 5 chicken nuggets, 1 bowl of Apple jacks, 1 bowl of fruit loops and was drinking the milk

His art work, He did his J, Misty drew the boat and he put the animals in except she had to make him put the monkey in the boat

He ate his mashed potatoes and fruit at school but couldn't eat the chicken poppers so Misty treated him to a grilled cheese from Sonic and he was Mr. Happy

Monday, June 13, 2011

"Let the Peace of GOD rule in your hearts." Colossians 3:15

Jeremy has been out of school for 2 weeks and we are for sure enjoying this summer.  It has been a blessing that he gets nursing and Maximum Health Care has been awesome in getting good nurses, he has Matt through the week which he's beyond awesome and then Loveline on Friday, who is awesome.  Jeremy gets to sleep in, do some relaxing and play around the house.  He does have PT, OT and SLP at home through the week and Misty his HTS started last week so she is working with him during the day on school work.  I was able to switch my hours to work 7am to 3:30pm and it's been nice to not have to battle with Jeremy in the morning.  Jeremy continues to make slow gains, he is wanting to stand more, I noticed last week that he is starting to be able to balance himself while sitting, he can use one hand to do something else.  Jeremy just continues to increase his speech, his newest favorite phase, like I would ever leave him in the car when we pull up somehwere, "I want Out".....
J was working the computer doing some school work
I have been thinking of this song the last few days, "Sometimes he calms the child".  The storm are still going on in my life.  I know that GOD could stop it if this was his will and know that all it would require is him breathe the words, "storms be still" and they would cease to exist.  I know he hears every prayer, sees every tear that I've shed when I cry out to him in not understanding.  He has reasons that are beyond my human understanding.  I am trusting his ways as this is what is best for my life.  He has calmed his child.  This is beyond what I ever imagined when we first got home back in February.  
 
"I will give peace....and none shall make you afraid." Leviticus 26:6

Friday, June 3, 2011

Our next stage...

“We walk by faith, not by sight.” 2 Corinthians 5:7

I’ve been asked what is our next stage, will Dr. Dan wait until Jeremy is walking, what is he waiting on?   The next stage is the same as what was put in motion almost a year ago and still our ultimate goal for Jeremy, he requires a spinal fusion to stop the progression of scoliosis and this will be with or without any correction. I no longer put limits or in my mind create a time frame or plan, why?  I live in Jeremy World and he continues to write his own book and I choose to walk by faith not by sight and trust God in his wisdom, not my own understanding which is always much better. I’m not saying I breeze through this and remember telling nurses back in August and then again in January/February, twice this will be our last stay and only surgery here.  When we went back to see Dr. Dan for our 6 week post-op follow-up, Holly paged our favorite resident, Dr. Robertson and he stopped by for a pleasant visit, we were discussing Jeremy and he asked me, “What are your thoughts on when you would like to do the next surgery?” OK, ask me I have a million answers, last August worked really well for me, get it over with before school is out, do it over summer so he can start Middle school with this behind him but finally GOD sent us here for Dr. Dan's expertise and he is the expert.  We are here to follow his plan, he's proven himself to have J's best interest in his heart and I trust him. 

I sent Dr. Dan an email last week with a picture and progress of Jeremy then got brave and asked the million dollar question, do you have any idea of what the future plans are for Jeremy’s spinal fusion? His reply, “I am not going to plan for the next stage of his surgery until I see you guys back in July. He continues to improve when I thought we had hit a plateau. I really don’t want to slow down his progress.” I know he doesn’t want to hinder the progress Jeremy is making and answer good enough for me because I was really thinking when we came back in July he was going to already have a date set.   

J finished up his first week of summer vacation and I know he was ready for the break.  I have to admit I am loving it, it has been a long year of rushing from place to place and I get tired of always running and rushing.  I am also going to get spoiled this summer with having so much great help for Jeremy, I get to sleep in, get myself up, get ready for work and leave.  J is sleeping in later, plays around the house with his toys.  He works hard for therapy, has started to ambulate his gait trainer approx 10-15 ft, we got his walker which he just stands there at this time.  He is starting to pull to stand more often, his trunk control is getting so strong, he is starting to climb onto things, move himself around a chair better. 

I had a late night training session in Miami, OK so when I got home at 10pm I was ready for bed.  J was still up with the HTS doesn't surprise me.  I hear him in the fridge while I am taking off my makeup and getting ready for bed.  I'm greeted in the hall with J bringing me an ice-cream sandwich and he says, "yummy", this surprises me because I bought them for my nephews when they stayed with us and J has not really liked them.  I gave him a bite which he really didn't want so I put it back in the freezer, quick glance and thought wow maybe he does like them more than I think, he's down to 1.  This is Jeremy world, so should I be surprised this morning when I went to grab a peach out of the fruit bin to find that he tested the theory of does ice-cream really melt if it's put in the fridge? or mom needs to clean out this bin before going to work? 

J was helping me do dishes, I come back into the kitchen and this was the sight, he was motivated and pulled himself up to stand...


“I will lead them in paths that they have not known: I will make darkness light before them, and crooked things straight.” Isaiah 42:16.