In the words of Jeremy...

Yesterday morning since it was J's day home he was bugging me for stuff and I was trying to get ready to go to work, which was a huge adjustment with the time change so I said to him, "Jeremy go check to see if your nurse is here" so I hear him thumping through the house, "Oh nurse, Oh nurse" totally cracked me up, she has a key so she can come in.

Last week was crazy, we lost our nurse, faithful, dependable one we have had since July.  I'm OCD and love structure in our lives as much as Jeremy does.  I hate staff changes and to train anyone new on Jeremy plus I don't have the most patience when it comes to showing someone Jeremy.  We did get one of the nurses we started out with last year, so she was familiar with Jeremy, and he liked her she just couldn't work the hours last year.

I flew from Tulsa to St. Louis on Friday, met Joni rented a car and drove to Columbia, Missouri this was a mini-vacation for me but we took the opportunity to meet with Dr. Fete, at the University of Missouri Children's hospital to talk family-centered care and partnering with families.   They are wanting to get more families involved and we have done some major ground work in Oklahoma with that, personally I think they have already done an awesome job.  We had a nice meeting, then lunch and trip to the mall.  We checked into the motel and got dressed for the event and headed out for the evening.  Pascale's Pal Silent silent auction fundraiser, it is dear to my heart as they are the group who brought Jeremy up a nice basket, gave him a colored nook and was a support for me so I wanted to support their efforts.  I got to visit with a nurse we hadn't seen since we were discharged, she was Jeremy's night nurse about every night we were on the floor, she had him before surgery and the few days after we were on the floor.  I never even took Jeremy up there for the night shift to see him so I told her that when we come back up in July we will make 2 trips to the hospital, one during the day and then back up at night.  I'll also make sure she is going to be there that evening or we will have to get in touch and meet up with her.  I flew back home on Saturday evening and got to snuggle with my little funny boy.....It was a nice flight both ways and I took power naps, it was awesome.....

Results of shunt series

The shunt tubing looked good but at the base of the skull it's rotated which means that something is causing pressure or it is just grew that way, but it wasn't like that in the 2009 brain MRI we did.  Dr. Marouk wants to repeat a sedated brain MRI, so he can get a good look at the ventricles and check what is going on wit the shunt.  His office will set this up.

I need help with this.....

OK the days of living in Jeremy world is amazing and cracks me up.  He always has something he wants to carry with him and it's normally more than he can hold and believe me what he picks must go no mater what if we are moving from room to room.  I told him this morning, let's get you dressed for school so here he comes crawling out of the bedroom, pushing his baby stroller which was full of things with one hand, box in the other and then reaches back for a magazine.  I say, "come on let's go mom is waiting".  He tosses the magazine toward me as he says, "I need help with this".  Really???

The 9 1/2 year old shunt.....

I have became fond of the device that was first explained to me, "we are going to plant a device in your son's head" my first thought was plant a device doesn't sound good.  It has been with us on May 6, 10 years almost Jeremy's life.  There was a time it was working too good and there was talks of maybe replacing it.  There is a good chance that we will be saying good-bye to that device forthcoming.  Dr. Marouk feels we are probably on borrowed time and I am close to agreeing.  CT scan revealed Jeremy's ventricles to be a tad larger than the last CT done in 2008, he wasn't overly concerned with that until he pumped the shunt and it was harder than normal to pump so that raised concerns.  We are doing a shunt series to check the placement of the shunt tubing because Jeremy was 2 1/2 when this shunt was placed so he has done lot of growing and changing.  If  the tubing is hanging out loose, it runs a risk of particles getting inside the tube and therefore clogging it.  Dr. Marouk said once we get it done to call him, he would take a look at the films and then he would call me and we will go from there.

The aching of a mother's heart and the the love of GOD....

I have been in one of my "feel sorry" for me moods because I was focusing on how unfair it is that Jeremy goes through what he does, plus Jeremy has been not sleeping well the last few nights so exhaustion adds in.  I received a call yesterday from school because Jeremy was running a fever and chilling so I went to get him.  We were once again a full blown UTI.  Jeremy would toss and turn last night so I laid there and would talk to GOD in the quiet of the cool night.  I then turned to reading some emails and got an email notification about a little girl who I've just recently been following her caringbridge page.  This little girl has had a rough time and last night reading mom's heart felt, pouring out her thoughts and hurting for her child broke mine.  I knew exactly how she was feeling because I have been there.  I know the pain of a mom, the ache of the heart when your child is going through so much and you want to take it from them, not allow them to go through it but you can't and it seems unfair.  This mom's comments, her daughter was beat up, cut up and crying to go home and my heart literally ached for them.  I started thinking, is this how GOD felt, his son was beaten, mocked, crucified and took the sins of the entire world upon him because he loved us so much, how is that for unfair?  I don't believe GOD gives special needs children to special parents because what does that say about other parents in the world.  I'm not saying that our children who deal with complex medical problems are martyrs but if you are a mom and watched your child go through some tough time you want to take it from them, your heart aches and hurts for that child.  I do believe GOD knows what we need in our life, being mom to Jeremy keeps me humble and focused on GOD, Jeremy goes through so much and just takes it in stride.  I was playing the words to blessings in my mind, what if a thousand sleepless nights are what it takes to know that you are here, work out your salvation with fear and trembling.  What if my greatest disappointments or the aching of this world is just a revealing of a greater source this world can't satisfy.  This world holds nothing for me, my hope is not in this world but it's in GOD the day that we are in glory with him.

Prepare to be amazed by the amazing J.....

The definition of amazing, "Great wonder or surprise".  I happen to think Jeremy is a great wonder but he's God's creation, created in his image.  GOD has had a plan for Jeremy while I was still carrying him, he had a plan for J before I even knew I was carrying Mr. J.....Jeremiah 29:11.....

The Joy of Jeremy world....

We have once again been enjoying this great Oklahoma winter, it’s hard to tell if it’s fall or spring but it’s been awesome and I love it and could actually live like this year round. Jeremy is doing good at school, continues to be vocal, says new words but we keep hearing, “I said”. The report from school is he loves going to the office to help out and everyone loves him. He is working hard for PT, he is side stepping, walking around items, pulling up, climbing. He got botox injections last week so we have seen a difference in his muscles. I thought he was going to end up on an antibiotic last week, we did an urine culture but when it came back on Monday, Jeremy was back to himself with no symptoms. Thank you GOD. I think the culprit is caffeine and sugar so I know to limit that intake. When we got home from church on Sunday, I opened up all the windows, it was a little chilly to be outside for Jeremy in the wind but it felt good in the house. Jeremy was feeling full of himself because in a nutshell he was, “ornery.” I keep waiting for his next word to be, REALLY? Because it’s like I’m always saying that to him. I came in to take the clothes out of the dryer and there with the clothes was the wal-mart plastic bags, really? I’m not sure if he felt they needed to be dry or what. I fold the clothes, go put them up, come back into the kitchen where I am cooking fish sticks and open it up and there is the splenda, “really?” to that one he answered yeah.


Here is a picture of the little boy, as you can see the “horn” appeared on Sunday…..

super excited that next Friday, March 9 I am flying to St. Louis, meet up with Joni Bruce, rent a car and drive to Columbia, Missouri and have a meeting with the Executive Director of the MU children’s Hospital, nursing director and a few others on family-centered care, they are interested in learning more about how to involve parents on various advisory boards.  Then that evening I get to attend the Pascale’s Pals Silent auction/dinner such a great organization to raise money and help families at the hospital.  I will then fly back home on Saturday afternoon.  It is going to be super weird to be there without Jeremy because it’s always been about him but I am looking forward to a few days of being away.