Yet another UTI (Urinary Tract Infection) for Jeremy

Jeremy started Monday, running a little fever, cloudy urine, vomitting so like expected he tossed and turned, up and down Monday night.  I was exhausted when it was time to get up on Tuesday so turned off the alarm and got an hour more sleep, took a culture in to the urologist office.  Then he started running a higher fever but maintained.  We got the results back yesterday they are putting Jeremy on a different antibotic to treat the UTI for 10 days.  We are going to insert a foley cathear at night, this way his bladder can drain and the urine won't be sitting in there which is a breading ground for bacteria.  Jeremy was already feeling better this morning. 

Set your affection on things above....

                There is never a dull moment in Jeremy world.  I was cleaning up his room and found this in a toy I have no idea how long it’s been there but I had to giggle and wonder, really, what was he thinking?  This was once a cutesy orange if you have ever had one they are good, Jeremy loves them and they are super easy to peel.  I can say this orange was tortured by natural causes and no way harmed by the microwave which is how Jeremy usually tortures something.   

                My mind started to ponder perhaps there was a lesson in this as you know I live in Jeremy World and he teaches me.  I started praying and asking for wisdom and found the verse in Colossians, 3:2, “Set your affection on things above, not on things on the earth.”  This was a perfect example because this was once a delicious orange, but you seen what happened, it shriveled up and no longer edible.  I am truly blessed beyond what I deserve and last week I met a  precious 10 year old girl, who has just pulled on my heart.  I don’t know how God wants me to minister to them and maybe GOD is going to use them to minister to me, it’s never about me but always about God.  I am praying for the family every night.   A trip to Wal-Mart a bought book, magazine, moon sand, bead art to occupy her time and it put a smile on her face. 

                I went to straighten up my counter top last night only to notice that all the prunes were missing from the bowl.  These are individually wrapped so they stay fresh but J can open them.  He loves prunes which works great because it keeps him regular.  I was pretty sure him eating all of them would not have produced a good outcome, literally.   I was happy to find them all stuffed inside one of his glasses in which he put the lid on and put back in the cabinet.  I am excited that we are officially one week with Jeremy asking and using the toilet, no dirty diapers.  We graduated to the night time diapers for accidents but he is just using 1 a day.  He has to be straight cathed so this is working great.  I have bought him some big boy underwear and we are going to start trying it on him.  He may start school this fall in underwear.  My little boy was so worn out last night that at 8pm he says, “I rady bed”   

The Munk-Munk

I have always said J was a monkey, it's just a matter of fact.  Our wonderful weekend nurse taught him how to imitate a monkey, so now if you say monkey he automatically does his imitation and it's so cute.  He started the day before saying, "munk-munk", it took us a while to figure out he was saying monkey....

The days of summer....

We seen Dr. Miller last week for urology update, the kidney/bladder ultrasound looks good so that means Jeremy's kidneys are not being damaged our biggest issue right now is getting the urinary tract infections under control.  Dr. Miller increased the irrigation with Genytmician and J is on a preventive antibiotic so we are currently 1 month infection free.  We are going to repeat the urodynamic study on June 27 to check the pressures in his bladder.  

We had a super busy weekend, it was our garage sale we sold lot of our stuff didn't make a huge fortune but the goal was to get rid of.  My nephew spent the weekend with us so Jeremy had Johnathan and they had so much fun.  Saturday evening we kept James and Jeanna for a while, so Jeremy had a crew to play with and he was having so much fun but he was so tired.  I made them all ice-cream cones and took them outside, as they took a break from their game of dodge ball.  Sunday was for church, had a great worship service and we relaxed....

J going for a walk 

J playing outside with cousins

They were having a blast

Playing dodge ball

Notice that FG horn....

Welcome Summer break 2012....

                Jeremy got out of school last Friday, May 11 and he was ready.  He had his 6 month kidney/bladder ultrasound scheduled that afternoon so we got that done and will see Dr. Oren Miller next Friday for results.  Jeremy had a great year, we all seen so much progress and I seen maturity.   I am so proud of all his hard work, the way he always perseveres even when he doesn’t feel good he just tries and smiles.  I was happy with progress he made in spite of all the days he missed being sick, and he missed more this year than all his years combined.  I didn’t even advocate for any summer school, I just thought he’s done it all his life so I am hoping that an easy, laid-back summer at home will give him time he needs to rest.  He got 2 new nurses for the summer, he’s adapted to them and they will both be great with him.  We interviewed our new HTS that will work with Jeremy on his skills, she will be great.  We enjoyed a nice weekend, Saturday it was a nice, cool day.  We are getting ready for a garage sale next weekend over Memorial day, I have been cleaning out everything I can find, I am through cleaning so now will come the chore of gathering everything together, organize and get it priced which starts this weekend.  I am donating all the money I raise to the network I support, Oklahoma Family Network so we can help families who need it.

                I had a great mother’s day, we went to church, Jeremy picked me out a potted flower and then we went out to spend the day with my mom and siblings.  We had a great cook-out, lots of fun and laughter.  My 2 younger nieces were trying to win tickets to an upcoming concert.  They had every mobile phone in the house, home phone and had everyone calling to be the 10^th caller.  Then my one sister actually won tickets and it was so funny, she was screaming louder than the girls were, Jeremy was sitting there just watching all of this and I sit back and made fun of them. 

                Here are some pictures….

My mom, niece-Brandi, J and me 

J w/ Brandi (licked her ear)

My mom and sisters

Me with 2 of my nieces

J w/ Johnathan

Mommy and J 

Me with J and my mom

School was over

He fell asleep looking through the book

Last day of school 

Niece and Nephew, looking bad

Gremlin cleaned out a drawer for me

The Gremlin !!!!!

Jeremy has been so sick this week.  I was certain we were going to be admitted and was to the point of begging to be admitted.  It was a huge mess over the antibiotic.  Dr. Rippy after getting the urine culture called in the script to our Sapulpa Wal-mart, and they ordered in the wrong one.  I of course didn’t find this out until Tuesday evening when I called to see if it was ready.  They couldn’t tell me if they could get the right one by Wednesday and I wasn’t going to risk that.  I called every pharmacy in Tulsa, our nursing agency, finally in desperation called back Naomi she had me on speaker phone and Dr. Rippy was there and they got it ordered and it came in the next morning.  Jeremy would feel OK during the day, but at night he would run fever, toss and turn.  He did wake up yesterday morning feeling better so I let him go to his field trip at the aquarium, I knew he would love it.  He came home from school would take a nap, eat a little, lay back down.  He slept better last night and woke up with that Gremlin attitude this morning in which I’m grateful to see.      

               

 I started calling J a Gremlin because let’s face the fact, he is one.  I love to hear Jeremy talk, it is funny how he says the words and what he comes up with.  I love his little new personality that is coming out in him.    

I wanted him to sleep yesterday morning so I barely shut the door, I just sit at the table to have a cup of coffee and hear, “HEY”, I didn’t answer thinking he would lay back down, “HEY”, waited and then “HEY     HEY ” and the door swung open.  He came home from school yesterday and took everything out of his bag, and takes out a book and says, “I take thss”.  I told him that is going back to the school.  This morning I am not sure if he was talking in his sleep or just woke up for a bit but I could hear him laying there saying his favorite phase, “I sid, I sid” and finally, “I sid I sck”  just totally cracked me up.  When he gets ready to go to bed at night the stroller with the babies, shoes, whatever else he feels needs to be on the stroller must lay on the foot of the bed, if they aren’t you will have to go get them and poor babies have laid there all week.  This morning he was pointing saying, “I wat tat” I said you want the babies, “YEA”, I get them down push the stroller to him and clear as day he says, “Hey babies”.  

The GOD of yesterday is the same GOD as today.....

It is an amazing time in Jeremy World this Oklahoma weather minus the threats of tornadoes have been awesome, but growing up in Oklahoma it is what it is.  I am grateful for what GOD has allotted us, the cool, spring weather.   

                J is J and only has 2 weeks of school left (WHOA).  Jeremy is pulling himself to objects, still has trouble getting his legs under him but he is getting there, one day last week he got brave and let go of everything and just stood in the middle of the floor for 2-3 minutes like he was staring me down, I told him go ahead take off walking, I dare you.  He is cruising around objects.  When I got home yesterday, Matt his behavior teacher was there to see him and hadn’t seen him since last August.   J holding my hand and Matt’s walked into the house, did the left/right leg and was able to lift his leg to get up the step.  I continue to be in awe of him.  Matt commented on how well Jeremy was doing, getting around, matured, vocalizations, obeying, and then it was time for Matt to leave and no kidding my son turned into a Gremlin.   

                This morning I put shorts on Jeremy, which this time last year I couldn’t because he was dragging his knees, not standing so he would literally tear his knees up, but this year he’s a different child.  My mind went back to when Jeremy was 4 days old and discovered he was missing his corpus callosum and the words the Neonatologist’s spoke to me that cut into my soul, “He will never walk, never talk, he will be deaf, blind and mentally retarded”.  In those words spoken she stole my dreams this wasn’t what I had visions of when I got to first look Jeremy in the eyes, who had been kicking me for months.  I was thrown into a medical world that I didn’t want to be a part of and started to live a defeated life and then there was the first follow up with Dr. Cyrus, everyone should have a Dr. Cyrus.  Dr. C words were, “we don’t know what Jeremy is going to do, so we are going to maximize his potential, let Jeremy show us what he can do and don’t let him slip through the cracks, I will do my part and you do your part”.  I had never in my entire life even known a child born with any special medical needs but that moment I got my vision back.  Dr. Cyrus motivated me to be the mom for Jeremy plus at that point I was still afraid of him, which is no longer the case I dearly love and respect that man, he is one of Jeremy’s biggest fans.   

                There have been many bible verses that I have claimed since Jeremy was born, James 1:5 is one of them, “If any lack wisdom, you should ask God, who gives generously to all without finding fault, and it will be given to you.”   I lack so much wisdom when it comes to parenting Jeremy.  The God to Daniel who saved him from the Lion’s Den is my GOD so because I believe in him, put my faith, hope, trust and life in his hands, I have that same God as yesterday.  I don’t pretend to understand all of life but I do trust and have faith in God.   

                I remember when we first looked at fixing the spine, my prayer was, “GOD heal his spine”.  I knew if this was the plan he could do it, he put Jonah in the belly of that fish and spit him out on the shore.  I started praying send us to that surgeon/facility that he had picked out because I knew he had that place, he knew J was going to have a difficult time.  When we went to St. Louis I seen a very negative surroundings and left defeated, crying out to GOD, really? This is it? Help me to see it.  My soul was unsettled and there was a drive, that told me keep going you aren’t there yet.  I never dreamed that we were only 1 hour, 100 miles from St. Louis was where we would be.  Then Dr. Dan, I know I frustrated him with endless questions and he frustrated with me with no answers, it took us a few days to see that I was trying to understand and I seen that he was doing what was best for Jeremy and was trying to understand and I never doubted him.   I was blessed with his positive attitude and words.  A caring community, hospital that took us in because I was there alone and was knocked to my knees.  I was blessed with the first resident I ever trusted or valued the opinion of, to hear him say, J recovers fast.  I think everyone needs a Dr. Dan, that cares about Jeremy and wants what is best for him and can say, “we aren’t proceeding because this isn’t right for J, and my medical knowledge tells me one thing but J is doing another thing.”

I think everyone also needs the GOD of yesterday for today, because he is unchanged......