NEW PICTURES... yayyyy.

 

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weird headaches and alot of other stuff.

It started right after before the solar storm started. Lou complained about headaches, being tired and even throwing up. the throwing up was from a stomach bug but everything else i believe is from the solar storm.

well that was before this past week and this week (today)

Lou has being very weird these past two weeks. and i dont take "weird" litely when it comes to him. I mean he'll be extremely hyper and then suddenly bolt back down and pratically fall asleep (he did take 45 min nap today he hasnt done that since he was like 3-4.
I dont want to be scared about it but i honestly dont know what todo when it comes to him. i know that all i can do is PRAYand keep my faith in him always.
please keep lou in your prayers and we will of course keep yal updated on how our hydrowarrier was with him :)

Absent siezures OH NO !

Two weeks ago Lou started having very noticeable absent seizures. He's always had them but they are starting to get stronger and lasting just a little bit longer. The next day me and momma asked his teacher if they have noticed him 'spacing out' and her answer was 'no but we'll keep an eye on him and if he does they'll send a note home' well 2 days ago we got a note saying he 'Lou spaced out a few times but he had a wonderful day' and at this point its got me worried since his teachers are noticing it now. so i called lous doctor and talked to his nurse and told them about him having the stronger seziures and asked them 'how bad do they have to be to get seen' and her exact answer was 'he needs to be seen as soon as possible'. So yesterday we took him to the doctor and Dr Goodbar said from what we are seeing and describing his episodes are indeed absent seizures. He has scheduled him to have a EEG on December 11th and he goes to see a neurologist on December 30th and we'll know more then

Dr Goodbar doesnt see it neccessary to put him on antiseizure medicine yet but he said it probably will happen in the future.

So i ask everyone to PLEASE keep this boogerbutt in your prayers. Hes been thru so much already in his short 8 years of life.



But what we do know is that Dr Mclanahans office doesnt think its his shunt and they do agree that the best place to start is getting a EEG and getting it looked at by a neurologist.



Seizures CANNOT hurt you! They're just very scarey.



My nerves are shocked to pieces i really do not want Lou to go thru Seizures i'm not ready for this, but then again i wasnt ready for him to have 2 shunt malfunctions either. So with prayer and faith i know that we can get thru this with him !

Super moon ??! ADHD medicine??!

So..... 

don't know if it's this super moon or the fact Lou didn't have his ADHD medicine until 1oclock due to going to a baby shower to [help] control his anxiety but it's keeping this child up. Either way I'm not liking it. He has never stayed up to almost midnight besides with a shunt malfunction !

Hope this is nothing !

Ok so during the past week Lou has been acting a little strange. Last Sunday he projectiled vomit twice. One at 7 15 and then again at 7 45. Then on Tuesday he slept from 4:30 to 8 and then went back to sleep at 10:30 and slept all the way to 8 o'clock the next morning. And then slept again like that Friday evening but woke up at 4:30 am. 

This Sunday morning he bumped his left side if his head on the church pew. He didn't mean to but it wasn't on the side of the shunt. The shunt is on his right side. And he took a nap yesterday (monday) for about a hour hour and a half. somewhere between there. He went to sleep at about 10:45 last night and woke up at about 6:45 this morning. 

I'm really hoping this is just nothing but I dunno. Keeping my fingers crossed and my hope and faith high as they can possibly go. 

Oh and he made it to 4 years surgery freon the 5th of June :) we are at 4 years and almost 3 weeks post op. So exciting. 

Special Olympics 2014 Rock Hill area 11

Today Was Special Olympics and Lou did an AMAZING JOB at all of it :) They signed him up for Softball throw and 50 meter dash/run. He tied in FIRST PLACE for the softball throw and did 5th place for the 50 meter run. and then after all that they had lunch and then played around some and then went on home. They really truly had a blast and heres some pictures to go along with it ! 

 Lou And his Class <3

Lou noticed his scar !!

So tonight while I was laying the boys down  Lou noticed his shunt scar from the tubing. He has a tendency to rub his stomach while he goes to sleep. Well here's the conversations :) 

It was hilarious !!

Lou: Amy what is this ?!

Me: what is what??

Lou: this on my stomach WHAT IS THIS?

Me: (with my flashlight on my phone on and laughing) that's your scar from your shunt surgery.

This kid just now noticed his scar from his surgery. And it's goin on 4 years old come June !

acid reflux :/

So 2 weeks ago Lou starts having gagging sensations and even clear vomiting and sometimes a headache. We took him to the doctor a day after it started due to neurosurgeons orders and the pediatrictian passed it on as a virus and said if he isnt better with in 2 days then call them back. well we waited for 5 days instead (waited til monday morning) and they made him an appointment that evening and they wanted him to see Dr Goodbar (his main pediatrictian that sees him) and he said he still doesnt think the gagging and vomiting isnt coming from the shunt and that it sounds like a gastroligist thing. And he wanted to treat him for Acid Reflux [GERD] Well with in two days of the medicine he quit the gagging and the vomiting and then the gagging started back and then stopped again. He has another appointment tomorrow morning to see Dr Goodbar again for a checkup and see what we have to do now :) He is currently not vomiting and only gagging some mornings and seems to do pretty good. He takes his Zantac [the medicine they prescribed for the reflux] right after he gets up and then eats and then again  at about 6ish -6 30ish right before his last meal for the day:) 

August 16th

So August 16th can not come fast enough! What is so important about the 16th?! Well it's Lou's neurosurgeon appointment:) get to find out if he is still over draining and to make sure everything is still alrite with him :) a little exciting if you ask me :). The picture was just taken while he is asleep at 10 05 pm August 1st :) and the other one was taking on July 26th on vacation this year :)

Lous Story !

Lou was born on Jan 10, 2006. He gave momma the worst labor that she went thru. He was delivered twice. And the cord was wrapped around his neck. so not only did he have fluid on his brain but he was blue, daddy said he looked like a blue berry and his head felt like a water balloon. 3 days later he went under surgery for his 1st shunt Mclanahan didnt know what to think about him. He said we need to watch him carefully bc he honestly didnt know if my little brother was gonna make it or not. at 2 months he started goin to his eye doctor. said he had a little stignatism and he wanted to put glasses on him but since he was little he said it was to early. at 3months he started seein his EIP : Stacy . She helped him get up to some potencial but he still wasnt rolling over. he scooted with ONE arm, he doesnt use his right arm. at 13 months he started goin to therapy over at touch stone therapy in pineville nc for PT. Then a few months later when a spot for OT came in he started it then. And then later on Speech. when Lou was 17 months old Sam was born we still wasnt gettin no where He had to be carried everywhere. His terriable 2s started coming in and lets not forget about his 15 month molars. He was wanting to start potty training then to. but he couldnt walk. so at 22 months His PT said lets put him in a AFO, leg brace, to strengthen up his right leg and with in a week he started pulling up. with in 2 weeks he started takin baby steps in another 2 weeks he was walkin full speed, falling but he was walking. His therapist was proud and me and momma was proud. at age 3 he started school with Mrs. Charity and Miss. Mona at Child Development center. they wanted to put him in another brace so we got his pediatrictian to write a prescription for it. It said Cebral Right Hempistere on it. This is when we found out he had a touch of cebral Palsy. Dont know much about it but him not liking crowds and loving water so much made some since now. But everyone at CDC feel inlove with lou. They loved him they said he brightens their day. :) then Feb in 2010 on a wednesday we took Lou to the doctor, his pediatrictian because he would get randomly sick and they passed on as a virus the next day we took him to Piedmont Medical Center and they passed his getting sick as a virus. Friday morning on the 12th momma called Lous neurosurgeon and told her to take him up to Levine and get him checked out because something wasnt right. Momma rushed Lou to  Levine Medical Center, Charlotte, NC, and they did a CT and it confirmed that his shunt was completely out. The doctor told came back and told momma they are getting a operating table ready now they have to get him into surgery his shunt has stopped working and he is in danger. McClanahan was out in Texas doin some kinda voluteer work so his 'coworker' did the surgery for him but kept McClanahan in the loop about EVERYTHING. In two days (Sunday) Lou got to come home and even started watching Tv just a little bit ! Then  4 months later He had another episode but this time he was screaming 20-30 mins at a time and then he would get sick with the watery vomit again. 11:15 pm momma got home and as she walked thru the door i told her i believe his shunt has went out again. And she said why? and i responded with he cryed for about 14 mins and then he got sick and it was nothing but clear fluid again like last time. And a few mins later Lou woke up complaining about his head hurting and got sick again. So we  rushed him back up to the er. this time it wasnt that bad bc we caught it as soon as it was goin out. so the next morning he had another surgery. Recovery went great and they also put in a shunt assistatnce in to let it pump slower and not work so hard. Lou came home a few days after the surgery and started PLAYING with a car on the floor, first time in 4 years!  a year later Lou went to his neurosurgeon for his annually checkup and it was discovered that he was overdraining so they spiked up his shunt to let it not over drain so much. McClanahan referred to Lou as "We have a tiger by its tail" He wanted to get him on some medicine so he can calm down because he said he did not need no ct to show that Lou does infact have ADHD so with in the next few months after he started school we got him on Ridilyn but it didnt workout, He is now on Methephenidate ER 20mg and it helps him out ALOT ! He is able to focus and he actually likes his medicine, Lou was not able to comprehend alot of the things that was goin around him and he knew it He is not noticing alot of things that he wasnt able to, he can count to 20 and knows how to write his name now. In 2012 Lou had another CT scan at his annually checkup and the Practical nurse, Amy, said that he is still overdraining and she was shocked because normally when it happens the shunt automatically malfunctions because everything gets sticky in the head, well LOUS ISNT. So they raised his shunt to the maximum which is 190. Amy said that since he isn't showing any signs of any damage or worriedness they was going to leave it alone but we would be lucky if he doesnt have to go thru another shunt surgery. Guess what ! Its another year later and he hasnt had another surgery :) His current shunt just turnt 3 years old on June 5th. He goes back to McClanahan for his yearly checkup and CT in the beginning of August.
Hydrocephalus is just the beginning for Lou. After all of this has taken place Lou has been diagnosed with ADHD, SensoryProblem, CVI *Deals with the eyes* and even brain detteriation and brain hemmorging before birth.  but the thing about the detteriation McClanahan said he has never seen it happen before but Some of Lous brain has came back ! Lou has and will continue to shock the doctors. Hes our Little miracle baby. And yes some days are harder then others but at the end of the day he can still put a smile on our faces.

Friday June 28th

Well tonight Lou went to be with his head hurting :( and now I can't sleep. I worry so much about him. I worry what if this time the symptoms before aren't going to be the same as before. What if he does t get the sickness or gets the sickness but there's also food in it. It's hard and sometimes impossible to do. But I will do what is best for him.

And I will be keeping a headache log from now on for him!

one weird Bad Headache.

Well Lou had a bad headache today but it was weird how it happened.
We went to the store momma got out of the store *it was raining and with mine and lous bad balance didnt wont to risk it* And about 2 mins after momma went into the store Lou starts screaming and it gently went down to a little whining. We live about 9 and a half minutes away from the store and he whined about his head hurting the whole 15 minutes. The weird part is that he was fine and dandy when he got out of the car. It was strange to me. He has NEVER done that before. He was acting like he does when his shunt malfunctions but he never once got sick.
But right now he is asleep, and comfortable as can be♥ went to sleep about 8 25 EST

Just some banners from the hydro association.

Lous appointment August 8th 2012

Lous appointment :)
They changed his setting to 200 and it was 190, his shunt is still pumping to fast even with the shunt assistance. His ventricles are really small BUT the neurosurgeon assitance said that shes really surprised because normally every thing gets really sticky but his isnt :) So got some good news and some bad news today but good thing is it isnt severe so go back in a year if everything goes smooth from here to then♥

:)

Well today is 3-16-2012 and let me tell you Lou has been doin so good for the last week. I havent updated his blog because honestly he was being the same kept getin red and yellow at school and i really dont want to document his bad behavior. But condafind out his teacher was allowin him to use a IPAD2 which is a BIG NO NO but as soon as we found out we stopped them. The IPAD 2 will mess with his shunt and cause him to act really different. but this past week he has been nothing but good at school and i am SOO proud of him. So GOOD JOB LOU!

feb 18th and 19th

Lou has been SOOO loveable these past 2 days:) I love it! Hard to believe hes being loveable. hes normally so mean! Onthe 18th we layed on the couch for about a hour or close to it:) Hes came up to me several times and wanted a hug. AHH I love when hes so loveable:)

Lou 2-16-2012

Well Lou had a BAD day today at school :( His teacher said he was super hyper would not listen and didnt follow directions the entire day! He Cursed me this morning and i told his teacher and was not very happy about it And it made Lou very dissappointed in his self. Im really hoping Lou will become better at being his self and quit being so "bad" Iknow he cant help it but something hast to give.
I also made Lou tell Mrs. Duncan that he was sorry how he acted toward her and the other teachers today. So that was a start.
Lou ate 2 salads when he got home so that was good for him. He LOVED them :)

Feb 6-8th.

Well what to say for this week. We have been to the ER to back home and played sickness all week. and its only Wednesday!
Monday Lou went to school. It was like no other school day. We picked Lou up from school and His Teacher said that He didnt feel to good and she asked him what was wrong and he said that his "Tummy Hurts" Well we get home and as soon as he gets out of the car he VOMITS EVERYWHERE! But its not a normal vomit! it honesly looked like a "waterfall" vomit. It was SCAREY! So we take him to the ER and they tell us that his shunt and the tubin is fine PRAISE GOD! We get back home and hes fine:) Tuesday we get up and he goes to school and they have to move his "car" to yellow:( He did not want to listen at all. Wednesday was the same. still didnt want to listen Then later on that evening He gets sick and his bowels is really loosey fied, And says I think im gettin the stomach virus. He JUST got over the stomach virus. Hope hes not catching it again:)
Lets see what the rest of the week has in store for Lou:)

STUPID COLD:: 2-1-2012 and 2-2-2012

Lous cold is literally kicking his tail in. He layed down yesterday at about 5 30 and got up at ablout 6 45. If he wasnt sick i wouldve swore up and down the shunt was goin out again but since he has the cold, No worries:)
This morning on the 2nd Lous attitude was terriable. He keeps on saying phrases he knows he isnt suppost to, like " Dont tell me what to do" Im gonna smack you in the face" etc etc etc. But as soon as he got at school his attitude changed COMPLETELY. Im really hopin his attitude changes by the time we have to pick him up from school:) Meanwhile i'll be back later tonight to tell ya what he does this afternoon:)
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playing outside in january equals sickness:(

The title explains it all:( Saturday lou and sam wanted to play outside since it was nearly 65 degrees. We really didnt want them to but it was just a pretty day outside. Rarely ever does SC get a beautiful day in the winter so we gave in. Sunday morning you could tell he was starting to get sick but no symptoms just the "look" in his eyes.
This morning (Monday 1-30-2012) He woke up at 5:30 but fell back to sleep watching Barney. And then woke again at 6:15 when my alarm clock went off he didnt want to get up at all. We layed down til 6:35 and then i finally got up and got his clothes up and shoes and brace together. While i was putting on his shoes he did NOT want to partisipate at all he just wanted to lay there which is NOT like Lou at all. After i fixed his breakfast he told me "Sissy im sick i dont want to go to school" so i told him " Well we're going to take you but if your teacher feels like we have to come get you then we will ok" and with a sad little face he said "ok"
On the way to school he ate his breakfast like normally and then after he put his head on my shoulder which is DEFFNIATELY NOT LIKE LOU. and then once we passed his old school which is like 7 mins before his school he tells me again "i dont wanna go to school" It was sad :/ But as soon as we got to school the bell rung and he spurted on up:) So hopefully he'll be a brand new feelin good Lou:)