Lous Hydrocephalus Journey

Update on Lou ♥♥

2016-01-30T16:57:00.000-08:00

Overall Lou is Doing EXCELLENT !

I really do not have any bad stuff to write. Lou is currently being very HYPER for the past week or so. I'm thinking it might be due to the full moon that just passed and the cold weather that might be possibly causing it.

Today he actually went and got a hair cut at GreatClips. And he did extremely well. He was a little nervous but that was to be expected. He did really well thou. His favorite part was the hair dryer. Its always calms him down.

Hes doing really well in school. He is learning SOO MUCH more this year then last year. I don't know if thats because they brought it down to his level or rather or not its because he's growing up.

Over the past few weeks i've noticed that hes starting to become that adolescent child who is starting to become the teenager. Which is really sad to me since he JUST turnt 10.

This year he wanted to have his party at CI-CI'S so that was different then Chuckee Cheeses. But he really had a ball. He loved the different kind of pizzas and the little bitty game room.

But i'll be back later to update more :) Until then.

♥♥♥♥♥♥ROCK ON HYDROWARRIORS ♥♥♥♥♥♥

NEW PICTURES... yayyyy.

2015-09-10T18:29:00.001-07:00

ADHD Isnt real..... EXCUSE ME??!

2015-09-10T18:19:00.000-07:00

im so tired of seeing posts that says "ADHD isnt real" or my new favorite one "When i was a kid there was no such thing as a behavioral problem they were called a spoiled little brat"
Well heres the thing. The reason why there wasnt no such thing as ADHD is because IT DIDNT EXIST. so yes it wasnt there. BECAUSE they didnt find it until the late 1980s, yes they can PROVE that adhd is real and that a child has it based on a Brain Scan.
Now the behavioral problem:: If there wasnt such a thing called a behavioral problem then tell me why a NONADHD person can take ridilin or methlyphenidate or any other adhd medicine, and it treats em like they are on crack or coke or another speed drug. but when a person who has ADHD take the adhd prescribed medication it slows them down.Or a adhd person can drink a cup of coffee or can take caffiene or eat sugar (you know the stuff that is suppost to speed you up) it normally slows them down......

Now why it aggravates ME!!
When your youst to having around a happy smiley child you know everything is ok. You literally have no worries. But what if that child somehow wakes up one morning and gets frustrated over the littlest thing. If they drop a cup of milk, spill a bowel of cereal, or well just busts out crying for no reason what so ever.And yes the two above they happen before the crying meltdown. Sometimes you can not cheer them up with in 20 secs. its not a "stop or imma give you something to cry about" or something else along them lines. They can not help it. It scares them. and what about for the ones who has more then ADHD ?! you know that thing called Anxiety. or another indivisible illness.

If you see a child going into a meltdown or throwing a fit. walk up to them. sometimes it can take the littlest thing to throw a child out of a meltdown. or to calm their fears.
I remember and i still have to tell lou this when we walk into walmart "Nobody is going to hurt you, if they do you have the permission to slap them" or i'll tell him that i will slap them. and then he'll start to smile because he knows everything is ok. When you see us inside of Walmart he is NOT walking hes sitting in the "car buggy' as he calls it. it secures him. and sometimes hes on my phone listening to music and yes sometimes hes singing along and sometimes im singing right there with him.

Adhd is rough and Anxiety is tough but its worth it. When you let the little one know everything is ok and even strangers comes up and see whats going on and (normally its the older generation to come up because they know that something isnt right) it lets both parties sees the blessing that comes with it.

Lou is 9 years old who gets confused with being a 12 or 13 year old. hes talks like a 15 year old but has the mind as a 2-3 year old and he is my world Along with my other little brother Sam. Sam does VERY good with him, you'll even hear Sam (who is 8) tell him "Its ok Lou i wont let no one hurt you" Sam will comfort him when he can tell something isnt right. When the adhd is kicking in.

Adhd isnt just about being hyper. Its about being hyper, wanting attention and not just wanting it but NEEDS it. he thrives on it. and it helps with the invisible illness. Lou will also find comfort in sitting on the floor inside of a grocery store when they dont have the "car buggy" so if you see us inside of a store and were stopped in a aisle 9 out of 10 times you will see him sitting on the floor. And when you see a child sitting on the floor dont say "eww thats gross they shouldnt let their child sit on it" Well guess what IF IT COMFORTS THEM LEAVE THEM BE !!! sitting on the floor never hurt nobody. as long as the child isnt sitting in harms way then its alright.

This post is longer then what i planned on but thats ok.I hope everyone gets a little insite on ADHD and i hope you dont judge a child so quick next time you see a child not acting right in public. Theres a difference in a child with adhd and a child that isnt adhd. Sometimes you can tell the difference and sometimes you cant. Just dont judge the child. As a cashier and as someone who lives and takes care of a special needs adhd little boy a person judging a child or says "if that child was mine...." it irritates me so bad and all i can say is "i dont judge kids and most of the time they ask why and i tell them and they understand. but judging a child it just shouldnt happen.

weird headaches and alot of other stuff.

2015-03-30T19:57:00.001-07:00

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 :)

Another headache day 2

2015-03-18T17:18:00.001-07:00

Once again another headache. Not as bad as yesterdays but i dont like it in the least. Sometimes i wonder 'Why cant i just have to worry about a silly little cold or Silly ol virus ?! ' but then i come to senses this little boy is much much stronger then that. hes my lil fighter and my aggravating lil brother. Yes i would love for him to be 'normal' but hes my rock and my Hero. Hes been thru so much and still striving like nothing is happening and whats 'unfair' to some is 'normal' for him.

Neurologist appointment!

2015-01-05T14:11:00.000-08:00

Last Tuesday Lou had his Neurologist appointment to discuss his EEG results that he had back in Early December. Dr Livingston said that they are POTENTIAL seizures, meaning they could be but we are not to sure. He is Very high to have them thou. Since he hasnt had one in about a week or so he wants us to try to record them when he has his 'episodes' and if they do continue or start to pick up again he wants us to admit him into the hospital for about 2 days so they can do a Video EEG. but the only way that will be certain for us to catch them then is if we keep him up like we did for the EEG.

He did look at his CT Scans from his infant years and his most recent ones from 2 years ago and he said he is doing amazingly good! He complmented on us saying we doing a Excellent job with him.

According to Dr Livingston he is not suppost to be doing everything he does from the reads of the scans. So that itself is a BLESSING.

but if they are still continuing with in a year then we go back. or if they start getting closer together or start getting stronger for any reason then he wants Lou to be seen right away.

Just keep Lou in your prayers as hopefully this is the last of our Journey with petite Mal seizures then rather it be just the beginning! Thankyal so much !

New Pics Of Lou !

2014-12-09T17:02:00.000-08:00

Lous EEG is thursday on the 11th !

2014-12-09T16:39:00.001-08:00

So Lou has his EEG Thursday morning for his absent seizures. and hes really excited about it. not about the EEG thou. He's excited because the doctor told us he needs to stay up til atleast 11oclock and up by 4. And i told him 2 nights ago that he gets to stay up until momma gets home. So now he keeps asking 'so i get to stay up tomorrow night and do whatever i want right?' or 'is tomorrow here yet i want to stay up and do whatever i want' and keeps saying 'i get to do whatever i want tomorrow night don't i Amy' hes tickled to pieces he gets to stay up late. but he doesnt want to stay up on the weekends. Go figure that one out.

Absent siezures OH NO !

2014-12-03T15:44:00.000-08:00

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??!

2014-07-12T20:49:00.001-07:00

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 !

2014-06-24T04:56:00.001-07:00

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.

update on Lou and his ADHD.

2014-04-11T13:59:00.001-07:00

So lou had his appointment for his adhd last monday [I'm late i know] ---AnYwHo--- He had it last monday and they are wanting to try a fast release on him in the afternoon. he is up 133 lbs at just 8 years old :/ and the time before that he was 115 back in November when they checked him for his reflux. They are wanting to try and calm down his eating and possibility loose some weight. they wouldnt be worried about his weight but his blood pressure was a little high this time around while the last time it was in the normal range. They said that since it is a fast relief that it shouldnt keep him up at night time. Momma asked that because me and her both don't want to put him on a sleeping pill. we won't him to be able to go to sleep on his own and they said since it is a fast relief it shouldnt keep him up:) it will rare off so he can be a normal child and run off his energy ! but thats his update for April 11th 2014 :)

Special Olympics 2014 Rock Hill area 11

2014-04-11T13:53:00.000-07:00

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 !!

2014-01-19T18:23:00.001-08:00

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 :/

2013-09-24T16:19:00.000-07:00

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:)

2nd grade here we come !

2013-08-23T20:21:00.003-07:00

Guess who got got bragged on today by his teachers Thats right! Lou did So so so proud of him! His teachers told momma yesterday that he is the most well mannered 7 year old they have ever seen! Said he is way beyond their expectations. His main teacher said even in the halls and the cafeteria he always says "yes maam' no maam" thankyou" "your welcome" Yes i am a VERY PROUD Sister !

ANDLou had a wonderful day today at home AND at school today. SO proud of him!
Lous teacher did say that she is not pleased with his IEP Goals and outcome so she is going to watch him for another week and then do some changes to his iep chart. I see this kid gettin good reports and outstanding results this school year ! really looking forward to see where this school year takes Lou !

August 16th

2013-08-01T19:08:00.001-07:00

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 :)

Lou's recent pictures :)

2013-07-17T14:18:00.001-07:00

Lou has gotten into funny faces :)

2013-07-17T14:17:00.001-07:00

Lous Story !

2013-07-16T20:55:00.000-07:00

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.

He knows Lous Name !

2013-07-02T15:27:00.001-07:00

This is Lous Hydrocephalus Video that i made him a couple years ago <3 I hope yal like it. I think i posted it here before but cant remember. Today hes been cranky and i think its because hes about to get sick :/ I pray not but he is gettin really irritable today and normally that is the reason ! Please keep him in your prayers. Of course i know yal will :) Thats why i love the hydro community! feel free to share the video also.

Friday June 28th

2013-06-28T23:56:00.001-07:00

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!

Stitches.

2013-04-15T12:05:00.001-07:00

Today lou got his stitches out today and he was a champ the whole time :) heres some pictures that we took today while waitimg on the doctor to come in :)

Headache tantrum oh my !

2013-04-14T17:45:00.001-07:00

Lou started having a tanturm/ headache at about 7:30 tonight. it started as a tantrum and then ended up as a headache. he is coned headed where his skull does not come together he complain about his head hurtin there. but I felt the spot and there's no buldge of fluid. so definitely going to tell mom about it and see what she has to say. it kinda freaked me out because this is the first time it has happened. but no vomit so this is not a worry attack or nothing. just one weird headache. but since it is where his skull is not coming together it kinda has me worried

march 25th, 2013

2013-03-25T16:39:00.000-07:00

so today i would have to say was wonderful for Lou ♥ He started a new medication. Metadate CD 20 mg and it was like he was a total different child. I know this is the first day but i think we have a winner :)
They changed it from methaphenidate because it wasnt lasting long enough, he was being extremely loud, hittin walls, bitting his clothes, and really hyper. and today the therpaist and his teacher said that today was wonderful for him AND he said "I LOVE MY NEW PILL"

but on saturday we will see how his anxiety does with it. SO THAT will be the real tester <3