Tuesday, September 24, 2013

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:) 

Friday, August 23, 2013

2nd grade here we come !

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 !

AND
Lou 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 !


Thursday, August 1, 2013

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 :)

Tuesday, July 16, 2013

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.

Tuesday, July 2, 2013

He knows Lous Name !


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 28, 2013

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!

Monday, April 15, 2013

Stitches.

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 :)

Sunday, April 14, 2013

Headache tantrum oh my !


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

Monday, March 25, 2013

march 25th, 2013


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