Just a Thanks to The Vicksburg YMCA

Take a look at Matthew's swimming video. Go to a Search engine and type in Google Video Search and then look for "hydrotherapy". There is a video there of Us in the pool and some things about hyrdrotherapy. I'm too tired to look up the link.

First, of all, Matthew only had 3 seizures today! yea! I think we are finally getting somewhere now. I can see them decreasing more and more. Could my little angel be seizure free one day? The doctors don't think so but I do. I wanted to thank the Vicksburg YMCA once again for letting us use their very nice indoor pool. We can use it all year long. It has done great for matthew's muscle tone. He kicks his feet like a champ. I have it on video if anyone wants to see the video, email me and I'll email you the video. Matthew's friend Katherine joined recently and if you just could see her face each time she's getting in the pool. It's like her whole face lights up. The YMCA lets our children use their pool free of charge. Our income is not that great and we barely get by but this is the one thing we don't have to worry about paying for that our kids love to do. There are not many activities for kids like ours and I use our pool time as get away time. I do therapy while we are in the pool but he's having so much fun he doesn't notice. If we are having a bad day and nothings going right, I load him up and take him to the pool. (siezures or no seizures) the pool seems to lessen the seizure activity too. Sometimes we just float, especially if he's drowsy from all the meds he's on.
So Thanks again to Mr. Wilkerson and the Vickburg YMCA. Using your pool has made a big difference in the life of Matthew and also his friend Katherine. (Her mom says when they turn the curve into they YMCA she starts kicking and laughing.)

Update on those Dreadful Seizures and New MP3 Host Click here for the host site

Okay, We upped his phenylbarbitol last tuesday. Only 2 seizures that day!! Yea, Then the next day he had 3 well yeah again, thursday he had 4 okay, what's going on. It kind of went up and down up until today. He had 5. It could have something to do with the time intervals between medicine. He's not wanting to take a nap and he fell asleep at 4:30 pm. I had to make him wake up and didn't get all his meds down until almost 8:30. That could explain why he had such a bad day today? Anyway I am making myself put everyone and everything aside to give him his meds on time but it's kind of hard if he refuses them. Anyway he has been an angel through them all. He's not gripy after a siezure. Sometimes he just grins really big and lets out a long sigh like "when are these things going to go away?" I had heard that oxygen levels can drop after one of these siezures so just to be safe we took him to get it checked. It was actually 2 hours after the last seizure when they checked it but it was normal. I was just told to check out his lips to see if they turned blue and that would be a sign of decreased oxygen levels. It didn't hurt to get it checked out. I just want to make sure I'm doing everything I can for my angel.

Hopefully and prayerfully, tomorrow will be another day. If you waited long enough you can probably here "God's Will" by Martina McBride playing. I found a free MP3 host. Matthew's song links are broken. I don't know what's up with the host for that site. As soon as I get time, I'm going to load it to MP3.com and have them host it. They will even host videos!

I'm going to bed now. I stayed up too late already.
P.S.
The cat has been laying by my mouse while I was updated this site.. lol everytime I moved the mouse, he tried to attack it. I thought that was kind of ironic.
Love Charlotte

Off Topic. Be Glad You don't have Crazy Neighbors!

This pic looks just like our neighbor,

all the way down to the Kackie shirt! THis could be a very sweet man but not true with our neighbor. He gave us a light pole in 98 during the last Ice Storm because ours was pulled down. We pd a few dollars for it and split and stacked wood on his front porch. Everything was fine and dandy. 7 years later he wants it back and filed an affidavit on us for stealing it. lol....

He told the judge we stole it this past January. lol We have several witness that know when we got including what all we did to pay him for it. The last few years we have had our Sunday School class help clean up his yard. Brought him food every thanksgiving and christmas, of course he complained about how the food tastes. I just can't be nice anymore. lol I have much more important things to worry about.

The judge said that paying him 100 buck for the pole or even giving the pole back wouldn't solve his problems. THis poor man really needs to be put in a nursing home and he REALLY needs to have his driver's liscense taken! He is the neighbor hood crazy man.. because we arenot the only one's he's tried to start trouble with.
Another thing he said is he didn't pay anything for the pole but he wanted either 100.00 back or the pole put back in his yard. I'm tellin ya, he thinks 6 years ago is 6 months ago!

Court was yesterday and I really wanted to go but Matthew had too many siezures to get him out. The devil is everywhere!! lol Just when I think, Lord I can't take no more, here comes mr. #$%^&* sending the cops to our house. lol I never realized I could take so much stress, although I have had a few heart palpatations and felt kind of panicky when I was taking a nap with Matthew after one of his seizures...., I've been doing pretty good otherwise.. lol

MATTHEWS SEIZURES
We upped the phenylbarb to 1.5 tsp twice a day starting tonight. The neuro finally called and said that we'll try the phenylbarb for a week and if we see no decrease in seizure activity we'll take him in for an EEG to see if he can tell exactly where the seizures are coming from but guess what? Phenybarbitol is not a preferred drug if a child has Lennox Gastaut. But I'm not a neurologist. Just a Ganny. So We'll see what happens. (Ganny is usally always right. lol)

More and More seizures. How much more?

Matthew is having more seizures. They look more and more like the Lennox Gastaut seizures. The upped dose on the Keppra worked for one day, one siezure then it was back to 4, now 6 today. 3 of them were the really bad one. I uploaded a video of the seizure. If you want to see it, you'll have to email me and I'll email you the link. It's a seizure, combo, meaning 3 seizures in one.

Life stops for us whenever he has the seizures. If he's eating, we have to wait until he wakes up to finish. It also affects his swallowing. IT's important that he doesn't aspirate and get pneumonia during one of these seizures.

I sent the seizure video to his neurologist and he is suppose to get with us tomorrow. I mentioned the Lennox Gastaut syndrom to the nurse and she said with Matthew's history it is very likely that he's got it. If so, it's kind of good news because then they know what seizure meds might work. THe siezure meds he is on now are not for seizures of LGS.

He's slept on and off all day because he limp and groggy after the seizures. The meds even make that worse. I took him to the doctor to get his ears checked to see if his ears were infected. His right ear was a little red and had some drainage but not enough to increase his seizure activity. He's on antibiotics anyway.

I was telling the pediatrician about the seizures and after we were leaving the doctors office, he had one in the hallway before we even got out of her office. Of course, she was in another room with a patient.

It breaks my heart every time he has a siezure. It drains him and it drains me mentally. I just want to snuggle up with him and not do anything. I have not felt like cleaning or anything the last few weeks. I have to make myself clean. I even try to take him to the pool and he'll have one there and we'll have to leave.

It's time to do something about it. I could live with the other seizures but I can't live with this because it affects his quality of life and his spirit and I can't stand that.

I'll post tomorrow on what the neuro decides. I was asked again about a DNR by our pediatrician. I told her I don't know. I'll have to be in the situation. Her example was, well if he goes into cardiac arrest during a siezure, would I want him revived? I said of course I would but then she said, what if he had to be put on a breathing machine because of aspiration during a siezure and possibly pneumonia. I just looked at her. I can't answer that question until the time comes. He's a tough little guy and he's done a lot more than what they thought he ever would so it's going to be a hard decision. ... I'm also going to take another cpr class soon because these seizures are very scary..
Keep him in your prayers every day.
CHarlotte

Lennox Gastaut?? Could it be?

Here's an email I sent to my support group friends. Hopefully there is something to this. I will be calling the neurologist as soon as I hear back from some of them.

We've been going through a variety of siezures the past year. I was researching and found that Lennox Gastuat sounds like what Matthew has. It's also possible because of Matthew's severe brain malformations (Static Encephalopathy). I was doing some comparisons and hoping someone might could help me see if this is possible. If so I also found that felbamate was a good seizure med for treating LG. I would like to know side effects. Right now we are on Klonopin, Phenylbarbitol, Lamictal and Keppra. I'd rather have him on ONE drug that is known to help these type of seizures than on so many where I don't even see where they are helping..Here's what I found on the WWW: My comparisons are in bold.
This syndrome is characterized by presenting multiple types of seizures. The most common are tonic seizures, atypical absence seizure and atony. It could also present with generalized tonic-clonic, partial or myoclonic seizures.Myoclonic seizures can occur before, during, or after the atonic seizures.

One type of seizure Matthew has is Myoclonic Jerks. Almost every morning he has a series of myoclonic clusters. Usually last about 3-4 minutes, followed by cold shivers.
That's when he acts like he's falling and reaches out to grab on.. starts out lasting about 5 second in between jerks and he grunts or sometimes cries in between. He ONLY has these when he's waking up. No loss of conciousness with these, just chills.
Associated manifestations are more common in atypical than in typical absences and include eyelid or perioral myoclonus, progressive flexion due to loss of postural tone, and localized motor phenomena, such as neck-stiffening or head-nodding
He has clonus in his feet and after the jerks are over he has clonus really bad without putting any pressure on his feet. Both of his legs will shake really fast. I can bend and rub his legs and it stops.Tonic seizures occur most frequently when falling asleep, but they can occur at any time of the day. They may also be precipitated by stimuli such as noise, contact, or movement.
We walk on pins and needles around here trying not to make a loud noise but even the slightest noise can trigger a tonic seizure.
Matthew has tonic siezures whenever he's getting really tired but mostly if he's startled by things like a door shut, or even if you drop a pen or pencil... Or he can scare his own self while sucking his bottle and have a siezure. His neck, arms legs and body bow, his head and body clenches toward the left, he stares towards the left. He gets very stiff. Then his mouth opens and draws downward. (looks like someone that's had a stroke) His face gets red splotches. When it's over he has subtile jerks and severely weak( is this atony?) and then he goes to sleep, depending on how long the seizure lasted. He can have anywhere from one to 6 of these a day. The longest one was 10 seconds.. What are the side effects of Felbamate and should I present this to our neurologist?
Felbamate has been shown to be effective for LG. In many cases, control has been achieved with this monotherapy, with minimal adverse effects

I'll post later about what we find out.
Charlotte

The Rainbow Meaning (Before Matthew's Surgery)

I wanted to share this. Remember the double rainbow we saw just before Matthew's surgery? This Says it all:

Every cloud has a silver lining

and every rainy day leaves behind a special gift

A rainbow!

RED is the colour of love, passion and life, of beautiful roses and life-giving blood.


Orange is the colour of abundance, tasty fruit and autumn evenings with its with their glorious sunsets



YELLOW is the colour of happiness, sunshine and shining flowers




GREEN is the colour of nature, herbs, fields, woods and the colour of HOPE.




BLUE is the colour of life, of the sky, the air we breathe, and the water the surrounds the earth.



INDIGO is the colour of midnight and dreams.



VIOLET is the colour of peace and tranquility, the deep sea and the first light of dawn.


Life is a beautiful rainbow...
and
Remember that if you always want to see a rainbow......or Two!!


You must endure the rain!

Tendon Release/Ost. surgery more after pics

IT's been almost 6 mos. since Matthew's surgery. See if you can tell a difference. I sure can. You can probably tell in the pics he's a lot longer than before. He was actually 1.5 inches taller after the SURGERY itself!
Here are more "after" pics. It's been almost 6 mos. after surgery. He's doing great.
Notice how LONG this boy is. He is 34.5 inches tall and weighs 28 lbs. The pics make him look really skinny but he's not. That's a flea bite on his leg thanks to Mr. Tater. We will be bombing for fleas next time we get a paycheck!

What a difference! What a Gait. lol


Scar from the from where they put in the plate and screws. Not as bad as it looks. Cocoa butter helps to make it less noticeable. About 4 inches long on each hip.


This is what I mean by GIRLY hips. They make the plates big enough for them to grow in to them, that's why he has rounded hips. The scars on the back behind is knee are scars from the hamstring release.
To remind you of how he looked BEFORE: Here are some before pics





Things I learned before and after surgery.
1. Always prepare ahead a time for things that may come up like PNEUMONIA. We gave breathing treatments ahead of time and every day before and after the surgery.
2. I had our neuro's pager number incase something happened.
3. I asked to give him Cortisol before and after surgery. (safety precaution)
4. I made sure he was not sick at all before the surgery.
5. Prayed a lot.
6 Make sure they are given NOTHING at all to drink after 12pm mn before surgery. This could result in aspiration during or after surgery and cause pneumonia.

7. Makes sure you bring a reclining wheelchair to take home with you.
8. Make sure you made arrangements on how you will get child home because they wont be able to sit in a carseat. If you have a van, you can just let the child stay in the wheelchair and tie it down the best you can.
This could result in aspiration during or after surgery and cause pneumonia.
After
Things that you will see after surgery.
Very swollen buttocks, I mean very swollen
Lots of tubes and hoses all over him.
Slight fevers
Dreadful Muscle spasms, helped to weaken with Morphine and valium.
No appetite, for those with no feeding tube only for a day or two.
Constipation. I recommend Baby Lax liquid suppositories, qtips and vaseline.
Matthew usually sits on his potty but that was out of the question. So what I did was put him in his stander (turned around) with his buttocks facing out. I pulled his diaper down and gave him the baby lax. Looked back a few minutes later and I had a present. Ha.ha. Sometimes I had to use the q tips and vasaline with the baby lax. His buttocks were so swollen, even his rectum was swollen and it was hard for him to push out on his own.

Some kids have to get full casts from the waist down if their bones are too soft but some only have to wear knee immobilizers and an abductor pillow.
Matthew's surgical incisions had stitches on the inside and outside covered with a clear sterile bandage that will fall off on it's own. I didn't now have to clean or change. Once it fell off I could see the Paper stitches, you should let them fall off too own their own.. NO PULLING on them because you can make the scars worse.
watch after the sterile stiches fall off. Some of the inside nylon stitches start to come out through the incision. you can gently clip and pull them out. This was the only time I had to put antibiotic ointment on his scars because I didn't even know it was a stitch trying to come out. I didn't know what it was.

If your child gets the knee immobilizers, don't FREAK out whenever the day after surgery they come to get him for PHYSICAL THERAPY!! Matthew was in a stander the day after surgery for 30 minutes. He was so doped up though, it didn't bother him that much. They also do some leg exercises. WE went to shriner's and they were very easy with him.

The therapy continues at home, especially the being in the stander.
Matthew's whirlpool helped a lot. Had to wait two weeks though.

When you pick them up, you have to be careful because they don't want to bend right at first. You'll probably need help the first week or two changing diapers especially because you can't just grab their legs and pick them up to put the diaper under them and if you accidentally drop their legs, you will certainly know about it!


I held Matthew the day after surgery. I let his legs hang down in front of me. If there was a way for me to hold and comfort my baby, I knew I could find it. The nurse was showing me how to pick him up and put him in the chair. Once I got my hands on him and he was in my arms I didn't want to put him down. He immediatly stopped crying. We took a walk in the hallway. I was in heaven and so was he.

I can't think of much more for those of you considering this surgery. I will say that the muscle spasms are dreadful and can't be avoided. Even morphine and valium doensn't completely releive the pain. but as you can see, in the end it is worth it.
charlotte

Crazy Cat!

Someone or Some "thing" had been taking the mickey and minnie mouses off of Matthew's mobile that hangs over his baby bed. We finally figured out "what" it was!
This is TATER the CRAZY LOONEY CAT!... He is so curious it's crazy. I can wiggle my little toe and he'll walk on his hind legs with his paws up in the air and attack me. He'll walk about 5 steps on his hind legs. It's so funny.

Matthew's doing OK today. Still fighting those seizures. He had about 2 bad ones today. I am worried about his breathing because he tenses up so hard I can't tell if he's breathing. I called Dr. Veda today. It's getting hard to live with these things. Just when I think they are going away, they come back. When he has them they make him irratable and sleepy and he wants to hang on to me all day. Today was one of those days. He didn't want anyone or anything but ganny.
Keep him in your prayers.
Goodnight!