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Saturday, September 29, 2007 |
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Hey guys. We took Brady to the ER yesterday afternoon,because of the multiple seizures. For some reason the seizures seem to start every night,usually after 7pm. So anyway we told them it wouldnt be long before he started and we were right. In the hour that we timed them,he had 8 seizures. So they hooked him up to depcon,which is the same as the depakote that hes already on,but its IV. So it took about 10 minutes to get in his system. If that didnt work,they were going to admit him,and Im not sure they knew what to do next if that didnt work. Thank goodness the depokene seemed to work. He didnt have any other seizures after that,until we were nearly home that night. So far we have seen only one seizure,so were keeping our fingers crossed. By giving the depokene through IV,it has taken him up to a full dose of depakote now. See we had increased his depakote a couple days before,but it hadnt had time to get in his system fully as of yet. But we were afraid that he was going to really injure himself,falling from the seizures,before we could the meds in him all the way. So anyway by giving through the IV he is up to a full dose now,so when we gave his depakote last night,it was at max strength. So hopefully it will keep working for him. We like the depakote so far,we havent seen any side effects. And since Brady has come off the lamictal he is walking,making new sounds,eating and sleeping better.
Anyway Im rambling now. Brady is home and doing well. I will post more after tonight and let everyone know if the dreaded seizures start back tonight. Thanks for all your prayers,please continue them as we go into the nighttime hours again. |
posted by angelwings
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9:58 AM
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Friday, September 28, 2007 |
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| Ok,I am truly at my wits end here! Since 7pm tonight Brady has been having drop seizures at least every 5 minutes,sometimes multiple drops within that 5 minute period. I lost count hours ago,of the number of drops that he has had in total tonight. He has scraped his back,busted his nose twice,bust his lip,and got his arm caught under the rocking chair,all tonight,all from drops. My heart is breaking into just watching him. He still manages to give hugs & kisses and big smiles & giggles,amongst all the chaos happening right now. He has no idea what is happening to him,but is very aware that something isn't right. I absolutely cannot stand watching my precious little boy going through this,but have no idea what to do to help him. He cant continue going the way he is now,I'm afraid that he is going to really hurt himself. He wont be starting school tomorrow,there is just no way that he can. He is going to be to tired,as it is taking its toll on him by now. We still haven't heard anything from his test results yet,but I'm going to put a rush on things tomorrow. We have to get some answers as to what is going on!!! If we cant get in to have the EEG any sooner,I'm going to suggest that they admit him,if that will help get it sooner that is,I just dont know what else to do. Anyway I will keep everyone posted on whats going on,as soon as we learn anything new. PLEASE PRAY for our sweet little Angel!!!!!!!!! |
posted by angelwings
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1:53 AM
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Thursday, September 27, 2007 |
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Bradys drop seizure.
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| Click here for video of bradys drop seizure. |
posted by angelwings
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9:56 AM
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Wednesday, September 26, 2007 |
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| Brady is doing well today,no poop parties as of yet. He has been having drop seizures,mainly in the afternoon and at night. Tonight so far,he has had at least 10 or more every hour. He is falling all over the place,its just heartbreaking to watch. I am so jumpy everytime he moves,thinking I have to catch him before he hits the cement floor. Of course it hasnt detoured his walking,hes still all over the place. We have been really lucky so far that all the seizures have been while standing next to us,or sitting. We talked to the doc today,and he increased his depakote,so maybe that will help. Havent got the test results back,but will keep ya posted. |
posted by angelwings
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10:43 PM
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Tuesday, September 25, 2007 |
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Maggie is home!!! She is doing well,but exhausted from her ordeal,and so is her family,but shes home!! We are very happy for her and her family,but will continue to pray for her,as she has a lot of rehab to regain lost skills. Her mom said she isnt able to sit or stand just yet,most likely because shes just to tired and weak. Im sure she will be up and running again in no time.Way to go Mag!
As for Brady Boy,hes still having drop seizures. He seems to be mostly having them during night hours. He has had a couple tonight and even busted his nose one time,his eyes are already turning black. Luckily it isnt affecting his walking skills,but we have to get these drops under control very soon. Were still waiting to hear back from the lab work before we start making any decisions. All in all,Brady is doing well,still walking all over the place,and loving every minute of it. Will post more later. |
posted by angelwings
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11:07 PM
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Monday, September 24, 2007 |
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Just wanted to post an email that Maggies mom sent to the list today.
"Maggie got her central line removed today, along with the last of her morphine. So that means there are no more tubes or wires hooked up to our girl! We were getting hopeful that she could be d ischarged as soon as tomorrow but then she had some rough times with drug withdrawal this afternoon, so its more likely Wed than tomorrow. But we can feel how close we are to bringing Maggie home! At this point, the only evidence that Maggie has been in hospital is the bald spot on the back of her head. I was heartbroken to discover this today along with two big rat's nests of knotted hair that will have to be cut out. Maggie might need a short hair 'do for a bit and it will be hard for me to cut her lovely curls. But if that's the only lasting sign of how sick she was, then we can swallow our vanity about Mag's bright hair and chop away.
Maggie is generally cheerful and engaging these days. She's tired and low energy. She is almost completely weaned off the hospital medications. She can sit briefly without support. I was able to put her in her wheelchair today and spin her around her room and I gave her a sponge bath while she sat in her wheelchair, and she had the stamina for all that. She seems a long way from walking again, but I think once we get her home, she'll be getting around in no time! Mostly, Maggie is just bored by the hospital. She's as exhausted by it all as we are. All the hospital staff wear yellow gowns and masks and gloves when they come into her room, and she has taken to crying as soon as anyone walks in wearing yellow. The poor kid is just so tired of being poked and prodded..
Mag had an upper GI study this morning, where she swallowed some barium, and then other barium was inserted into her g-tube into her stomach, and multiple images were taken by x-ray to see if she swallows safely and if she has reflux. Her swallowing was good and there was no sign of reflux. This doesn't rule out reflux as a cause of her pneumonias, since a GI study is like an EEG, it only captures an event that happens while the machine is monitoring, but it seemed to indicate that Maggie's digestive system is fairly healthy. In some ways, reflux is one of the most straightforward explanations for her illnesses, and one of the most straightforward to fix, so it was almost discouraging that it all looked good. Once Maggie is stronger, she'll have an endoscopy where they actually run a camera into her esophagus and look all the way down to her stomach to see if there is evidence of damage from reflux. But right now, they don't think Maggie is up for another invasive procedure, and we agree. They want to wait until she's been home and regained her strength before sedating her again.
Part of why Maggie got such awesome care is our hospital is a big teaching hospital, so the doctors are current on all the latest research. The flipside is that there is never just one doctor. There is always the attending, the residents and often some interns. (I only have the show Grey's Anatomy to thank for teaching me the doctor hierarchy.) There is not just a nurse, there is usually a nursing student or two. That means that everytime she gets her vitals taken, the student does it first, then the supervisor does it again. This is tedious at the best of times and Maggie's patience for it is wearing thin. We actually kind of enjoyed the rounds in the ICU, and educating teams of medical students about Angelman. But at this point, we're just ready for home! After watching nursing students struggle painfully to figure out Maggie's feeding pump today, I started just running all the feeds myself and getting them finished and flushed before the students got back, just to spare Maggie any more people in her room than she had to.
A resident supervised an intern removing Maggie's central line today. The central line was an IV running into an artery in her thigh with multiple ports. (At one point, Maggie had 8 separate IV lines!) It had a flexible tube that was inserted several inches into her thigh, and was held in place by two sutures. The whole scene was straight out of Grey's Anatomy. The interns and resident were a bit disorganized and disagreeing on exactly how to do it. The intern's hand was shaking as he went to cut the sutures. If Maggie wasn't so upset by the whole scene, it would have been kind of funny.
A box arrived today from Sue and Anna in St Louis. There was a fleece blanket and a toy. I took the toy to Maggie, but Ella is not giving up the blanket. I wished for a camera while Ella was tackling this blanket. She lay on it, rolled herself in it, and dragged it all over the house. Sue, that blanket was the sweetest thing and a huge hit. Ella is snuggled up to it right now, sleeping in her crib. Thank you, all of you, for all these gestures of support and caring. It has meant so much to us and made this whole experience easier.
Hopefully my next post will be about Maggie's homecoming!"
Alec is also doing very well,no seizures all weekend or all day today!!! So way to go Alec and Maggie,were so proud of you both!!!
Now for Mr. Brady,he started having drop seizures last night. He must have had 10 or more,and has blue spots on his face from falling,heck of a time to learn to walk! He is doing ok today though,no seizures so far. He had his med levels and ammonia levels checked,but dont have the results back yet. He done pretty well being stuck,but man is he strong. But hes doing well,hes still walking all over the place,but I can tell that hes not feeling as good as he could be,hes been a little less stable with his walking. Anyway I will update everyone when his tests come back. |
posted by angelwings
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8:41 PM
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Thursday, September 20, 2007 |
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Not for the weak stomached!
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Ok I really need to vent!!! Brady has had two poop parties this week,one was in the new recliner,really bad,and the other was in his somatron ball pool,even worse!!! The recliner was so bad,I didn't know if we would even be able to get it clean. I was here by myself,not 5 feet away from Brady when I smelled it! He had quietly taken off his diaper and pooped in the chair,then proceeded to smear it in really good,all over the chair. I tried so hard not to flip out,but I think it must have given me super human strength,because I,by myself,dragged the chair out the door under the carport,dowsed it in pine sol and soaked it with the water hose. I at that point didn't even care if the chair ever dried out or was ever useable again,I was so aggravated. Anyway in between the chair cleaning,I cleaned all the poo out from under Brady's toe nails,fingernails,in between his toes,on his legs,chest,arms and hair. Not a good night at all!!!
Well just a couple days ago I was cooking supper,and trying to watch Brady. He was playing peacefully in the ball pool every time I peeked my head in to check on him. The next time I peeked in,he had taken his diaper off,and pooped again,but in the ball pool this time. He smeared it all over the ball pool,and all over 2000 balls. Do you have any idea what it is like to have to clean up 2000 balls,yeaaaaaa not so good!!! I left the ball pool for my hubby to help me with when he came in,but had to get Brady cleaned up,while I was cooking. Believe it or not,I managed to do both,and not even burn supper,whoooooo hooooo! I guess you have to be pretty inventive when you have a little Brady. So we tried to figure out how we were going to clean this many balls. We talked about putting them in a tote and getting the waterhose to them,but thought about the fact that the balls would all float away. So we decided to pour them in the back of my hubbys truck,pour them down with pinesol and get the waterhose,yet again. It worked like a charm. If someone would have told me 5 years ago that I would be doing something like that,I would have laughed in their face and said they were crazy. We must have looked like a bunch of crazy people outside washing 2000 balls,with the water hose,in back of a truck,lol.
Ok so anyway, the latest incident was this morning. It was pretty scary,the first part isn't really gross,but stay tuned for the second. Anyway Brady sleeps in our bed,where we always felt that we could keep an eye on him,and know that he isn't up roaming the house getting into things,plus if he moves awkwardly we always felt that we would wake up,just in case it might be a seizure. So anyway we were sleeping this morning,Craig went to work and Peyton to school. Craig shut our bedroom door so that Brady couldn't get out,or so we thought. Well Brady decided to get up and open the door,which hes never been able to open before,and he went to the kitchen. He did this all while I slept cluelessly. I heard him fussing,but he wasn't in the room with me,so I jumped up,shocked he was not in my bedroom,and ran out to check on him. He was fussing because he couldn't get the door open to get into the therapy room. So I opened the door,all the while noticing that he was drooling really bad. And thought,wow if this med is going to make him druel this bad all the time,were going to have to do something different. So anyway I let him in and went to the kitchen to get a drink,that's when I found the mess. Someone left the gate unlocked to the kitchen this morning and Brady had been in the cabinet's. He had all the cleaning supplies out,dishwasher tablets,Clorox,pine sol, go jo hand cleaner and even tin foil rolled out everywhere. The only thing I could tell that he had been into was the go jo hand cleaner,it was liquefied and he had poured it all over the floor,it was a full container. So I immediately ran back to the therapy room to smell of him to see if he had eaten any. There were little snail like tracks,where he had sat in the go jo and butt scooted all the way down the hallway. Anyway he had eaten some,no idea how much,he more or less drank it because it was liquefied. So I started calling poison control. Apparently its just an irritant and he should be fine,thank God. I'm just watching him today,no guarantee that he didn't take a bite of a dishwasher tablet,but I didn't see any signs that he did. We just got back from town,getting new cabinet locks covers for all the door handles,hopefully it will help keep him safe for a while,til he figures them out. Oh and back to the story,well I had to get dressed to go to town,to get the new safety supplies,so I shut him in the therapy room,where it is made safe for him. Anyway if you all remember we have a puppy,its really Brady's puppy. She is in the process of being house trained,and we are using puppy pads while we are in bed. But in the day we take her outside. So anyway I forgot to get the pad up this morning,and yep,Brady got into it,poo again, while I was putting my clothes on. He had just had a bath from the go jo incident!!! So he had to have another bath,and I had to clean up that mess before we could even get out the door. All of this happened at 7am this morning,what a way to start the day huh!!!!!!!!!!!!!
I told my mom,that he got it all backwards this morning,he should have played in poo and then used the go jo to clean it up,lol.So anyway,we are fine now,things seem to be calming down,thank God. I don't know how much more I can possibly take today!!
On a good note,Brady is still walking up a storm. He looks so darn cute. Always try to see the glass half full instead of empty,right?? I am thankful to have him in my life,and dont know what I would ever do without him,so I have to remember how lucky that we really are and try and overlook the bad things. But I have to say,I am learning a thing or two about patience. I have been learning to pull patience out of my toe nails,and anywhere else I can find it lately. If this is a test of patience,then I do hope that I make an A++++++++
No really,I cant complain,I wasnt so much upset or mad with him today,it just scared the life out of me,one,that he was in the cleaning supplies,two, that he had injested at the go jo,and not sure what else,and thre, that he was able to sneak out of bed,open the door and escape without even waking me. How do you make yourself sleep lighter??? Im just so tired lately,I guess last night when I fell asleep,not a mac truck could have waken me up,Im usually a very light sleeper.
Oh well Im done now,gotta clean up the rest of the go jo. Will post more later. |
posted by angelwings
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11:53 AM
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Wednesday, September 19, 2007 |
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Just wanted to let everyone know that Maggie and Kassy both are doing really well,aside from some complications with Kassy. They both seem to be headed for recovery,so thank you all for your many prayers.
Alec is still having some seizures,but seems to be getting better,so please continue to pray for them all.
Brady is doing really well,he has been walking up a storm today. He walked up to maw maws house,so we are very proud of him. His skills really seem to be taking off lately,hes jabbering up a storm,nodding his head for yes and no questions and just doing wonderfuly. He definately has a mind of his own since hes been walking. He doesnt always want to go in the direction that were going,so the chase is on,lol. We just pray that he doesnt have any major setbacks,like seizures or irregular bloodwork! We go for bloodwork on Monday,will let ya know what we find out. Will post more later. Oh and Im going to get a video of his walking tomorrow,to post here,so stay tuned,lol. |
posted by angelwings
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11:43 PM
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Tuesday, September 18, 2007 |
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| Brady is officially walking!!!!!!!!!!!!!! He just walked off from Craig tonight and kept going! He has been walking all over the room,making turns,correcting his balance,and catching himself when he falls. He just giggles the entire way,thinks its the coolest thing ever! Once I can quit following him around with my safety net,I will get some video. It just scares me to death to watch him walk,Im so afraid hes gonna fall! Anyway just had to share,Im so excited! |
posted by angelwings
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11:30 PM
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Monday, September 17, 2007 |
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Great news!! Maggie is off the ventilator!!!!She is breathing on her own,with very little assistance. Medically shes doing really well for what she has been going through.But her mom said Maggie has been a little sad,she really doesnt understand whats going on and shes pretty uncomfortable at times.She still has a long road to recovery,so please keep the prayers coming,they are working!
Now for Kassy,shes doing good too.I talked to her mom last week on the phone,and she was so tired. Kassy is responding well to treatments,but still has secondary infections from all the tubes and meds,so we have to continue to pray for her guys.Also please pray for her mom,and the rest of her family. Her mom said she hasnt been home but once since June I think. So I can only imagine how tired and stressed she must be by now. We have to pray for God to give her strength.
Now,Brady is doing well,he played in the water all day today,had a blast. His eating has improved so much,but he still has a ways to go. We had a big poop party this weekend,it was sooooo bad! The poor recliner had to be hosed down and so did Brady,lol. Of course he loved it and thought it was just to funny.Anyway not much else happening here. I will update later. |
posted by angelwings
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12:51 AM
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Wednesday, September 12, 2007 |
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Just wanted to let everyone know that Maggie has turned the corner,so to speak. She isnt running a temp anymore and the docs say that recovery is looking great. Hopefully she will be out of the hospital in about 2 weeks if all goes well. So keep up the prayers!
Brady is doing well,he has been wild today of course. He has a black eye at the moment,he fell off the bed hitting the nightstand this morning,poor little guy. Other than that,hes been in a good mood today,giving the dog lots of sugar,lol. Well not much else happening here. Will post more later. |
posted by angelwings
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1:36 AM
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Monday, September 10, 2007 |
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Brady had a good day today. He slept in this morning since he decided to pull and all nighter last night. The med change is still going smoothly. Will will be decreasing the lamical and increasing the depakote to the finaly dose tomorrow,so hopefully it will go well.
Brady learned how to throw the ball today. He loves playing catch now,its so cute. I have decided that hes not going to be a chip n dale stripper anymore,hes going to be a pro baseball player, a better career choice I think,lol.
Anyway I will post more later. |
posted by angelwings
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10:22 PM
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Sunday, September 09, 2007 |
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Just wanted to let everyone know that Maggie seems to be getting better a little all along. She is still on the ventilator,but is stable.She still needs our prayers as she has a long road to recovery ahead of her. So please continue to pray for her and her family.
Brady had an ok day today,but has been a bit cranky. He took a long nap today,so now sure if he will sleep tonight. He is still running a low grade temp at times,so hopefully will feeling better soon.
He of course is still into everything. He managed to sneak into the bathroom today and turn the hot water on while he was in the tub. I found him crying and sitting in the back of the tub with his legs hanging over the side. Thank goodness it didnt hurt him as he was only there for a short time. I ordered a cover for the spout to keep the water from being to hot while coming out,so hopefully that will prevent any future accidents.If anyone needs info on the spout,just let me know.
So far so good on the new meds,no major seizures as of yet. We continue to pray that these meds will help him regain control over the seizures. Will keep ya posted all along. |
posted by angelwings
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10:38 PM
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Saturday, September 08, 2007 |
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Someone shared this on the listserve and I had to post it here. It is though I wrote this story myself.Enjoy!
"I thought it was thunder rumbling in those late hours of the night… The
calm, peaceful thunder that keeps you slightly awake, but yet relaxed enough to
still rest, and sleep.
But when the wee hours of the morning came, that thunder became not so
peaceful. Clanging and banging, but not in the rhythmic smooth way that thunder
is. That's when I knew it wasn't thunder. It must be my son. He's up
again. I tried to ignore the sounds, thinking they would stop. I was so tired….
Weeks in the summer when school is out can seem like months when you
cannot find attendant care. But, the mommy alarm in me wouldn't let me ignore
it for too long… What if he's wet… dirty…. hurt. Then, as I lay there
longer still, I became angry. Why me. Why again. Why not wait and see if my
husband gets up to check….
That made me angrier. Knowing that really, even though my husband does his
share, I should get up and do all that needs to be done, because my husband
has an important job to go to early in the morning. He has responsibilities,
meetings. A paycheck to earn. He must be fresh to do a good job, so he can
keep his job. Me, I don't have a job, at least not one I get paid to do or
can get fired from. I stay home and care for my son and my family. I don't
have to clock in. I don't even have to get dressed.
And apparently, I don't have to sleep either.
So it was with that anger, (and perhaps a bit of self-pity), that I trudged
upstairs to my son's bedroom to see why he was awake. I didn't need to turn
on lights, I could follow the banging and clanging of toys being thrown, a
bed being jumped on. And by the aroma that met me when I opened the door, I
didn't need lights to tell me the reason why my son was up clanging and banging.
So in the dark I changed my son so I wouldn't disturb the rest of the
family. I perhaps grumbled too loud as I tried to maneuver a diaper on and off in
the dark. I perhaps grabbed a stray arm that was in the way of me cleaning
him, a bit firmer than necessary. And when diapers were changed, clothes
changed, and sheets were changed, and he went back to banging and clanging, I
know that perhaps I said to him way too angrily, “Go to bed!.”
I'm not sure when he finally did go back to bed, but the next morning at
9:30am when I was to pick up my other son from swim practice, he was still sound
asleep. He looked so peaceful, so sweet. Nothing like what I heard just a
few hours earlier. The guilt was quite a mouthful as I recalled what I was
thinking about him in having to be up most of the night because of him. I
hated to wake him up, but knew I couldn't leave him to sleep while I went. So I
woke him. Once downstairs he was confused as to why he was turning to go
outside to the car, instead of in my bedroom to the tub, his normal routine
when he wakes up.
As I drove to the pool, I was now mad at myself, and not him. Mad that I
was mad about having to get up at night. Mad about being tired all morning;
and even madder that I had no one I could call to stay with him when I have to
leave - or just to give me a break now and then. I was mad that my back
still hurt after two weeks of pain. I guess a decade of bending and changing
and chasing and dressing had started to take its toll. Along with nearing
forty, adding ten extra pounds; not to mention the lack of exercise because of
taking no time for myself, even when I have it to take. Too many other more
important things to do…
Then I happened to look in the mirror … Not the rear view mirror, but the
special mirror I have attached to my rear view mirror. The one that allows me
to watch my son like a hawk while I'm driving. So I can see and hopefully
dodge a drink he has launched my way. So I can see when he's escaped from his
seat belt and can pull over before he gets to the front seat and grabs the
wheel.
What I saw in that mirror humbled me.
I saw a little boy with blonde hair, sleepy eyes, and disheveled hair. I
saw my child in pajama bottoms that were inside out and backwards because I
had hastily dressed him in the dark in the middle of the night. I saw a man,
with a man's body, in a sleeveless t-shirt. A man I admired and who was
worthy and deserving of my respect. I saw a child who tries so hard to navigate a
world he doesn't understand, and that doesn't understand him.
I saw my child who could not talk and who has autism, sitting there as pure
and vulnerable and as sweet and as innocent as a human being could possibly
be.
And I saw the real reason for my anger.
It wasn't the little boy in the back of the van sweetly grinning and swaying
his head to the beat as a song he likes came on. It wasn't the little boy
who couldn't sleep last night because he was wet.
It was society.
It was how society had slowly eroded my sense of self worth into thinking
that it was a burden to care for or clean up after someone else. That the job
of doing that, wasn't worthy of respect or an honest wage. It was those
subtle messages I am exposed to each and every day, that say that to be worthy,
you have to be beautiful, perfect, smart, rich. I am none of those things in
the world's eyes. It was those messages I am exposed to everyday that say
that I must be self-sufficient and have a career. A title. A degree. The
more initials after my name, the more important I become and the more pay I
earn. I have neither, and get paid nothing. So what does all that make me,
or the job I do at home?
It was those messages that if you do have some sort of specialized training
or position, that you have to do something the world deems worthy with it.
I did go through a policymaking class that trains you how to be a
professional advocate. I am a part of an important state agency council. But am
burdened that because I have no help in caring for my son, that the training and
position is going to waste because I am not able to go out in the world and put
that training to use. All I can do is stay home and feed, change, and clean
up after. No traveling to important places to work on important policies to
help pass important laws. No, the most important thing I do each day is to
remember to lock all the doors in my house so my child doesn't run away or
flood the bathrooms.
And it was that knowledge that had built up, that made me feel the angry way
I did in the middle of the night as I changed yet another diaper, yet
another set of pajamas, and yet another set of sheets; in caring for my son. It
was that knowledge that had built up that made me wonder if that is all I would
ever get to do. And if so, was it worth it?
I was sad at how society places value and worth on so many other things,
except those things or people that matter most.
I was sad at how the jobs where you care for others, are the most underpaid,
understaffed, and ill-supervised.
I was sad at how society teaches that no, it's not worth it.
I was sad that at the realization that I had become a part of that society.
I was so consumed with finding someone to help me care for my son so I could
go out in the real world and get a “real job”, a “real paycheck” and do “
really worthy things”, that I saw caring for my own son as a job that didn't
matter. And by seeing what I did as just a job that didn't matter - the person
I was working for, my son, became an object. One that didn't matter. One
that had no feelings. By falling into that trap, I understood why there was
abuse in state schools, nursing homes, and institutions. Some there probably
felt as I felt. That their job didn't matter. They were working for clients
or consumers, and not people. So what if they talked to them rudely. It was
just a client, not a person. So what if they moved an arm out of the way bit
rough. It just belonged to a consumer, not a person. So what if they made
them lay there wet or soiled a little longer…. After all, it was the middle
of the night, who would know? Who would care?
I do.
And my Legislator should. My state should, and my federal government
should.
And above all, society must.
I am not angry anymore, I am humbled.
At how God used my son, the least of these in the worlds eyes, to teach me a
most valuable lesson that all the beautiful, smart, rich, degreed,
important, initialed people in this world, could not ever have taught me.
He taught me that all I have to do to define worth, is to look in the
special rear-view mirror of my car - and see what is worthy in God's eyes. To see
what's beautiful, rich, and intelligent in God's eyes. My son's worth is
that he is simply a child of God. Not enabled, not disabled. Just a child.
An individual. My worth is further defined by knowing that in loving and
respecting that individual that God thought important enough to create, I am
doing what is most important in God's eyes as well…
Caring for him…
~
And that is something I will never let society take away from me again.
Ever.
~
Yes my son, if caring for you is all I ever get to do, it is worth it; and
I'm honored to do it.
Please forgive me for the times I ever felt otherwise. |
posted by angelwings
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5:09 PM
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What is Angelman Syndrome?
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What is it?
Angelman syndrome (AS) is a neurological disorder first described in 1965 by an English physician named Dr. Harry Angelman. Symptoms are usually evident after the age of three, and are characterized by severe congenital mental retardation, unusual facial appearance, and muscular abnormalities.
Who gets it?
While an exact count of cases of Angelman Syndrome in the United States is not available, the Angelman Syndrome Foundation has knowledge of around 1000 cases in the U.S. and Canada. Angelman Syndrome is found among all racial groups.
What are the symptoms?
Symptoms of Angelman syndrome include a stiff, unstable jerky gait, absent or diminished speech skills, hand flapping, excessive laughter/unusually happy demeanor, developmental delay, and small head size (microcephaly). Some patients may also develop epilepsy and have problems with balance.
Because it is difficult to detect the developmental problems associated with Angelman syndrome during infancy, children are usually diagnosed with the disorder between the ages of three and seven. Parents and doctors may notice a developmental delay between the ages of 6 and 12 months, but because the child does reach most developmental milestones during this stage, a diagnosis cannot be made. Brain scans are also normal at this time. By the age of two, however, the child with Angelman Syndrome will begin to show signs of microcephaly. By age three, clinical features of Angelman Syndrome are present, including speech impairment, movement or balance disorder, frequent laughter and smiling, easily excitable personality, hand flapping movements, and short attention span. Seizures may begin after the age of three. An abnormal electroencephalograph (EEG), a painless procedure in which wires are pasted to the scalp to record the brain's electrical activity, will also be found at this time. Some children with Angelman Syndrome will also have symptoms related to the mouth and jaw, including protruding tongue or tongue thrusting, sucking/swallowing disorders, feeding problems during infancy; a jaw that projects forward (prognathia), a wide mouth with wide-spaced teeth, frequent drooling, and excessive chewing/mouthing behaviors. Children may also have an imbalance of eye muscles so that one eye cannot focus with the other, called strabismus; under-pigmented skin, hair, and eye color; hyperactive lower limb deep tendon reflexes; uplifted, flexed arm position especially during movement; increased sensitivity to heat; sleep disturbances; and an attraction to/fascination with water.
Diagnosis/testing.
The diagnosis of Angelman syndrome rests upon a combination of clinical features and molecular genetic testing and/or cytogenetic analysis. Consensus clinical diagnostic criteria for AS have been developed. Analysis of parent-specific DNA methylation imprints in the 15q11.2-q13 chromosome region detects approximately 78% of individuals with AS, including those with a deletion, uniparental disomy, or an imprinting defect; fewer than 1% of individuals have a cytogenetically visible chromosome rearrangement (i.e., translocation or inversion). UBE3A sequence analysis detects mutations in an additional ~11% of individuals. Accordingly, molecular genetic testing (methylation analysis and UBE3A sequence analysis) identifies alterations in about 90% of individuals. The remaining 10% of individuals with classic phenotypic features of AS have a presently unidentified genetic mechanism and thus are not amenable to diagnostic testing.
What is the treatment?
Treatment of Angelman Syndrome is focused on providing physical therapy and adaptive devices to assist with gait and balance problems. Speech therapy is recommended for language problems. Patients with epilepsy are prescribed anticonvulsant medications.
Self-care tips
There is no known way to prevent Angelman Syndrome; however, the Foundation for Angelman Syndrome Therapeutics is very close to developing real treatments for this disorder. To learn more, go to www.CureAngelman.org Parents of children with these types of disorders usually find strength, valuable information, and comfort from support groups, often on Facebook.
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posted by angelwings
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7:00 AM
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| Brady is doing ok today,but has had a bit of a fever,not sure why. He got up fussy and had a runny nose this morning,so I hope its just a little cold. So far,no seizures,were keeping our fingers crossed. Hope all is well with everyone. Will try to get some pictures to post tomorrow. |
posted by angelwings
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12:04 AM
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Friday, September 07, 2007 |
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We have two more Angels to add to our prayer list. First is Alec,he is 5yrs old. He just had surgery and had a g tube place,to aid in his non eating habits. He done well with surgery and is back home,but since has been having seizures on a daily basis. He is going on another med to hopefully help stop the seizures.
The second Angel that we have is Kassy. She is in the hospital,has been for several months. Kassy has a tumor,in her abdomen,I believe.Anyway shes getting treatments along with many other things at the moment. Her mom just wrote in and said that she has some infection,in which they are treating,but that Kassy is being a real trooper. So please say a very special prayer for all of our Angels,including little Maggie that is still in the hospital as well. As far as I know Maggies condition hasnt changed much,which her mom says is always a good thing in the ICU. All of our Angels and their families need our prayers,so please take a moment and pray. Thanks |
posted by angelwings
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5:45 PM
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Thursday, September 06, 2007 |
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Just wanted to ask everyone to continue to pray for our little Maggie. She is still in the hospital on the ventilator,but she is holding her own. She has ups and downs,but nothing has changed for the worse. She does still have severe pneumonia at this time. The doctors are reassuring that she will be able to make a full recovery. For those of you who dont know Maggie,or want to get to know her a little better,you can visit, http://sheldonhickey.com/
So again,please pray for Maggie and her family during this very stressful time.
Now,we had a big night last night. Craig had to work late,so it was just me and the boys here by ourselves. Anyway sometime after dark,my oldest son came running in screaming at me,just panicing. He had been watching cartoons on the couch in the living room,while Brady and I hung out back here in the therapy room. Apparently someone started wiggling the doorknob and pushing on the door trying to get in. So I called my hubby at work,he was on the road,so not where he could get home. So my brother n law and step dad came over to check things out for us. They didnt find anyone,they were already gone by then. So it wasnt a very restful night for us,plus Bradys magic pill didnt kick in til about 5am this morning ):
Anyway were all fine now,hopefully nothing else will happen. Brady has started eating again,I dont want to jinx it by saying anything,but I have to brag. He started out eating baby food this weekend and has moved up to baby food,pediasure,and real food. He had two big helpings of mashed potatos and peas last night. He ate several peices of divinity candy,and has been eating all day today. I dont know what has gotten into him,but whatever it is,Im thankful. He is coming off one med and going onto another,so not sure if one of those is having an effect or what,but hes one hungry little boy these days,lol. So far his seizure meds seem to be working,he has only had one small seizure in his sleep a couple nights ago. It only lasted for a few seconds and he only had one. I am expecting to see some small ones since we are in the middle a med change.
Well thats about it for now,will post more later. |
posted by angelwings
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10:33 PM
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Sunday, September 02, 2007 |
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Brady is still doing well,no seizures to date. He will make another med adjustment on Tuesday,then by the next week,he will be off of the lamictal all together,and on the depakote,full force. He will then be on depakote,lamictal and keppra. If all goes well will start weaning off of the topamax soon,leaving Brady only on two seizure meds,were keeping our fingers crossed.
Anyway call us stupid,but we bought Brady a bunch of baby food yesterday,just curious as to wether or not he would eat it,and he did. Hes had 6 to 8 containers of baby food since yesterday,along with his pediasure. He has eaten sweet potato,banana yogurt,apples and bannanas,blue berries and apples,he loves it!! Im at a loss,I have no idea whats going on with him. Why does he refuse almost all of table foods that he is offered,but yet will eat the soft baby food. He used to eat any foods no matter what. Oh well,Im not complaining,just glad to see him eating again. He might actually gain some weight between all the baby food and pediasure!
Brady is still enjoying his pup,he loves to feed her doggie bones,he doesnt even taste them first,lol. He also loves to give her open mouth sugar,and boy does she love to give it back. Its so funny to watch the two of them,I cant believe how well they have taken to each other,its so darn cute..
Oh one other thing,I wanted to mention our sweet little Angel friend Maggie,shes in the hospital right now,shes a sick little girl. So she needs us to send all the prayers we can,her way. We will be praying for you sweet little Magster. |
posted by angelwings
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10:17 PM
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