Update on Matthew and Thank You to his PenPals from Windermere 4th Graders!

Matthew is doing better. A lot better today... I guess.  He just got sick right after we put him in the bed but I read that was normal after a surgery like this one. He gave me a scare when the spinal incision began draining last night but it was not spinal fluid.  It has almost stopped now.  He is still sore but every day I can see him getting better.  He has an appointment Friday to get the pump turned up because his legs are very tight. He's not getting enough pumped in right now.  The original appointment was not until July but I knew that was NOT going to work. The nurse was shocked at the low dose he was on and was glad to get us on in.  My mom, dad, daughter, son and granddaughter have been down from TN and NC since we got out of the hospital.  They all have been a tremendous help.  I'll hate to see them go home this weekend. Not sure how I'm going to handle that.  But Matthew is getting better.  Just had a reader comment that her child's bruising & incisions were not nearly as bad as Matthew's.  I will certainly be finding out why his were so bad.  Matthew even has bruises on the top of each of his nuckles on his left hand when the IV was in his left hand. The bruising on his scrotum has faded.  He has a bruise on his inner ankle. I think that's from laying on it too long or being pushed down on during surgery. I would pay a lot of money just to have been a fly on the wall during surgery with a video camera.  (Yes, they make them that small. lol )

Check this out.  Matthew has a whole class of really smart 4th grade kids from Windermere Elementary in Ellington Connecticut that adopted him as a penpal.  I think they are around 9 years old.  Cannot believe how great they are at grammar & spelling. Some of them write better than I do!

He received a banner and some beautiful cards with nicely written letters to Matthew. Some of the cutest had sentences like, "Are you really sick or just a little sick?", "I will put all my thoughts into you. I will think of you every day", "I  hope you get better as soon as possible and get out of the hospital. I don't want a new friend to be in the hospital", "I really, really, really, hope you get well soon", "Don't get upset if the hospital food tastes bad", I had pneumonia in September and the food tasted awful, disgusting, and gross!","They should treat you like a prince or king in ther! Even the ruler of the whole entire word!" "I will definitely make sure my family and I will pray for you. I am positive that everything is fine.", "I'm trying my hardest to pray for you and pray for you," I hope you like the hospital food because sometimes it's not that great."

These are just a few that I picked out but each one was equally as beautifully written and just as special to us as the other.  The art work was phenominal! Wow. I am going to upload some after I do some editing

It really is a blessing for us to get things like this in the mail for Matthew.  There are a lot of people that don't see him as we do. As a whole person.  Sometimes people will walk up and talk to me and not even say anything to Matthew.  Not all of the time but a lot.  Just because he can't speak back or see, they think he won't know the difference.  I have news for all of those that pass by without saying anything. HE DOES know the difference. You see how he is smiling in this picture? Because his great grandma ruth is talking to him after his bath. He knows his ggmaw Ruth! But he can't know you if you don't talk to him and let him hear your voice.

So what I mean to say is there are not a lot of kids or adults that would do this for others. It takes a lot of effort.  For years, I have always been the one to initiate card making for sick friends, family, or deployed military. This is the first time someone has done something like this for Matthew.  So you see why it means a lot to us and Matthew. We are going to make one big book out of all the cards.

We're Home!

We got home around 12 noon today.  It's 10:30 pm and Matthew is stretched out, doing amazingly well, all things considered.  He was sent home with a prescription for Loritab for pain and Omnicef as an antibiotic. He is still taking breathing treatments to get rid of the residual coughing and pneumonia. It will take another week to get him completely over it.  Poor baby can't get in the whirlpool until his incisions are completely healed. Especially the one on his back used to thread the line to his spine.

I am still amazed at how good he's doing.  He's still in some pain but the loritab helps with that every 6 hours or so.  Thanks to a comment left by one of our followers, I believe the bruising on his scrotum was caused from the catheter that was used 21 hours after surgery. She mentioned that catheters may cause that and I believe that's exactly what happened when I think about it.  They drained 200 cc's of urine he was holding on too and It looks like the nurse went to far with the catheter.  I didn't know that could happened. He's only been cathed one other time in his life.  After researching, I believe that the nurse was not trained well in that area so I will be calling the hospital's fifth floor nurse manager to let her know so this doesn't happen to another child.  Only time this happens according to web MD is when the catheter pushes on the wall of the the scrotum and the catheter should not go that far. My poor Matthew...


I have pics of him stretched out but way too tired to upload tonight.  I have all of my family except my sisters down for Easter and will have plenty to upload tomorrow. I'll have all the grandbabies in one place and am going to take millions of pictures!!

Ok, there should not be a bruise there!

While cleaning Matthew with the top light on I noticed a bruise on his testicular sac right under the posterior portion of his penis. How in the world can there be a bruise there? Doesn't make sense. Probably something caused by carelessness, moving, rolling.. I just don"t get it but I will be letting them know about it.  He is lucky to come out any surgery much less a major one.  Why can't people be more careful and concerned?  This is not the first time things have happened caused by carelessness of someone in the operating room that was totally unnecessary.  I wonder if they video tape the surgeries. I want to know what happened.  I'm going to research and see if there are chances of testicular bruising during the surgery.. I don't recall seeing that before. I am angry

Can't go home until Saturday.. Picture of Matthew bruised back

Matthew pneumonia is cleared up but of course it will take a good week to get him completely over it. He is still in pain, day 3 after surgery but nearly as bad as day 1. Each day gets a little better. He has some extreme bruising. I was aware that they had to make a very long incision for the pump but not made aware of how they run the line from the pump to the spine. Take a look at these pictures.. Looks like he has a bruise belt.

He is still in pain but it is definitely less painful everyday.

The doctor wants to keep us one more night to watch for infection because he had been running fever.   More later.

After surgery video of incision and Matthew laughing!

After pictures and Messages from Matthew

Before Surgery

After  Surgery

This is a big difference and who knows how better they'll get after some intense therapy and a whirlpool bath, Clonis not completely gone but about 85% gone

Well, the doctors made it official today that Matthew has pneumonia. I knew that 2 days ago. But you know how that goes. So today we started antibiotics for pneumonia. Can't go home till tomorrow. I decided to help him color in his big coloring book Bub brought him and he had some message for us and the doctors! There are some after pics of him with his legs down without much messaging. He couldn't do this before. And that is a volunteer that came in and read to him.

Matthew now has a Baclofen Pump

What is it?  The Medtronic SynchroMed^® pump is a programmable, battery-powered medical device that stores and delivers a prescription medication called Lioresal^® Intrathecal (baclofen injection). It is surgically placed in the abdomen. A thin, flexible silicone tube called as catheter is inserted near the spine and connected to the pump.
Why did he need it? Matthew's brain tells him "HEY hold your legs muscles really tight and never relax!"  That's putting it in a nutshell.  When that happens, your muscles will eventually pull your femurs right out of the sockets and that's what happened to Matthew.. twice.
He had a bilateral hip surgery a few years back because his hips were coming out of the socket.  They had to break the femur, re-position it into the hip sockets and put back together with pins and plates.  They also lengthened tendons of his abductors and behind his knees.  This fixed the results of the extremely spastic muscles but not the cause.  A year later I noticed the same thing happening again.  I did some research and found the site about the Baclofen pump.  At the office visit I ASKED WOULD A BACLOFEN PUMP HELP KEEP HIS FEMURS IN THE SOCKETS. I was told face to face that NO because Matthew was Not a candidate because he had poor head control and it would make that worse.  If I could go back in time I would have Slapped that doctor upside his big head and said you are an idiot. Never just make up crap you don't know anything about.  I find out later that baclofen pump has NOTHING to do with head control. So meanwhile, Im waiting on what I was told was inevitable, the femurs to come all the way out, and that he would just have to have another surgery to fix.  We put off as long we could.
As long as he was in no pain, we would not do surgery.
Will it work for my child?
Well, 2 years later he's in pain.. even on 70 mg of oral baclofen, his hips were both out of socket.  Now he kept them pulled up and it was hard moving and changing him.  Any movements were painful because the balls joints (trochlears) were rubbing on the hip sockets.

So now we take him to another orthopedic surgeon. First question out of his mouth is  "Why doesn't he have a baclofen pump?"  I explain to him what I just explained here for you all, now that is where we are now. He wanted Matthew to get the pump first to see if it would help.  The trial to see if he was a candidate was scheduled and it was like a miracle.  HE WAS a candidate for the pump.  It even relaxed from his arms down.. He actually has BETTER head control because the baclofen is not hitting his brain first.. it's going right into the problem areas.

If you want to read about the pump please click the link above this story.  If you have any questions, email me personally ckappler@cablelynx.com

Matthew had the baclofen pump trial March 10th. It involved a CT scan to check his brain fluid levels first. CNS fluid was drained off during the procedure so baclofen could be inserted. For Matthew is was relatively painless.  Within 5 minutes, we knew he was a candidate.  We came back now on the 30th and he is sporting his new hardware now.  There will be several adjustments on the amount and times the baclofen is released to get it just right.  Right now he's on 100mg every 8 hours and he is relaxed and

I can tell a big difference in his spasticity.

Matthew's only problem has been congestion.  He doesn't want to cough so he has kept a lot of gunk in his throat.  He doesn't want to cough because when he does it hurts.  A guy I found on you tube that had the same surgery told me to put my hand on the surgical area and hold down while he coughing because that helps a LOT.  I am so thankful for people that can "speak for Matthew" that have been in his shoes. I am thankful for the advice.  I will not stand for him to suffer when there are so many out there that can offer advice on what to expect or what to do for kids like him.  I'll do what I have too and listen to whoever has advice that will keep him from being in any unnecessary pain. That's one of the reasons for this web blog. I don't want others to have to have their child suffer because they "didn't know".  Of course, these are our experience and no kid is alike, Im not a doctor either so you can take the advice or leave it. It's your kid! lol

We are suppose to go home today. I'll post any other important things we learn about the pump as we go.. Remember to email me if you have questions. There are a lot of other warnings and problems that can  occur with the surgery and the pump so make sure you read up and do your research.

Remember Leah

While on my journey with Matthew, I meet a lot of special people.  I think most of them are sent by God to keep me strong and to help me understand that my problems and my situation is nothing compared to what others are going through.  My cousin introduced the FB world to Leah Helms.  She had a son born on October 26th, not long before my grandsons were born.  His name was Pierce, aka Baby Pierce.  He was born with congenital aortic stenosis.  I followed her journey with Pierce everyday. Her journey was what I would call fast and furious but to her it may have seem different....Baby Pierce fought from day one and he fought hard.  He had a lot of prayers from people everywhere that were praying for him.  Although I never met him, just knowing "about" him and seeing the courage he & his family had shown through their journey helped me put my journey back into perspective.  We were all so sad when Baby Pierce was called home on January 15th.  It is so heartbreaking to lose a child, but Baby Pierce had also lost a brother a few years earlier, so this was mommy's second little boy that God called back home.  For such a strong and courageous woman, I felt I needed to do something to show that I care even though I couldn't do anything financially for her, the least I could do it try to put a few of those memories in a scrapbook.  I know she probably gets tired of hearing "Oh you are so strong" or "You are so courageous" and has her weak moments just like everyone else but to keep holding on to God and to keep encouraging others even after requires more than human strength.  It is a superhuman strength that only God can give someone.  I don't feel I need superhuman strength right now but I did at first when Matthew was born.  I'm just glad I know where to get my super human strength  when I need it and when God calls Matthew home I will be able to say to myself "Remember Leah."

Matthew's surgery has been scheduled for March 30th.  He just had a seizure a few minutes ago and I'm hoping we don't have to change the date again because that will mean he will have to re-do the labwork.  Please say some prayers for him to not have any more seizures...

Here are some pages so far I have for Baby Pierce's scrapbook.  If you would like to add a poem or send words of encouragement, just email me. ckappler@cablelynx.com

Having some fun with my Grandbabies pictures tonight.

The Perfect Little Sneeze!

Just thought I'd add this video for your entertainment pleasure.  This is called the "Perfect Sneeze" by Matthew Sanderson.  His surgery has been postponed until March 30th.  That's if he has been seizure free and back to his old self for at least a week.  He had 2 more seizures this morning which makes a total of 10 since he left the hospital on Friday...

Postponing surgery. He had 2 more seizures this morning.

I will be calling to cancel Matthew's surgery this morning.  2 more siezures, make a total of 8.  He has not had this many seizures in several years.  I can't believe I'm still up since 3am.. watched a scary movie until 12 midnight! What's wrong with me???

I'll let ya'll know when the new date is.  I wonder how I will be treated when I call to cancel.  You never know.

Charlotte

Surgery may have to be postponed.

Hi Ya'll,
Matthew has had 5 seizures since we returned home from the baclofen trial on Friday.  This did not surprise me at all.  The stress he was under with all the poking and prodding, the change in seizure med times, dosages, etc just got the best of him.  I feel like it was partly my fault but the way it happened was so weird and quick...

I'll be calling the surgeons office to tell them we need to re-schedule the surgery. If Matthew has any more seizures.  The last one was around 2AM.  He was out of it most of the day.

Before we left for the test on Wednesday, I had given Matthew some milk of mag just to clean him out because I knew he would be doing a lot of laying around during the hospital stay.  He had a good bowel movement on Thursday.  When we got home on friday, his stool was like rocks.  The only other time they have been like that is when he was put on the robinul . Robinul is for drooling and if you take too much it causes severe constipation.  We ended up reducing the dosage and have increased water. That was 5 years ago.  Matthew was on an IV most of the time and he is Never constipated when he's on IV.  He gets plenty of water and also had given him grape juice.  What I'm getting at it that after all the medicine mix ups, I believe he was given too much Robinul.  After I thought about it, I remembered that I had to keep putting chap stick on Matthew in the hospital because his lips were so dry. 

I am going to re-write my "So Let Me Tell Ya About My Day" post in a more professional style and take it with me for the Nurse manager and Dr. Veda.  I am really nervous about taking him back without having these issues resolved.

Matthew is doing okay now.  He's listening to his MP3 Player.

As for me, I have got to get registered for college algebra so I can start Respiratory Therapy school , or nursing school this fall.  I have to go to CMMC for 8 hours to follow a therapist and that will complete the requirements to get into RT school . If I see I don't like RT, I'll do nursing.  That will mean I'll have to take the ACT over again for the 2nd time.  I raised my math subscore from 12 to 18 but lowered my overall score from 18 to 17. You have to have an overall score of 18 and a 18 subscore in Math!!  I am going to have to take some ACT preparation classes this.  That is a hard test. Definitely not the same test I took in 1994.

Meanwhile I have started eating like a pig again but trying to stop. It's definitely stress related. My hair has started to fall out again, way more than the usual.  Every time Matthew goes in the hospital, my hair does that.

I've had a few other personal problems that I can't even talk about  because anything and everything I say could be taken the wrong way.  Sometimes I wish I had a nasty foul mouth and spoke my mind and didn't care what others thought or said about me but I do care and I don't have a foul mouth so that's out of the question.. That doesn't mean I didn't "think" it though.  It just hurts.
 I wish there was SOME way that his surgery could be video taped.  I saw one guy on
Youtube that had his video taped.  Like this one. (Warning , it's graphic)

One major concern about the surgery is I worry that they will try to lay Matthew's legs straight out flat in front of him.  My husband, John, says well he'll have the pump so he can do that.. well NO dear. Matthew will be "getting" the pump.  His legs cannot be pushed down flat while he's getting the pump or after.  Yes, they will be looser but they are far from him being able to lay them flat and straight.  Remember that he has some atrophy from keeping his legs pulled up for over a year.  Atrophy means the tendons, ligaments, and muscles have drawn up, tightened up.  If you just push them flat down, you will end up injuring him because it will tear or sprain whatever muscle has atrophy.  So Im wondering how they will do it without pulling his legs down.  Does anyone out there know how that works? Doesn't matter is he is knocked out, those legs are not going down. The ligaments are not able to do that anymore.Understand?  So I have decided to get a big black permanent marker and write "DO NOT PUSH MY LEGS DOWN FLAT!!!!".


I will be talking to the surgeon, surgical nurse, .. all the folks that will be in there with him but I'm still using the marker.

As he gets older, the surgeries get scarier. Reason is because he is highly prone to getting pneumonia if I don't keep him moving, doing back pats... He is 62 lbs now and that is not as easy as it used to be. He doesn't do much more than just lay there now days.  He used to move his legs but he can't do that right now. Hopefully he'll be able to move them and I can get him back to the pool.  I just don't see how much longer he can lay around from bed to chair to swing and that's it.  That's why we have to get these legs fixed and THAT'S WHY MS MEDICAID NEEDS TO FUND THE MEDICAID WAIVER PROGRAM WITH ENOUGH FUNDS TO SEND SOME HELP OR I HAVE SERIOUSLY GOT TO MOVE TO ANOTHER STATE THAT IS SENDING OUT HELP.  I AM NOT GOING TO LIVE IN MS AND JUST KEEP WAITING FOR HELP, MEANWHILE HE'S LAYING AROUND DYING BECAUSE I DON'T HAVE ANY HELP AND THE PEOPLE THAT DO HELP DON'T UNDERSTAND THAT LAYING AROUND WILL EVENTUALLY LEAD TO DEATH.  All I want if for someone other than myself to give massages, put him in swing, read too, play with , move his legs, stretch him... I'll still do it, but I can't do enough.  He needs a lot more movement than I can physically give him..  Too bad he doesn't have any relatives down here that will come by a few minutes during the week to do that.  When Matthew gets 70lbs, I will be in another state one way or the other if we don't have some help.  If anyone reading this has a home attendant or nurse, please let me know what state you are in and how long it took to get help.  My aunt has called and said she will come over and help me move and change Matthew when we get home so I don't have to hurt him .. she is 64 and has a 100 lb handicapped child in a wheelchair and takes care of a mentally handicapped sister.  She is the only one that has called and insists on helping. She has a nurse for her daughter she got 10 years ago. She is my husbands aunt.  Sad that most of his relatives have not bothered to call or check to find out about him.  Sorry, I had a lot on my mind.

You'll see my words emphasized throughout my note. I am trying to help you feel the feelings & emotions I felt as all this was happening. Oh, and that voice in my head that tries to keep me from going postal on people was there with me the whole time. lol funny. He calls me "gal" sometimes. lol Here are some things that has happened to us in the last 2 days because of unconcerned and untrained people.

1. Made a detailed list of Matthew's meds, times, .. a first grader could read and copy it.
First meds came, no depakote.. had it down for 2 times a day instead of 3. Had to wait for doctors orders an hour when I had it right there in in suitcase. (no problem, it will get better)
2. brought me 1/2 of a drooling pill at 12 noon. He doesn't get anything at 12, he get the drooling pill with 4 other meds at 2:00. Just breath charlotte2. They gave me a crushed up pill at 5:30, said it was 10 mg of the baclofen. It was 20 mg of baclofen. He is only suppose to get 10. Breath in, breath out, let it go. From that point on i told them no crushing until I saw it first.

3. The evening nurse was about to give him his 20 mg at 8 and thought it was unusual for him to have it so close together.. good thing because he could have died.walk it out.. walk it out charlotte
4. I walked what seemed like a 1/4 mile round trip to the OBGYN waiting area to pay for a parking pass. They were closed for an hour because computer was down or something... it's ok, just be cool.
5. I walked back to the business office 2 hours later, they were open but didn't take the money or order for the guest trays anymore any more, I had to go to the cafeteria in the hospital part??? In the total opposite direction.
6. I walked to the cafeteria and paid for 5 guest trays for my stay, almost 35.00 bucks.
7. I didn't get the first meal until the NEXT evening.. the nurse called about twice. Finally, I called the complaint number and had two trays in my lap that evening.Eat both of them trays of food Gal, you need your strength. So I did!
8. I am JUST getting started.
9. Was told we could go home at 9:00 after we see the surgeon.
10. Surgeon says ok we have surgery.. blah.. now I have to wait on his nurse to come talk to us
11. An hour later she comes by gives me the appointment and says I have to wait on this other lady to come by. 2 hours later she come by tells me to go to anesthesia for pre-op work up before we go home. We're almost home now?.. well are we? Forgot, and do not have time to re-number this junk.. but we had to go to registration and register AGAIN for the surgery on Tuesday.. then they send us to anesthesiology.
12. We get discharged, the nurse takes out Matthew's IV and we go to anesthesia 6th floor children's hospital.
13. Anesthesia stops us in our tracks and said, Oh you have to take him to get lab work, in the other side of the hospital in the new children's clinic on 2nd floor. Throw some water on your face charlotte.. be nice, it's you, it's not them..
14 We get their they look like at us like we are crazy and not sure why they sent us to them. ok, roll your eyes charlotte, give them a dirty look then breath..
15. After they call to find out why we are there (after not listening to me) we wait another hour, they bring us in. snatch up your purse look em straight in the eyes, then breath..
16 REMEMBER THEY TOOK THE BLASTED IV OUT WHEN WE LEFT THE ROOM. Matthew has very thin viens. By this time he is wet, time for meds and to be fed. So I complained about having to re stick him and they are sorry & don't know why the surgeon didn't request the draw before we left the room... breath gal, breath!.. you know it's you,, its YOU.. not them! I only gave them 1 chance to find a vein and of course they blew the vein. Then they said they knew a girl that could get it that worked in ER so I fed and medicated matthew while we waited on her.AS soon as she walks in the door, matthew PROJECTILE VOMITS everything I just gave him. He is covered and me too. So back out of the chair on the table.. we both smell horrible..breath in, breath out, don't cry, clean up your baby. Get him cleaned up back in the chair, she finds a vein in his foot gets it first time. That's not your back you heard cracking.. it's just your imagination.. breath..
17. Now we are going back across the hospital to the 6th floor to anesthesiology.. have to go in a room that is so small, Matthew & his chair, me and the nurse couldn't all get in at one time.. lol.. That took about 30 minutes. Laugh charlotte, just laugh ,you are almost to home plate.
18. We make it home around 4pm rejoice charlotte! I just went to walmart, bought a straight talk phone. the cashier scanned it twice, voided, and I had to wait for the CSM to void. Got home to activate and she not only voided the charge but also the serial number so the phone has to be taken back. Go to bed gal, just GO TO BED!

WHAT THE HECK IS THIS ???STOMP ON CHARLOTTE AND MATTHEW DAY.. THIS IS JUST RIDICULOUS. OUR LIFE IS HARD ENOUGH WITHOUT ALL THIS EXTRA CRAP. LORD JUST GIVE ME STRENGTH. I REALLY FEEL i need to invest in some good boxing gloves and a punching bag.. I feel like the whole world has turned on me and MATTHEW I honestly don't know why. I AM GOING TO BED.

Who speaks for the kids in the hospital that have not advocates and YES there are many kids up there with NO ONE.

I wonder how many people have died because of stupid carelessness like I saw?
I am going to write a letter, similair to this one to the director of nursing. I will also be demanding that I either give the meds myself or that they bring it to me before crushing or mixing and let me ok it. When I become a nurse I will always check with the parents or caretakers first. I don't want to kill no one so no one should cop an attitude whenever I ask to see the meds first.

Here we go again in 2010

Well, we are backkkkk! Matthew turned 8 years old on February 18, 2010.T he last 3 years have been almost uneventful. Seizure are controlled to about 2-3 every six months! Email if you want to know how he's doing this!

For the last year, Matthew's muscle tone has slowly pulled both of his hips out of socket. We waited as long as we could before putting him through surgery. For the last 2 months his hips have really been bothering him because the femur heads are rubbing on the hip sockets bones. It is almost impossible to change a diaper because he keeps his legs pulled up close and tight. He is in pain any time he is moved.

The orthopedic doctor says he can either put them back in the socket or do a femoral head removal but he wants to see if a Baclofen pump will help first.

So now we are in Blair Batson hospital in Jackson, MS. We had a baclofen trial on Wednesday which involved injecting baclofen directly into his spinal colulmn. Had to be done inpatient becaues of the risk of infection and the fact they had to drain out spinal fluid to inject the baclofen.

If I had to describe the results in one word I would have to use PHENOMENAL! He was feeling no pain.. well maybe a little if we stretched him out too far or accidentally caused his femurs to rub the hip sockets. It even took away the spasticity of his right arm. So he is definately a candidate.

We're ready to go home now.. just waiting for the surgeons nurse to come by and do a consult and set up the appt. for the surgery which will be on Tuesday. Wish she would hurry up. 99 percent of our time up here today has been just WAITING on people.... Ya'll know what I mean.

So the plan is to take a video Matthew's spasticity before and after surgery. The surgery works right away. I posted a video of a guy getting a baclofen pump. It's not pretty and is graphic so don't watch if you can't handle it.

I'll update more on Tuesday. I wonder how much money it's costing MS medicaid for us to sit here in the room waiting on someone to come by and talk to us???


ANother update.. I earned 2 associate degrees and graduated May 15, 2008! since no one wants to pay me enought to pay a CNA with those degrees, I decided to try to go to nursing school. Right now, I have all but college algebra and will try to get in in the Fall of 2010.. I know Big Plans, Dreams, but I'll reach them, even if it's not this fall.

OH, my youngest son & his wife gave me 2 identical twin grandsons, Brendan & Brantley Nov-2009.. They are awesome... still don't quite know who is who sometimes..

Charlotte

Stop and Smell the What???

GOT STUFF TO DO, WELL, MAYBE NEXT WEEK. Can't I just wait until the next time the roses bloom?



This morning was bad. Not sure if it was something wrong with me.. you know I am 44 and suppose to be getting close to the "M" word but most of the time I feel justified in my mood swings even thought I don't have any symptoms of "M".. I don't even know if that was ME saying that or if it's because of "M". Whatever...
What was the very first thing that happens when I open my eyes this morning? Matthew has rolled to the edge of his bed with his head pressed again the side rail. The bumper pad has fallen onto the floor. Not only is he on his side, he's vomiting and choking on his vomit because of the position he is in. If I had not woken up, I am positive he would have choked to death. He was just fine yesterday. Has been just fine for the last 4 months. It's like one minute, everything is in control. I do what I can to keep him healthy but then the next second, he's sick and my world is turned upside down. I have no control whatsoever. He can't roll over so how the heck did he get on his LEFT side?? HE NEVER rolls to the left. Did he have a siezure that put him on that side? I will never know now but I know I will be moving his bed closer to mine.

Sometimes he will be sitting in his chair just fine, the next minute he's choking on his own drool. To the point that he get the red spots on his face and neck. I run for the suction machine and by the time I get back with it, he's already choked to the point that he is wheezing from aspiration. This doesn't happen once a day, once a week, once a month.. I never know.

So I suction him out this morning and get the breathing machine to help him get some oxygen into his lungs. Take off his wet shirt and see that he has clawed himself on the top-front of his shoulders. He had his arms pulled in really tight when he was choking so I think he clawed himself then.

He feels feverish so I take his fever and it's up but not a lot. I run his bathwater while he is recovering from the choking episode.

While his bathwater is running, I fix his morning meds. Phenobarbitol for seizures, Robinul for his excessive drooling, Depakote for siezures, Baclofen for tight muscles, Keppra for seizures, Levocarnitine to help his liver stay healthly from all the seizure meds and tylenol or motrin for his hips that are both out of the socket after already having a surgery to put them back in a few years ago.

He's in pain because of the hips in the morning. The ball joints are rubbing on his hip sockets every single time he is moved.

Finally the bath water is ready. I have to pick him up and put him into the whirlpool in his bath seat. Pry his hands apart to get the straps around him.

I get in with him most of the time and give him his meds, peptamin JR. (formular) and water through his tube and while he's doing this, he is getting another breathing treatment.

After he's washed up. I get to clean myself. He sits in the tub and relaxes while I get out and get my robe on.

I have to pick him up from the seat and put him in his bed about 5 steps away. I usually warm up some towels in the dryer because he hates to be the least bit cold when he gets out. I try to get him dressed without hurting his hips but I usually end up getting a gasp or whimper because I have no other way to get a diaper on him without moving him. I have to used powder and I have to try between his toes, fingers; all his little cracks or he gets fungi, like athletes foot. If he has not pottied, I have to give a babylax and wait until he does his business, and clean him up again. He has constipation problems and he will not "go" until "after" he's eaten and taken a bath.
Its very hard getting his shirts on because his arms are so tight.. I feel like I am pulling and pulling and by the time I am finished getting him dressed, I am exhausted. We have an appt in Sept. to discuss getting a baclofen pump but that's not going to keep the ball joints on his legs from rubbing on his hip joints. How am I suppose to let him go to school and trust that those people will be as careful as I am when they change his diaper? I'm not!

After he's dressed I pick him up and put him in his chair. My that time I can feel a tingling in my lower back.. Not a good tingling. If I touch my back when it's tingling, I can't feel the spot I am touching. It goes numb. I'm praying that feeling does not travel to my hips or legs or we are in trouble.

So now he gets his hair combed, teeth brushed, and then It's finally my turn. By this time, my hair has tried wet and looks awful so I have to dampen it, blowdry it out again. I don't even know why I bother putting makeup on here lately. We hardly go anywhere and I don't have to worry about anyone coming over here...... for some reason... I guess they think I might ask for help or they feel guilty for not offering? Who knows. People are strange.

Anyway That's the first 3 hours of my morning. I have not had coffee, or even had time to go to the bathroom. I think I am too tired now to get to the afternoon routine so I'll save it for later.

I was not in a "bad" mood, I would call it a frustrated or defeated mood. I always feel that way when Matthew gets sick and I can't do anything about it. It's like I am mad at myself..
After things settled down, I check my email and social networking sites. (The WWW social networking sites like Facebook, MySpace and Yahoo groups the only social life I have besides taking the online classes and having chats with my classmates. Because I can't get out and go and I don't have a relief caretaker for Matthew for anykind of life outside of my house) Anyway, I am finally drinking coffee, frustrated but my nerves are finally settling down....
I had posted on my facebook, myspace, and emailed my friends in my address book a few weeks ago asking them to send me some recipes for a cookbook fundraiser project. I don't "want" but NEED to have someone come out and build a platform to lift Matthew's whirlpool so I can get him in and out using his LIFT so My husband and I don't break our backs, pull a muscle or worst case, fall and drop Matthew.. But anyway..Out of a total of approximately 500 contacts, I got recipes from 3 people. I only had 5 weeks to work on the book, 3 weeks had passed by, so after all my fiasco this morning, my status on facebook reads Charlotte says"Fundraiser cancelled". If I can't get but 3 people to send me recipes, I'm pretty sure I won't be able to sell any cookbooks."
I have asked about 6 times for recipes.
Was I wrong to post that? I can see that most all of my contacts have taken many of the those facebook/myspace quizzes, post "junk" other people's walls. Send those stupid "facebook" drinks back and forth, play games, forward me tons and tons of junk email but no one has the time to copy and past ONE recipe?? My feathers are ruffled again.. Must be that "M" again.
How many times have I seen posts of people asking for prayer or reaching out for help and not receive any comments or words of consolation? Breath people, breath. lol Some of my contacts have over 200 friends but I sit and watch them get NO responses when they say, I am having major surgery today, or My dad just died.. they might get a few comments but why not at least Half send consoling comments? But the friends are too busy using the social networking applications and not interested in communication so what's the point? Did the definition of a "friend" change since I've been out of the pocket, taking care of Matthew?

I wonder who made up that saying "Stop and smell the roses."? That quote has been around a long, long, time. I wonder what that person would say now if he had to make up another saying for today's world? If you can't remember the last time you have helped someone, called someone just to talk, or did anything for anyone, then you have something to think about.

I hope I don't offend anyone. If I did, please just ignore these words and brush it off to the "M" word or just call me crazy. If you delete me from your contacts or friends, I wont be upset and promise not to try to add you back.

Posted by Charlotte at 4:22 PM Links to this post

A typical morning at my house.

This morning was bad. Not sure if it was something wrong with me.. you know I am 44 and suppose to be getting close to the "M" word but most of the time I feel justified in my mood swings even thought I don't have any symptoms of "M".. I don't even know if that was ME saying that or if it's because of "M". Whatever...
What was the very first thing that happens when I open my eyes this morning? Matthew has rolled to the edge of his bed with his head pressed again the side rail. The bumper pad has fallen onto the floor. Not only is he on his side, he's vomiting and choking on his vomit because of the position he is in. If I had not woken up, I am positive he would have choked to death. He was just fine yesterday. Has been just fine for the last 4 months. It's like one minute, everything is in control. I do what I can to keep him healthy but then the next second, he's sick and my world is turned upside down. I have no control whatsoever. He can't roll over so how the heck did he get on his LEFT side?? HE NEVER rolls to the left. Did he have a siezure that put him on that side? I will never know now but I know I will be moving his bed closer to mine.

Sometimes he will be sitting in his chair just fine, the next minute he's choking on his own drool. To the point that he get the red spots on his face and neck. I run for the suction machine and by the time I get back with it, he's already choked to the point that he is wheezing from aspiration. This doesn't happen once a day, once a week, once a month.. I never know.

So I suction him out this morning and get the breathing machine to help him get some oxygen into his lungs. Take off his wet shirt and see that he has clawed himself on the top-front of his shoulders. He had his arms pulled in really tight when he was choking so I think he clawed himself then.

He feels feverish so I take his fever and it's up but not a lot. I run his bathwater while he is recovering from the choking episode.

While his bathwater is running, I fix his morning meds. Phenobarbitol for seizures, Robinul for his excessive drooling, Depakote for siezures, Baclofen for tight muscles, Keppra for seizures, Levocarnitine to help his liver stay healthly from all the seizure meds and tylenol or motrin for his hips that are both out of the socket after already having a surgery to put them back in a few years ago.

He's in pain because of the hips in the morning. The ball joints are rubbing on his hip sockets every single time he is moved.

Finally the bath water is ready. I have to pick him up and put him into the whirlpool in his bath seat. Pry his hands apart to get the straps around him.

I get in with him most of the time and give him his meds, peptamin JR. (formular) and water through his tube and while he's doing this, he is getting another breathing treatment.

After he's washed up. I get to clean myself. He sits in the tub and relaxes while I get out and get my robe on.

I have to pick him up from the seat and put him in his bed about 5 steps away. I usually warm up some towels in the dryer because he hates to be the least bit cold when he gets out. I try to get him dressed without hurting his hips but I usually end up getting a gasp or whimper because I have no other way to get a diaper on him without moving him. I have to used powder and I have to try between his toes, fingers; all his little cracks or he gets fungi, like athletes foot. If he has not pottied, I have to give a babylax and wait until he does his business, and clean him up again. He has constipation problems and he will not "go" until "after" he's eaten and taken a bath.
Its very hard getting his shirts on because his arms are so tight.. I feel like I am pulling and pulling and by the time I am finished getting him dressed, I am exhausted. We have an appt in Sept. to discuss getting a baclofen pump but that's not going to keep the ball joints on his legs from rubbing on his hip joints. How am I suppose to let him go to school and trust that those people will be as careful as I am when they change his diaper? I'm not!

After he's dressed I pick him up and put him in his chair. My that time I can feel a tingling in my lower back.. Not a good tingling. If I touch my back when it's tingling, I can't feel the spot I am touching. It goes numb. I'm praying that feeling does not travel to my hips or legs or we are in trouble.

So now he gets his hair combed, teeth brushed, and then It's finally my turn. By this time, my hair has tried wet and looks awful so I have to dampen it, blowdry it out again. I don't even know why I bother putting makeup on here lately. We hardly go anywhere and I don't have to worry about anyone coming over here...... for some reason... I guess they think I might ask for help or they feel guilty for not offering? Who knows. People are strange.

Anyway That's the first 3 hours of my morning. I have not had coffee, or even had time to go to the bathroom. I think I am too tired now to get to the afternoon routine so I'll save it for later.

I had posted on my facebook, myspace, and emailed my friends in my address book a few weeks ago asking them to send me some recipes for a cookbook fundraiser project. Out of a total of probably 500 contacts, I got recipes from 3 people. I only had 5 weeks to work on the book so after all my fiasco this morning, my status on facebook reads "Fundraiser cancelled". If I can't get but 3 people to send me recipes, I'm pretty sure I won't be able to sell any cookbooks."

Was I wrong to post that? I sit and watch how many take all those facebook quizzes, post "junk" other people's walls. Send those stupid "facebook" drinks back and forth, play games, forward me tons and tons of junk email but no one has the time to copy and past ONE recipe??
How many times have I seen posts of people asking for prayer or reaching out for help and not receive any comments or words of consolation? Why can't people slow down long enough to help someone else for a split second are NOT friends. Breath people, breath. lol It's like you have social networking friends but the friends are busy using the facebook/myspace applications and not interested in communication so what's the point?

The best use I get out of the social networking sites is connecting with parents that have kids like Matthew.
I wonder who made up that saying "Stop and smell the roses."? That quote has been around a long, long, time. I wonder what that person would say now if he had to make up another saying for today's world? If you can't remember the last time you have helped someone, called someone just to talk, or did anything for anyone, then you have something to think about.

This rant is continued and spell checked at www.brainmalformations.com under the "stop and smell the WHAT?" link.

Random Pictures to help get this updated

I have decided to keep blogspot and continue updated it since I am able to link to my new web page. Here's what happened since the last time I posted.

This picture was taken Easter 2009. As you can tell, Matthew is still here and doing great. Almost seizure free. However he is having trouble with his right hip again and we may be looking at another surgery soon. His appointment is May the 12th. I am really dreading this sugery.

Matthew turned 7 years old in February. And look how we all acted at his diagnosis! We thought he was dying then and the things we read said he might live two years. That's the reason I have started my new website. I don't want people to be naive and thing everything they read on the internet is true because its not!

My youngest son Korey (matthew is my grandson, but my baby)

Got married on April 25 to Larae Gardner. They will be parents around Decemember 1st. The wedding turned out beautiful as you can see from the pictures! This will be grandchild number three!

My second grandchild Makenna will turn 2 on July 4th 2009. Little Ms Independence.

Hey I just turned 44 so I am not an OLD Grandma. Don't believe me? Meet me at the military park and see who wins the 2.7 mile hike? I only just broke my record at 24 minutes. (This is mostly hills so its not a flat run.) Come on, shoot me an email. lol

Here's a cute video of the new kitten I've

been raising. I found him under the house. He was skin and bones. He's not anymore.. Anyone want a kitty? Look how sweet he is.. NOT