Keanu Santos

Outside Polar World into album China Total of 32 pictures

Hi guys, new blog site. Looks cool! have a great time in China and we are praying for you guys! lots of love. Dalmain.....Bearworx

MRS
DEAREST LISA AND KEANU

THESE PICTURES ARE AMAZING - I CAN'T BELIEVE YOU ARE ACTUALLY THERE. PLEASE PLEASE KEEP IN TOUCH AND UPDATED. OUR THOUGHTS AND PRAYERS ARE ALWAYS WITH YOU.

LOTS OF LOVE

CINDY AND FAMILY

XXX

Getting ready to go Downtown into album China Total of 20 pictures

I want to tell you a story about a little boy . . . .

His name is Keanu. Keanu was born on the 25th May 2004. A beautiful healthy little boy, who brought nothing but joy and happiness to his mother.

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An Angel Sent From God...

"My Little Man" - Kim Ambrose

Little boy, my little man, light and love of my life,So precious, so gentle, you are my shelter, my shining light.You are totally dependant on me, on your own there is nothing you can do,But little man, this may surprise you, for I am just as dependant on you.

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Some good news
It’s been a REALLY long time since I’ve posted anything on the blog…..too long. Please understand that sometimes things get so overwhelming with therapy, dr’s, hospitals and all at the same time – dealing with depression. These last few months have gone by so quickly, and as usual we’ve had some good times and some bad times. I guess that’s just how life is. You get the good with the bad. Sometimes I feel there are times when there’s more bad than good though.

Keanu is doing well at the moment. I’m happy to say that the road accident fund FINALLY paid out on Keanu’s case. Some people ask me if the money is enough or worth the wait etc. I don’t think any amount of money can make up for what happened to my little boy. And no amount of money is going to make me feel better – unless of course there were some miracle treatment that could just fix his brain. But there isn’t and never will be. But it’s ok – because I love my little man with all my heart and soul and he is perfect in every way. Not to say that it doesn’t hurt, cos it does and I don’t think the pain will ever go away. Sometimes I think about the things I will never get to experience with Keanu – like him running to me and throwing his arms around me with joy because he’s happy to see me at the end of the day, or to hear him say “I love you mommy”. But you know what? I know I’ve mentioned before that I wish he’d respond to me when I play with him…….and now he does :-) He gets so excited, gives you the most gorgeous smiles (showing his one dimple) and waits in anticipation for more. I absolutely love it. I love the way he responds. And I thought it would never happen. So I guess I can never give up hope because you just never know. I’ve got something EVEN BETTER to share with all of you. Moms, remember the overwhelming joy you felt when you saw your child walk for the first time??? And no, Keanu didn’t walk :-) I experienced that feeling. Where my heart felt like it was ready to explode with joy. On the 2nd of September I woke up at 5am to hear Keanu laughing his head off. Some of you might wonder, what’s the big deal but Keanu has only ever laughed ONCE. He was just over a year old and he giggled when I tickled him. He laughed that one time and has NEVER EVER laughed again. He makes happy sounds but never laughed. I woke up to hear my son laughing non stop for absolutely no reason at all (none that I could see). I couldn’t believe it. I wanted to phone everyone I knew to tell them. I recorded him about ten times on my cell phone, scared that it was going to be another once off thing. The only way I can try to explain how I felt is comparing to how a mom feels when her normal child walks for the first time or someone winning the Lotto! It was absolutely amazing and I thank God so so so much for giving me that. I have recorded it and will try and post it on the blog but if I can’t you are welcome to go onto Keanu’s facebook group, “My Miracle Baby-Keanu Santos” and watch the video there. And I am happy to say that it wasn’t a once off and Keanu has laughed many times after that day.

At the beginning of September I took Keanu to Cape Town to a therapy centre called SNAP. They specialize with autistic children but also offer therapy for other special needs. Anyways, we were there for two weeks. Keanu received 6 HOURS of therapy a day. I seriously didn’t expect him to handle it but he did. He really enjoyed himself, always smiling and even laughing at times. That school is amazing. The patience that the teachers have for the children is amazing. I’m sorry to say but I have not seen that at any of the schools here in Durban. 90% of the school I’d say is one on one therapy. A teacher will work with one child in their own little room for 3 hours in the morning and 3 hours in the afternoon. You can see how happy the children are there and the teachers definitely love the children. If I lived in Cape Town, Keanu would be there in a heartbeat everyday but unfortunately that’s not possible. The therapy consisted mainly of O.T. work. They worked a lot with his hands. Teaching him to open his hands, hold things, bringing his hands to the midline. Basically they try to teach him to use his hands so that one day he can be self dependant. To be able to do things for himself like brush his teeth, feed himself etc. They gave us a home program to continue with for the next three months. After that they will re assess Keanu and make the necessary changes to his program. I have a young girl at the moment trying out as his new caregiver. So she will follow through with his home program. She has a bit of experience with disabled children and adults. A little quiet though but I’m hoping that will improve. You can’t be quiet around Keanu, he needs to know that there is someone there and that he has their full attention. Keanu loves attention himself. And the more attention he gets the happier he is. At Snap they really praise the children in everything they do which motivates the children to try even harder.

It really is sad that South Africa doesn’t have much to offer special needs children like they do overseas. There is SO much out there but we don’t have access to it. Unless you’re a millionaire maybe. The problem is that because it’s overseas, everything is in US $ which is basically times 10 for us. Sometimes I wish I could win the lotto and just go away with my little boy and give him the opportunities to improve, the opportunities he will never have here. If only it were that easy.

I have been reading a book, “What to do about your brain injured child” by Glenn Doman. This man came up with some form of therapy that seems to do amazing things for brain injured children. It says, Glenn Doman graduated from the university of Pennsylvania in 1940 and began pioneering the field of child brain development. By the early 1960’s, the world-renowned work of The Institutes with brain injured children lead to the publication in the Journal of American Medical Association of the first article ever written on specific results obtained in treating brain injured children. Since then he and his dedicated staff have persued a relentless battle to discover and perfect programs to make brain injured children well. More than 15 000 families have found their way to The Insitutes from 135 nations. The long waiting list that resulted inspired Glenn Doman to write What to do about your brain injured child in 1973.

These are some of the results recorded over a period of 5 years:

Crawling – of the 436 children who were unable to move, 40% crawled for the first time in their lives.

Walking – of the 223 children who were unable to walk, 49% began to walk without help for the first time.

Understanding – of 453 children whose comprehension was not yet equal to that of a average three year old child, 90% were able to understand at least as well as a three year old for the first time in their lives.

 

These are just some of the results they have achieved. I know to some that’s not really major but for a child who can do nothing, that’s a MAJOR achievement. But as usual, it’s all overseas. Nothing in South Africa. It’s pathetic!!

 

Anyway, enough rambling on about that. Let me get back to our update. Keanu went in to hospital on the 19th September. They stretched the Achilles tendon in his calves. It was a big operation but unfortunately he has to have casts on his feet for the next 6 weeks. And as usual, my boy amazed me with his recovery and coping with the casts on his feet. They are up to his knees and are heavy and yet he is still his happy old self. He really amazes me at times. I’m really proud of him and his strength through everything he has been through. Unfortunately I cant say the same for myself. I have been down lately. I think everything has just been getting a bit much including the worrying over the operation. On top of it all, I’m looking for another place to stay. My lease is up at the end of the month and pinetown doesn’t feel so safe anymore. Recently there was an attempted break in down stairs from me. So that scares me too, being here alone in the night. But it’s so hard to find a suitable place to stay. I have to look for something that has no stairs because of carrying Keanu (20kgs), a bedroom big enough to put his bed in with mine because I’m too scared to leave him alone with the seizures. And the places that are perfect are too expensive :-( The most ridiculous of all is the agents requirements. The rent has to be a third of your salary. So if your rent is R4000 you have to be earning R12 000. If not, then you are not even considered. How many people earn R12000 a month??????? Especially single moms??!! So that’s just added to the stress. I need a holiday :-) Somewhere with a Jacuzzi so that me and my boy can relax in the warm water all day. For those of you who don’t know – Keanu DOES NOT do cold water. He hates it :-)

Very very long story short, Keanu is fit and healthy at the moment. And very happy. Which seems to make everything ok to deal with. The best is waking up to his smiling face every morning. I LOVE IT! Thank you all for still checking up on us and please don’t ever stop praying for Keanu. Take care everyone and God Bless. Till next time…..

 

 

Keanu's Update
I know it’s been a long time since I last posted an update on the site and I must apologise for that. Things just feel overwhelming lately. The last time I posted, Keanu was in ICU with his feeding tube. The feeding tube stayed for approx 14 days then they changed him to the peg. It looks like a plug on his tummy. Better than the long tube sticking out. Keanu’s doing well with his peg (tube). At least he’s getting all his fluids now. So no more dehydrating.

For those of you who are wondering about the baby in ICU that I spoke about previously – unfortunately she passed away L The nurses said she was suffering. Still saddens me though.

Latest News: Keanu’s seizures haven’t been too good lately. There are nights where he has a seizure every few minutes. It’s horrible because I just don’t know what to do about it. There’s always a different reaction to the seizures. I don’t even know what you would call the type of seizures my boy gets. There are so many kinds with all different reactions. Anyways, when Keanu has a seizure his body does not begin to shake (those SCARE me), but with Keanu, his arms and legs stretch out and he becomes very stiff. His body curls into a C shape. It also tightens his face and looks like he’s holding his breath while it holds him because his face goes very red sometimes. The longer the seizure holds him, the stronger it gets and the more it drains him out afterwards. Sometimes as his body is starting to relax, he makes different sounds. Sometimes it sounds like he’s gasping for air and other times he makes a screaming sound. These are really horrible. I just wish I could help my boy. Dr says that the only way to control his type of seizures is to give him lots of meds but then that will just bomb him out all day. So it won’t be much of a life if he’s sleeping all day. So it’s a no win situation.

Another no win situation is his feet by the sounds of it. Keanu’s feet are getting very tight. He keeps them pointed all the time. I took him to an orthopaedic doctor to find out if the Botox will help loosen his feet up. Doctor says that the Achilles tendon in his calves has already shortened. He has what they call a fixed deformity. The only way to correct this is to operate. It’s not a major operation. He goes home the same day. They make a small cut in the calve and stretch the tendon. The cut is so small that they don’t even stitch. This is done under anaesthetic. The down side to this is that he has to then wear a cast on both his feet (up to the knee) for 6 weeks to allow the tendon to heal. But it doesn’t end there. That doesn’t solve all. After that we have to make sure they don’t tighten again so he will need to wear his foot splints alot more and stand alot more. I asked his physio today that once we do the operation and his foot is loosened (or if we just try stretching them out) when he DOESN’T have his splints on, will the foot stay in the 90˚ angle of will he still point it? She says he will always point them because of the tone in his feet. So even if he wanted to keep them right, it’s like his body is not allowing him to do that. So what do I do?  We are not making the decision just yet on when to operate but he’s going to need it sooner or later. It’s inevitable.

Then I’ve been battling so much to find a decent caregiver for my boy. I’m looking for someone full day so that I can start doing what I love best again – beauty treatments. Not only will I be doing something I really enjoy but it’ll also help us with a bit of extra cash each month too. I will either offer treatments at home or in the clients own home if it’s not too far. I’m going to offer manicures, pedicures and false nails. I’ve managed to do the course on gel and acrylic nails but haven’t done my exam as yet. I need to practice first and I don’t have many people I can ask to be my guinea pig J And on top of that I don’t like the idea of doing someone’s nails and they end up a mess. I’ve always been a perfectionist when it came to my work but right now I’m far from doing a perfect set of nails. Back to the caregiver story – I’ve advertised for a caregiver who will work full day, take him to his therapies and when he’s at home to follow through with the therapy as well as try to teach him things. I want them to play with him but in a therapeutic way. So many reply saying how this is the job for them blah blah blah. But when I tell them what it entails, they all back out! I’m sure alot of these girls see ‘’physically disabled’’ and probably think – bonus, he can’t do anything which means I don’t have to do anything. I’m convinced that’s the attitude they have. Then the girls that do apply, come for a day or two as a trial. Still insist that this is the job for them and when the starting day comes........they don’t PITCH!!!!! I give up. I don’t know if I’m ever going to find the right person for my boy. People have told me to put him back in a school in the mornings. But I just feel that the one on one therapy would be more beneficial to him and his therapists only take him in the mornings and the schools are only open in the morning. So I don’t know what to doL

I wonder if someone can answer a question for me..........WHAT MAKES A WOMAN A GOOD MOTHER?

People tell me I’m a good mother but I don’t feel that way. I feel very far from being that. I feel like I don’t do enough for my boy. I feel like I should be doing so much more for him. But it’s REALLY hard to do the things he needs. He hates to be stretched, he hates wearing his foot splints, he hates standing but it’s all of the things that he needs so much. It’s hard to do that and ignore the crying L He really cries his heart out and I give in. Am I being a bad mother? I sure feel like one. But how do I make him understand that I’m trying to help him – not punish him?

Then there’s something else. The one thing I feel MOST guilty about. Feeling sorry for myself. Feeling sorry about the fact that my little boy can’t run to me and give me a hug when I get home at the end of the day. Or say he loves me when I tuck him in at night. Or seeing the joy in his eyes when we go on outings. I feel so depressed about all that and will sit and cry when I think about it. BUT then I think about other little children who can’t even smile, who are always in pain, who are so ill that they don’t even get to leave a hospital bed. I think of other mom’s who have lost their children – then I really cry my heart out. For the pain those parents must feel, for forgetting that there are other moms out there that are in so much more pain than I am.

When I watch Keanu sleeping I always wonder what he dreams of? Does he dream pictures? Does he dream of playing like all the other children he hears around him during the day? Does he dream of me? So many times, in my dreams, Keanu is walking, seeing and talking. He’s not 100% ok but for me – he’s perfect – whether I’m asleep or awake. The one thing I do know that will come out of all this.........my boy will go to heaven one day. He already has a special place ready for him in heaven. But it doesn’t ease the pain you feel day in and day out.

 

ICU
Hi everyone. Today is day 3 in the hospital. Keanu came in on tuesday for the op for his reflux, hernia & put the feeding tube (peg). He was in theatre for about 2 and a half hours. I cried when i left him in theatre. There was nothing i could do but just sit and wait. Dr finally came to see me, telling me everything went well with the op. Keanu was very inflamed inside and the hernia was high up in his chest. Dr made 4 small cuts on his tummy and did everything with cameras. When Keanu came out of theatre he went straight into ICU. He has three plasters on his tummy covering the cuts and he has his feeding tube. The first night he didn't manage to get much sleep. He'd sleep for ten minutes and then wake up crying with pain. Yesterday was a better day. He even managed to smile at one point. Yesterday things got very scary for me. Because Keanu hasn't been taking anything orally (cos of pain), his saliva has gotten very thick in his mouth. This morning he started choking on it, was trying to throw up but couldn't and was choking more because of that. The nurse quickly suctioned as far down his throat to help him. It really scared me cos he starts battling to breath. It happened about 12 times. So now i'm watchin him so carefully. Dr doesn't seem too concerned about it though. Says it's normal. All i know is it scared me BIG TIME and spent most of my day in tears :( Dr is going to do an ultra sound on Keanu's kidneys. He says the one kidney looked very swollen when he was operating. So he wants to check that everything is ok. I'm really stressed out at the moment. I've been crying alot. There's also another little baby here in ICU. She's 6 months old. She was 3months prem. In the time that we've been here they've had to revive her about 7 times. She stops breathing. This upsets me so much. This tiny baby suffering so much. The really sad part is......her parents don't come see her much. Possibly 5mins every second day. Apparently she's been here two weeks already. She looks so lonely. If i could, i'd go sit and talk to her all day - but she's in isolation. :'( Please everyone - say a prayer for this little girl. The nurses didn't tell me her name but her surname is Dlamini. One thing i have learnt through everything is that life is fragile and precious - enjoy every minute of it. And if you have children - tell them how much you love them. Hold them close everyday. I will update you on the ultra sound once we get results. Take care and God Bless

Keanu's Operation
Hi everyone,

 

Sad to say that Keanu will be going in for his op on Tuesday (3 March) L Dr says it’s quite a big op. 3-4 hours in theatre. Keanu will go to High Care when he comes out of theatre in case of any emergencies like him needing ventilation or something. After that he’ll be moved to the paed’s ward. We’ll be in for 5-7 days – depending on Keanu’s recovery. Although my boy always manages to amaze us with his strength so I don’t think it’ll take him too long to recover.

I’ll try explain a little of what he’s going to be doing:

 

(Medical Explanation)

In a fundoplication, the gastric fundus (upper part) of the stomach is wrapped, or plicated, around the inferior part of the esophagus and stitched in place, reinforcing the closing function of the lower esophageal sphincter: Whenever the stomach contracts, it also closes off the esophagus instead of squeezing stomach acids into it. This prevents the reflux of gastric acid (in GERD). A fundoplication can also prevent hiatal hernia, in which the fundus slides up through the enlarged esophageal hiatus of the diaphragm.

Dr says he normally does the op via 4 little cuts on the stomach and with cameras. He says only if there are problems with that, they will then have to make a cut across his tummy – but it’s very rare.

I really am stressing L I don’t like the idea of my baby going into theatre. So these last few days haven’t been too good. One good thing is that my mom will be here for the op. She’s coming from jhb, so the support will help. Including the support of loved ones and friends.

 

Keanu, otherwise, is doing well. He really has become very vocal. J And he makes sounds almost like a baby babbling and cooing J J J

He’s rolling onto his tummy more and more – still gets his arm stuck underneath him a little J But that’ll come with time. He’s sitting in his specially made chair more often now and trying to make him stand more but he really doesn’t enjoy it. And it breaks my heart to force him to do something and he cries.

 

I promise to try add some new photos to the blog. I’ve been trying to sign up with the other baby blogs that give you so so much more space for photos etc but everything has to be paid by credit card because it’s all overseas. So I have to make the best of this one. I don’t know why you can’t just do internet transfers.

 

That’s about all the news I can think of right now – I have so much on my mind at the moment so please understand if I leave some info out.

I will post an update a day or two after Keanu has the op.

Please all keep him in your prayers.

 

Take care

Ph Results
Hey everybody.

I promised to let you all know the results regarding the reflux op. Well Dr Shaik called this morning. He says a normal ph is 15.........Keanu's is 68!!! :-( Man i really didn't want this. I didn't want my little man going through a major op. And it's dealing with everything else that goes with it too - ICU and especially the pain he will have :-( Dr Shaik said he'll call me in one of the days to go through every step of the operation and treatment afterwards. He says the op will be in the first week in March. So pls keep him in your prayers.

Hurt
Why do things have to hurt so much? Do you ever get over the hurt? And if you do, does that mean you don't care enough anymore? I don't know what's going on with me lately. Everything hurts too much. I look at my child and i start crying. I watch something sad on tv and i start crying. I think of the special friends i've made through this journey who are hurting even more than i and i start crying. I can't explain the sadness i feel inside of me. Some might say it's because these past three weeks have been hectic and it's all overwhelming - but i think it goes deeper than that. Do i make sense?

As i said, these past 3 weeks have been hectic. Keanu had his appointment with the professor who estimates children with disablities life span. The prof asked alot of questions about what Keanu can or can't do. What his daily routine is. How i'm coping with everything. Then he watched me feed him his lunch so that he could check his swallowing reflex. He says it's pretty good. Keanu doesn't have any problems eating that's for sure. But the drinking is a problem :-( And to me,it sounds like he's battling to swallow when he's drinking fluids. He kinda gulps everytime he swallows. I'm not sure if that's normal or not. Anyway, after 2hours with the professor-he says that kids are usually placed into 3 categories. Good, not so bad and bad. He says that at this point he can only tell me that Keanu falls in the middle somewhere. I guess it's better than bad. He can't give me a figure of how many years he thinks my child will be with us, not until he checks it with charts etc and works it out. So now we wait......

Keanu then had an appointment with Dr Shaik. He's a paediatric surgeon who performs the surgery for all the children's feeding tubes. Before we can put the tube in, Dr said we have to check if Keanu has bad reflux or not. Apparently it can cause complications if he does and it's not seen to. So to do that we were admitted to hospital last wednesday. We had to go to Parklands Hospital. Keanu went into theatre and they did an endoscopy where they put the camera down his throat to see his tummy etc. They also inserted a tube from his nose down into his tummy. This tube was connected to a box. The box records the ph levels in his tummy to work out exactly how bad the reflux is. So Keanu spent the night with this box strapped to his body. Dr says that from the endoscopy - he does have bad reflux as well as a hernia. :-( But he says sometimes it looks worse than what it is and that's the reason for the ph testing. Unfortunately it takes a couple of days to get the results for that so we have to wait. Bottom line is that if it does show that Keanu has bad reflux then they have to operate to correct this. I have been told it's major surgery. I've also been told there can be complications if he's not treated properly. So all this has been freaking me out so much lately. I'm waiting for Dr Shaik to contact me with the results. Lets pray he doesn't need the big op. If he doesn't need it,then they will just put the feeding tube in. So for 6weeks my child will have a long plastic tube coming out of his tummy. I'm nervous about it. Nervous i hurt him. Nervous i pull it out. Nervous of doing something wrong. I'm really stressing for the results and the op that's still to come.

What amazes me is that i go through so many different emotions each and every day - and my boy (the one who's physically going through it all) has always got a smile on his face and in such a happy mood. He's such a fighter. From day 1 he has never given up. I'm really proud of him.

I will keep you all updated on what's to happen regarding the op. Take care all.

The New Year
Firstly I'd like to say sorry for not posting an update in such a long time.

Secondly I'd like to wish everyone a very happy new year.



The week before Christmas Keanu got sick with the flu and as usual, ended up

in hospital to be tube fed. His temp kept going up and down and we were battling to control it. So Sunday night (14 Dec) my baby was admitted to St Augustines. We're regulars over there now. All the staff know us. But I must say, I'm very happy with their service and care. Not only towards the

children but to the parents too. Just wish they'd change their menu and offer a more comfortable sleeping place for moms :-) Especially when you

spending a week at a time there. My back is broken by the time I leave the

hospital.

This time Keanu got to sleep in a "big" bed, not the cot like they normally

give him. His temp just wouldn't go down and with the cot being so small and

padded with pillows I just felt being enclosed like that is not going to help the temp. So they moved him into the normal children's bed. Which he enjoys because he has more space to wriggle around in.

Keanu originally went in with the flu. Dr saw him Monday morning and said he's not looking too bad, we must just make sure he takes in all his fluids. Tues – public holiday, Dr didn't see him. Wed – Dr was sick so another Dr just checked in on him. Then the temp really started going up. Thurs Dr came to see him and told me my child now had pneumonia!!!! Keanu has NEVER had pneumonia. I was really upset about this. I've always been thankful that

beside the flu, my child is very healthy. Not this time :( We were finally discharged on the 22nd Dec.

We went to jhb for christmas this year where all the family are. It was good to get away but wasn't a very happy holiday. And now the new year starts......

A new caregiver has started with Keanu.It's only her first week - so we still in the trial phase. She looks a little nervous around him. But i have to give her a chance to prove herself. Keanu is doing well. I'm happy to say that he's rolling beautifully onto his tummy now :) with no problems at all. And you can see he tries real hard to get back onto his back but always gets his arm stuck in the way.

For the next six months Keanu's routine will be changing. He'll have therapy 5 days a week with physio and ot alternating each morning. Then horse riding and swimming alternating early afternoon each day.Then hyperbaric oxygen treatment 5days a week in the late afternoon. So my little man has a busy 6 months on the way. Therapy should start next week.

Speaking of next week Keanu has TWO appointments i'm dreading. First one is on monday with a professor. It's for the road accident fund. From what i understand he will look at all the records of Keanu's injuries etc and then estimates his life span. So you can only IMAGINE what i'm going through right now. Next appointment is wed with a surgeon who does permanent feeding tubes in children. Yip - my child is going to have a peg put in his stomach. A permanent feeding tube to make sure he's always getting enough fluids and food which will then stop the frequent hospital visits. I never wanted to do this. :( But i have no choice. Great start to the new year hey.

I'm not even going to go into how i'm feeling emotionally. I'll be here all day typing and will be in complete tears. Why can't i accept this? Why can't i accept that this is Keanu's present and future? As hard as i try - i just can't do it. :( :( :(

My Anticipated Son
Hi everyone

Thank you everyone for your words of encouragement. It really means alot to me,even if i forget to say it sometimes. I think sometimes i get so caught up in helping Keanu that i tend to forget those around me who care for both of us.

There is one thing people that know me personally must know - i will not ask for help,even when i'm at my lowest. Don't ask me why? Guess i'm trying to be 'Supermom' but it doesn't seem to be working. So if you haven't heard from me in a while or feel something's wrong - you're probably right. All I ask is to just offer your help - even if it's something small like a hug and a shoulder to cry on. Trust me - that's the best help anyone can offer, next to keeping Keanu in your prayers. Even when it comes to that.....Prayers i mean. Don't ask God to make Keanu normal. I know you must be shocked right now at what i'm saying but i feel in my heart it's never gonna happen. Keanu will never be a normal child. I know that but i do want him to be the best he can be. I want you to pray to God to give me strength. Does that sound selfish? I'm sorry if it does but i know that with more strength, i can help Keanu more.I can be a better mother. A more loving mother. I can't do that without strength. Just pray to God that Keanu becomes the best he can be. That he continues to teach people in his own special way to have patience, to remember nothing is perfect, that life is precious and miracles do happen. Keanu being with us today is a miracle on it's own.

To my angel, you have taught me so much these past 4 and a half years. You taught me what it is to love so much that it hurts. I never knew i could love like that. You have taught me not to forget that although it seems sometimes God is not listening, he always is. And he reminds me every now and again. And he uses you to remind me. Your precious smile when i feel my heart is breaking or your small attempt at a laugh. Haven't quite conquered the strength and patience yet :-) Sometimes i wish you could run to me when you come home, after a weekend with your dad, throw your arms around me and tell me you missed me and that you love me. Those are the little things that break my heart into ten million pieces. My baby, my angel i will love you till the end of time. You are my life,my everything and i thank God everyday for giving me some a beautiful little boy.

Keanu this is for you from mommy.......

To My Anticipated Son

I anticipated of complaining of a waking baby,

not of being grateful he's able to wake at all.

I anticipated the wonder of time rushing past,

not of reflecting on milestones so small.

I anticipated crying at immunizations and bumps while learning his way,

not of agonizing at more tests, evaluations and word of more delays.

I anticipated choices over preschool, clothes and scout troops,

not of choices between hospitals, specialists and which support groups.

I anticipated loving him, but enjoying his independance from me soon,

not of loving him so much i'd want to keep him sheltered in my cocoon.

I anticipated health and perfection when my baby was inside,

thinking anything less would be tragic.

But now that he is here,my special son has worked some kind of magic.

I anticipated anger and disappointment at this fate,

not the joy and growth and knowledge that have become mine as of late.

I anticipated something different, that is certainly true,

but that's because i never could have anticipated, one i love, as much as you.

(Written by Kathleen Hoppe)

Thank you to everyone who keeps checking on how we are doing through our blog, facebook or email. Thank you to all my family and the special people i have met through this journey with Keanu, for your support, care and encouragement.

Now for some shocking news. The other day i started seeing a new psychiatrist. I told him how overwhelmed i feel sometimes and he told me, point blank, that i must put Keanu in a home. Because if i don't i will never have a normal life. I will never stop being depressed and run down!!! It's not the first time a dr has said that to me. Why is that always their first conclusion in helping me?? Is that what they would do? A dr is supposed to help you get through your problems. That's like telling someone who says they hate their life-hey then you should just kill yourself.No more worries! Is that their attitude? But don't worry - it gets worse!

I told him about a friend of mine who lost her little boy a few weeks back. How it scares me to think i may not have my little boy forever. He said that maybe that's the best thing for keanu!! I burst into tears :-( How can he say something like that? I have been so heartsore these past few days. But it did me some good to hear those things from the dr. It made me realise that i really need to start helping myself be stronger physically and especially mentally and emotionally if i want to help Keanu. I'm not much good to him if i'm always depressed. It made me realise that being sad and depressed is not gonna make him improve either. So i have decided to make some changes in my life so that i can be a better mom to Keanu. Then together,we can conquer anything!!

To be continued.......

Continuence of My Anticipated Son
I just don't know what to do anymore. I feel lost. I want to help Keanu with the best possible treatment and care but you find most of that overseas only :-( A friend of mine, that i met when we were in China, emailed me today. She lives in Toronto,Canada. Her little boy, Thomas, has cerebal palsy. But wow he's amazing :-) Miss playing and talking to him. Anyway, she emailed me today after hearing how things are going this side lately and asked me why i don't consider moving to Canada where she is. I know there's alot more to offer Keanu there but i don't think i could do it.

I don't have the guts to do something so extreme especially as a single mom. Oh and the dr just happened to suggest the same thing to me today. Maybe God's trying to tell me something.....I've always been useless at reading signs.

I think i've poured my heart and mind out more than enough today so i will say goodbye. Thank you for checking in on us. Please keep praying for us. And hopefully i won't take so long for my next entry.

Take care and God Bless

Moaning and Crying :-(
Hi Everyone

I'm sorry it's been so long since i posted any news. We ended up spending a total of 8 days in hospital. By the time we left Keanu was eating but still not drinking properly. Well technically he's not drinking at all. The only way he seems to take in fluids is by dripping it into his mouth by either syringe or with a juice bottle. Dr says he's not getting NEARLY enough fluids for his age and we may have to consider putting a permanent tube into his tummy for fluids. I really don't want to do that :-( I made an appointment to see a speech therapist after we came out of hospital. She gave us a few pointers which i'm trying but seem to be failing with :-( The good news though is that with ALOT of patience and time-Keanu can SOMETIMES manage to drink from his bottle. But if he's had a bad day with seizures and is in and out of a daze then you can forget about it happening. Same goes for if he's in a grumpy mood. Then he will fight me,scream and stiffen himself until I stop. It is SO SO difficult and i feel like giving up. Sometimes I think i should just go ahead and put a tube. Make life easier for everyone caring for Keanu as well as so much easier for Keanu as he hates taking in fluids so much. But that's not the way to go :-( What kind of a mother would i be if i just gave up on trying to 'teach' my child something that is so vital to his health? I managed to take some time out this past weekend where we could just relax. I took Keanu swimming a few times in a nice warm pool :-) but unfortunately he didn't always enjoy it. For some reason Keanu was grumpy alot of time over the weekend and especially at night. He's STILL grumpy at night now. I don't know why though which is really frustrating. He continuously moans and cries for well on an hour if not more. I try holding him. I try different positions in his bed. I try him in my bed. But nothing helps. Then after an hour of Keanu crying, me tired, i end up getting angry and moaning at him. Which of course just upsets him even more. I don't get angry at him specifically, i get angry at the fact that my child can't tell me what's hurting him so i can help him.

I wish i knew what's bugging him.

On the weekend after a hectic night of Keanu crying and complaining i sat back and thought about the past year. Keanu's been in hospital a few times due to his seizures and dehydration. I'm scared. I'm scared of the fact that i feel he's in hospital alot lately. That's not a good thing :-( I'm scared. I'm scared of the future. I'm scared of what the future holds. And I'm scared of how long the future will last. It was all to overwhelming for me so i was in tears after Keanu had gone to sleep.

But i'm not giving up so easily. I'm going to do my utmost best to help my child be the best he can be. My next step is taking Keanu to the Family Hope Centre in Philadelphia,USA next year. They offer a Special Needs Seminar as well as a special appointment to design a treatment plan for each child. Specially designed for that child. The treatment programme is designed by a group of doctors,therapist,specialists etc. I would really like to bring some of these things to South Africa so that we can help other children especially for the families who can't afford proper therapy for their child. It really is a shame that our country does not care enough about special needs children.

I took Keanu to see a dentist yesterday. He's a very nice man which Dr C recommended. He checked Keanu's mouth for any problems. He says the grinding of his teeth is a normal thing. But he is a little concerned that the grinding is preventing his back teeth from coming out. He wants to see Keanu in January again to reassess the situation. Literally 5 minutes of talking to the man and it cost me R180. I think if you wanna make money now days - go into dentistry :-)

Besides all the drama we've had to go through since returning from China Keanu is doing well when it comes to his head and trunk control and his balance in sitting. He's really doing well - as long as there's no seizures.

I miss the friends i made while i was there. We keep in contact via email. I know another family who are there at the moment. Their child cannot see so please keep him in your prayers. I have another two friends who will be going over to China in the new year taking their children for treatment. We all want our miracle. Please pray for all our little angels.

I'm afraid it's been a long day for me so i think i better get some sleep while i can. Thank you all for checking in on us. Take care and God Bless.

Bad Night at the Hospital
Goodmorning everyone

Day 7 and we're still sitting in hospital :( We've been battling to encourage Keanu to eat or drink on his own (instead of tube feeding him).The past two days were a bit of a disaster.Then last nite i thought we were actually making some progress because he ate half a bowl of food with no problems.

I assumed everything was coming along fine and today we'd probably be going home.Now i'm not too sure.You see last nite around 9pm Keanu had one of his 'normal' seizures.This upset him,he began to cry and then started choking.He was trying to throw up but couldn't and started choking even more.I really got scared! After that i was worried about leaving him alone in his bed in case it happened again especially after i'd fallen asleep.Round 1am the nurses came to give him fluids down the tube.After they finished i was trying to get him to go back to sleep.He kept moaning and complaining.After about 10minutes of complaining he began choking again.Again trying to throw up and battling to take in air.If he did manage to throw up it was phlegm. Where from i do not know because the physio has been coming everyday doing chest physio on him and says he's fine.

After all the drama Keanu managed to sleep the rest of the nite.5am this morning the nurse came to put fluid in his tube again.All was going well till she was just about finished when he started choking again.Same as before but he really freaked out today because you could see that the fact that he couldn't breath really scared him.It scared me too :(

Keanu is now laying in my arms peacefully sleeping.He did have one small seizure a few minutes ago though. Now he's comfortable and relaxed in my arms. I'm not sure what the dr is going to say though.I don't know if we can go home.

Please just pray that my little angel gets better and i can take him home.

Take care and thank you for checking in on us

Still in Hospital
Hi Everyone

Day 4 and we're still here in the hospital. Dr found out that Keanu's electrolites were very high to due dehydration. That's what caused the terrible seizures :-( Keanu had a few more the following day after being admitted. Since then he gets 3 or so of his 'normal' seizures a day. Dr did blood tests this morning again to check how his electrolites are and his sugar levels. He's unfortunately still on the drip recieving fluids as well as naso gastric tube that's feeding him. They are still monitoring his heart rate and oxygen intake. Things are going smoothly. He's very exhausted though. He sleeps 24/7 - literally. I did try feed him this morning but he just got upset with me. This has definately taken it's toll on me :-( I'm tired.Worrying exhausts a person. But i guess i will never stop worrying about my little man. Sometimes i wish i had a little more support here in durban - things get overwhelming now and again and all you want to do is breakdown and cry.But if you don't have anyone there to hold you on days like that then you tend to just keep the hurt and pain to yourself.

I just got back from China and i already feel like i need a holiday. But if you know me-my holiday would include my son. I'd never want a holiday away from him.

Well hopefully we'll get to go home tomorrow.Please pray we do.I'm tired of hospitals.After a while u begin to feel as though you're suffocating.

Take care everyone and thank you for checking in on us.God Bless

Some Sad News :-(
Hi Everyone

Today has not been a good day.Lots of tears :-( First i found out that a friend of mine's child passed away. He was also a special needs child. No reason,she fed him,put him to sleep and when she went to check on him,he'd passed away :-( Why does life have to be so cruel sometimes.Such a beautiful,precious little boy.And his mom is the most amazing,kind hearted,loving mom ever.I just wish i could ease her pain but no matter what you say or do-that pain will stay forever.I am so grateful for my healthy little angel.Fair enough he has a brain injury and is disabled but he is a healthy happy little boy and i thank God for that.

Speaking of Keanu-that's where more tears came in.As you all know Keanu suffers daily with his seizures which is usually one jerk that stiffens his body for a couple of seconds then it's over.Today was not the case:-( Tonite Keanu had a full seizure where his whole body started shaking and jerking.It went on for a couple of minutes.It scared me to death.I just held him,cried and prayed to God to make it stop.He had a total of 3 all at once.I've never wanted these seizures to happen.It scares me.I feel so helpless and don't know what to do.What scares me more is what if it had happened in the middle of night when i'm asleep?He made no sound so i wouldn't have even known.The dr has just seen to Keanu.He says he has an ear infection which probably triggered the seizure.Now they want to take blood from him and put a drip on :-( Which means poking him till they find a vein.They are admitting Keanu so it's back in the hospital for us.And we'll probably be here for the weekend.Why do children have to suffer like this :-(

Well,we are up in the ward.While still in casualty waiting to come up,Keanu had another bad seizure.He's never had them like this before.It really scares me.

Some good news for you all.Keanu started physio today again for the first time since we returned from China.She is impressed with him.She says his head control,trunk control and strength and drooling have definately improved.And his physio is a 'no lies' kind of woman :-) She says it like it is.Thank you Lord for my boys improvement.I'm really grateful for that.

Please all say a prayer for my little man that these horrible seizures stop :-(

Goodnite everyone and God Bless