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Wednesday, June 30, 2004 2:07 PM CDT

Hi All,
Mum read me the guest book entries and it was fantastic to hear all the messages. Especially my new Aussie friends and my mum's Aunty Val - wow!

We were a little sad this week with the loss of Mattie Stepanik, but we remember his spirit and his motto of playing after every storm. I know how special all our moms are and we also pay tribute to Mattie's mum Jenni - may she weather this storm and find some time to play.

Well I have been having fun and had some adventures in my new buggy. I don't quite fit in Mum's "hippo" and end up getting my nose squished a bit, but it was great fun. I went to my Aunty Judy's house for Father's Day which was fantastic, and I hope to go to my Granny's Birthday Celebration on Sunday. SHHH don't tell anyone but she has got a year older! Granny Happy Birthday for tomorrow and I am practising "Happy Birthday to Granny".

I am a bit naughty as my speaking is coming along so well, but I just clam up when Agneta the Speach Therapist comes. I know how to sing Incy Wincy Spider and do the hand actions, I can also sind Ring a ring of rosies and love the Grand old Duke of York. Mum will have to tape me when I am not looking just to show Agneta that she is doing fantastic work.

We haven't made it to the zoo yet, as the weather has been so cold. They are talking about having some snow. I do hope so as I have never seen snow and I can look at it outside my window.

Today, I had a lovely time today with my brother, Nicholas. He was so sweet and just held my hand and was playing with me. He insisted that I wear his plastic watch. Mum was so excited that she tried to take a photo, but Nicholas did not want to sit still. Later on we sat on my bed together and Nicholas lent forward and gave me a big fat wet kiss. Mum was so happy she started crying. Something about warming her cockles???? Aren't mums strange.

I also had some great fun with Dad last night and he held me in his arms for absolute ages. It was so great to be close to him. Dad thinks I am getting stronger.

To all my friends and email buddies, I do hope you are doing well. I know Javad is not feeling so hot and had a very bad experience at the hospital, so mum and I are praying for him. We also haven't heard from Jack so I also hope is alright.

Keep well and stay strong. Remember Mattie's philosophy and play after every storm.

Love ya all.
Matthew

Friday, June 11, 2004 2:24 AM CDT

Hi All

Yay, Matthew's Shona Buggy arrived! Please look at the photo album and see how happy he looks! We wheeled him around the house and showed him our bedroom; our dining room and so on. We ended up in the bar and he visited there quite a while! (His dad's son!) It is fantastic to have him mobile and an active part of our lives. His nurse was going to try and take him to a coffee shop but was a bit nervous to do it on her own, so maybe just a walk around the block. It is freezing here, so we will have to wait for it to be a bit warmer before we go too far.

Wednesday we had a massive power failure and were without electricity for 3 hours. It was pretty nerve racking, but fortunately all our contingency plans worked and there were no problems. Thank goodness for generators and gas heaters!

Have fun and stay strong.

Tuesday, June 1, 2004 4:50 AM CDT

Hi All,

Finally and at long last, I am updating Matthew's site. So much has happened I don't know where to begin. Perhaps the most important news is that Matthew turned 3. Yay !!!!!

We had the most amazing weekend and Matthew's celebrations lasted 3 days. We had his nurses visit for his actual birthday on the Friday and he got to have a cake and candle. For his party we had a clown who did balloon animals and told jokes and sang songs and did magic. We got to sing Matthew's favourite song with his very own actions and all the kids loved singing If you're happy and you know it stick out your tongue!!

He was absolutely spoilt and loved every minute of his celebrations. He got 2 budgies called Saturday and Sunday. He got some computer software which he loves, he got lots of toys and books and videos, and a lovely fleecy blanket for winter. He also got a small hot water bottle which he cuddles up to when it is cold.

Matthew also learnt to sing Happy Birthday. He also got to spend an hour in the bath each day and he has got so good at shaking that ass. We also had a brilliant session with his speach therapist who is excited that he is doing so well.

Despite us pushing him, Matthew seems to be in good health at the moment. Our medical insurance has agreed an ex-gratia medicines amount so some stress has been alleviated.

Matthew also had an amazing adventure last weekend as he got to go to his cousin's 3rd birthday party in Johannesburg. He had a wonderful day. However, on the way back the car battery that runs the vent when we are in transit, ran out and the vent battery only lasts a half hour. The trip back takes about an hour and I flew doing 160 km an hour. All the batteries failed about 5 min from home and we bagged him. He slept through the whole crisis!

We are getting much better at taking him out and about. He sits outside on a pool lounger and it is quite comfortable. Hopefully his custom made wheelchair will arrive this week and we can take it for a test run.

Thanks for all your thoughts and wishes. The pictures are not current from his party but are still ones hopefully you haven't seen before. I will update when I get a handle on the technology and the time.

God Bless and Stay Strong

Friday, March 19, 2004 7:40 AM CST

Hi All,
I haven't updated Matt's page for a while. Things have been a bit hectic. As most of you know, Al and I lost the baby (zygote!)and it has been a bit rough. Also Al's gran died two days later. We have very special memories of her last Christmas as we took Matt to Johannesburg for Christmas and she was able to spend Christmas day with Matthew.

Matthew has recovered well from his bout in hospital. It seems we have a new bug that keeps infecting Matthew, but as usual we keep on fighting. Matthew got a new G-Tube (Mic-key), it works really well. We have stopped giving him other food (purity) and he only gets Pedisure and juice/tea. He is happy and comfortable.

We are still waiting to send him to see a Pulmonologist, but we are told that he is the best and is extremely busy, so we are waiting in anticipation.

Matthew's talking has improved and when awake he talks non stop. He had an OT session in his bath this morning. He didn't really enjoy it but bounced back soon afterwards. The ST was there and afterwards was able to feed Matt a chip. Hopefully he takes after his parents who absolutely love chips.

Last Friday we took Matthew to a coffee shop around the corner from our house. It is quite an effort as we have to pack all his equipment into the pram and the vent weighs 14kg and Matt weighs 18kgs. We were at the coffee shop for some time as it was starting to rain. Matthew absolutely loved it and wouldn't stop talking. We told him all the ladies in the shop went chatter chatter chatter (Wheels of the bus) and he kept on saying chatter chatter chatter. In the end we had to take Matthew home in the car because of the rain. He loved it so much that we went round the block twice and when we got home, we wheeled him around the garden. He really is doing well.

We are desparately trying to teach him Kangaroo as we are having some visitors from Austrailia soon - but he just says Kangaaaaaaaaa.

I haven't updated the pictures yet, I will try on the weekend.

Keep well and God Bless.

Stay strong
Janice, Alistair, Matthew and Nicholas

Monday, March 1, 2004 2:38 AM CST

Hi All,

It has been a while since I updated Matt's page, but lots has happened.

Matthew continues to do fantastically. He is a real parrot and repeats everything that is said. We have to be so carefull around him as you never know what will come out of his mouth next. His day nurse will tell the alarms on the vent and pulse oxy to "shut-up". Now when they alarm, Matthew says "shut-up". Not the best thing to teach your child, but we are just so overjoyed at his ability to interact, that we just laugh. Matthew's favourite word is "daarsy" which is Afrikaans slang for "there you are". Everytime he does something cute or throws something for us to pick up, he says "daarsy". The other day Matthew was sleeping so sound that in his sleep he said "daarsy"! I wonder what he was dreaming.

Matthew's OT and ST are also progressing well. They are both so impressed with his progress. His ST says that Matthew's ability to communicate has so improved and has resulted in a step change in his development. He now correctly identifies objects and responds to questions. She used to ask him, "What is this?" and he used to reply "what is this?" Now he responds correctly, unless he is making a joke or is bored.

His OT is also amazed at his progress. We were in the process of looking for a new one, as we were not convinced of her committment to Matthew. However, she has been now every week and cant get over how well he is doing. She is teaching him to bath himself, and he just loves splashing the water all over the place.

Alistair and I have been concerned with the long term treatment of Matthew, and in this regard, have attempted to contact a pulomologist. He in turn contacted Matthew's doctor and as a result, Matthew is being admitted to Sandton (Johannesburg) for a series of tests. He will be seeing the pulomologist, a neurologist and an orthopedic specialist. He will be in hospital for 2 days, but we are really excited and hope that we will come away with a plan of action.

Alistair and I did not have any nursing yesterday (Sunday) and we moved Matthew to the lounge and spend the day with family and visitors, watching DVD's and reading the Sunday newspapers. We so enjoyed the day and Matthew did fantastically. He was so exhausted he fell asleep at 17h30 and slept through to 06h00 this morning. I know how he feels as I was totally exhausted too. I don't know how you other moms do it 24/7.

That's all our news for now. I will update next Sunday. Sorry no new pictures, but will post next week.

God Bless and strength to you all.

Janice, Alistair, Matthew and Nicholas

Monday, February 16, 2004 0:50 AM CST

Hi All,
Matthew has had an excellent week in terms of speaking and interaction. We have a whole new range of words and he has become a parrot repeating everything we say, even difficult words like elephant (although he pronounces it "halophant").
Yesterday was my birthday (the big 35)and Matthew practiced saying Happy Birthday Mommy. As Matthew still battles with the M sounds he ended up saying Happy Birthday Daddy!(see photos taken yesterday with balloons). Nicky (his brother) did his first "race" 200m and got a whole stack of helium baloons which he donated to his brother. Matthew had a wonderful time with them. Thank goodness he weighs so much or he might have floated away. Nicky also gave Matthew his T-shirt that says Ready-Steady-Go, another one of Matthew's favourite sayings.

We on the other hand have had a difficult week with Matthew's equipment and getting the nurses to take responsibility. Matthew is only able to lie on his left side, as soon as his position is changed, he desaturates. We believe there may be a problem with the trachae and its position. Getting the nurses to understand that his vent is actually an amazing piece of equipment that tells you everything you need to know, and not just to ignore the alarms is an ongoing battle. We still find that they would rather wake us up at 2 in the morning, rather than problem solve or read the vent manual.

That's all Matt's news for the last week. Thanks for taking time to read his journal. Please also continue to pray for the other boys, Connie's Benjamin is sick at the moment.

Love Alistair, Janice, Matthew and Nicky

Monday, January 26, 2004 0:43 AM CST

Hi All,

Matthew continued to improve all week and had an excellent weekend. Yesterday was the first time he was off the side stream of oxygen in months. Since Matthew's new trach we were having a very difficult time ventilating him. The vent kept defaulting to backup settings when his volume dropped. We were very stressed and so were his nurses. Last week Al and I were woken up constantly by the night shift as they were battling with Matthew's ventilation. On Saturday, Al read the vent manual and we completely reset Matthew's settings. Al gave a longer inspiration time and a lot more pressure. Al worked out that for Matthew's weight (17kg) he needed a volume of between 110 and 130 l/m. He was getting below 100 and the vent would default at 5 cycles of 40. Shows how bad the ventilation was! Matthew's improvement was fantastic and he was so much more comfortable. His pressures are 27/6 his rate is 25 bpm and is O2 is 33%. If he is able to maintain the volume we will slowly start to wean the pressure.

With regard to the speech trachea, Matthew started to make more sounds on Saturday, but was quiet on Sunday. He prefers to mouth the words. The speech therapist saw him on Thursday. She told us not to be dispondant as it was new to him and to us and it would take time.

Matthew's home schooling is going well and he loves it. He made alphabet pretzels and a crown as well as drawing a shadow of his hand. Unfortunately, his Granddad thought he had 6 fingers!

I have updated the photo album as well.

Thats all for this week. Stay strong!

Jan, Al, Matt and Nick

Monday, January 19, 2004 8:08 AM CST

Hey - it has taken me this long to create a home page for Matthew. So welcome. Matthew seems to be getting over his illness and his going from strength to strength. Had his first proper bath this weekend since 29 Dec. Absolutely loved it.

We also heard our first sounds from his speech trachae. Yay. He was roaring like a lion.

Keep well and stay strong

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