Night Wakenings

Levi is getting better. He is still waking at night in pain for some unknown reason. When you ask him at night, there is very little that he can give me. He says he hurts everywhere and after a little while he settles down and goes back to sleep. It is almost like a night terror but it manifests as a pain type response. He answers questions but he just cries and cries. I wish that I knew what was going on. At least during the day he is showing more energy and I haven't been called to school. I just wish it would all look much more like something obvious that I had seen before.

Last weekend we made a video to win a truck. It is impossible to upload the whole thing here but it is on the "Most Powerful Tradie" website. It was never really about winning a truck but another fun thing for work people to do together. I have no idea what to do if we actually win the truck, because it would have to be divided up. Maybe we could win a runner up prize that is a little more divisible. Really though I think our chances of winning are about zero!

Fun Day

Riding the Quad

On the Scooter: Look, one foot, no eyes!
Look, No Teeth!


Man Pain, Limping back to the car

We had a fun day today. The team from work came over to have lunch and do the big videotaping. We are doing a taping of the "Most Powerful Tradie" so that we can win a new truck. Actually our chances of winning are pretty low but it is a great way to get the team together and have some fun.

Then we went to the netball courts to practice my roller blading and for Levi to practice his bike riding. We went with Cheryl and Pete and the kids. They are learning to roller blade as well but I think they have a distinct advantage as they spent a lot of time roller skating in the past. Levi still prefers the scooter to the bike but I have stopped pressing him to ride. At the end, when we were all getting a little tired, Levi fell off his scooter. There was no blood and it was a very slow motion fall, but in a supreme demonstration of 'Man Pain', he then limped to the car. None of the adults paid much attention but Levi kept it up until he got to the car! Stubborn that kid.

Australia Zoo

Levi teaching the kangaroos how to chew

Jumping


Levi climbing trees

Levi and Zac feeding kangaroos

Levi posing in the croc's mouth

Feeding time!

All the boys jumping

Here are some of the photos from Australia zoo today. These pictures are certainly worth all the words, but suffice to say, a good time was had by all!

Weekend again

Well, it's a weekend again. It gets there really fast when you are really busy. I flew to Cairns on Monday and it was the start of a busy week. That day I flew from Cairns to Weipa, to see a little boy there. I was supposed to see another kid who was coming in there from further out still. I do like that we can help these families that live in the far flung places of Queensland. It is hard work though! I got back to Cairns late that night. The rest of the week looked a bit like that as well. I call Levi morning and night and he loves to chat. He had a great week and had no trouble going to school and to after school care. I now had acquired whatever the illness is that everyone has around here.

Then I came home Thursday night and got to the airport. My car didn't start. I think the battery was getting old. Man, late night, long week and now the car was dead. I called the RACQ guys and they said it would take an hour, but seconds later I got a call. He was already on the 4th floor of the Long Term Parking and would be down in about a minute. That was a break and a half.

Levi went back to school on Friday and I had a super short day at work. By 2pm the school was calling saying that Levi was sick and needed to come home. I am not sure what is happening with him and school. He just wants to be home with his Mama! Now it would be great if there was a chance to be able to do just that, but I just can't. I wish that I could get to the bottom of why he doesn't want to be in school. I would love to know if he was really sick and needed to be home. I mean his blood tests showed that he is anemic but not by a lot. He was fine for the time he was with Jo, but suddenly he is not? I don't know! I wish I could just look inside his brain and work out what to do.

Nothing

Today we did absolutely nothing! We sat around, watched videos, played Legos, Playmobil and read books. Neither of us went further than about 30 feet from the couch. I drank lots of tea and coffee and Levi ate popcorn and fruit juice slushies. Basically we did nothing, but it was great. Levi is still sick and had an afternoon nap and went to bed at 7pm. I go to Cairns next week for Outreach so he will stay upstairs. I talked to Jo and she is just going to go and get him if he is too tired at school. I think it won't kill him or stunt his academic prowess in the future to lose a few hours in Prep.

Ruby's Birthday

Gladiator Boy
Roman Boy

Levi

Today we went to Ruby's birthday party. It was a party where you had to dress up like a fairy, princess, wizard or elf. Levi went as a Gladiator. Yes I know it wasn't on the list. I asked if he wanted to go as a wizard and he said that "No, he wanted to go as a soldier." He wanted to be the soldier that guarded the fairy princess. I found a great outfit on ebay that just involved a white tunic and a chest plate. They then called and said that the one we had bought was not through customs and could they send the deluxe version? So he got a much better outfit for pretty cheap.

Then about 1 pm, he said he wanted to go home. He slept from 1.30 to nearly 4pm and then went back to sleep at 7pm. He is still really tiring out during the day and isn't really coping with a whole lot of activity. It would be good to know what exactly he is fighting, but you know 2 - 3 working days for tests. Don't get me started. I hope it is some 7 - 10 day virus that he is taking his time over. It does make me quite nervous that I don't really know and don't really have anyone I can trust to ask. We would need results anyway. Well I am going to go snuggle with him, because I have to go on Outreach next week and I will really miss him.

Waiting, waiting, waiting for testing

Levi is still sick and I am still waiting around for the Australian Medical System. It seems really odd to me that we wait 2 - 3 working days for results in Australia that takes a couple of hours, tops, in USA. When I was in USA, I steadfastly defended the medical system in Australia. I assured people that I was sure that the care was the same. I was wrong. It all depends on how much money and insurance you have. The uninsured in USA are definitely worst off. Then there is the regular Australian and on top is the insured American. Over and over, I am now grateful that Frank was born and was sick and died in USA. I think that perhaps he would have been treated, and perhaps they would have made a diagnosis. I think that he would have perhaps lived as long, but I doubt it. He would perhaps have had the same amount of pain or the same number of bleeds. I would have chafed at a system that treats parents as extraneous extras. Frank would have had 5 other kids and their families in his room for every admission. The small amount of privacy that I had in Rogue Valley Medical Center would have been zero in the Royal Children's.

I don't think that Levi has anything scary. He is too tired and too white and too quiet, but he probably just has a virus. A long one (It has been about 2 and a half weeks). If I really look back at constant things like his swimming training, it has probably been as much as 4 weeks. Maybe he has Glandular Fever or some other long running but ultimately innocuous virus. I hope it is.

Still coughing, Still going

Levi continues to cough in the background as I type this. It is a little frustrating that I can't really trust the school to look after his asthma. On top of that I still feel a little off and I don't sleep very well while he coughs. There are just parts of brain that I can't switch off. It is a very unconscious part because it only really happens when I am sound asleep. There is a part of me that wakes instantly to his coughing beside me. It isn't the regular sort of waking to check and then resuming the sleep, there is instead a surge of adrenaline that takes a little while to purge from my system. It is then that I think of Frank and think of Levi. I lie there and pray for Levi's future. I pray in my way, thinking of the future that remains so bright for one little boy.

Tomorrow very early Jane flies out to Abu Dahbi. Blindly going into a future that I hope is bright for her too. I am nervous for her and have no way of alleviating that concern. Some of it is that she approaches everything differently than I do or would, perhaps even opposite. I don't disagree with the idea of travelling overseas to work, but I would have done extensive research into the country and it's customs. I would go into it knowing the culture and the food. Perhaps going in blindly is a better way to go. It just isn't my way. There is nothing I can do now anyway, so I am wishing her well and hoping for the best!

Perhaps Not ready for school

I had to go and get Levi from school this afternoon. He started to fade in the afternoon and his teacher called me about 15 minutes before the end of school. He has a fever again but it is low grade and I think it is still the tail end of this illness. I can still hear him coughing in the other room though so tomorrow might be a problem.

Soccer Breakup

Levi with his medal

Levi had an odd weekend, mostly because he was still pretty sick from asthma most of the weekend. We had a fairly busy weekend regardless. It was the last day of soccer, so all the kids got to walk on a dais and get a medal, which they were all quite pleased about, but not quite as happy as last year when they got a trophy with their own name on it.

They are an opinionated bunch these kids, all discussing the pros and cons of medals verses trophies. By Sunday afternoon, it was also obvious that I had caught Levi's cold. Now I am coughing and have a heavy chest as well.

And Again

Yes life hasn't changed that much around here. The fever is gone but now his asthma has gone nuts. Mostly because the wind is crazy at the moment. There is a nasty westerly wind at the moment, strong enough to break off one of the Macadamia trees at the base. It has wreaked havoc with the little man's lungs. He is cough, cough, coughing but still he is on the getting better slope of this (I hope). Now he isn't really cuddly at all because he gets hyped up on the Ventolin, but at least if I keep an eye on him we stay in control.

He had the day off school again today. I did too, obviously. I didn't really think he was too sick for school but I didn't trust that they would keep a close enough eye on him, and we can get out of control quickly on days like this. The better news is that this winter was better than last winter, so I hope that it won't be a problem in a few years

In Sickness

Levi on the couch

This morning was a hot one. Oh the weather was horrible and cold and windy enough to blow away the car, but inside Levi was hot!. He woke with a fever of about 102 and after that it just climbed and he got floppy and snuggly the way that kids do when they feel bad. The first inkling that he was sick was first thing in the morning. He came out and I asked if he needed to go to the toilet and he gave me a surprised look, clapped a hand over his mouth and said;

"No, I think I'm going to hurl!"

Things went downhill from there. I called my work and his school and after school care all to cancel our days and then we just snuggled on the couch watching DVDs. Really we did get up once and go out to get Ruby's birthday present but that didn't go well. He wanted to go out, but I had to carry him all the time. He complained of being dizzy and not able to walk, but I think he just had the shivers. Maybe we managed to infect the whole of Brookside Shopping Centre, but who knows!

I don't really like fevers. I do OK with kids throwing up and I do OK with the other end as well. Fevers kind of freak me out. Coughing really freaks me out, but that is another problem. He was up to over 103 by this afternoon and is perhaps settling down a little now. It must be one of those 24 hour things that you get when you are little, that seem to never last less than a week when you get them as adults. He lay most of the day on my chest with his finger in my belly button. Yes he still needs the button when he is sick, or tired.

So tonight he is sleeping soundly and his fever is coming down (I think). I am hoping that tomorrow will be different, but perhaps not so much different, that I have to go to work. It is quite nice to spend a wild windy day, snuggled inside on the couch, knowing that you don't really have to go out if you don't want to. If only Levi didn't have to feel sick to make it a reality!

Show Day

Today was a day off. It was great! Levi and I actually both woke late. It was a miracle! It is Show Day here today and so Levi has only three days at school this week, as he also got Monday off.

Now it rained here all night, so there is always some risk in that. The creek can go over the causeway and trap us in, so today's schedule was always very flexible. We got 92mm of rain last night on top of the 6mm we got the day before. The creek did go over but you could still wade through and with the 4WD it was very safe.

Levi and I went to Go Wild. It was still nasty and rainy so there were few other options and that was reflected in the number of kids there. Ruby and her Mum and Hugo, her baby brother all came to play. Well basically Georgie and I played with Hugo while Levi and Ruby ran wild in the huge play structure. They had so much fun, it is always a pleasure to watch. Hugo is at a great stage and is a Speech Therapist's dream. He is at that beautiful stage of learning to talk, where he has long conversations in some random language, all in response to really any attention.

We are trying to lots with Ruby and her family at the moment as they are all going to go on tour with Ian for his last tour. They will just go down for the concerts and come back to Samford in between. Georgie has offered to take Levi with Ruby to one of the last Powderfinger concerts in Brisbane. She has some great headphones to protect their ears and they would both come home at 9ish somewhere in the middle of the show when they got too tired. I would have Hugo for the concert at home quietly. I think it would be really fun for Levi to do, but I am not sure how well he will cope with that much sensory input all at once. Ruby will be used to it by then, but it will be all new for Levi. We shall see. Of course in the meantime, my job will be to try to have him listen to at least some Powderfinger before he goes, so the songs are not completely new. It is hard enough for me to listen to music and I tend to hear a lot because I am driving all day. When Levi comes home from school, we make dinner and do bed things and it doesn't really lend itself to listening to music. Maybe I'll recruit some nieces to teach him the songs. He would have an experience that his cousins would love, but he may not even really understand what he is being given.

Blessings

Levi lighting his candle

Levi planting his corn seed, with help from two more generations

Scarecrows, 'Clancy' checking out 'Pink Betty'

Ann helping Levi and Dante to feed the fish.

This Sunday was incredibly busy, but busy fun. We had a very quiet Saturday that Levi and I both needed because neither of us started to get stir crazy in our tiny house. We were very relaxed and did very little. Sunday made up for it all.

It started at 7am when we left for Levi's swimming lesson. It wasn't one of his best because his regular teacher wasn't there and all the kids work less in that circumstance. By the time we got home all we could do was to change clothes and get back in the car for soccer. After soccer we drove home, changed the laundry over and then went to Ann and Chris' Blessing of the Cornfield.

The photos are from that. They had a great day of feasting and scarecrow making in the oldest traditions. There were two other kids besides Levi and he had fun running around like a mad thing basically getting under everyone's feet. They fed the fish and made scarecrows and climbed trees. Levi and Teresa (Ann's Mum) were on our team for scarecrow making. Levi took one look at the blue shirt we pulled out of the bag and wanted to "Make Don". Here is our creation:

It is heartwarming for me that Levi still remembers Don enough to associate him with a shirt and loves him enough still to want to make a scarecrow. Dad has been dead now more than two and a half years and yet he still remembers. We left early and picked up Levi's friend Ruby so they could play together. On the way to Sunday dinner at Jim and Jill's we dropped Ruby home.

Yes, It was as frenetic as it sounds. It will be an easy week though esp for Levi who has two days off school. I only get the Wednesday off, but I am not complaining!

The benefits of tantrums

Today I slept in until 8am. It was fantastic! Now if I had any technological ability I would link you back to this time last week.

http://http://lifeunderthehouse.blogspot.com/2010/07/today-levi-had-major-meltdown-on-waking.html

Look I worked it out! Anyway this morning at the crack of dawn Levi woke up. Then he wanted me to get up. I said, "No Honey, remember today is the only day that I can sleep in. I am staying bed and you can get up and play". He just said "OK Mum" in a happy little voice and went off. I went back to sleep. Peaceful, heavenly morning sleep. It was worth every minute of his last week's tantrum.

We had a great day today! Just home stuff. We had a slow morning and had lunch upstairs. I mowed and Levi played on his scooter on our driveway as I did it. He went up and got water for us both and was generally actually quite useful. He is really growing up and growing into a confident reliable little boy. It is fun to be able to trust him on the road and trust him to play by himself and rely on him to actually see a task through.

He also dressed up as a messenger and ran down to Jane's house to deliver a message. He had a hat and whistle and we gave him an envelope. Jane tipped him with some play money and he was very happy. Tomorrow we have the same frantic Sunday of swimming and soccer, but today we had a recoup day. It was a day of peace. May you all have plenty of those too!

What about more therapy?

Today I was asked again; "What about more therapy?"

It is always accompanied by a plea in a parent's eyes. So much behind the question that remains unspoken behind the words. Sometimes there is an extra edge behind them. I met this little boy and his mother today. They had lovely support, Grandma and Grandpa had moved close to help, but it is never enough to calm the guilt and the drive, the frustration and the futility. He is a beautiful little boy, with a diagnosis that required not one, not two and not even three hyphens but four. I think that had I been his mother I would have said "He has Vegemite Syndrome" or some other easy title. I think that if a diagnosis can't be pronounced by a parent without medical background, it should be renamed.

But I digress. He was beautiful. But he had that look that you recognise after a while. He didn't really look you in the eye, but would if helped. He was floppy but could still walk and climb. He didn't speak at all. Then there was Mum. She loves him so much. She talked of the 'therapy' time they spend each day and how she has trouble 'engaging' him now. She wanted more ideas, more interaction from him and more time. She wants him to be 'better' so badly, because she loves him and hates seeing him hurting. Then the big question "What about more therapy"

I see a child, a family, that just need to take the stress level down. I see a child that no amount of therapy is going to 'fix' and who loved to play with me, and who never knew that it was working him hard too. I see the tears in Mum's eyes as she asks about therapy. It is so hard to remind her that she is strong and that she has been the one that has been able to strengthen him. It is so hard to convince her that she is brave enough to continue. It is harder still to convince her to try to forgive herself. To not wake at night thinking about the things that she should have done that day, or the therapy she had missed. The internet talks so much about the window of treatment for early intervention and this Mum had assumed that at the 4th birthday the window slammed shut and from there on that was where it all ended. I almost spilled her tears by just assuring her that the window doesn't slam. I tell funny stories about learning things as an adult and the tears recede a little more. I hope that her stress level went with it.

I wish that I could find the pill that helped all the little kids out there. The kids with diagnoses longer than there own names and the ones without a diagnosis. I wish it was just about more therapy. I wish that I could stop the relentless decline in function and the tears in parents eyes. I just wish that it was as easy as the question about therapy. All I can do is love all those kids out there and hurt for their parents.

Too tired to think

Tonight I am too tired to think. I Can't believe that I am still up but I still need to take Levi to the toilet at about 10.30 so he gets through the night. It means that I am sitting here watching some stupid TV show just watching the time count down. Once I went to bed when I was this tired and set an alarm to wake up. I was just bleary and couldn't make my brain function. Then the next morning I felt horrible. So now I just stay up.

It has been a long week and it is only Wednesday. Next week I have Wednesday off so it should be a much better week.

Gen Y ??

I don't really understand the whole Gen Y thing. I know this probably marks me as a Old person and completely out of touch but maybe that is exactly what I am. I know that the statistics say that they will have more job changes in their first 10 years than we will have in a lifetime and other (to me) horrifying numbers. Is that really what is going to make then happy or have they been taught to be so entitled that they leave the instant that things don't go exactly their way.

Two weeks ago, one of the young physios that we had hired for year long positions resigned because there was a 'better' job at the hospital. There was no mention of the dollars that our agency had invested in teaching her, both through my time and with external courses. No thought about what it meant for us or our agency. It was just about what was best for the individual.

I think that we are just creating a generation of completely vulnerable people. In the past resilience was a given. If you fell over, you got up again. If you were unhappy, you found ways of finding happiness. If something bad happened, you got over it. If you signed a contract for a year you worked at it until the end. Now days if something bad happens, the whole school gets counselling. If you are not happy, it's someone else's fault. If something better comes along, you leave the job and there's no skin off your nose. I am sure that our parents worried about us because our morals didn't match theirs, but I worry because all of this changing jobs and being given everything they want doesn't seem to be making them happy. I hope my nieces and nephew can beat that. I have no idea how to help them achieve happiness in a world seeking happiness

Milestone!

Levi and Luke riding in the bowl at the skatepark. Levi is on his scooter!
Levi excited about riding his bike!

Levi riding his bike for the first time!

I have been slack about the blog because they have this odd system of internet here, that you don't pay for the speed of the internet, you pay by the number of megabytes that you use. So at the end of a long month, we were running out of megabytes and now it is the first! Well that and I changed the plan so we have more megabytes, but that started on the first as well.

Today Levi rode a bike for the first time! He has been close for a while but today really got the idea. I had promised him that when he showed any sort of interest in bike riding, I would get him a bike that fit him. So this afternoon, off we went and I bought him a bike. No, we didn't get the Ben 10 bike that was twice the price because it had a cartoon character on it. We just got a regular bike. It was fun to do and then we put it together. Mostly I put it together but he definitely helped. He was excited and wanted to go try it outside.

Now I should have known better. I had been getting Pete (Luke's Dad) to help teach him, because I am bad at that sort of thing. We went out and tried to ride here. The ground is uneven tile and there are sticks and rocks all over. I am not patient enough. I keep thinking that he will pick up this physical stuff really quickly. I forget that he is 9 months younger than all his friends and they haven't been riding their bikes for long either. Anyway I got cranky with him and he cried. We were both tired but the poor little tacker, his Mum should have known that he was that fragile. At night I told him I was sorry and that I would try to do better next time. I need to remember that he is Levi and not more and not less than that. He was very sweet and went to sleep happy, but I need to remember.

I think there is a huge difference between good teaching and good parenting. Perhaps I can hope for one of them, as I certainly don't have both! Of course I also need to just remember to just swallow my pride and let people tell me what to do without reacting. We shall see!!