Night Soccer

Sorry about the blurriness of this shot, it was the best a hand held iPhone could do at night.   Actually it isn't that bad given the fact that it was dark!  Tonight, Levi decided that he wanted to start singing again at night which I am really happy about.  He says that his music teacher 'sings like birds singing'! Maybe he has a bit of a crush on her!  Regardless, it was a beautiful thing to say and we got to sing a fairly eclectic musical array before bed; Maxwell's Silver Hammer, Amazing Grace and Jingle Bells. 

It has been really cold and his asthma (for something completely different) is completely out of control for him.  He needs to use the Ventolin about every two to three hours.  I was talking with friends tonight and all those with asthmatic kids are out of control too.  It must have something to do with the wind coupled with the cold.

Stability

When I started the job here in Australia it involved travelling on Outreach trips four times a year for about a week at a time.  I knew at the time that I was going to have to set up some things to help Levi feel stable in his place in the world while I was gone.  He would stay upstairs, which fairly rigid rules and little flexibility.  I started by writing him notes.  Initially the notes were just his name and a love heart because he couldn't read at all.  As he got better at reading the notes got more complex and the vocabulary more complicated.  Still he loves the notes.  He has a secret stash of them all somewhere.  He won't let me throw them out.  That and the phone calls morning and night have made those trips work for both of us. 

Now it has gone full circle.  He is writing me notes.  He puts them all over the house on Post it notes.  I find them at different times and I love it so much.  I now have my secret stash of love notes.  I love that you can tell his age by the backward 's' and 'f'.  I love that he writes them to 'Sue' because he knows that Jo is also a 'Mum' and he doesn't want them to be confused. 

Asthma is still kicking Levi a bit at the moment.  He sleeping in the high guard asthma position.  He obviously needs more stability through his shoulder girdle to breathe at night at the moment.  He locks his arms back and can sleep that way.  I can help him a little with the ventolin but it is still reflected in his sleep posture.  He is not too sick but just reminding me that he hasn't yet grown out of this.  I hate him being sick even though he doesn't really even notice it.  He just keeps on going and is now pretty independent with the spacer.  He just walks past and takes a couple of puffs and keeps going. 



Actually it is hard to watch him sleep like this at this time of year.  As Frankie's birthday comes closer, I think about him more and more and am reminded of his sleep pattern watching Levi.  Frankie always needed help to breathe at night and always slept in a stabilizing position.  I know in my head that it isn't the same.  My brain tells me that Levi just has asthma.  Even though Frankie's first diagnosis was asthma, it never looked like this.  It was always worse.  It was always less responsive to medication.  It was different!  Oh my brain is really good at this.  It is my heart that must be convinced and that is a much harder task. 

Good and Bad

BeforeAfter

So here are the pictures of out the back door.  It looks so much better, I am very happy about it.  Last night it poured rain and it helped to clear off some of the blown out mould and leaves as well.  There is so much water in the ground, it raises the creek quickly these days. 

I am very happy that I didn't take us to 'Eggs' last night.  Levi went to bed at 6.30pm.  When I left at 7.30am he still wasn't awake.  I had Jo call me when he finally woke and it was 8.10.  That boy needed some catch up!  I have lost one fight though.  Last night I started him back on his asthma meds.  I was hoping that this would be the winter that he grew out of it.  I thought that because he needed it so little for our winter trip to USA, it would be over for him.  I was really wrong.  He coughed and coughed last night.  I would sit him up and give him the Ventolin and put him back down without waking him.  He is back at about 4 hourly Ventolin and tomorrow I will start the preventatives again.  Bummer!  I was hoping against hope.

The best thing about his being sick though, is he is really snugly!  He has been up once already tonight, not because he has been awake but because his cough is waking him up again.  Might be a long night again.  I think I'll go to bed!

Gateway

Today was the Gateway. The Gateway bridge number 2 was open to walkers, so part of our day involved walking over the bridge. Only part of the day. Levi's asthma is back with a vengeance, so he coughed himself awake at about 6am, but was snugly (I loved it) for a little while. He is back on Flixotide twice a day and is still needing Ventolin about 3 or 4 times a day but can still run around in between. He has a cold as well at the moment, which is running him a bit ragged as well.

So we got up and went to swimming at 7.30 and then turned around and had soccer at 9. Pam came and watched Levi play soccer which tickled him pink. He loves to show off his skills, esp now that he actually has skills and doesn't come off crying most games. Pam also joined us on the Gateway bridge walk. It's 1.9kms from one end to the other, making it a 3.8km walk all up, twice straight up a very steep bridge. We actually skipped across the fence at the top of the bridge, making it a half the walk. I think Levi's legs were wearing out and I didn't blame him. He had worked pretty hard and it was still morning.

Then Luke and Nate came over to play for a couple of hours. Poor little Natey, who turned 4 on Tuesday has asthma that mirrors Levi's. In fact they both seem to start and stop at about the same time. They all played on scooters until the cold drove us indoors and then they made paper planes.

It has been a busy day and although it helps to busy, Frankie is always still there on this day. It works short term to have lots of things to do and pack the schedule, but then I am alone at night again missing him. I can't believe it has been 7 years. Some days, esp May 16th, it feels like yesterday, but really it was today. Today, 7 years ago. Wow, this was supposed to get better. I am no longer incapacitated by this day, but it still rocks me back on my heels. I wonder if that is what they mean about it getting better. Maybe it is. I guess maybe my problem is that I don't really want it to get better. Because getting better, makes me feel like I am forgetting.