What Can I say !!!!

Sorry for not writing for awhile been busy busy! Bailey started getting sick on Monday and was refluxing really bad and breathing way too fast so he wasn't giving me much time to get on the computer. Then on Monday night he got pretty bad he had chills and fevers was awake all night. At 4 in the morning I got up with him to change a nappy and clothes that he had wet through and noticed he was shivering I took his temp and it was 33.2 degrees Celsius Bailey has never been that low before! Then 10 minutes later it shot up to 38 degrees Celsius. He had an appointment with occupational therapy on that day so I thought I would still take him seeing as though he was lethargic and would let anyone do anything to him and this would be good because he is always fighting the lady at occupational therapy and she can't get anything done most of the time.

So we went up to the appointment. Now I don't have my license so I have to get people to take me up. I had full intentions of going to the hospital after my appointment, I live an hour away, and they agreed that Bailey was very docile and letting them do things. They were happy though because he was so floppy it showed that he does have the range in his left arm to get it above his head he just won't do it himself so no arm measurements today for a splint. She also said that Bailey is doing things a lot on his right side only. He rolls over on his right, is sitting supported with his right arm but not doing these thing with his left so I have to encourage that and she showed me some ways to do that. He also has low trunk tone on his left side and when she finally got him to roll onto his left side, after much persuasion, he didn't have very good control when he went back. Another thing is that he is still having his hands in fists a lot and I have noticed that when he has a toy in one hand he will have the other one in a fist she told me this is neurological. He also should be playing with one toy while reaching out with another, which he is not doing and also bring hands to mid line and playing with toys. He also cannot reach up with his left arm to get a toy that is high. She also answered my question about him falling a lot while crawling and said that he constantly rocks while crawling and that is because he is weaker on that left side. I have also noticed that he is running into things like he doesn't have the sense they are there. I mentioned this to her and she said that that has something to do with his balance so we will see anyway. It was actually quite funny at one point she was trying to get Bailey to reach out for a toy using his left arm and he just kept pivoting and reaching for it with his arm, after about the 10th time of doing this he chucked a tanty!

After the appointment I took Bailey to the hospital, luckily there weren't many people there. His resps were 64 when he got there and 37.8 degrees on panadol. When we got in I gave them a run down of what had been happening when they asked me to take his clothes off there was this HUGE rash in his groin area I said oh that's new he also had a couple of spots on his hand and legs. The paediatricians came down, all the peads know Bailey and were actually happy to see in in a way. They said they weren't sure what was wrong with him but his breathing had slowed down since he got there and he was sating at 94 his chest sound clear and they didn't know what the rash was from but they were happy that it did fade when pressed. I had to take a urine cup home to get some wee for the next days appointment(don't let me even get started on that!) So off i went also with some syringes because he was not eating properly.

The next day was MEANT to be Baileys EEG sedated so i was MEANT to be up at the hospital at 11;00am. My hubby could not get the day off so I organised for my sister in-law to take me up as she was going to uni. I also organised her to take me home at 3:00pm cause that is when she finished and Baileys EEG was at 1:00pm and he had to wake up a bit before he was allowed home. We had to leave at 9:00am cause my sister in-law had to be at Uni at 10 and i live an hour away. Well at about 9:45 am the hospital rang me and asked if I remembered that I had the appointment today I said that I did and i was on my way up. They said oh your going to be early and i said that I knew that and I was going to go do some window shopping till 11:00 . They said that was fine. We where just about to get in town at about 10:15 and they rang and said we are sorry your appointment has been cancelled the paediatric ward is too full!!!!!!!!!!!!!!! I was so pissed off , excuse the french, not only did i have only one bottle for Bailey because he was meant to fast from 10 i was now going to be stuck in town for 4 and a half hours! With only a front pouch. I was so upset, now I of all people can understand that the paediatric ward does get full of sick kids, we have been there ourselves many a time. What i don't get however is how they could ring me reminding me of my appointment and then ring up 30 minutes later cancelling it to top things off I had almost lost my voice from over exertion. So anyway we have another appointment next Wednesday for it and i think I will be complaining.

To end on a happy note Ryan got his school report and he is doing very well although he gets concerned if he makes a mistake(his father all over he is such a perfectionist lol) so i was quite happy about that. Thomas has his interview with the school on Friday so i am hoping he has his op before he goes to school next year. To top things off i feel 10 times better today and i am going to make a cake with my man Tommy as we call him bye for now xxx