Hey everyone!!! Bailey has been ok we have been battling with bronchilitis (AGAIN) the last couple of days but i think we have passed the most dangerous days of it he was breathing pretty fast with it but me being the old pro I am could tell if he was getting into any major distress the dr told me to take him up to the hospital if he started breathing really really fast.
We had an OT appointment the other week and this time it was play gym. He did not like many of the things that she had there. He is now on whats called a sensory diet (No it's not a food diet like my husband thought:) It is when Bailey gets into that stage where he has absolutley no control over his emotions and not able to bring himself back down that i am to do these activities with him (did i mention he didn't like many of the things!!) These activities include pillow sandwhiches, Bouncing on a fit ball or trampoline, swinging in a hammock and singing and stuff. Bailey only liked one thing there and that was a saucer thing she had which he actually didn't like at first but when she put balls in it ( His new favourite toy) he was right.
It is hard to do these things with him because i am meant to do it before he has a meltdown because when he has one he is going to be harder to deal with then what he would be before but the thing is with Bailey there is not warnings before he has one its just instant so I'm trying my best but he is not liking the activities. He has also got his reflux back quite badly too and i wonder what this is from. His exzma ia absolutly horrendous and i can't get it under control i'm already using a steroid cream twice a day and a really intense moisterizer twice a day too but to no avail. It must really itch him especially on his back because when he has just a nappy on and you just rub his back he closes his eyes and nearly falls asleep even when he isnt tired. Poor little thing!
Thomas will be going to kindergarten next year and he will soon be having his pre-kinder sessions. They have changed how many days he will be going now and now he will be going 3 days a week instead of 2 (WOOHOO) Not that I will not miss him but it will be good to be able to focus all my attention on Bailey on those days and i will also be able to book appointments for then as well.
Ryan has been going ok speech therapy is working along nicely for him. He is still having trouble with some words and he doesn't sometimes get that s and h together are sh he just sounds them out as s he. He got into trouble the other day of my hubby for putting blu-tack in his hair ( I couldn't help but laugh a little bit lol)
Well I should go Bailey having a meltdown time for a sandwhich a pillow sandwhich that is !!!!
9/28/09
9/11/09
Fun Friday!!!
I have been a tad busy, which is why i have not posted recently. With all thoughts of not having a hospital stay this year Master Bailey decided that would not be the case. Last Friday he started to get sick really clingy ( more than usual anyway) and he was having temps in the 39.4 degrees celcius. I managed to get his temp down to 39 with panadol 38.6 by stripping him off and i was running out of ideas! So I got our local GP up and he couldn't find anything wrong with him but said to keep an eye on him. Saturday My poor baby was gasping for air when he was sleeping he actually woke himself up by being so loud. When he woke i noticed he was feeling a little bit hot so i took his temp which was 37.6 i thought oh thats not too bad but also thought that i probably should give him some panadol now cause he was due for it and i didnt want his temp sky rocketing again. After I gave him the panadol I was walking back into the lounge room when he had a febrile convulsion He went stiff started shaking and holding his neck in a weird position and just screaming and a look of absolute terror in his face! So I rang the after hours Drs and they said go straight to hospital. He had another seizure before we left and his temp was 38.7 he had 3 more seizures at the hospital.
When we got up to the hospital his temp was still 38.7 and although the Dr up there could not find anything wrong with him because of Baileys history and the fact that his temp was not going down that we should do a set of bloods on him. This is how zoned out Bailey was he cried for the first prick ( they had to do it 4 times cause they couldn't find a good vein) and fell asleep during the other 3 he didnt even make a sound. They wanted to keep him in overnight because of his temps and the fact he wasn't drinking much. So poor Sam woke up on fathers day with only half his family there! When we got up to the ward his temp was 39.6. I got very little sleep because you have to sleep in these recliner chairs and Bailey would not let me go! By the morning he had picked up a bit and was running around the ward saying ta ta to everyone. When the pedis came to check him over before going home they told me that his lymph glands were very enlarged and if they went red over them then he had to go back. They could see no reason for his temps and letharginess his CRP level came back a little higher then normal but nothing really bad so off home we went.
All day Sunday Baileys temp was in the 39.7 degrees. I just kept the fluids up to him and tried my best to comfort him. On Tuesday I noticed a strange rash near his nappy I asked my Health nurse who was doing Baileys weight ( a 200gram loss by the way) and she said it looked like staph infection. So got the Dr up and lo and behold it was. So he is on some antibiodics for that and some cortizone cream for his exzcma because thats where staph get in apparently. So the hydro pool was out for us today!
Last night was Thomas turn he was crying most of the night with an earache and i think (No I'm near betting on it) that he has an ear infection because he has had grommets in his ears if he gets a ear infection it should ooze out the fluid (gross i know) which it is doing so I have the Dr coming up today to check him out. Honestly i think the guy must make a fortune out of us.
Sm has been home all week he took the week off work and we took the boys to the movies to see UP it was great and they were cracking up laughing the whole movie. On the way home we somehow got onto the topics of future occupations and Ryan wants to be a tattoo artist I told him he can be whatever he wants to be (well as long as its not a drug dealer rapist,or criminal) as long as he is happy! Thomas wants to be a Chef BIG SURPRISE THERE ha ha he loves his food !
When we got up to the hospital his temp was still 38.7 and although the Dr up there could not find anything wrong with him because of Baileys history and the fact that his temp was not going down that we should do a set of bloods on him. This is how zoned out Bailey was he cried for the first prick ( they had to do it 4 times cause they couldn't find a good vein) and fell asleep during the other 3 he didnt even make a sound. They wanted to keep him in overnight because of his temps and the fact he wasn't drinking much. So poor Sam woke up on fathers day with only half his family there! When we got up to the ward his temp was 39.6. I got very little sleep because you have to sleep in these recliner chairs and Bailey would not let me go! By the morning he had picked up a bit and was running around the ward saying ta ta to everyone. When the pedis came to check him over before going home they told me that his lymph glands were very enlarged and if they went red over them then he had to go back. They could see no reason for his temps and letharginess his CRP level came back a little higher then normal but nothing really bad so off home we went.
All day Sunday Baileys temp was in the 39.7 degrees. I just kept the fluids up to him and tried my best to comfort him. On Tuesday I noticed a strange rash near his nappy I asked my Health nurse who was doing Baileys weight ( a 200gram loss by the way) and she said it looked like staph infection. So got the Dr up and lo and behold it was. So he is on some antibiodics for that and some cortizone cream for his exzcma because thats where staph get in apparently. So the hydro pool was out for us today!
Last night was Thomas turn he was crying most of the night with an earache and i think (No I'm near betting on it) that he has an ear infection because he has had grommets in his ears if he gets a ear infection it should ooze out the fluid (gross i know) which it is doing so I have the Dr coming up today to check him out. Honestly i think the guy must make a fortune out of us.
Sm has been home all week he took the week off work and we took the boys to the movies to see UP it was great and they were cracking up laughing the whole movie. On the way home we somehow got onto the topics of future occupations and Ryan wants to be a tattoo artist I told him he can be whatever he wants to be (well as long as its not a drug dealer rapist,or criminal) as long as he is happy! Thomas wants to be a Chef BIG SURPRISE THERE ha ha he loves his food !
9/2/09
Update!!!!
Hey everyone sorry it's been awhile I've been super busy last week there wasn't a day without something on it so. Monday was Ryan's Birthday so i was busy cooking two cakes for him-one to take to school the other for home. Tuesday we had the health nurse up to see Bailey for his weights and growth. Wednesday we had a 12 month corrected followup at the hospital NICU. Thursday we had Early Learning down then Friday we had Physio and Hydro-therapy.
Bailey is doing ok. On Tuesday he was weighed and measured and he put on 500grams in 3 weeks so i was very happy with that as he hasnt been putting on much if any lately so he is now 10 kilos and 79.5cm tall and head circumference is 47.5cm.
Wednesday we went to the hospital and they had a few concerns there. He scored 0 in his fine motor skills like picking up string with a pincer grip he can't do that yet or throwing a ball(it takes all his balance just to stand up!). The Physio there said he had a very very low attention span as he wasnt interested in what she was doing or wanted him to do. Also said his legs and ankles were floppy which could be whats causing him to fall and the catch he has in his left foot could also be contributing to it (Baileys regular Physio found this catch last time we seen her about 1 and a half weeks ago). We then went into the Pedis office and had a chat to him he is thinking that we should see the developmental specialist sooner rather then later because it could be something nueroloigical or it could be just something orthapedic so we need to get it cleared up. He did however say that if Bailey has one of many things he could have that it would only be mild (i started to worry when he said that) So we are seeing the developmental specilist in october.
Thursday was with early learning we did some sensory things like with san and finger paint. Bailey absolutly hated the sand he would only touch it with the spoon after awhile he did put his hand in but pulled it out again nearly straight away. He wasn't too sure about the fingerpaint too.
On Friday we had Hydrop therapy and Bailey is still absolutley loving it. The OT said he is either going to be a diver or a swimmer as he has no fear whatsoever and goes under multiple times. I raised the concerns with her about his score of 0 in his fine motor test at the hospital and his low attention span. She said she doesn't know how he could have scored 0 because he can pick stuff up and other things so we will see about that. Also she said he does have a low attention span but when he is focused on something he will concentrate. Also the hospital said yesterday that he know now when something is too hard for him and he is just not doing it.
His speech is really good at the moment he can sign finished and we are working on more he can say heaps of words mum,da,nan,bub,pop,nishnish (for finished while his signing it :P),ta, ta ta,this .His tantrums or meltdowns are good on some days and worse on others. He freaked out at Ryan's cake we had family up and he just lost it with all the noise and clung to me and cried.
Thomas is doing well he is getting better at nice play and I'm trying my best to spend some quality time with him. He has been complaining about a sore leg the past couple of days so i will keep an eye on that anyway best be off as Bailey is crying mumumumum!!!!
Bailey is doing ok. On Tuesday he was weighed and measured and he put on 500grams in 3 weeks so i was very happy with that as he hasnt been putting on much if any lately so he is now 10 kilos and 79.5cm tall and head circumference is 47.5cm.
Wednesday we went to the hospital and they had a few concerns there. He scored 0 in his fine motor skills like picking up string with a pincer grip he can't do that yet or throwing a ball(it takes all his balance just to stand up!). The Physio there said he had a very very low attention span as he wasnt interested in what she was doing or wanted him to do. Also said his legs and ankles were floppy which could be whats causing him to fall and the catch he has in his left foot could also be contributing to it (Baileys regular Physio found this catch last time we seen her about 1 and a half weeks ago). We then went into the Pedis office and had a chat to him he is thinking that we should see the developmental specialist sooner rather then later because it could be something nueroloigical or it could be just something orthapedic so we need to get it cleared up. He did however say that if Bailey has one of many things he could have that it would only be mild (i started to worry when he said that) So we are seeing the developmental specilist in october.
Thursday was with early learning we did some sensory things like with san and finger paint. Bailey absolutly hated the sand he would only touch it with the spoon after awhile he did put his hand in but pulled it out again nearly straight away. He wasn't too sure about the fingerpaint too.
On Friday we had Hydrop therapy and Bailey is still absolutley loving it. The OT said he is either going to be a diver or a swimmer as he has no fear whatsoever and goes under multiple times. I raised the concerns with her about his score of 0 in his fine motor test at the hospital and his low attention span. She said she doesn't know how he could have scored 0 because he can pick stuff up and other things so we will see about that. Also she said he does have a low attention span but when he is focused on something he will concentrate. Also the hospital said yesterday that he know now when something is too hard for him and he is just not doing it.
His speech is really good at the moment he can sign finished and we are working on more he can say heaps of words mum,da,nan,bub,pop,nishnish (for finished while his signing it :P),ta, ta ta,this .His tantrums or meltdowns are good on some days and worse on others. He freaked out at Ryan's cake we had family up and he just lost it with all the noise and clung to me and cried.
Thomas is doing well he is getting better at nice play and I'm trying my best to spend some quality time with him. He has been complaining about a sore leg the past couple of days so i will keep an eye on that anyway best be off as Bailey is crying mumumumum!!!!
8/17/09
Maniac Monday!!!
Well after i type this post out i will be a maniac trying to cook enough cupcakes for the rspca cupcake day. The day is actually meant to be today but we are having it tomorrow because Ryan has an exchursion today. It was all ryans idea actually the money goes to feeding all the hurt injured and waiting for adoption dogs cats bunnys horses and want not. Ryan seen the ad on TV and asked if he could do it ( I know I know his a real sweetheart) so who was I to deny him we have organised it with his school to sell the cupcakes at their recess and the prep class will be doing it all.
Speaking of Ryan we have had a trip to our emergency department. On Saturday he was complaining about a sore hip he couldn't walk on it and was huddled over in pain. I rang the after hours dr and a nurse answered the phone first and i told her that this had happened a couple of times in the last year but it usually went away with panadol. I thought it was just growing pains! Now this nurse made me feel like a really bad mum with what she said to me she told me that it was stupid that i hadnt got it checked out and that it could be numerous things and that it was NOT growing pains and she was going to call the dr. So got off the phone and nearly burst into tears. Then dr rang and told me to go up to the hospital because it needed to be investigated so off we went they gave him some stronger panadol and soon he was walking on it again. It took them 6 hours to see him because he was a catergory 5 which is the lowest priority and when i finally seen the dr he said that it could be juvonille arthiritis so he is to have an xray this week and then we will see our local gp to discuss results and he will give us a referral to see the orthapedic people. Grrr if its not one thing its another.
Bailey is still loving his hydro-pool lessons he just wants to constantly be moving and he is now putting his head under (not face) which is a major improvement. We had early learning down and Kathy said to me that Baileys hamstrings were tight and he wasn't aware of his surroundings when he was walking he will just go straight over the top of something so i should speak to his PT and see her well i have an appointment this week before his hydro pool appointment.
Thomas is doing OK i've been a bit worried about him lately i feel like his always left out and doesnt get enough attention so ive been trying to give him a bit more. He loves reading books and doing jigsaws and when Kathy came down she brought him a jigsaw to play with he had them done in about 10 minutes hehehe !!!
Speaking of Ryan we have had a trip to our emergency department. On Saturday he was complaining about a sore hip he couldn't walk on it and was huddled over in pain. I rang the after hours dr and a nurse answered the phone first and i told her that this had happened a couple of times in the last year but it usually went away with panadol. I thought it was just growing pains! Now this nurse made me feel like a really bad mum with what she said to me she told me that it was stupid that i hadnt got it checked out and that it could be numerous things and that it was NOT growing pains and she was going to call the dr. So got off the phone and nearly burst into tears. Then dr rang and told me to go up to the hospital because it needed to be investigated so off we went they gave him some stronger panadol and soon he was walking on it again. It took them 6 hours to see him because he was a catergory 5 which is the lowest priority and when i finally seen the dr he said that it could be juvonille arthiritis so he is to have an xray this week and then we will see our local gp to discuss results and he will give us a referral to see the orthapedic people. Grrr if its not one thing its another.
Bailey is still loving his hydro-pool lessons he just wants to constantly be moving and he is now putting his head under (not face) which is a major improvement. We had early learning down and Kathy said to me that Baileys hamstrings were tight and he wasn't aware of his surroundings when he was walking he will just go straight over the top of something so i should speak to his PT and see her well i have an appointment this week before his hydro pool appointment.
Thomas is doing OK i've been a bit worried about him lately i feel like his always left out and doesnt get enough attention so ive been trying to give him a bit more. He loves reading books and doing jigsaws and when Kathy came down she brought him a jigsaw to play with he had them done in about 10 minutes hehehe !!!
8/11/09
Life and Death!
Sorry i haven't blogged for awhile on sunday night at 10:20pm My Uncle passed away. He had extensive brain damage and wasn't breathing by himself so his wife decided to take him off the ventilator it must of been a hard decision and my thoughts and love are with her and my cousin.
Bailey loved his lesson in the hydro pool I mean loved it the OT said he was actually less sensitive in the water then what he was out of it so that was great he was trying to swim all the time and proceeded to swallow large amounts of water as a result :P. He wasn't too keen when they put the bubbles in though he didnt want a bar of them and he didnt want his head to go into the water either but i knew he would do that its a matter of easing him into it. He has began not to sleep again he is awake most of the night and i dont know why! But I've got him here and thats all that matters my uncles death has shown just how much you should cherish each and every moment with the people that you love because you never know when that last moment will be. I have written a poem for him to read oput at his funeral (or try anyway).
Bailey loved his lesson in the hydro pool I mean loved it the OT said he was actually less sensitive in the water then what he was out of it so that was great he was trying to swim all the time and proceeded to swallow large amounts of water as a result :P. He wasn't too keen when they put the bubbles in though he didnt want a bar of them and he didnt want his head to go into the water either but i knew he would do that its a matter of easing him into it. He has began not to sleep again he is awake most of the night and i dont know why! But I've got him here and thats all that matters my uncles death has shown just how much you should cherish each and every moment with the people that you love because you never know when that last moment will be. I have written a poem for him to read oput at his funeral (or try anyway).
5 minutes
You were such a happy man,
who did all the right things in life,
i know that you will always be watching,
over your beautiful daughter and wife.
Sometimes life just isn't fair,
Just how much no one can ever guess,
But to everyone you were great,
God only takes the best.
If only i had 5 minutes,
The night you passed away,
I'd give you one last kiss,
and tell you it will be ok.
But you were gone so quickly,
one last breath you'd take,
before you even knew it,
you were standing at heavens gate.
Now God has called upon you,
it's time to get your wings,
to leave this life behind you,
and enjoy all heavens beautiful things.
Everyone who has read it has cried so sorry if i made a tear well up in your eyes. I will leave with a comment made by Ryan that may make you laugh instead. this morning he was watching discovery home and health and there was a programme on it about parenting for dummies that was on and it said about comforting your child when they cry or something like that. Ryan pipes up and says but mummy you are always cuddleing Bailey and he never stops crying :P Out of the mouths of babes :)
8/4/09
Yet another weight loss!!!
The above picture was taken this morning i ask any of you out there who have seen sitting of this sort what it is wether it is associated with low tone or what??? Bailey had an appointment with the health nurse today he weighed 9.52kg a 20 gram loss in 3 weeks!!1 He grew 2cm at long last so he is now 79cm and his head circumference is 47.5cm ( a lot smaller then my other two boys who were around 50cm at about 6 months of age :P) I don't know why he hasn't put on any weight he eats sooooo much it isnt funny!! he has however cut out to two bottles a day on an odd occassion he will have 3 but its genrally 2 and those are only 180ml bottles!!!! He won't drink anything else and he cant suck out of a sippy cup! Any ideas ANYOne i would appreciate them. We have Early learning coming on Thursday as well as having AUSTAR installed YAY. It's my birthday tomorrow but i'm not really in the mood to enjoy it my uncle is in hospital at the moment in an induced coma and on a ventilator. He is a mechanic and he was servicing a cherry picker when he knocked his head and accidently knocked the buttons on the cherry picker which crushed his head. He has no brain swelling at the moment but these things can show up hours later. Please pray for him!!! Hydro therapy also starts on Friday and Hubby is coming to watch so that should be fun!!!
7/31/09
Bailey-update!!!
Hey everyone well i Know Amie reads my blog so hello Amie xxx :) Bailey is doing heaps better although had the dr up yesterday cause he wanted to check him our again and he said he could now hear a few souns on his right lung so I have to keep an eye on that!!! I am now sick bur i can deal with it lol Ryan is the only one who managed to steer clear of this illness lucky thing. Thomas is being so naughty lately i don't know what to do with him I have given him timeouts in his room taken toys off him nothing phases him. Bailey is having more and more of these "tantrums" which he can not control himself in and its really stressing me out i can't wait till he finds new ways of dealing with it. The other day was a particulary day when i felt like i was about to meltdown it took Bailey after one of his meltdowns 3 hours to get back to himself!!! It wasn't nice especially since that was the same day Thomas had been really naughty as well. I will leave you here with a few pics of Bailey on the day he was his worst and on the next 2 days after
Can you guess which is which????
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