MRI date!!

OOPS forgot to add we have an MRI date 3rd of November which is soon then we catch up with the developmental specialist on the 2nd of december to discuss results!

Obstructed bowels!

Well it happened 3 days ago Bailey did two realy hard stools then the next day he started having diahorrea then the next day after that the diahorrea continued and he started burping a lot and it smelt like faeces! It was disgusting but i thought he might of just had a gastro so let it go. During the night he vomited everywhere in the bed and it smelt really really bad. His diahorrea was really bad as well. I waited to morning and took him up to the hospital. Their diagnosis Bailey had an obstructed bowel and was very dehydrated not dehydrated enough to stay in hospital though. He actually picked up a bit while we were there. So we were sent home on strict orders to get his fluids up. About 2 hours after we got home Bailey did his "normal" bowel action. We have to see our peadiatritian about his bowels though because he has really had trouble with them since he was born.

Developmental Pead review and ...... Thomas's Birthday!!!

Hi everyone, well Bailey had his developmental pead review last Wednesday and my head is still reeling from it. He said that he is highly suspicious that he does have cerebral palsy but he won't say definate until he has an MRI scan!!! I'm so scared about this MRI Bailey has never been under a general anesthtic before and with all his problems in the past it's just putting me on edge. We are waititing for a date on the MRI so I'll tell you when we have one. Bailey has an ataxic gait he is very unsteady and he actually didn't know why he fell over more then what he does. His left wrist is tighter then his right but he could see no tightness or "catche" in his left foot on that day! He also doesn't want me to get his vision checked because him not looking and stuff may be associated with all this.

Happy Birthday My little man Tommy you turned a big 4 today-4 going on 8 :) I hope you had a great day. Well he was stoked with what we got him and was playing with puzzles all day. He got some money for his birthday so he wants to get some more puzzles with it. He had a Mickey Mouse Clubhouse cake which took me 3 hours to do but i was pretty happy with the results.

A Busy Couple of weeks!

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 !!!!

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 !

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!!!!

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 !!!

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).

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 :)

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!!!

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????

Sorry about the short post yesterday!!!

Well I'm absolutly exhausted i havent had any sleep for the last 3 nights and Bailey has me all day which might sound like it's a good thing resting the why does it take so much out of you anyway if anyone out there was praying for him yours and my prayers were answered today Baileys pnemonia is nearly completley gone =) He is on tami-flu and antibiodics the Dr said we have just caught it before the going to hospital stage so we are very lucky!!! Now Thomas has a chest infection!!!! I swear its never ending maybe i should go to uni and become a dr lol at least i would be able to treat my kids myself lol. When Bailey was first born and when he came home and was in and out of hospital(actually the whole of my pregnancy with Bailey) Sam( Hubby) used to joke we need to hire out a room up there. Speaking of sam he is a glazier 9fixes windows and doors and stuff) and today the poor thing is out in the pouring rain fixing a broken window next thing i know HE will have pnemonia!!!!!

A long hard day or week!!!!

Well i dont have much time to write this Bailey has pnemonia and possibly swine flu he is one sick little boy please pray he gets better ;(

The Good News and The Bad!!!!

I'm just going to say the bad news first so i can get it over with! Bailey had an appointment with Occupational Therapy today and he received a diagnosis of sorts he has sensory proccessing disorder which means he is overly sensitive to touch and has trouble regulating his emotions and can't bring himself back to that normal level which any other person child or infant can! The good news is that we can try and find ways in to help him deal with them better. We are starting with the hydro therapy pool every week for 6 weeks then depending on wether he tolerates it or not moving onto the Gym for another 6 weeks so i am going to be one busy mummy for awhile with all the lessons and early learning and Baileys checkups with peads and so forth i just feel like I'm neglecting the other kids a bit all this stuff with Bailey makes it hard to spend any time with Ryan for his speech therapy and just plain time for thomas to just read to him or cook. This has turned into a bit of a rant hasn't it I'm sorry just feeling a tad down! I went and brought Bailey some bathers because he doesnt have any being winter here and everything got some for myself as well and Ryan needed new shoes and both of the older boys needed slippers. I finally found some shoes for Bailey that had all of the requirements that the physio wanted they are called i-walk and they are great worth the $65 for sure!

PHOTOS

I thought this photo was just too cute
Tommy asleep on the couch i dont know if ive put this up so excuse if i have lol

Asthma, Speech therapy and Physio!!!

Ok ok the titile of this post the first two parts are to do with Ryan last one Bailey. Ryan was not very well this week on Tuesday he came home from school and he looked terrible! Then his temp started going up at one point it was 39.8 degrees! So i rang my GP who told me he would be up later that afternoon ( The guy does home visits gotta love him :)) After the phone call Ryan started having an asthma attack he started coughing to the point where he couldn't get a breath in then started vomiting! A 2.5mg nebule seemed to do a lot He was still coughing but nowhere near as much and he wasn't vomiting. GP came up and as soon as he seen him he said It looks like he has pnemonia I said oh crap! But when he checked his lungs they were clear andeverything else was fine he said he wanted to see him tomorrow because he looked so unwell and he was he was all floppy and hot and terrible. GP was hoping it was a virus. Well turns out my GP was right next day apart from coughing Ryan was nearly back to his normal self when the GP came in he said it was like looking at a different child and apparently the 3 kids over the road from us have the same thing today!

On to Ryan's speechtherapy he makes me sooo sad sometimes with the problems he has. He is learning ch and j words and he was doing ok i was trying to get him to say the words really pronouncing the ch and he came to stretching and he couldn't say it i felt sooo upset and then he started crying and said mummy i can't say it :( then i nearly cried what he muct go through at school because he can;'t be understood it near breaks my heart. Today he gets his school report so we will see how he is going!

Bailey's Physio appointment went alright BAILEY IS WALKING well his walking 5 steps at a time before falling over. She did have some concerns with his feet though he is scrunching his toes in and standing on tipytoes still and when she checked his feet she said he had low tone in his ankles and you know how ive been saying about his sitting low trunk tone so solution heaps of practising squatting because he just sits down to get something if he is standing. And hard soled shoes they have to be straight at the sole have good ankle support and no arch and they have to be in his tiny foot size 3 lol I tried several stores and couldnt find any all shoes that little are soft soled so having some trouble any suggestions would be great.

Thomas is being his normal boistourous self and he wants a cupcake maker for his birthday apparently. This cupcake maker is a girl gourmet thing so its generally for girls but what can i say the little guy loves to cook i swear he is going to be a chef when he is older!

To Hospital and Back!!!

Hi all sorry about the lack of blogging Bailey decided that he would like to have a little visit to the hospital. Wednesday he started coughing and i thought OH NO BRONCHILITIS but i also thought well his a big boy now so he should be able to handle it I was wrong!!! Thursday he started having a lil trouble breathing then i went to my other son Ryan's assembley and after that he was bad you could see a trichial tug and some good recession( arn't i an expert at all these names!!!) :P so I called an ambulance and they came and got him his sats where at 94 and his heart rate was 154!!! so they whipped some oxygen on him and he was a bit better and the whole way up he slept Bailey is a sticky-beak so this was really unusual! Got up to Hospital they said that he does have bronchilitis although his breathing had settled down and as long as he was getting 500ml of milk in he would be ok they also said that he is not to get the gastrp that is going around as he would probably end up in hospital because he is already not drinking much> Now lets pray he doesnt my dad has had it and so have two of my sisters :(

Look At me!!!

Mr clever Pants standing all by himself mind you i only just caught this photo before he fell :)

It is soooo cold in tassie. Brrrrr so cold in fact we are going through about $8 worth of power a day!!!!! We have all the heaters turned on im seriously thinking we should get some batts. Well we had another trip up to the hospital last night not for Baile this time but for none other then myself i felt really really sick yesterday had temps of 38.9 degrees and felt like i was going to vomit had a huge headache and was aching in my pelvis by the time hubby got home i couldnt get into the drs. In fact i could hardley get out of bed. So we went up and the said I have influenza and gave me a bag of fluids to rehydrate me because i was dehydrated. Now I just hope my other men don't get it. Feel a bit better today though.

Bailey took 6 steps tonight 6 very hard steps he was wobbling all over the place but he did it. I'm actually having real trouble with him eating non-food items like wood that he gets from goodness knows where!!! and bits of plastic I swear my house is clean!!!! But this kid can find anything and you know when his got something in his mouth because he won't open it. I'm just a bit afraid of him continuing to do this and eating something that will hurt him.

On a sadder note Ryan came home today and said that two of his classmates had been laughing at him because he couldn't speak properly :( it broke my heart the boy lil guy. I told him to tell the teacher if the do it again and that he shouldn't worry about what they say because he can speak fine he just needs a little bit of help which he is starting soon.But Honestley who could tease a face like this!!!

You may ask why i haven't got any photo's of Thomas well all the photos of him he is always naked or half nake :) and i don't think he will thank me if I have photos on the internet of him showing his parts when he is a teenager hehehe!

Sleeping like a baby (or not)!

Bailey who has been put in his toybox by his brother!!!
Smile!!!

This is how i found him one day when i had been blogging i came out to find him like this!

Well sorry for not blogging lately I just havent had the time. Bailey is getting such a handful what with that and Ryan going to schooleveryday and Thomas needing my full attention when Ryan is at school because his bored well you get the drift.

Bailey is doing pretty good! He has moved on to nuttelex, chicken, lamb and we have to start swede today! He also gained 130 grams in a fortnight thank god i was really worried about his weight gain! We have also started giving him his losec again apparently his throat is red raw and he doesnt have tonsilitis so the Dr can only assume it's from his reflux so bring on the 10mg losec. He has been putting his fingers down his throat when he is eating so i'm not quite sure if thats to do with his reflux i'm 90% sure actually.

Bailey development stands at this he has finally learnt how to clap hands but only when prompted (I have to hold his arms) He is still not waving goodbye. The hand tremors are back only when he is trying to feed himself and he drops his food a lot. He is crawling like a greyhound seriously I haven't seen a baby crawl as fast as he does but on the other hand he has started to drag the left leg a lot. He has also began sitting on his tailbone I'm not sure what that means. He can stand by himself(that's right folks) for 5 secs with a big goofy grin on his face and to my complete and utter surprise took 3 steps last night to his daddy!!! He has major problems with balance but his getting there and his trying which is what counts!

Sleeping is another issue. He is just not that into sleeping he has 1 day sleep lasting from anywhere between 1 hour and 2 hours and goes to bed at 8:30pmand wakes at anywhere between 4:00am and 5:00am. Lucky for me I have a great husband who every second day gets out with him so i can have a little bit of a sleep in. I will leave you with some recent pics of my baby boy!!!

A weight loss!!!

I was hoping that i wouldn't have to put up anything about a weight loss today in fact i actually thought Bailey had put weight on i was sure he would be 9.5 kilos at least! I was very very wrong. In the last fortnight Bailey has lost 100 grams so he now weighs 9.06 kilos and is 77.5cm tall i was devestated I have been working my heart out to get him to eat this last week and i thought he was doing great he was certainly eating a lot! Apparently not enough so i am waiting on a phone call from his dietitian to see what to do. I don't know what she will do because if i add extra calories to his bottle he just doesn't drink as much!!

Ryan went back to school today after having 3 weeks off! Talk about tiring all the older boys did all the holidays was fight so today is actually very quiet i miss him lol. He didn't look very happy at going back either and told me he had a headache. I didn't know if he was telling the truth or lying so i told him if it got worse id come and get him from school. He does have headaches Ryan and he near vomits with them and has to be in a dark room so i hope he is not getting one of those!

Blah Saturday!!!

Well i feel like crap. I have a sore throat and feel like I'm going to be sick! But the kids are all good at the moment which is a plus. It was not however the case on Tuesday, wedenesday and Thursday for Bailey. He was getting high temperatures and really sleepy i ended up getting the dr up for him on Thursday and he said that everything looked fine but he was going to send off a urine sample just to make sure because you don't just have high temps for nothing!

We went to OT on Tuesday as well it was pretty good all in all we discussed some of Bailey's sensitivitys and new ways in which to deal with them. I had a few concerns but wasn't sure if it was concerns that OT would have to deal with so I told her anyway when Bailey is pulling to stand his ankle looks like it is near bending backwards and when he moves his feet he is nearly always on tipytoes and also he has begun tol sit weird like on his tail bone its hard to explain. Also he has been having trouble eating finger foods he is always choking on them he doesn't chew he sucks. So the OT is going to talk to the PT and ST and see what they think I have an appointment with the PT next month anyway.

BAiley is completley back to his normal self the last two days however so I'm thinking that this may of just been a virus. He is still constipated but what's new there. Oh and he has two new little additions in his mouth- his two front teeth are finally coming through thats 4 teeth now hehehe!

Bailey's 1st Birthday Pics

Baileys "smiling"

and again but isnt it cute

Up close and personal!

Cool little dude!!!

Sorry they took so long but my computer is sooooo slow putting these up!!!Bailey has this really cut smile going on at the moment it all happened the night before his birthday whenever i would put the camera up to take a picture well u will see what i'm talking about lol.

Trying Tuesday!!!

Well not a real lot has happened since my last post. I went into a bit of a blogging rut and havent blogged for ages-sorry. It was my Hubbys birthday on Sunday and the boys helped me make a birthday cake for him and i cooked him a roast.

Bailey had an appointment today with both the health nurse and early Well didn't go too well with Baileys weight gain he only gain 80 grams in 2 weeks so not so good and he grew a cm so he is now 9.1kg and 77cm tall. Rang the dietitan because im getting concerned about his weight people are continually saying to me he is skinny. She also became concerned when she noticed for his corrected age he is in top line for height bottom for weight. I'm just having real trouble to get him to eat. With Bailey its either he eats alot of solids or drinks a lot of milk its either one or the other and it really frustrates me. The dietitian said he should be having at least a litre of fluid a day on top of his restricted diet at the moment. Bailey has 800ml at the most and thats on a good day when he hasn't eaten much on a bad day he will eat heaps but only drink like 400mls. To top things off his is still badley constipated and im out of things to try.

The peadiatrian i see doesnt want to give him large doses of parachoc all the tim in fact he said that the person who seen me in the emergency room was wrong to give him a 20ml dose Bailey should of only been have 5-10ml at the most. Poor littlwe guy is in soooo much pain when he passes a bowel motion and he wont touch any juice.

Early learning went ok Kathy is really lovely and she brought some stuff for the other two boys to play with and they sang songs and stuff. Bailey is becoming increasingly touchy with whoever touches his arms he immediantley becomes stiff so we will see where this goes next time i see OT.


On a more humorous note Ryan is all in to nameing things out at the moment being a typical 5 year old and he was trying to pronounce coke unfortunatley he got it wrong and said cock. I'm sorry but all i could do was laugh he thought i was going to go mad at him but he was only trying to sound out the word not purposley say it hehehe.

Diagnosis is.......

Well we haven't official received a diagnosis yet-thats the diagnosis! When I took Bailey to the specialist yesterday he said that he could have one of two things. 1 a underdeveloped nervous system or 2 mild cerebral palsy. He said we will not know for 6 months if the things he is having trouble with are still there then it's more then likely mild cp but if they aren't or if they arfe slowly improving then it's more then likely an undeveloped nervous system so I think we will just have to wait and see. I'm actually a little bit glad to have a diagnosis of some sorts and know that he may just get better that's what I've been wanting to hear for a long time. Seen the OT while I was there (she was in the interview) And she has been noticing Bailey is having a few sensory issues so she gave me this sensory profile to fill out and i see her again on the 9th of june.

We have finally moved onto pear and ground rice no longer just ground rice. Poor little Bailey was getting quite sick of the stuff and was looking at us while we were eating with those pupp dog eyes saying give me some mummy!!

Nervous with a capital N!!!!

Well todays the day i will know for sure wether Bailey has got cerebral palsy or not and i am so unbelievably nervous! I was up tossing and turning all night , not that it makes a difference in what we are already doing and how we treat Bailey it's just now we will have a definate answers as to why he does some of the things he does. I've written out a list of things to tell the specialist and i keep going over and over the list to see if there is anything i have forgotten or missed out. To be honest I don't know if i'm going to last the 5 and a half hours, but then again i've been waiting for this since November!

Tired and very nervous!!!

I have had a pretty blown out week as you know last week Bailey was vomiting. Well it did not stop till yesterday and I was seriously becoming worried about dehydration. It was very weird because it was more at the end of the day and it smelt so acidy! Actually i was quite unsure as to wether it was a gastro or his reflux coming back ten fold. Poor little guy vomited and vomited until he was retching up nothing. But he is better today after a stern word from mummy telling him she will be angry if he has to go into hospital for dehydration and miss out on his very important appointment tommorrow!

Which brings me onto my next topic D-day is nearly here tommorrow we will find out if the specialist thinks that Bailey definatley has cerebral palsy or not. If he says yes then we will go down the route of MRIs. I'm so nervous and just can't wait for it to be all over and done with.

We had a [pedi appointment on Thursday and i raised a few concerns I had with Bailey. he was very crackly at home on the chest and has a cold but his chest sounded clear. Also he had developed petachiae again on his neck and back. This keeps coming and going and may need to be further investigated. But great news his EEG came back showing nothing abnormal. He hasn't had a seizure for 3 weeks and even then it was only a 30 second one.

When I went to OT and PT planning meeting the other week I got a rundown of what they really thought and i think i share a bit with you well i have the paper in frount of me so i thought i would tell you from that.

Learning and Apllying Knowledge: Bailey has decreased attention skills for his age. He presents with increased tactile sensitivity within his upper limbs and can become easily agitated. This is improving slowly.

Communication: Bailey is verbalizing more often and Amy reports he has begun saying "mum" "dad" "Bub" and "Ah Ah"

Mobility:Bailey presents with generally age appropriate gross motor skills for his corrected age. He has recently begun crawling, however occasionally flexes his left arm, indicating a weakness on this side. Bailey was also having difficulty transitioning over his left side, however this has improved and he now transitions over both sides equally. In recent review it was noted that Bailey was crossing his legs in an extended position which may indicate some increased tone in his adductor muscles. However , now that he is crawling, Amy has noticed that his knees often move out to the side. This shows that any increased tone in his adductor muscles is not affecting his function and may be reducing. Bailey has recently began pulling to stand on occasion. He was noted to use his left leg during the planning meeting a good indication he is not favouring that side. In supported standing Bailey will occasionally rise up on either left or right toes, but often inverts his left foot. This positioning will need to be monitored to ensure he does not develop tightness in the left ankle and to ensure correct support is given if necessary.

Bailey has full passive range of movement within both upper limbs however experiences dynamic tone and tremor on effort. this currently impacts on his ability to accurately reach for toys against gravity and manipulate them with both hands at midline. He has developed voluntary Palmer grasp th both hands and is showing voluntary release skills transitioning objects between hands.

Self care: Bailey is fully dependent for most self care activities at this time including dressing bathing and toileting. Amy reports he has begun finger feeding using 2 hands and can hold his bottle to his mouth in mid line. Though some difficulty with bringing his bottle back to midline should he drop it to one side was reported.

Major life areas: Bailey attends ECIS on a regular basis. He is performing most play tasks at a 6-9 month age level which corresponds with his corrected age. Bailey actively seeks out toys and explores with them with both his hands and mouth. Bailey's play is primarily at a sensory level.

So that's it a big summary which should give you some reading we will find out tomorrow if all this means anything for the future of Bailey. I will keep you updated.

Saving Lives

Well we did have a pretty good weekend. Thomas was pain-free and Bailey just had a minor cold. Then last night it all started Bailey's chest hast started rattling and Thomas woke up in excruciating pain (poor lil Ryan his always so good and tries to help out). So the Dr will be coming up today to check both of them out. Thomas was doing fine with his pain before not even waking during the night to need any pain relief now he has woken up twice before it is due crying for it so I'm a little bit worried .

To top it off Bailey decided today was the day to get the gastro that is going around and vomiting his bottles and having diarrhoea. Blah I don't think we have just one week when one of us is not sick. My hubby used to say we should just rent out a room at the hospital hehe.

On a fresher note I don't think I have ever told you about my little hero Ryan. 2 weeks after bringing Bailey home I breastfed him and put him down to sleep to go and express to build my supply up. I forgot to turn on his apnea monitor ( which i have never done again). While I was expressing Ryan came out to me and said "Bailey is blue and has bubbles coming from his mouth" !!!!!! I thought SHIT and ran into the bedroom with one of my bra cup still down squirting milk everywhere and found Bailey blue, bubbles coming out of his mouth, limp and not breathing. I had no time to even think and thank god i went into that parent survival mode. I picked him up cleared his airway and started CPR on him after about the first set he took a big gulp of air in and started coughing I was by myself so I didn't have anyone to ring the ambulance so after i put him over my arm I rang the ambulance and at that point I started crying. I managed to tell the operator what happened and the ambulance got there 20 minutes late Bailey was still blue when they came but he was breathing nothing has scared me so much in my life it is a mothers worst fear to have to perform CPR on your child but there was not a moments hesitation I was purely on Adrenalin. I thank each and every day for all my Boys and I am sooo proud of Ryan for saving his little brothers life . I hate to know what would of happened if i had of got to him any later.

Well best be off Bailey has vomited AGAIN bye

Happy Birthday!!!!

Hey everyone Bailey had an absolute blast at his 1st birthday party and was spoilet rotten. He was very lucky that everybody knows that he does have some trouble with fine motor skills and brought him heaps of toys to help him with this and not toys that would be for his peers that he can't play with. He had a no 1 cake and just had a lick of the icing that was all cause of his allergies. Speaking of that he is sleep sooooo much better since of about 2 days ago he only wakes 4-5 times a day as oppossed to 10-20 (i kid u not).

Thomas operation went great no complications aside from a sore throat and sore ears but he is loving the icecream jelly and icypoles.

And finally to my little man Bailey.To my littlest man Bailey, it seems so long ago that I had you and yet it all seems so raw. You
courage and strength surprises me each and every day. You face your challanges each and every day with such determination and I am so extremly proud of just how far you have come.

Dietitian......

Well good news is I may of finally found why Bailey just will not sleep during the night. Bad news is that it could take months to know for sure. Bailey not sleeping could be a result of his allergy's or intolerance's he may be having quite bad tummy pains which is why he may be up all night not wanting to eat but cuddle. She also asked me what his bowels were like I told her that they are never soft they are either very hard or very runny and she told me that it was an irritable bowel!

Bailey had his appointment with the dietitian today once she got a run down of what a typical day was for Bailey she asked to have a look at his exzcma, which luckily enough was pretty bad today-don't get me wrong I don't want my little boy itchy but I also wanted to show them what it got like. Once she seen his exzcma she stated that it was the worse she had seen in awhile and that I should get some steroid cream off my paediatrician. I told her that it generally takes awhile to get into my paediatrician and she said oh OK and that was that no hint on what else i could do besides the steroid cream!!! Luckily I do have an appointment with my pedi on the 21st of this month. I did mention this to her and she told me to mention it to him then.'

Onto his diet Bailey is now solely reling on bottles with some ground rice 3 times a day. I was a bit disappointed because we were going so well with the foods and he was only having 4 bottles sometimes 5 a day. Now he has to have 5-6 bottles a day as well as this ground rice 3 times a day. She has basically taken him back to the real basic basics. She thinks he may be allergic to infant cereal as well so that's why we have taken the ground rice first. We will do this for a week if his exzcma does not flare up or if he does not have irritable bowel or trouble sleeping still we have to stop that and try and find other things.

Bailey has not been himself today very very clingy to me he is cutting his two eye teeth down the bottom and has a bit of a cold so we will see if this resolves itself or not. Hopefully it will. He is a little trouble maker and was trying to pull the dietitians tools out everywhere!!! With only Two days till Tommy's operation and Baileys birthday on Friday I may not have time to get back on here till Saturday so you will have to excuse me. We have a pre-op appointment tomorrow for Tommy.

Oh and guess what exciting news I have we are getting our little kitten on Saturday I can't wait!!!

Planning Meeting and May Ball!!!!

Hey all, in a bit of a rush today so it will only be a short post. Bailey had a planning meeting today with OT and PT to discuss where he is at, the concerns they have with him and where we need to go in the future.

Most of the concerns they had with him were as i expected to do with his fine motor skills. It goes a bit like this PT says "I'm really happy with were he is at" me "I am too he has come a long way in two months" her "The only concern I have with hi\m are his feet when he is standing he is on his tipytoes and we will have to watch that if it is the same in a couple of months we will put some splints on his ankles" me "Ummm ok" her "Now i want to discuss our new goal for Bailey. I want him to be pulling to stand in the next 3 months" me "ummmmm that might be hard" her "Why" me "cause he is already doing that"!!!! Yes thats right people my little man with less then a week to go till his birthday is pulling to his knees mostly but got up the other day to his feet!!!

OT was not as good i won't go into conversations because it will be very long but things that he isn't doing is opening his hands he is still putting them into fists which crawling is great for opening them up. He is still having tremors which I'm not really sure what they arfe going to do with that. He isn't putting his left arm above his head he can't do it. He is also having problems with balnce and just one that I thought was really funny lol he has a low attention span she told me that he doesn't have your attention for very long and is distracted easily! So we are to work on all those and see her monthly.

Ryan has what's called a "May Ball" tonight he is in prep and the grade 10's present the preps to the whole school and its about mothers day as well i won't bore you with all the details but i have a little suit for him and he is very excited about it!He also brought me home a little mothers day present which is so cute i told him to wait till mothers day to give it to me and he said no i want to give it to you now so it was a handmade bowl, some choccies and biscuits very sweet. Anyway i best be off Bailey with his new found standing antic hasn't learnt to gert himself back down yet and he is stuck and crying!!!

We Have A DATE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Thomas left Ryan Right a rare moment in this house no fighting:P

Sorry to emphasise the !!!!! on this title but I have been waiting sooooo unbelievably long for this! So get ready for it -the big news I mean- Thomas has finally got a date for his operation!!! I am soooo happy but a lil scared too. For those of you that don't know Thomas will be having his tonsils and adenoids out and he will also be having grommets put in his ears. Each thing will take about 15 minutes each. I'm going to be soooo nervous waiting. When Ryan had his surgery to put pins in his broken elbow-a playground accident- it only took 30 minutes and i was in a state of panic lol so I am not quite sure how i will do this time. We are going to be staying in overnight. Now for the even bigger news the surgery date is.......................13th May............ next week a can't believe it. I also can't believe however that of all the appointments Bailey has we managed to steer clear of any appointments he may have.





Now there is one lil thing I am also worried about. Thomas op is 13th May as you just read with the overnight stay thats the 14th May we should be coming home. That's if he wants to eat properly and stuff. Big delima is Baileys 1st birthday is on the 15th May so I'm really hoping he pulls through ok and can go home the next day.





Bailey is doing well apart from not sleeping well lol. He is crawling like a champ but still throwing his legs out especially his left-p.s if anyone knows anything about this behaviour let me know- he also is pulling himself up, but not to his legs on his knees. Now I don't know if this is a weakness related thing or if it's just him-again any advice would be great-. He is eating more and more each day he loves feeding himself and has a fighting match whenever someone else tries to feed him.

Biting off more than you can chew!!!!

Well yesterday was action packed Ryan ha been up the night before vomiting from his asthma and i had four people in our queen size bed needless to say that i did not get much sleep which is nothing new these days Bailey is still refusing to sleep of a night time.

I thought i would also give you an update on Baileys eating. He is eating great now well lets just say its a lot better then it was!! He will eat a whole banana if he is in the mood. He also loves finger foods. I still can't go anywhere near him with lumpy foods but we will work on that and he still heavily relies on his bottles as well. If i did not feed him at breakfast lunch and tea you wouldn't even think he was hungry.

Anyway yesterday Bailey decided to give me two big frights! I decided to give him a banana to eat by himself while i was watching of course and he decided that his mouth was big enough to fit half of it in! Well of course he started to choke and this resulted in me giving him sharp blows to his back to dislodge the banana. Then last night he had raw apple which he just loves chewing on mostly but he decided he would finally start using his two little pearly whites choked again and another blow on the back and it was out!

I have also noticed since yesterday that when Bailey is crawling he is throwing his left leg out weird so I will have to asked the OT and PT about that when i go there next.

Bailey got weighed on Tuesday he is now 8.7 kilos or19 pound 3 ounces and still 76cm long. It's amazing how much you can gain when you eat properly! Thomas also had his 3 and a half year check he weighed wait for it 19.5 kilos or 42 pounds and he was 99.5cm tall! I asked the nurse if I should be concerned about his weight and she said that I shouldn't he has got huge hands and he is just going to be a very big boy when he is older. She also said he is just stocky not fat. She was also quite impressed with his intelligence. They do this eye test from 3 metres looking into a mirror and they stand behind them and say look in the mirror and tell me where that letter is well Thomas was flying through them and then she got to the letter O and he said that's O and it's here! Letter T and that's there!!!! Well they are 2 letters in his name so lol.

Ryan really probably should have gone to school yesterday. OK OK he was sick the night before but he had perked up by morning and was fighting with Thomas so maybe I need to be a bit more strict with him. I asked him what he had for me for Mothers day and he said awwww it's a secret and smiled. I just had to laugh!

I was thinking about NICU last night and thinking about all the things Bailey had been through and where he is today I'm so proud of him and what he has achieved (I'm proud of all of my boys) and I cant believe in just two weeks he will be one at exactly 12:08am on 15th May.

EEG Day!!!!

So yesterday we finally got to have Bailey's sedated EEG. We got there at 11:00am and the nurses did their obs that I am so used to seeing. Then at 12:00pm , he was to have the EEG at 1:00pm they gave him his dose of sedatition medication after a struggle to actually get the medication down. Bailey was doing his impersionation of someone drowning! He was out like a light within 5 minutes!

They came and did the EEG at 1:15pm and I was sneakly trying to get the techinician to tell me if she saw anything abnormal she didnt let me know anything she said she didnt know but I saw her looking really closely at the computer a few times and also once when i was looking at the computer for 10 minutes all the lines went haywire and they had not been like that so we will see. n Now all I have to do is wait for the EEG results which i will hear about on the 21st May if everything is ok of course if it shows something it will be sooner.

To top the day off I came home to my other two beautiful boys who came running up to me and said we missed you mummy-awww it melted my heart.

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

Sickness and Constipation:)

Well we have all been sick the past 7 days. I took Bailey to hospital on Wednesday he has been constipated for 3 weeks and only doing little bowel movements which are rock hard and he was screaming in pain when he was doing them! I had tried everything i tried prune juice his usual lactrlose and infant suppositories nothing was working and i was tired of having a baby who was up most of the night! Well they put him on huge doses of stuff called para choc and hopefully he should be coming better he slowly is he has don e 2 soft poos since then so. They also want to see me again because Bailey is usually constipated and they want to check that nothing is going on there I got an appointment on that Friday but they rang me 5 minutes before i was about to leave to tel me that the person who was doing it was sick! We should be going sometime this week I'll keep you all updated. We have a pretty busy week this week.



On Friday the two older boys went up to my sisters house to play when they got back I noticed that Thomas was acting really tired and out of sorts. Now if you knew Thomas he is the complete opposite of that. Then he felt really hot so I took his temperature and lo and behold it was 39.1 degrees Celsius! I gave him some panadol and as we already had the Dr coming up to do all of our flu shots so i thought I'd ask him to have a look. Thomas has to have his adenoids out tonsils out and grommets put in whenever we get off the damn waiting list so it didn't surprise me when the Dr said he had another ear infection. Just me, hubby and Ryan ended up getting the flu shot Thomas and Bailey will get theirs another day.

Well Yesterday Thomas started getting red spots on his tongue which have today turned into red spots on his feet, hands and groin area. I will have to get the Dr up again tomorrow to have a look. He is much better today temperature wise. To top everything off i have got a really sore throat which as you probably all know i have to put up with cause I'm trying to look after everyone else so it's not getting any better.

I'm sick of sickness i hope it will end in our house very soon. Sorry about the rant was in one of those moods :)

More pics of Bailey in NICU!!!

Bailey 2 minutes old!!!!

My first visit to Bailey 2hrs after he was born.

Easter and Baileys progress!!!

Well Easter was great fun Bailey got his first taste of chocolate and the other two boys just looovvvveeeddd the Easter egg hunt and the big bunny feet that the Easter bunny left!!! The boys got more chocolate then they can probably handle and i fear we will be eating chocolate for the next month.

On Friday the !0th April we went to a park with all the boys and had some fish and chips. I bit the bullet and decided to give Bailey some chips, ends bitten off of course, he loved them!!! He is so much better with finger foods then me feeding him and he has gotten much better with eating too. Problem is he only likes certain foods, little fusspot, and refuses anything else! He loves mashed banana ands will quite happily eat a full banana. He also likes mashed veggies and will eat quite a lot of that as well. He doesn't however like apples, mango, blueberries or pumpkin.

On Thursday 9th April we had an appointment with my private pedi to discuss the EEG that didn't happen. He said to not worry about Bailey not eating very much because some babies refuse to eat until they are 12 months old. He also explained the sedated EEG to me and said he will be in the pediatric ward early in the morning and his appointment is at 1:00pm and he will be monitored and he can go home as soon as he wakes up he also said he would be getting a drip put in for the medicine to go through. He was very happy that Bailey was crawling even though he is still falling over to the left hand side quite a bit.

When i got home the hospital rang me to let me know i had an appointment on the 22nd April and i had to be in the pediatric ward at 11am when they would knock him out with ORAL medication now I'm just a little bit worried about this as Bailey is not very good with taking oral medication and i told the nurse this and she said that they had ways around that. If the oral stuff doesn't knock him out enough he will have a drip put in and heavier sedation. So fingers crossed that the minimal sedation will work. Bailey has already probably had more drips then me!!!

Oh and Bailey has just got his first two teeth finally lol!!! He is also sitting supporting himself with his arm(his right one) he is continually amazing me with his steely determination to do things. My parents have two steps in their house to get from one part of the house to the other and he was trying his utmost best to get up there while he can crawl he is nowhere near trying to pull himself up yet. While i was up at my parents house i made Baileys 1st birthday invitations now all i have to do is print them out!! He will be 1 in 4 weeks and it's amazing to see just how far he has come.

Photo's

Bailey's first breastfeed!!! I know don't you just love the pink blanket lol!!!

Bailey on CPAP

Bailey 1st blood transfusion

Good News...... Not So Good News!!!!

Well for once I'd like to start of with a positive so I'm going to start with the good news!!! Yesterday Bailey was weighed and he had put on 13o grams in a fortnight and he grew a cm he is now 8.5kilo and 76cm long. He has also surprised me by starting to crawl mind you he falls over an awful lot so don't know if it's to do with the weakness down his left side but it's a start and his steely determination has me bursting with pride.

Now for the bad news Bailey is sick well he has a fever and has lost his voice and did not sleep well last night. He hasn't eaten any solids at all for 3 days now. I had the dr up for him yesterday and he said first off that one of his tonsils was 3 times bigger then the other one! He then proceded to the couch looking very worried. I asked what it could be and he said well it could be the start of tonsilitis but its weird. Then he said I'll another look the second time he had a look he said oh no it's just slightly bigger and said that i had to keep an eye on wether he starte dto get fevers or not which i already knew. Sometimes i wonder if he changed his mind so that i would not worry so much :)

We have got another appointment today so i will tell anyone what happens on my next blog :-)

Sorry Sorry Sorry!!!

Sorry to anyone who has been reading this, If there is anyone lol, I have been so busy the last week and a half and haven't had time to get on to do another blog.

Last week was soooooo packed with apoointment after appointment. On Tuesday I had well Bailey had Physio and occupational therapy. He screamed the whole time he was there and was not cooperating at all. If they even so much as looked at him he would scream which made their job very very hard. I asked them if they thought he had cerebral palsy and they said that he does show some signs of it. They were quite happy with his gross motor skills. Not so much with fine he is still very stiff in his elbow and shoulder joint he does have the range there but he doesn't like moving it for some reason. The occupational therapist said that i had to go back in 3 weeks so she could do some arm measurements, Don't know what for???, and that she may even splint his arm next time. This whole time we were talking he was screaming and i mean screaming he litrally was sobbing. As soon as we got out in the car he stopped and went to sleep!!!


On Wednesday we had 2 appointments one with Early Learning and one with the NICU team which is a follow-up 8 month corrected appointment. Early Learning came to my house which was really good cause its starting to get really cold here. There was two women this time because the one who usually is the one who is in charge of the premmie playgroup is handing me or Bailey over to another one who is in charge of a playgroup that is for babys with disabilities or learning difficulties(whoa that last sentence confused me lol). It was really good actually they focused on the things he was doing rather then the things he wasn't which not many people do. He even got up on hands and knees and crawled 2 crawls!!!! Woo Hoo Bailey. They agree he does have the weakness on his left side . When they were trying to get him from lying to sitting he wasn't putting his left hand above his head like he is supposed to. They were great with Thomas as well the new Woman that i will be having was playing with him and he loved it lol. I have another appointment with her in two weeks.
The Nicu appointment was good as well they have the same concerns that my other private pead has that he is slightly stiffer on the left side then the right but that my private pead is doing everything right. Oh and they said something about going off his elecare im not sure why he isnt eating much still. He lost another 200grams in a week so it will be interesting to see what he weighs tomorrow at his health nurse check.


On Thursday he had hiss eeg appointment. Well lets just say it didn't go very well. They couldn't get a trace because Bailey was not having a bar of having all these wires on his head and he screamed and hyperextended and they couldn't do it. So now he has to have it done again sometime this month under sedation!!! Now I'm totally freaked out I just don't know if they will montier him, How they will give it to him because he can't take anything orally and what will happen if something else happens lol. I know i might sound paranoid but oh well. I also am meant to be seeing my private pead this week to discuss his eeg and how much medication to give him for his seizures but how are we going to do that if there are no eeg results. I figure i should go anyway because there are questions i want to ask him about the sedation and seizures anyway.


Then on Friday we had Ryan's swimming carnival so off we went to that he did very well and came 2nd in one race. We also got his report card it had on it that he wrries if him makes a mistake i told his teacher that he is like this at home as well and i tell him if he tries his best that is all that matters.


I spent the weekend relaxing well as much as a mother of 3 can relax!!!

The Dummys guide to being a successful blogger!!!

To be perfectley honest with you iI would not have a clue lol. I am A complete newbie to blogging and i haven't even figured out how to follow other posts yet. I don't even know if anyone is reading this or if I'm just talking to myself!!!

Anyway I am absolutley worn out i have had 6 kids here today!!! Remember i only have 3 the other two were my 2 nieces and nephew. I can honestley say that if i wasn't sure about having any more children i definatley am now.

Bailey has been pretty miserable today so i don't know if he is getting teeth or sick or what. Problem is i never really do know. Every time he gets sick its so sudden we end up in hospital. I have noticed today that he is when I'm supporting him standing on his tipy-toes on his left side he hasn't been doing this before now so I don't know whats up with that. He has also been extra cuddley today which i love because he usually isnt like that.

Well we also had another day of bad eating he has eaten 438calories today with only tea and another bottle before bed so it will be interesting to see what they say next health check. Anyway better go crying baby wants my attention :)

Vomit, Vomint and you guessed it more vomit!!!

Well let just say I'm sick of seeing the stuff!!!!! Last night Thomas vomited all in his bed i had to get my hubby Sam to clean it up. Don't get me wrong i can handle baby spew and all types of diarrhea and things but i can't handle adult or older kids spew and lets just say i didn't want there to be more spew then what there was to begin with!!!


Anyway i decided to write down what Bailey eats in a day to give everyone who is watching this blog an idea of what he eats-By the way I'm not seeing the dietitian till the 11Th May!!!! Which i am quite concerned about how much weight he will lose up till then anyway.

7:00am 150ml bottle or 5oz
7:15am Little vomit
9:00am 4 teaspoons of banana, pear and mango
9:30am Little vomit
11:45am 6 teaspoons banana pear and mango
12:15pm 150ml bottle or 5oz
12;45pm BIG vomit
1:00pm little vomit
1:20pm little vomit
3:45pm 150ml bottle or 5oz

So far he has had 356 calories for the day now he is meant to be having for his weight 985 as you can see with only one more bottle tonight and tea he is not going to get that in and i have tried putting upping the calories in his bottle one extra scoop so he is getting more in-he just won't drink the whole bottle!!!


So anyway it's going to be interesting to see if he loses weight again or if he continues to lose weight till we go to the dietitian. Actually I'm quite worried about this i would value anyone Else's opinion on the matter!!! I just don't want him losing drastic amounts before he goes to the dietitian.

I also wrote out a list today to take with me to the specialist who diagnoses cerebral palsy so i don't forget it. I'm one of those people who forgets everything as soon as i walk in a Dr's office lol unless of course I'm totally comfortable with them.

Phot of the day!!!

These are my 3 beautiful boys from left to right,

Thomas Bailey and Ryan

Weights!!!

Weights every week or fortnight, or however often you get your premature bay or any baby weighed you are constantly worried if they have gained enough or too much!!! With my firstborn Ryan he weighed in at 7 pounds 4 ounces he was fairly active fairly quickly, rolling at 3 months, crawling at 5months and walking at 9 he weighed about 25 pound 2 ounces at 18 months and currently weighs39 pounds at 5 years old, He is also about 112cm tall.

Thomas on the other hand was my little porker lol. He weighed 7 pound 5 ounces and was born at 37 weeks!!! Can you imagine the size he would have been if he was on time!!!!. He weighed 20 pound 9 ounces at 6 months of age, I know he was a little chubber lol. He now weighs about the same as Ryan only about 10cm shorter. His weight does not bother me he has got hugeeeee hands so the health nurse thinks he is going to be very tall when he is older.(watch out rugby league in 14 years lol)

Bailey as you well kn ow was my premmie born at 29 weeks he weighed a tinyyy 2 pounds 14 ounce(although this is nothing compared to some other preemies). He weighed 4 pound 4 ounces when he came home. He has never been a big drinker i breastfed him with a nipple sheild till he was 5 months old and i wouuld of done even longer only my milk dried up due to all the stress of trips to hospital aand back. He is now on a formula called elecared the milk protein is already digested so he doesn't have to do it. Apparently thats what he has trouble with. He currently weighs at 10 and a half months 18 pound 8 ounces.

As for me, well lets just say we won't go into that lol.

So where am i going with all this weel as i mentioned yesterday Bailey seen the Health nurse today for his fortnightly weigh and length. He had gained nothing in 2 weeks he even lost 10grams i know it doesn't seem much but its a lot to me. For the past week he has only been having 3 bottles and 2/3 of a jar of baby food if im lucky. The health nurse said he should be getting way more then that and i explained that i find it really hard to get him to eat solids at all and she said that i shouldnt be giving him more bottles ( he wouldn't drink them anyway) because he needs to learn to eat and want solids so anyway weights are going to become a problem.

My speech therapist rang up today and said she has been trying to ring the dietitian up herself to say his case was a priority but she couldn't get through but she will keep on trying!!!

Anothing thing to mention Bailey had a seizure yesterday it lasted 4 minutes it was a tonic clonic one i rang my pead dr to tell him and ask him if i should take him up to hospital he was meant to ring back. He didn't so i didn't take him he came to about 10 minutes after it happened and was his normal self so i figured they would only want to see him if he is still really lethargic for ages.

It is soooo cute to see Thomas and Bailey playing together Bailey was doing his version of a laugh to Thomas when he was doing something funny. He also thought it was funny to pull thomas' hair Thomas however did not!

Bailey having some Bumbo time!!!