Diagnosis and a whole heap of stuff!!!

On December the 6th we received Bailey's official diagnosis and while the damage wasn't in thearea of the brain we thought it was in it was still there that means that Bailey does indeed have mild cerebral palsy affecting his left side his balance his depth perception his behaviour and his high pain tolerence level( which is a whole other story).

Our Dr explained that Bailey has two catche's in his right leg and his reflexes were slower than they were last time. He explained that this couple with the fact that he falls alot coupled with the fact he has a high pain tolerence(more on that later) means he needs a hinged AFO on his right leg which we are going to get fitted for tommorrow if this does not work than we will be talking about botox when he goes back in February.

I was relieved that we finally got the diagnosis not that i want him to have cerebral palsy but just knowing that all this stuff he does is indeed a symptom of something and not nothing makes me feel like we are on the right track to get him sorted out.

Now Baileys troublesome high pain threshold. We have been having a bit of trouble with this lately he has jammed his fingers in the door twice and cried for 2 seconds. He has fallen off the top bunk that i did not know he could climb while i was in the toilet and didn't utter a whimper. On Christmas eve he was at my in-laws and he was trying to get down a step and held on to a slightly heavy aluminium table. Well the table came down on top of his finger he screamed which is unlike Bailey but about 30 minutes later didn't seem that upset. His finger was bruised and swollen but i thought that it wasn't broken because he wasn't crying. He was crying every now and then and in the night but he also has a flu at the moment so i was unsure as wether it was his finger or him feeling like crap either way i gave him Panadol to help.

Fast forward to 3 days later when he started getting high temps and breathing fast his asthma was playing up so they told me to take him to the hospital which i did. They wanted to do an x-ray on his finger but they didnt think it was broken because he wasn't crying about it much and he also had an upper repritory infection. Well guess what turns out his finger is broken and it's across a growth plate so we have to see the plastics people tommorrow.

Fast forward to yesterday he falls over on the cement and grazes his head then last night he hit his head on the corner of hubbys bedside cabinet blood everywhere then today he bumps his head on the corner of the door this high pain tolerence level thing is really getting to me i never quite know when he is really hurt!

So i'm quite stressed as you can see i don't know what i can do for him. We have 3 appointments all in a row tommorrow and Ryan is on school holidays so all kids are home hubby home to. Isn't it funny when u wish they were home but when they are you get sick of them lol!

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!!!!