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!!
5/27/09
5/26/09
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!
5/25/09
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.
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.
5/18/09
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
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
5/16/09
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.
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.
5/11/09
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!!!
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!!!
5/8/09
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!!!
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!!!
5/4/09
We Have A DATE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Thomas left Ryan Right a rare moment in this house no fighting:PSorry 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.
5/1/09
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.
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.
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