December 5th 2006
Parental Concerns - Not Walking
Attended for Assessment
Commando Crawling
Sat @ 9mths
Crawled at 12mths
Age: 19mths
Referred by Dr M for assessment of delayed gross motor skills.
Basic muscle tone - Low tone, slip through sign.
Range of movements - NAD, full range of movement in hips and ankles. No knee hyper extension, MCP hyper-extends. Automatic responses - PE of arms present in all directions but not strong.
Volitional Movements:
Asher is able to roll from supine to prone to come up to sitting, his movements are slow and require effort. He will crawl slowly on his hands and knees and pull up to a tall kneel.
Asher needs assistance to move from tall kneel to standing. On weight bearing, he shows decreased strength and endurance, needing to lean his body against support surface. He can only stand briefly and then collapse at the knees.
Asher is unable to take weight when held in standing. He is unable to cruise sideways along furniture. He has a positive slip-through sign.
Impression
Asher has low tone & hypermobile MCP joints and in his hips. His movements are generally slow and requiring moderate effort. Asher moves quite well on the floor but lacks control in upright position. He is crawling but not cruising. His gross motor skils are functioning at about 9 month level.
Plan Given mother advice on positioning and handling. Given home program. See Y12.
Physio.
Calendar Dates
January 4th 2007
Physio at The Childrens Hospital
Progress Notes
Age: Nearly 20 Months
Dribbles alot, chews food ok
says 'mum, dad, no, nana, tractor, asher, what that, oh oh, makes car noises'.
His fine motor skills are age appropriate. Stack lots of blocks, putting straw into fruit box, recognized familiar faces in photo album.
Physically asher still prefers to crawl on all fours but up on fingers. He needs slight assist to get up to standing. Tends to flex @ his hips and WB through forearms. Mostly go up onto his toes (has good calf range). When feet are flat, heels valgus - foot prunated right to left.
TS Dr Munt 6/2/07, may benefit from muscle biopsy.
Plan to commence Baby Swim. Given Tubigrip G Stocking to strengthen lower legs.
Physio
January 11th 2007
Asher - Hydrotherapy at The Childrens Hospital
January 15th 2007
Ash is 21mth's Old!!
January 31st 2007
Baby Swim Hydro
Progress Notes
Attended for Baby Swim - with Mum and Dad. Reported to be pulling up to stand more and cruising along furniture. Still tends to go up onto toes but not as much.
Generally low tone and lacks strength in all limbs.
Plan continue baby swim
Physio
February 6th 2007
Ash seeing Dr M @ 10.20am
February 14th, & 21st 2007
Baby Swim Hydroptheraphy
February 15th 2007
Ash is 23mths Old!!
February 28th 2007
Baby Swim Hydro and Physio
Diary Entry - 6th March 2007
Ash has been popping out heaps of new words all the time. Its good because at least I know that part of his development is coming along normally.
I've been trying to get him walking on his legs a bit but he doesnt really want to. He is still very wobbly in his hips and he cant seem to get his legs in the right spot. He will take a few steps though while I hold his arms. He's strong enough to stand there. I think he really needs me and Greg on the floor with him for a bit of extra encouragement.
Diary Entry - 9th March 2007
On Wednesday when Greg took Asher to swim class the physio said to Greg that she wanted Ash to see an occupational therapist because they were a bit concerned about him. Anyway I had no idea what they were talking about because I was at my midwifery appointment and had only heard this from Greg.
Afterwards though I was waiting outside the hospital because Greg had gone back in to get his glasses that he'd left behind and the physio had followed me. She said that she'd made an appointment for Libby to see Asher at 9am next Wed 14th (the day i'll be induced!!). She said they were a bit concerned about his behaviour because he tends to be very clingy with certain things.
Anyway now they have me worried and thinking about what the problem, if there is one, might be. The only things I could come up with was Aspergers or some form of Autism. I have thought in the past that he might show some signs of that but I never really though he would. I mean he is funny about some things such as lights and fans. He obsesses over those things quite a bit and whenever he see's either one he'll scream 'on!'. He wont let you put your head on his pillow and he is funny about what he puts his hands on. I dont know cause I mean any of those things I would have thought could be put down to just his age group. He is very smart and at the moment he is saying a lot of words. He's a little parrot and repeats everything you say. The list of words he can say is amazing. I never thought he spoke that much but now he can really communicate and let us know what he wants. Im hoping it will be nothing and that he'll be fine. Everyone i've spoken to so far doesnt seem to think he does anything out of the ordinary but then again no one thought he had a problem before he was diagnosed with Hypotonia either.
Its just a bit hard thats all. Our new bub can come at any minute now and we are still finding out two years after Ash was born more problems. He hasnt really had it very easy so far, it just seems to be one hurdle after another. We see the pediatrician again on the 24th April so I guess I can see what he thinks about this then to. You dont really expect your baby to have so many problems, if any at all. Its unfair. He was born brand new but no-one can say whats caused it because they say he was born like that. I guess that leaves me as being the cause. Im a defect. Hopefully Indie makes it out okay without any problems. People who's children are born 'normal' just dont seem to understand. Its really hard having all this go on. Im not saying i've had it harder over anyone else, but it is very exhausting emotionally and physically. Leanne has taken him today anyway so I can have a break until Sunday which is nice.
Indie-Jaye is Born!! 10th March 07
Diary Entry - 5th April 2007
Well Asher saw the occupational therapist yesterday. It was quite interesting actually, although very hard to explain to someone, and hard to understand, if your not an occupational therapist. Basically she observed his behavior to check his development level and she asked us a bunch of questions. She said she thinks he is a bit behind compared to other two year olds only because he cant do the same things as normal two year olds - he isnt having the same experiences as them because he isnt walking and exploring. She is also going to look into if he might have a sensory sensitivities. Basically the way we perceive the world is through our senses - taste, smell, sight, sound and touch. Its all connected to our brain and sometimes there can be a sensitivity to one of these things and the way Ash perceives the world could be very different to the way we do.
Anyway she wants to see him again next week and she is also going to speak to the speech pathologist to see if she wanst to see Ash. If not we will just be given some exercises for him to do because the muscles around his mouth are weak. She said we should keep reminding him to swallow and close his mouth and also we have some exercises for his mouth. Its all a bit full on at the moment going from one thing to the next. Libby was really helpful actually and very informative. She said this is something that he will always live with and he'll always need to do some sort of activity to keep his muscles 'awake'. Anyway hopefully in all of this we will find out why Ash doesnt like standing on his legs and then fix it and get him walking!.
Diary Entry - 10th April 2007
Asher saw Libby again today, the occupational therapist. She was assessing Ash to see if he had a sensory sensitivity which was why he might not be walking. Anyway we went through the sensory questionnaire which assesses and scores Ash on a number of different things. I cant actually remember everything she said because its to energy consuming. All the physios though got together with Libby and they all agree that further tests need to be done because they think there is something else physically wrong.
Diary Entry - 23rd April 2007
Well Ash has his pediatrician appointment tomorrow. I've been looking forward to it for ages but im really nervous all of a sudden. I want him to do more tests but at the same time im nervous about what Ash will have to go through and also what they might find. I just want to know whats wrong and find out if its something that can be fixed. I've really been worrying about him. I desperately want him to walk. I think he does to.
Diary Entry - 12th May 2007
Ash has had some blood tests and he will also be having a MRI on the 4th July. On one hand I hope it shows something so we know whats wrong but on the other hand I dont because I dont want it to be something we cant fix. All this not knowing is really getting to me and im at the stage where I just want to know what it is whether its good or bad so that at least we know what we are dealing with and how to deal with it instead of guess work.
Diary Entry - 22nd Mar 2007
Well Ryder apparently has started walking as Helei informed me via text this arvo. It makes me so angry that babies that were born after Asher - some up to a year afterwards, are walking and he still isnt. Im so angry, why Ash, why our family - what did I do that was so bad to deserve this?. Its so frustrating for me and its really getting me down.
The time alone spent helping him is becoming exhausting. Its also so hard waiting long periods between tests and appointments - I am so close to just giving up. I just feel like walking away from everything and hiding for a long time. I hate people telling me he will be okay and trying to predict outcomes - it doesnt help it just increases my frustration ten fold.
Everything already isnt okay and I just feel like screaming at everyone to just shut-up. I dont want to have to hear or think about Ash in that way or any other kid. I dont even know what im doing anymore or if im headed in the right direction. I feel stupid - I feel really stupid. Like a fraud - I feel like a stupid mother who doesnt know whats wrong with her son and is just trying a bit of everything just in case.
Diary Entry - 29th May 2007
Asher had physio with the student until today. I took Helei with me because I thought it was going to be a complete disaster. It actually turned out to be okay, I mean he did cry a bit but he didnt turn blue like last time. The physio is on leave for 3 months so Jane will be taking over with Asher. Its about 4 and a half weeks until his MRI so im getting quite anxious and nervous again. Im also preparing myself if they dont have anymore answers. I think one of the worst things is not knowing and not having any answers. I have noticed a couple of changes in Ash though. He is standing a little bit straighter and going down on flat feet a little more.
Diary Entry - 30th May 2007
Ash had hydrotherapy this morning at the hospital like he does every Wednesday. The lasted couple of weeks its really sucked my energy, Im so tired after it, its actually a really good work-out. Anyway the last two weeks he has also been wearing splints on his legs and shoes in the pool. He seems to be doing really well in them - even standing up a little straighter.
He has developed, just in the last few weeks, a fear of heights. He screams and screams and clings on for dear life whenever I put him up on the change table at home or at swimming. He also screams if I put him on the bench at swimming which is closer to the ground. He is genuinely terrified and I have no idea where his fear has stemmed from. He hasnt fallen from anywhere at home nor anywhere else that I know of.
Diary Entry - 1st July 2007
Ash goes in for his MRI on Wednesday. I hope they still do it actually because he is on antibiotics and has bronchitis. We have been waiting two months for this appointment so they better not change it. Two weeks after that we have an appointment with his pediatrician to find out the test results from his MRI and blood that was taken.
Diary Entry - 4th July 2007
Well Asher had his MRI today. He was such a brave little boy. As they were putting him to sleep, just before he was completely under he whispered "mummy?" - then struggled a bit and fell asleep. Helei and I then went to get something to eat and wait for him to be finished. It was nearly two hours before he came into the pediatric day unit where we were waiting for him. He was just lying down on his tummy on a bed and was still groggy and sleepy. He just kept saying "mummy, hold, hold, hold" - it was very cute he just wanted me to cuddle him. After he'd woken up a bit he was allowed some cordial and then a cheese sandwich which he scoffed!!!. I also bought a mandarin for him. At about 5 we were allowed to go home and he watched cartoons in front of the tv on his couch.
Waiting for his MRI
Diary Entry - 17th July 2007
Well Asher has his pediatrician appointment today and we got his results from the blood they took and the MRI. It turns out he has mild Cerebral Palsy or Floppy Cerebral Palsy which is minimal motor damage, in his legs greater than his arms. Which they use the word Dieplegia for. This is due to scarring on his brain around the edges of the fluid sacks and also in his left frontal lobe. Dr M said the damage probably occurred sometime between 3mths into my pregnancy anywhere up until the delivery.
I cant help thinking that maybe it was something I did that I could have prevented. I guess we will never know. Anyway the Dr also said that there is a possibility there is further scarring to the brain that the MRI couldn't pick up. The only way we will know everything is by watching him develop and overcoming obstacles when and if they arise.
He also has an increased risk of developing seizures during his lifetime because of the scarring and because of the circuitury of his brain. He may develop epilepsy, he may not.
Anyway the next step from here is to increase his therapy, physio and occupational therapy. Asher will be referred to an organisation called Novita which helps kids with special needs and gives extra help and support and care if he needs it later in life. Asher will most likey be put in calipers which are brace things for his legs. The Dr is optimistic but cautious that with the way he is going Ash may be walking in 6 months. We will see Dr M again in 6 months also to continue monitoring his progress.
Anyway thats about all I can remember about what they said today. It could have been worse so yeah. Im glad we finally know what we are dealing with and Ash will now get all the help he needs. We are just going to be very busy!! I feel a bit bad for Indie actually because of all the extra attention Ash needs, shes dragged along everywhere. She'll be okay though, at least shes not at home doing the same boring things everyday. Im actually really glad she is so good in the car, except when shes hungry.
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