For all my new readers hello and welcome, I want to share a bit about Gnome. He has mobility problems and is unable to sit and stand . As to why , well that’s yet to be diagnosed.
Today he has been a foul mood , nothing has pacified him, he constantly screamed, which gets me down as there is no let up in it. I could see earlier today how this evening was going to pan out, well I thought I did. After a major temper tantrum his dad was picking him up to put him on his knee. When it happened……….
Gnome in his temper put 2 feet FIRMLY on the floor he put his feet to the ground. This is the first time since he was born he is now 14 months. My baby boy stood for a few seconds. That certainly makes up for the rotten day
Last week was an awful week so much was going on the kids had suffered major meltdowns. I was feeling very disheartened with everything and everyone a very down week.
Then my 13 month old Gnome sat unaided for the first time in his life. He is still very floppy and lost control of his body a few times I think he always will be like that unfortunately but least now he can sit up and see the world from a different perspective. So I wanted to get him a treat to say well done for his massive achievement.
Well you should have seen my surprise when I looked in my email and saw a message from appliance online who had read my blog and had wanted to offer me some Amazon vouchers as a gift. Well who could say no to such a generous offer.
So thanks to appliance online Gnome has some fantastic sensory toys that will help him and he absolutely loves them.
There is more if you leave a comment at the bottom of this post the Appliance Online Fairy Godmother might be just reading this and some of you may get a visit from them.
Posted in Baby, Gify, Play
Last week I wrote a post on how Gnome despite his mobility problems sat up on his own, which is absolutely amazing because at 13 months old he has never been able to do this.
Well all week he has been practising to sit using the Leckey Squiggles seat, we have had lots of floor time to improve his muscle development as he has very low muscle tone. As he started to become more confident I have taken away the use of the Leckey Squiggles. He sits on the floor with me sat behind him for support. Now as the days has progressed he isn’t relying on me as much now and sitting independently ok its only for few minutes till he loses control of his muscles but he is still doing it. So very very proud of him.
I decided to get him a high chair so he could at least see more of what was going on and for his safety when I have to leave the room. I had it reclined for the last couple days as he is unable to sit up in it without leaning to the left. This morning I put him in and tried to sit him upright and he sat there, no leaning he sat upright .OMG !!!!!!
My baby is now sitting up playing OMG he is playing I am sat here crying as this is something that I would never see. I am one very proud mummy
Today Gnome had his usual physio and occupational therapy session, to help him roll over , sit up etc as he has mobility problems .
They bought him a Leckey Squiggles chair to help support him as he sat. They tried him in this and he sat there, no going floppy as usually happens. He sat there all on his own , unsupported the first time ever he has done this. I was so very proud of him and his sat there very happy with himself of his achievement. WOW.
So the physio said let’s take this one step further and try to get him to sit up without the aid of the squiggles. The first couple of times he flopped backwards then all of a sudden they let go of him and he sat there, OMG!!!!!. So the OT sat behind him and Gnome was sat there quite happily without any support, he was chatting a way and trying to reach for his toys.
What a first, my Gnome sat unaided for the first time in his life. He is still very floppy and lost control of his body a few time I think he always will be like that unfortunately but least now he can sit up and see the world from a different perspective
Today was Little Gnome’s development check as some of you know I was really worried about it and most definitely not looking forward to it, as I knew it would highlight all his problems
Well it went pretty much the same as I expected.
The first test was grip and pincher skills, he could use his left hand to get things but not his right, he did transfer things to his right hand.
He can’t turn pages of a book , nowhere near that stage.
He can’t sit unaided in turn feed himself, sit in a high chair in fact we are in the process of getting a chair from the Occupational therapist.
He certainly can’t stand or crawl.
He can’t talk so been referred to a speech and language therapist.
he can’t pull himself to sitting needs support
So you see he can’t do things a normal 1-year-old would do.
The outcome is his development skills are around that of a 8 month baby, his muscular skills non existant. I am being referred for the keyworkers scheme as she could see we would have a lot of agencies working with us again!!!!!
So here we go again for a third time all aboard the rollercoaster
I am so worked up about tomorrow, it is Gnome’s 1 year old development check and we know he is going to fail it but still not looking forward to finding out how much he will fail.
Right here are how I see things
1. he is unable to roll over without assistance, so that’s one thing
2. No way , no how can he sit up let alone unaided.
3. He is making no indications to crawl as he is unable to support his head whilst on his belly.
4.He is not talking can only say dada, daddy, hiya
5 He can not play with toys as they should, like building bricks, stacking things etc.
6. He will only eat Hipps organic rice pudding for a 4 month old, drink baby milk
7. he doesn’t sleep well at night, we are up at least twice a night a many a night Mr Savvy gets up at 4am as he won’t settle back down
I know we are going to have a talk on weaning but that seems futile as he can’t eat solids he gags on them. He is unable to feed himself as he can’t sit in a high chair because he can’t support himself. We are going to see about the sleeping problems but again there seems little point as it’s who Gnome is . Convinced he was a farmer in a previous life.
Despite all of the problems I would not alter him at all he is my loveable Little Gnome
Last week had to be one of the toughest weeks I have faced for a very long time, as each day went on it got worse. It all started off wrong and should have been a warning of what was to come.
Monday my baby had his first seizure which was very scary, so rushed him to the doctors, hopefully it is a one-off. Then by the end of the week all 4 kids plus Mr Savvy were ill.Then there was my breakdown in the school playground of all places which is a bit ironic as I hate the school playground and all the politics that go on within the other parents. The best bit about the week was the meeting at school where I was given lots of support, so things were looking up. Then BANG !!!! I get a phone call from the doctor over some blood tests on Friday.
My blood results came back that I had high cholesterol, now that on its own isn’t a worry but mix that with high unstable blood pressure and I am heading very rapidly towards a stroke/heart attack. Very scary stuff and not what I wanted to hear. My blood pressure nearly caused me to die the night I had Gnome as it became so uncontrollable. The nurses were so worried I was being checked every 10-15 minutes and wired up to all the monitors beeping away. So no way was I going to let my blood pressure get the better of me. I will do what ever it takes to get my blood pressure down. I want to be here and watch the kids grow up.
My concern is for Little Gnome he has his 1 year development check on Wednesday, what is this going to tell me that I don’t already nothing but it is going to highlight what he can’t do and make it more real. I am dreading Wednesday