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
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
Yesterday was certainly full of trials and tribulations hence the title.
Let me tell you what happened it started all wrong so it should have been a warning of what was to come. Pinkie normally goes round to her friend’s house on a Monday after school, it is a regular routine. Well yesterday I couldn’t take her as I had to take Perkie to the doctor’s as he isn’t well. Well this caused Pinkie to go into meltdown, because she couldn’t go. We had name calling, throwing things you name it we had it, eventually managed to get her off to school, all I could say was good luck to the teachers they needed it with the mood she was in.
Then in the afternoon I had to make an emergency trip to the doctor’s with Little Gnome who suddenly went from pale to bright red and had a seizure. Well the outcome of that was this had made the doctor push the referral to pediatrician even more, so some good has come out of it.
The it was Perkie’s turn to go the doctor, he normally has problems even going to the doctor’s he got in and sat down, you could see he was very uneasy and he was holding on to me so tight. The reception was very quiet and he seemed to be ok. Then this family arrived and they were so noisy he started to flap and become agitated I thought oh no we are heading for a meltdown. I told the receptionist we would stand outside as he was autistic and not coping with the noise. I heard one smart comment but just couldn’t be bothered to challenge the woman about it.
Last night I was so upset, the fact that my 2 boys were ill which is heart wrenching enough.Also the fact Gnome had his first seizure that was so scary and that really worried me. I am so exhausted Mr Savvy and me a me are working on auto-pilot as Gnome is not sleeping . Oh the trials and tribulations of it all
I know you get the strength to cope with things but sometimes it does all get too much and it brings you down, well today is just one of those days.
I had to take Little Gnome who is 1 to the doctors as he was coughing and spluttering, his breathing sounded so awful. It all started yesterday he just had a slight cough and as the night progressed his breathing deteriorated. Why is this getting me down, well the fact that my child is ill. This is the third time since Christmas that he has had a chest infection, I was half expecting him to be admitted into hospital.
We got to the doctor’s and luckily it was my doctor who is lovely and so helpful. He listened to his chest and straight away he was put on a nebulizer for a good 10 minutes to open up his airways. Whilst he was on there, I told him I had not heard from the pediatrician about Gnome’s referral. Well straight away he tapped away on the computer to start chasing it up. The records hadn’t been updated to show Gnome has physiotherapy and occupational therapy once a fortnight, so that was going to be sorted today as well. Fingers crossed it won’t be long for the referral then we know exactly what we are dealing with and put wheels in motion to get the right support etc.
The outcome of the appointment was he has yet another chest infection, he has been given steroids, inhaler, anti biotic. If I have any concerns about his breathing or it sounds like this morning, I have to take him to hospital. This all stems when he had bronchitis when he was 4 months old and was in hospital a week, which was an awful time.
I’m sat here just watching Gnome as he is fast asleep with all the medication, wishing i could help him more ,so upset that he is ill again. I’m an emotional wreck but need to stay strong for the rest of the family.
Well yesterday was a day of a massive achievement for Gnome which I wanted to share with you.
Gnome has neurological problems even though he is just a year old, he is still be diagnosed exactly what is wrong but we will get there eventually. With all of his problems, he needs intensive physiotherapy where I have to watch as he is held to the ground on his belly to help strengthen his muscles as he has very low muscle tone. How he is learning to roll over as he can’t do itself.
Also he is unable to talk but day after day I keep trying to get him to say dadda, mama and baba and when we go out we say bye bye and do all the actions. Well you should have seen my face when Gnome said hiya dadda and did the action as well just as his dad rang. We sat there saying did he just say that. It was such a magical moment and one I will never forget.
So even when it seems you are not getting anywhere never give up you might be making a difference.
I thought that I had come to terms with everything regarding Gnome well that was until I got a phone call, then all of a sudden it was like I had hit a brick wall, I actually felt quite numb as well. It was going through all the things that he couldn’t do
Then seeing pictures of babies that were born around the same time as Little Gnome. The parents are boasting about their children crawling and walking, talking etc and quite rightly so. It’s a very proud moment when your children reach these milestones, shout it from the roof tops and be very proud. Then I look at Little Gnome who is nowhere near these milestones.
Next month Little Gnome is having his developmental check and I know this is going to high light a lot of things. Just talking about it now upsets me. So goodness knows how I am going to feel. I know I am lucky yo have him etc. Just feel well I can’t explain how I feel. It just seems to be one thing after another, I just want life to give me a bit of a break.
I think everything seems worse than it is because I am so tired.I’ve not slept properly in weeks as we have been up most of the night with Gnome does anyone know of any really strong coffee