January starts

Another call to the paediatricians secretary this morning to chase up the griffiths test we've not heard about. They're supposed to be calling me back when they figure out if it's been booked (lots of eye rolling done by me during the call). 

I applied to the blue badge team just before Christmas and have finally managed to send payment just now after the lady in charge gave me the number for an accountancy firm by mistake. Classic. Fingers crossed we get a decision soon, it would make life so much easier to have a badge. E can't climb into the car or car seat so I need room (and a steel back) to lift her in, she also tries to run off into traffic because she doesn't understand danger - so having a little more space between us and the other cars would be nice!  

We've gotten used to our Maclaren Major Elite now that we've had it for a few months. I miss the invisibility of our regular old pushchair, but she's so much higher and more comfortable looking in the elite. We get stares, very blatant stares - but I'm working hard to ignore those.

I forgot to mention, E had another ENT appointment at John Radcliffe back in November - they determined one of her grommets was on the way out and that she definitely has big tonsils. They want to do a sleep study on her and get a swallow study done with our salt team. 

No news on either of these yet, but I'm silently glad because she simply will not sleep in new places or with people present. The thought of the sleep study fills me with dread! 

Trying for a fun day today after a lovely post Christmas week, before pre school officially starts tomorrow and the fun of her MRI under ga on Wednesday.

Trying to think positive.

Christmas blues

Christmas Day and E has no idea. She knew there were gifts and she was happy for them, despite being overwhelmed by having to try to open them. She didn't make it through our dinner together as she was too exhausted to eat and to top it off she has acquired a nasty nappy rash due to teething for the first time in a year. I'm just having one of those "it's not fair" days and I need to come here when that happens!

We had another failed attempt at the head MRI a couple of weeks ago, only this time much worse. The sedative they gave E just wasn't enough, she managed to fight it and stay half awake. She thrashed and hit out and cried and moaned. 

Traumatic day doesn't cover it. They made us wait, so much waiting while she screamed and threw her lifeless limbs around, they topped her up but she still refused to sleep. Torture almost.

We've had 2 salt appointments, both just half an hour of talking about doing what we are already doing.

Pre school visits, as I finally managed to find somewhere hopefully suitable - though I still have my reservations, but I'll see how it goes. 

The first week of Jan will be hard, with pre school full morning, MRI under general anaesthetic and more useless SALT.

It's supposed to be such a happy season and in part it has been, it's just slightly tinged. 

eye twitching struggles

My eye is furiously twitching as I sit here enraged after finally getting through to someone at Stoke. The ophthalmic appointment we have been waiting 2 months for has not even been put through, they will 'chase it up' they say. I'm at my limit, I'm done.

E had physio a couple of weeks ago, a reassessment. While the physiotherapist was nice, telling me he doesn't think E should be falling any more than a normal child - then 20 minutes later stating she has weakness in her hips along with her extreme hypermobility and low tone and giving us exercises to do with her - make's me think he's as ridiculous as all the other professionals, we're returning in 6 weeks to no doubt get signed off.

We couldn't attend the recent short notice MRI on Halloween week as poor E had developed an awful chest infection and was too ill. Rescheduled it for the 2nd December, the day after she finally has her orthotics re-assessment.

I'm having a huge task in finding her a suitable pre-school at the moment, everywhere either has awful reviews or just don't want to offer the extra help to a child with ASN. I'm booked in to view 2 places next week and double crossing my fingers than one of them will be perfect.

It's like every tiny thing is a struggle some days. We drove 10 miles to join in with an ASN group this morning only to be told the dates had changed and it was on last week and next week. Honestly, nothing is easy.

Monotony of waiting

Feeling so discouraged today. 

Paediatrician appointment a couple of weeks ago was ok, rushed and typically uncaring but ok. I asked about a few things that had been on my mind but felt like none of it mattered to her.

I got to read the neurology appointment summary which for some reason still hadn't been posted and I also got to find out that her genetic testing came back clear. A relief.

I asked about an eye test due to her eye squeezing and scrunching getting more frequent, I also commented a lot on the various differences when we're with a group of other toddlers and the paed said she'd put us forward for a 1hour play session where they assess her developmentally. I'm angry it takes me saying certain things for her to suggest these, why not do these things from the beginning? 

She assured me the MRI referral was going through and it'd just be a matter of time. Here we are still waiting.

In the mean time I still hadn't heard from SALT so contacted them only to find out I just hadn't received the summary letter. They posted it again and I was assured E is now at the top of the waiting list, we should hear "soon".

Last week E had a check up audiology appointment to see if her grommets are still in place, thankfully they are and her hearing is still good. While she was there the audiologist noticed her scrunching up her eyes and asked about it, I mentioned that we are waiting for an eye appointment and also that we are still waiting for speech therapy and she was so shocked with how slow everything is that she was kind enough to write these things in her summary. She sent this to us and to the GP and paediatrician and our copy arrived 2 days after the appointment - this is what a great health care worker looks like! I'm hoping this will help speed things up but who knows anymore!

We still haven't heard from orthotics about an assessment either.

It just all feels so ridiculous, I don't mind waiting - I just want to know there's something at the end, something definitely happening. The portage lady wasn't able to visit 2 weeks ago so it's been rescheduled for Thursday, I have a hundred questions ready, about pre school, wheel/pushchairs and disability. 

I just want to see a bright future, but with all this worry and struggle it's very foggy.

Happy meeting

We had our first meeting with portage services today! Two lovely ladies came to the house and assessed E, one played with her and the other asked me questions. E meets their criteria and so now they are coming fortnightly for play therapy sessions. They will be our rock in terms of being a connection to Drs, therapists and schools and helping us with anything we need. 

One of the ladies is going to help me fill in the DLA forms as she's certain we qualify and she will also be able to get funding for a McLaren Major or wheelchair later on. 

She's also suggested a pre school as the one we visited yesterday had no 1-1 which made it totally unsuitable. 

So happy to have this support and finally someone to talk to and help, can't recommend the service enough! 

Tired

So it's been nearly 2 months since we saw neurology and we've not even had the appointment summary through, let alone any of the referrals we were promised.

Also no sign of the letter the speech therapist told me we would get.

E had an orthotics appointment last Thursday which I had made as an extra because I was so unhappy with the last appointment.

This time my husband came and sat quietly listening to the fobbing off and patronisation the ortho threw at me like he always does, but then piped in about how disgusted he is that we have no help. The ortho seemed shocked that someone actually opposed him, it was great! He still kept on trying to throw more blurb at us but my husband had legitimate questions, like why can't we have piedro boots again instead of having to buy our own. Why can't we see an OT and what happens when she outgrows her pushchair and we can't carry her around.

Ortho said we had to make a choice wether to reside her to a wheelchair in which she would go backwards with progress or to keep pushing her, this was like a red rag to us as it's clearly not what we want, nor what we were implying! She would just need it for longer walks which she cannot physically do, why would we want to stick her in a chair needlessly?!

He then said we absolutely could have piedro boots again, which was the opposite of what he told me last appointment.

After what felt like half an hour of back and forth he said he would book her in for a longer assessment appointment with himself and a senior orthotist so they can properly observe her. Why this hasn't been done previously I don't understand because the room we meet him in is too small to observe E do anything in!

I've been annoyed about the lack of physio support so visited the GP for a re referral, it'll probably be a waste of time but at least we will have tried. 

E's next paediatrician appointment is next Wednesday, I'm going to ask about moving to the nearer hospital and what on earth has happened to all these referrals we were promised, feeling apprehensive about it.

Snails pace

I We visited the play and language drop in clinic and spoke to the speech therapist who ran the hanen course I attended. She didn't just nod and say "let's see in a few months.." She listened and agreed, and she said something I've been longing to hear "this is something that is now getting to be more serious as time goes on and E needs regular speech therapy." 

I had to stop myself from getting teary eyed, it was both amazing to hear some truth and positive help, but also upsetting to be told what I already knew, that she is really quite behind.

E was her typical self during the assessment which was good, I wanted the SALT to see how hard it is to keep her attention and how low her understanding is. It felt good to be fighting for her and having people take note and not just say, oh well she is only 2. 

I got a referral for a sign language course which I attended this week. We feel like it benefits E more than just speaking as she isn't too good at eye contact and signing helps to put emphasis on a word and to give her a visual clue to its meaning. The course was fantastic and I learnt a ton of new signs which I am desperately trying to wedge into our daily life.

Now it's back to waiting, 30 speech therapy sessions with emphasis on gaining understanding is what was recommended. I can't wait to start.