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. 

Speech isolation

I found a blog post recently which perfectly sums up how I currently feel about E's speech delay, have a read if you're interested.

http://www.scarymommy.com/articles/mom-speech-delayed-child?section=scary-mommy-blog

Sometime's I will go for quite a while without anything bothering me, but then something will happen to send me into that worry spiral. Last week I took E to a park, a little girl and her dad arrived a few minutes after us and the girl took a shine to E, followed her around wanting to play. 

She would say "let's go on the slide next" "sit with me on this" and so on and every time E's expression remained as it had been before the girl spoke, she had no reaction. 

Even though I can chalk this partially up to her not understanding the questions, it's the lack of interaction that worries me, she wasn't bothered at all about that little girl. E watched her cautiously for the first few minutes but after that she was back to being in her own world. I gently guided her along to wherever the little girl was playing after she began to give up on E, when at one point the girl began to make some pretend tea and offered it to E, who just walked straight on past her oblivious, the girl completely gave up at that point and I felt like I could cry there and then. 

It happens all the time and it makes this journey so lonely. I can't stop and chat to another parent as E plays with their child - because she never does. 

Anyway, bit of a self pitying day I think. I know I should be grateful that E knows no different and seems happy with her lot, it's just a little hard to accept sometimes. 

Neurology

E and I met with a fantastic neurologist, who I am certain is about the first Dr to have actually asked questions and then listened to my answers. He checked everything, he asked everything, it was fantastic and an immense contrast to our usual appointments where every communication feels like a struggle.

I won't go in to every detail - we were with him for quite a while - but the end results were that he wants E to have an MRI on her brain and more blood tests to check and make sure things look ok, plus rule out certain issues. He also wants to try to push for her to get regular speech therapy and was appalled when I told him about our previous experiences, I'm not holding my breath though so unless we get some solid proof of an appointment then I'll still be taking E back to the Play And Language drop in next month.

Next up he wants her to have follow up hearing checks, this is because after her grommet insertion she was given a final audiology appointment to see if they had done their job, and when the results were good she was simply signed off and I was told to just keep an eye out for her hearing to deteriorate and then start the process again if it does. This is something that fills me with fear because of course her language skills mean she can't tell me, so it's a total guessing game.

He also wants some kidney and bladder function checks done as after I told him of a recent failed attempt at potty training E, he seems to think her pattern of urination is a little unusual for her age.
Lastly we also left with a referral to Oxford for an ENT appointment as the neurologist noticed how huge E's tonsils are. It's something I noticed a while ago, she snores very loudly and coughs and chokes at night and this could be the reason.

I'm really eager for the appointment letters to start rolling in but I expect it to take at least a few weeks. Hopefully we can forget about things for the last few weeks of August at least. Come September I'll be visiting pre-schools for a look around, we had planned to send her back to her original nursery but come to realise that a government setting is going to be way better for her.

I also finally got contact in contact with portage who will be coming to see us at home in early September for a little assessment to see how they can help. All positive, but I'm still finding it very overwhelming. E of course takes each appointment as a new day, she is used to being poked and prodded, I just wish she didn't need to be.

Hello

I decided to start this blog as a way to write about my daughters issues without having to worry that I'm going on too much or about getting judgmental comments.

Here's our background; my gorgeous girl was born in November 2012 in a rather traumatic home birth, due to a pretty horrible midwife turning me away. She had the cord around her neck, so the paramedic told me, but thankfully she was fine and we didn't even visit the hospital. 

E was unable to breastfeed, days of trying and failing - even with visits to triage begging for help and a bf expert coming to our house - it didn't happen and she lost weight. She was happy on formula although at around 4 months we struggled to get much into her. 

Weaning her from 6 month+ was one terrible, horrible slog. She just didn't want to eat, we tried every flavour and texture, but she simply refused or gagged, was sick a lot and uninterested. 

At a routine weigh in with health visitors I asked what I should do and was told to give her pasta and leave her to it. Fantastic advice. 

At this same visit one of the hv noticed that E's foot was slightly turned over and told me to consult the GP. Terrified, I got an appointment and the Dr mentioned how flexible E is and referred us to a specialist with worries of hip dysphasia.

After our first visit, they ordered an ultrasound on her hip area, from which they found nothing. 2 appointments later and she recommended an X-ray on E's spine to check for any damage, since E also has a sacral dimple and wasn't sitting up yet. This was fairly pointless because of her age, it wasn't able to show much but the Dr suggested she didn't think there was a hip issue. So an MRI was requested to investigate and we were assigned a paediatrician. 

The paediatrician pointed us at a specialist rheumatologist in Oxford who diagnosed her with hypotonia and hypermobility and expressed concern over her lack of speech and understanding for her age of 18 months and referred her for physiotherapy.

Meanwhile we were advised to see a podiatrist in regards to her twisty foot, the podiatrist told me she was too young for them to do anything with and to see how she gets on.

At 19 months she had her MRI, a very memorable day as she fought sedation like you wouldn't believe. The results came back clear, no spinal problems.

At this point I had expressed my concern about her understanding, speech and lack of interest and attended a speech and language drop in. They put through for a routine hearing test and signed me up for a course called hanen which is mostly parental. 

At 20 months we went out and got her some Dr Martens in hopes of helping her stability and they definitely did. 

E then had her first and second physiotherapy appointment, on the second appointment she had literally just began to walk independantly. The physiotherapist said we didn't need to see her anymore because of this, but she referred us to orthotics for her feet. 

When we saw the orthotist, she got measured for some piedro boots which were fitted around a month later (and were pretty cute!). Small progresses.

A few months down the line I began the hanen course by SALTs and dedicated every Wednesday evening for 3 months to learning and understanding techniques for simplifying my language to aid E's understanding. While I feel we were still very much left in the dark with regards to why E was behind and how to help going forward, I would still thoroughly recommend the course and honestly feel like it helped me as a parent immensely. I also began learning some sign language which E began to slowly pick up. It was amazing to finally have a few small pieces of communication with my girl. 

She had 2 hearing tests and failed both, with mild to moderate hearing loss due to glue ear. A grommet insertion operation was scheduled for Christmas time.

In the mean time she outgrew her piedro boots so we returned to orthotics. Only to find a new orthotist who recommended heel cup inserts instead and told us to go and buy our own Dr Martens for her. Honestly it felt like an NHS money saving move but I felt a little relieved that instead of constantly waiting for appointments, I could just pop out and buy her next pair of shoes when she needed them, plus the DM's actually sit higher on her ankle, giving a bit more support. Shame about the cost though! 

December rolled around and we tentatively waited in the hospital for our pager to buzz for the signal that E was out of theatre from her grommet op. Over an hour later than expected, we were told she had trouble breathing and had to be put on a ventilator until they could stabilise her. We were terrified until we saw her, fighting off the anaestethic and screeching, wanting to get up but having no strength or control, while the other children in the ward quietly slept it off. That's our girl, always fighting! 

We noticed a change in her instantly, she actually turned her head when we called now and she learnt her second ever word during her recovery. Speech has been slow but steady ever since, as has her understanding. Hanen techniques, signing and getting out as much as possible so I can annotate the world is helping tremendously. 

Her eating has come quite a long way too; after she started nursery at 11 months she was able to tolerate mushy food and worked her way very slowly up to things like toast. Extreme textures have taken longer, a banana would have her instantly gag but now she adores them! Mostly she just can't eat hard or very chewy foods now like meat and anything fine or small like a lettuce leaf or peas, and something like a soup with bits in seems to confuse her pallet and make her sick. 

But, now she's coming up to 2 years and 9 months old and we are at a slight loss. We know she is hypotonic and hypermobile, she cannot run or jump and cannot walk for long without needing to be carried, her feet twist as she walks and trip her up and she spends half her time falling over. We know she is about a year behind in speech and understanding and her paediatrician has loosely diagnosed global delay. But we need more. We got referred for a proper speech and language assessment but after waiting 3 months for the appointment, I phoned to get told that we weren't getting it because of previously being on their books, so it's back to the once a month drop-in in August to ask for regular therapy. 

I am incredibly tired of these constant battles, at times it feels that we have never had time to just enjoy E for the gorgeous cheeky sole she is. At one time I was hauling her to 2-3 appointments a week and the worry is unbelievable. 

I recently took her for a blood draw for  chromosomal array testing, though the paediatrician stated that she didn't think E has any particular syndrome because she "doesn't have any obvious facial markers" which seemed a little too blasé for me. 

Waiting for these results and a trip to a neurologist to address E's issues and a few other worries I have. I promise the next post here will be no where near as long. I just wanted to have her history written down - maybe one day she herself will want to know, I definitely hope she won't remember much of the bad stuff.