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.