Our little Pumpkin got teeth!!

10 months into our new life with the gorgeous little E I have learnt so much science and medical information that it makes me wonder what the heck I did all through secondary school!! (mucked about and fell asleep mostly- oh and flirted with the boys!!)  I have found amazing support via face book and feel like I have made good friends with mums of Escobar babies from all over the world, the USA seems the most advanced and knowledgeable (there aren't many of us so we closely stick together) Including little E there are now 5 in the UK, One older woman of 25 years, 2 gorgeous sisters and a little boy and then little E is the youngest.
 Its amazing to have found them all and I have learnt so much from them.
I'm learning to cope with unexpected questions and reactions, I'm gradually learning how to speak to the doctors (with direct don't mess me about tone!) and I'm unwillingly accepting the chaos of appointments and hospital stays.

 But I don't think I will ever get used to the stares.

Today Little E is 10 and half months and she has finally cut her first tooth. "Our little pumpkin got teeth" The sun is shining and little E has got a tooth, its all I needed to put me in the best of moods, I was beaming with pride and had a real spring time stride in my step.
My mum and I went into town to get little E a sun hat as her eyes are very sensitive to the bright sunshine. From the car park to the shop i clocked every single person stare, look away then stare back.

Thinking I was being paranoid I took a deep breath and held my head up high but there was no getting away from the blatantly obvious head turning stares that my little E gets. It bothers me.

Why does it bother me?

She is a head turner with her bright red hair and big blue eyes and cheeky nature. yes some do stare because of that but I can see the ones that look with pity. When my mum pushes the buggy I sometimes walk behind and i hear the comments "Oh that poor baby" "oh dear I wonder whats wrong" "is that baby on oxygen?" JUST ASK ME!
I cant be the only mum with a disabled baby in town can I? where are they all? Are they hiding away because they cant be bothered with the stares? Maybe I will get to the point where I don't want to go out. I'm not sure I could have coped on my own today. Its hard being stared at all the time.

During our lunch (Little E being fed via her NG tube with a gravity feeding set) a mum and her toddler approach me and all flustered she says " I just wanted to say that I'm in awe of you, how well you are coping and how difficult it must be for you, I find my "well" daughter hard enough work"
"Oh thank you" is all I can bring myself to say.
At first I'm pleased she has spoken to me, that was nice I thought.
Then I felt weird..... A total stranger is in awe of ME?  why? I'm just a mum feeding her baby. I don't want to feel as different as people make me feel.

I don't want little E to be different. I will probably embrace it as time goes on, but right now I don't want to accept that my daughter is gonna get stared at her whole life.

 When we got home we were laying on the floor playing and she was staring at me and it made me cry; happy and sad tears. I don't want anyone to make fun of her. I looked into her big blue eyes and I made a promise to her that she will grow up knowing that she is perfect, and amazing and the toughest hard arse cookie that ever existed!!

I can hear big D in my head saying "Stop Worrying!!!"

I'm so proud of her and I  just want to gobble up her cuteness, I don't want to dwell on her problems or constantly worry about them.

Es and Nana xx

We had a cup of tea and talked about her being asleep.

Little E slept for four hours this morning!
The first two were fantastic, I leapt around the house. flung open the windows and cleaned! I felt so energetic. I emptied cupboards of junk and scrubbed my kitchen work tops. Then I kept thinking any minute now she will wake up so everything was done with a real sense of urgency, just get one more thing done before she wakes up, I stuffed a load of washing on the machine, sorted out some washing, had a shower.....checked the baby monitor was working?
Yep still working.
So I dried my hair, had a good chat on the phone to my friend, moped the floors, hoovered.
She was still asleep??
Was she ok?
I went upstairs to check the sats monitor was working (it would have alarmed if it wasn't durrrr)
still asleep?
I now didn't know how to react. Was she ok? Bit sweaty and wheezing but sats were 97 and heart rate 110 all pretty normal for little E but it was not normal for her to sleep this long. I just couldn't relax, I imagined her all floppy, possibly slipping into a coma or something. I had a feeling in my tummy of guilt, maybe I should have taken her to the hospital cause her chest infection hasnt got better.
I sat and watched her sleep, then I called my mum to come and watch her sleep!! We then had a cup of tea and talked about her being asleep and wasnt it unusual that she was sleeping so long!
Mum went home.
I did an online food shop and she was STILL asleep.
I thought come on you silly woman get a grip she is fine she obviously just needs a really good sleep.
So I went and found my book, which was thick with dust (well I have been a bit busy!) Sat down feeling pleased with myself that the house looked pretty clean, I was dressed and hair done (miracle) and feeling quite excited at the prospect of reading my book,I curled up on the sofa, opened the book and then......
She woke up!

Note to self: enjoy the peace while you can.
Note to self: you could have had 4 hours sleep this morning you daft numpty!!!

the smile she gave me when she woke up was just perfect!

this child has a long list of problems........

Great Ormond Street hospital is becoming very familiar to me. It is a very surreal environment with a busy waiting room crammed with children of all different disabilities, shapes and sizes.
 Its the one place that you can look at a child and smile and they know they are not being judged, parents give a silent nod of understanding and empathy, and quite often I will pass a child who looks so poorly i get an ache in my tummy.
And it makes me realise that Little E is actually doing really well.

 Quick update on Little E: She is 9 and a half months and since last week has been sitting up on her own and loving her new Independence!  every couple of weeks she gains weight (not alot but its a gain) She is using her hands and feet brilliantly, she is making lots of sounds and they are starting to sound like mummy!!! She is at that clingy age and screams at anyone that's not family! and she is giggling now! still on oxygen and still getting nasty old chest infections but she fights them off pretty quickly.
So me and big D are proud at how she is thriving and developing.

The trouble is she has a very rare genetic syndrome called Escobar syndrome or MPS variant Escobar it means the same thing- its so rare that nearly all the doctors we meet have never treated a baby with this condition so they are guided by medical reports which usually paint a bleak picture. Under all their pages and pages of medical notes and long words that sound robotic is my gorgeous little girl, I wish they would remember that sometimes.
I know they have an important job to do but I always feel like listing all the problems has a major down effect on me, its written in her notes, does it all need to be said? negativity seeps through the pen in their hands!
Our last visit to GOSH was for a swallow study (xray of Little E's throat to see where the milk is going) and to see the hand plastic surgeon. 2 appointments at 11.40am and 2pm (left home at 9.15am got back at 7pm) The swallow study went well, not too traumatic for little E. I'm very happy, she drank some milk and ate some chocolate mousse, she did good.
 Doctor says "bad news I'm afraid" (why must they start a sentence like they are a mechanic doing an MOT on my car and have found a major fault "bad news mate, your gonna need a new 2valve multi cylinder blah blah blah")
The swallow study showed milk collecting in the back of her throat as her swallow is not strong enough to take all the milk down, and because when you swallow your airway opens its "likely" the milk is going on to her lungs, she is being referred to the gasostromy team (oh goody we haven't been to that part of the hospital yet!!) She doesn't have a very big "reserve tank" (car metaphor again!) so any extra strain or illness could prove too much for her.

 Well if that's what they think they why do we spend so much time at the hospital having tests done on little E? why is she prodded and pocked and needles and probes stuck in her and why is she wired up to machines, xrayed, starved, then force fed. why do we drive for miles and wait for hours for appointments?                why cant she just LIVE?