So that's that then

We said goodbye to our old house today. Officially. The mortgage company finally took it. 

I find myself in a somewhat of a muddle of feelings. Anger, sadness, hope, optimism. Enough to warrant a glass of wine or 3 anyway. 

The anger stems from the fact there was no easy way out. Have a disabled child, give up work to care for him and yep financially youre pretty much screwed. Giving up work kept him safer, allowed us to wean him from oxygen dependency, and gave him the opportunity to socialise and develop through groups and therapy. It was the right choice. But it came with a price. We lost the security of owning our own house. If I'm honest I lost a bit of pride too. Then I look at my children and think how wonderful they are and they are all that matter. Not bricks and mortar.

So theres our new house. Local authority housing. And with it many positives. A leak? They fix it. Adaptations needed? No problem. Last week a hoist system was put in nates room and on thursday we have builders in to make a hole for a through floor lift :) things that would have been damn hard to get in the house we owned. 

So although this year has been marred by bankruptcy and repossetion I need to focus on the positives. I just wish it hadn't been so hard. 

Thinking about school

This time, 2 years ago, school for nate was the furthest thing from our minds. We were being hit by awful probable diagnoses and couldn't think further than a few weeks ahead. 

I didn't buy clothes for nate in end of season sales for  use "next year". I didnt even by next size clothes.

I bought a black dress. Just in case. 

 At the back of my mind is always nate's breathing problems and lack of diagnosis. I would love to think that the worst is behind us. But that's a dangerous thing to do. 

And now I am HAVING to think ahead. Nates's statement is underway and we need to think about finding the school that can best meet Nate's needs. There is only one school in our borough that can cater for Nate, so we are considering out of area too, with all the stress and battles that will entail should it prove to be the best place. 

I'm torn between actually being a bit excited about seeing schools, and upset that nate's needs are so complex we have little (no) real choice. These aren't going to be like the schools I went to or taught in. They cater for a range of additional needs and their facilities will reflect this. 

 I imagine facing the reality of how Nate will be schooled will be tough over the next few days.  

Still, i cant help but smile at reaching this point. 

Where are we now?

I have neglected this blog. Again. Life has been busy. And we have been coping.

Thea turned 6 and had a lovely birthday. Year1 is going well and she is becoming amazingly mature, if somewhat subborn ( no idea where that comes from). She read in her Harvest Festival, and we were very proud!

When you have a child with complex needs or any addition needs the worry doesnt stop with the SN child. I worry about Thea. Is she dealing with Nate ok? What about school? Does she stress about things? Does she overhear things and not understand? Do we spend less time and attention on her than families with healthy kids? Does she feel left out? Is there any resentment? Does she tell me how she really feels? I know i know i could drive myself round the bend with this. (Ironially i have come off my antidepressants hurrah!)

Thea now has a SWAN sibling pen pal and i hope they will become great friends and be able to share stories and feelings. Though judging by Thea's first attempt at a letter the main conversation seems to hinge on Star Wars lego and One Direction *sigh*.

Nate continues to make progress at natie-rate. He now signs by hitting his chest when he wants a turn at something or to signify himself. He taps his mouth for food too. Because of this somewhat surprising but fabulous progress we are going to start Canaan Barrie on body signing with him! Small but amazing steps in communication.

Healthwise he has been well ( eek long may it last). Our biggest issues at the minute are his ventilation mask and his feeding. Nate has had the same mask since he was 4 months old and obviously he has grown. However the next size mask is huge. This means we are having to find a different style of mask to use which requires lots of waiting and experimentation, no luck so far, and there are very few masks to actually try. Nate's ventilation is still hugely important and when the mask leaks he doesnt ventilate as well and the ventilator alarms anytime he moves as it just doesnt sit right anymore.

To PEG or not to PEG

Feeding is still a nightmare. He won't take any food orally from anyone other than myself or Michael and needs top ups down the ng. The hospice are having a battle keeping the NGtube down during respite, and he is still so uncomfortable with wind build up which needs venting. They felt we should consider a PEG, and to be honest so do i. Im putting the ng tube down several times a day minimum, and 5 times one day last week. Our Paed disagrees, but we have the SALT, resp, neuro and hospice dr pushing for it. Our paed is lovely but clearly doesnt understand the everyday battle we have with food. And in addition simply having the NG is uncomfortble and he won't swallow as well, and is producing loads of saliva and now has meds for it. 

Home

I would like to say that our new home is decorated and finished... but that would be a lie! And there is more disruption to come. Next week we are having hoists fitted in Nate's bedroom, and we are waiting for the builders to ring about preparations for the through floor lift ( basically they will put a large hole in the ceiling/floor)
We also (still) have the old house hanging over us and have a lovely trip to court in a few weeks for the mortgage company to repossess it. Im sure that won't be humiliating at all.

All in all things are ok really.

its all relative, after all

Every little thing he does is magic

We are lucky in that Nate has a lot of input from our local authority (at this stage).
He attends a weekly physio group and gets home physio and hydrotherapy once a fortnight. He also goes to a sensory visual impairment group run by the VI team, and then a sensory group and development group run by portage. I have many criticisms of our local authority but group wise they are fabulous.
Nate loves his groups ( though we best not mention his sleeping through hydrotherapy today) and meeting other parents is a lifeline.
All these groups and input seem to be finally helping his development (combined with his flash super hero style orthotic suit not funded by LA)
While Nate has always smiled and laughed through his groups he has not really been able to join in. The first group we attended, in the beginning, was actually a total nightmare- I struggled to hold this extremely floppy oxygen dependent little boy so he could see what was going on around him. It was upsetting and hard but we carried on going just to get out of the house.
Gradually we began to access other groups too through Physio and portage. I became less worried about holding Nate, admitted my difficulty holding him, bean bags were offered and things became easier. Recently nates tone improved to a point where holding him wasn't so much of an issue :)
But now, suddenly, he's made a little jump in development. Last week when singing the welcome song he hit his chest in time to "here I am here I am" , he can now reach, pick up, and shake a small rattly instrument, and bangs a tambourine with delight.. Hard! He's also started to play with purpose and has demonstrated he understands cause and effect so the plan is to introduce switches to song time in the groups we attend to help communication!

We had a child development team meeting last week and they asked me how I felt things were going. I replied "really well actually". They looked surprised. But he IS doing well, relative to how he was, and what they thought about him. I don't expect him to wake up one morning and be "normal" I don't have any expectations.

So "every little things he does is magic". Well, to us it is.

What can we take away from the Paralympics?

My meaning here is mixed. 

The Paralympics has brought to our attention talented athletes. It has provided role models to disabled and able bodied people. It's brilliant to read of children like the daughter of the footballer Phil Neville no longer dreading their wheelchair assessments, or others thinking "they are just like me" or "i'd like to try that".
 We have been introduced to sports that require sheer determination and willpower. We have seen athletes react badly when things haven't gone their way. Channel 4 have billed this as "here come the superhumans" but most importantly it shows they are HUMAN.   

However, irritatingly, the media keeps harping on that the Paralympics shows what EVERYONE can achieve with effort and determination.  This worries me. Paralympians are high calibre athletes, fit and healthy. Not everyone with a disability, whether they wanted to or not, could compete in sport. A high proportion of disabled people in this country are sick and disabled. As is my son. My daughter now has some unreal expectations of her brother, who is unlikely to reach adulthood according to the experts. I dearly hope that our new hero worship of these athletes doesn't have a negative affect. Just because these athletes win medals and compete for their country doesn't mean they don't require support, therapy, adaptations, and financial assistance. And let's not forget how inaccessible our country can be to those with mobility problems.
Yeah an athlete may win gold in a wheelchair on a flat track but you try getting one on and off buses or kerbs!

What I hope is that seeing the humanity of a variety of disabled people on our screens will leave not just a legacy of sport but a more understanding nation. Where people don't nick disabled spaces, don't stare, don't accuse people of
being scroungers, where it's ok to talk about illness and disability.Where we treat people with learning disabilities with respect and not mockery.

Not asking a lot am I? 

We took our daughter there. 
The result was healthy dialogue about disability.

Paralympics2012 was AWESOME!

bubbles pop

Bubbles

I started talking about bubbles in our SWANUK group. My friend Hayley posted about her experiences here  http://swanfreddie.wordpress.com/

I feel as if we have been in a little bubble these summer holidays. We had our little family holiday. My daughter has spent most of her time playing with new friends she has made in the street and I have spent most of my time trying to help Nate learn to sit or persuading Thea to spend time with me. 

Armed with gaiters, a superhero suit and leg splints i have been physio-ing natie tatie several times a day and managed to make my chilled out little boy extremely cross.
My world has been this new house, and my children. We havent seen many people, we have just got on with our "normal" life, and it has semmed pretty normal. With the exception of OT home visits we haven't had any appointments or groups. We have simply pottered along.

Now i won't lie. 6 weeks with a very clever extremely bossy 5 year old ( no idea where she gets it from) who knows exactly which buttons to press hasn't been easy. She needs to return to school, for everyone's sanity. But the return to school pops my little normal bubble you see, and part of me has quite enjoyed being hidden away from world.

There's the school yard. Thea joins the big one this year which means more people to take time to get used to Nate and stare. 

There's mixing with people while out and about who often dont know us but like to "share" their problems and equally want to know everything about me and Nate. Old ladies in particular! 

There's the schedule. Its busy. Monday physio group, Tuesday portage or VI home visit, Wednesday am hydrotherapy or sensory, pm VI group, Thursday developmental group. These things are all fabulous. Both myself and Nate enjoy them but it can be exhausting. i need a glass of vino just looking at it.

There's the fact its going to be winter soon. *gasp* Nate has been off oxygen now for a few months. i know that he is bigger and stronger but i am terrified of winter coughs and colds. And lets face it theres always one toddler who leans over to get a good look at Nate and coughs all over him.

Then there's the biggie. The hunt for a suitable school for Nate. The statementing process starts in September for his schooling to start the following September. This is very positive. We never though we'd get to this stage. The professionals certainly didn't. However the key point in this is finding somewhere "suitable" for Nate. The most suitable place is outside the area which will mean a huge battle with the LA for funding. Schools in the area seem to deal with mild to moderate LD or PD. I have yet to see any evidence of how a child with complex needs is catered for. Nate is visually impaired, has no communication, poor tone, health problems, and needs constant stimulation. He is so pleasant natured that i fear he would be ignored, or his needs not met.

"LAA LAA LAA" sticks fingers in ears and head in sand.
Bring back the bubble.

a few days away from the chaos

We managed a few days away!

Yes, thats right, we had a few days away. And NOTHING went wrong! *gasp*

Seahouses-a lovely place, a cosy caravan, warm weather, sunny skies,  and happy kids.



Thea and Nate

Michael and Thea



Me and Nate

sunny day

Not a care in the world

 Days of bimbling along in no hurry, fish and chips, water fights, BBQs, the beach, Bamburgh, Holy Island ( Lindisfarne) and a few cheeky beers.

route to Lindisfarne

Viking carnage at the priory on Lindisfarne

No phone calls, appointments or assessments

                                  No ambulance rises and PICU.

                                 Just a normal family holiday :D 

                                           *sighs with relief*

That bloody form

Yes it's that time again. Time to fill out the DLA form.

Nates first form was filled out in hospital during a lengthy stay, with help from welfare rights, and his dr. It focused on his risk of death (high) and uncertain future. This form has been filled out with help from portage. It still contains " at risk of death" " constant care needed to keep him alive" and other really depressing similar things. This time however we add "profoundly disabled" and " multiple complex physical and learning disablilities" oh joy.

As if that wasn't depressing enough we get lots of ticky boxes to indicate help or prompting needed to do everyday tasks. No box for "extremely sodding disabled you arse and needs everything done for him". Which, in my mind, would simplify everything.

I know these forms are supposed to cater for a huge variety and severity of disabilities but it seems to me that in reality they relate to very few. It would be far easier to bullet point issues and how they impact everyday life rather than fit into narrow descriptors. Most parts I had to elaborate on and I am left with the striking realization of how much care nate requires day and night. It's all become normal to us. I must be more adaptable than I thought.

At this point I did start to write a very basic outline of our day. But quite frankly just looking at it wore me out so I have deleted it.
Hmmm now I know why I'm so tired

Run up to Nate turning 2

In hospital at the mo. Planned admission this time. Surgeon located and brought down nates testes. Not all the way, another op may be needed at a later date. The worry with Nate is always the general anaesthetic. Will he cope ok? Will he breathe ok? So we spent 2 hrs worrying and then were allowed into recovery. He's asleep at the minute and on a bit of face mask oxygen but seems ok. We will be spending tonight in hospital for observation so the lil guy has only had 2 nights in his fancy new bed in his new room!
It was a massive step putting him in his own room, but it made sense, and he loves it. The handset from the video monitor is still packed away in a box so we have just been putting nates sats monitor in our doorway to monitor him overnight.
So once we get out of hospital we need to focus on nates birthday! The house move chaos means we haven't bought him anything yet. Though we have booked his party at the amazing Alan shearer centre in Newcastle. ( worth checking out NE people). So it's a bit of a hectic run up to his party. I'm not falling apart which is a bonus.

In the space of a year

I have been somewhat absent from blogging. The explanation for this is the general chaos of trying to move house.

Anyway I wanted the chance to explain where I was this time last year compared to now.

This time last year I was falling apart. The build up to nates first birthday was had me an emotional wreck thinking about what was, and what could have been. I was having counselling which did help a bit. I was attempting to work 2 days a week and fit in all of nates hospital appointments and therapy sessions. But already the drop in hours was having a financial effect in us.

Nates second year has been a turbulent one. We've had picu stays and ambulance rides, me giving up work, bankruptcy, car repossession and the threat of homelessness. It's not exactly been a "picnic".

But where are we now? We have a lovely happy boy who no longer needs extra oxygen during the day but is still ventilated at night. He is learning to sit, is more vocal, and eating lumpy food! We have been given a house which has some adaptations and the OTs are sorting further ones. It's large, on a nice street (although a bit further away than we would have liked). The family have rallied round helping decorate, fit carpets, help pack etc. my daughter is doing exceptionally well at school and is confident and amazing. I have a gorgeous niece and an "almost" brother in law.

My husband is doing a fantastic job working tirelessly on the house during his holidays from work, getting it ready for us. Thank you Michael.

So now all we need is the new house to be finished, for everything to be packed, and to move in. What are the chances of nates 3rd year being a tad easier do you think?
Hmmmm.

Of houses and moving

You will, I hope, be pleased to hear that we have a house!
I can't express the pressure lifting feeling of knowing we will be ok. The house is large.... and a complete mess. I have been a bit absent from twitter and fb due to waiting in the new house for things, measuring, pricing up etc for new housey stuff and other general chaos.
My daughter loves the new house. She wants to go each night after school. It has a garden you see, and its on a street with a grassed area where children play. We currently live on a busy road.
It is further away than we had hoped to be and will be awkward for Thea's school ( which we don't want to change to minimize disruption) but will be worth it.
The house needs a massive make over and we won't move in until we have it nice. So now my thoughts are of packing boxes, carpets and wallpaper.

But it's a much more pleasant type of stress.

Some of the "before pictures"...

The appointments post

So last wednesday we had nates neuro appointment and today genetics.

The neuro dr was quite pleased with Nate as he is clearly making progress with his tone and development. He wants to give nates brain time to myelinate before doing another MRI so this has been put off for 6 months or so. The general feeling is that his muscle issues are more central ( brain orientated) than an actual muscle weakness). He implied that had Nate not had a clear genetic syndrome ( those pesky unusual features again) that he would hazard a diagnosis. But as things were he would be led by the geneticist.
The neuro always asks if we have the right equipment and this time suggested special boots to straighten nates feet ( which like to turn in) and a Lycra suit to improve posture, straighten his back, and help tone. Nate is also getting referred to ortho as his back is a bit wonky. Unfortunately Gateshead won't fund the Lycra suit. However we do have a pot of money through fundraising so we will be able to fund the suit ourselves. The suit has been quoted at £640 and will need replacing as Nate grows. This means constant fundraising. We are so appreciative of all our friends' efforts!!!

Today's appointment was with nates geneticist. When told Nate had the lump removed from his mouth, and that it had been tested, the geneticist was visibly gutted when we told her the results were normal. No additional "clues" for her. She noted that Nate was "thriving" ( bloody hell a positive!!!) but still had no clues about a possible diagnosis.

All in all I have stressed myself to high heaven for no reason. Stressed so much I've not slept properly, and my eyes have been going a bit dodgy and ive been feeling disorientated. Not good.

But there's always the house situation to stress about..., and the car.....

When battles get too much

I will be honest. I want to board up the doors and windows and hide from the world.

What I SHOULD do is start ringing people and getting very very angry. I have no idea where we will be in a months time. We have missed 3 payments on our mortgage, we explain every day when they ring that our circumstances have not changed, nor will they. I would like nothing more than one morning to wake up and find Nate sitting up in bed, breathing properly, babbling away, playing with toys. Fixed. I would go back to work, and everything would be fine and dandy. And now the phone calls have stopped. Next stage in the repossession process I presume.

Local authority housing is sparse. The right to buy scheme took away social housing that was never replaced as was promised. Only a few suitable properties come up each week, you bid, you wait to hear, your hopes are up, your hopes are crushed. This week was no different. We have urgent status but finished 18th. Apparently medical priority only counts on adapted houses ( not what we were told) we thought both medical priority and repossession together would stand us in good stead for a basic 3 bed house. Seems not.

I can't explain the hopeless feelings I have. I really can't. Friends have fund raised for sensory equipment for Nate, but we can't use it yet. Nate has a very impressive special bed in storage as he hasnt got a bedroom to put it in and it won't fit in ours.

I know I need to pull myself together, rally the troops and attempt to sort this mess out. But I'm just so worn out from dealing with day to day Nate stuff, the fear of appointments coming up, and everything really. Nothing is straightforward.

I wish the people who have some power would spend a day in my shoes and then say we don't need help ASAP.

My fear of optimism

I have had one of those bizarre textual conversations with my sister which has opened the proverbial can of worms ( not my sisters fault I hasten to add). The casual question of " how's Nate done today?" and me wanting to say " abso- fricking- lutely-brilliant" scares the living daylights out of me.

I find myself feeling optimistic. And I hate it. Optimism terrifies me. I feel it opens us up for a mighty fall. A shock. A blow. A sucker punch. Optimism would mean I wouldn't be prepared for such a thing. I would curl up on my bed and sob with gut wrenching pain ( again) and I panic that I couldn't cope. With such important appointments approaching I know I could walk in and face devastating news.

But am I doing Nate a disservice? I have always promised to celebrate his achievements-I shouldn't let my own fears hold me back. Should I? He's coping so well off oxygen. He's so happy and alert and, well, just lush and I want people to know and see that.

I can't wait to take Nate to his groups without nasal cannula stuck to his face. I can't wait for everyone to notice and tell him how clever he is. This could be his " moment" the walking moment, talking moments etc we probably won't get so I should be dancing about not nervously chewing my nails!

Honestly sometimes I'm my own worst enemy. But I know my son. Rules mean nothing to him and steps forward can easily turn to leaps backward.

A picture blog- special siblings

Holidays- when day trips are made easy

The husband took a week off work and we were desperate to have lots of family time together.

For us this didn't mean getting on a plane and jetting off or even staying over somewhere in this country. Our last attempt at a holiday ( to the lake district centre parcs) was a complete and utter disaster. 45 mins into the stay Nate was in an ambulance and later was intubated, ventilated and transported back to the north east for a week long stay in picu. brilliant.

Anyway day trips are hard enough ( as I have mentioned) so we are sticking to those for the foreseeable future.

Right I've gone of at a tangent. I wanted to talk about access- Good disabled access makes everything so much easier and everything less stressful.

The zoo was a nightmare- uphill, tiny toilets, packed cafes ( where a woman who struggled to get past my SN pushchair with oxygen on it shouted I should be made to fold it up). Though we still had a fabulous time there I must add. In contrast the Hancock museum ( great north museum sorry) had parking at the museum, a lift outside from parking to a wide entrance, all doors easy to get through, and a massive lift inside to the other floor. Everywhere was easily accessible.

Now these two venues are completely different but the difference it made to my stress levels was huge. Before planning any trip I think of access and feeding arrangements , especially after a difficult trip to bamburgh castle ( yes I know I'm stupid- castles are soooo not accessible!)
But you live and learn.

Terrifying appointments

A letter came today bringing with it a genetics appointment for Nate.

I was expecting it. We said we'd be back to see nates geneticist around the time he was two. But, you see, this is a biggie. He has a neuro appointment the week before and both neuro and genetics want to pool their ideas combined with another MRI and a muscle biopsy and come up with a diagnosis.
I have confidence in our neuro. He never mentions the future. Never says what Nate will or won't do. Just always asks that we have the right equipment and therapy. We first met him when Nate was 1 week old and we see him every six months. He notices everything- even subtle changes in how Nate holds himself. Our neuro wants Nate to have another MRI. He's already had 2. This is necessary as, apparently, the white matter in the brain should be laid down now. And damage that may not have shown previously may show now. So I'm really looking forward to the general anaesthetic and then the results....

And then there is nates geneticist. The less said about this person the better . But on a professional level I would like to say- my son is not a piece of meat and we are not to be talked down to. Please don't harp on about his odd/unusual/dysmorphic features. When I'm sitting kissing the living daylights out of him he's my perfect little boy and I don't see ANY of them.
Please don't suggest any more diagnoses he "might" have but you're not sure. If it involves more X-rays, scans, blood taken we will be out that door. We have been scared and terrified by you before. He is a person-a lovely little boy. Please treat him as such.


These 2 appointments may tell us a lot or a little. I'm not sure which terrifies me more. Part of me is happy bimbling along, dealing with things day by day week by week. But there is the shadow of the unknown hanging over our shoulders all the time. The-what will happen? Will he? Should we? question. I have had the pleasure of meeting (via fb and twitter) several parents of children who have a diagnosis but it's something so rare that having a name doesnt really help. Although they, when asked, can give proffesionals the name of their child's disorder/syndrome/special quality, the professional looks blank having never come across it before. I hadnt thought of that. To be honest it's the life expectancy thing that we would like to know. But would we? I mean could we prepare? Can you? Would we do anything differently? No probably not.

You see I'm rambling on. This is what these big appointments do to me. Things I try not to think of are brought to the forefront of my mind. I know I need to think of the here and now and be pleased with how Nate is doing but I'm terrified.

Military maneuvers- a day out #definenormal

Another post for the #define normal blog hop by
www.justbringthechocolate.com

It's the Easter holidays, my husband has the week off work. What is more normal that having family day out or 2?
Hmmm.

Well the only difference is the planning involved. We wanted to take our little darlings to Edinburgh zoo. This would mean a full day out, about 6 hrs total in the car, 2 liquid feeds for Nate and solid lunch. We also needed to fit in 2 x 30 mins off oxygen attached to his sats monitor.

(I'm blogging from the car on the way home by the way)

We had to be up early to feed nate and let him have 30 mins off oxygen before we left. We took 2x 60 ml syringes, ph strips, 2x fortini, spare nasal canula, hyper fix, suction machine, full oxygen tank, boiled water, lunch, then the usual nappies wipes etc

Disabled spaces were close to the zoo entrance- great. However I'd forgotten how hilly the zoo is. Jet propelled natie pie would have been good!
We are all tired but had a great day.

Now we just need to find an upmarket restaurant ( McDonald's) for tea and another 30 mins off oxygen

So oxygen weaning has begun

Well we have started the weaning process. Not the usual baby weaning of going from milk to food, but from a trickle of extra oxygen to just air.

Nates first week of weaning will involve 2x 30 mins of being off oxygen. The ccn checks him monday to check his weight. Nate must continue to gain weight for the weaning process to continue. He must also be able to keep his sats in the 90s and not struggle.

Today is day 3 and because this is such a massive event I am blogging about it separately in www.oxygenweaningdiary.blogspot.com

Fingers crossed.

We expect a bumpy road

I'm playing "would I rather"

Would I rather?

When Nate was first born and didn't feed, move, open his eyes, react to light or sound, or breathe and we were told bad news after bad news I started to play "would I rather?"

This is the game you play to stop yourself spiralling into despair at the incubator side of your son who you you are told has "a serious genetic condition". It goes like this..

Would I rather he were deaf or blind? Please God not both. Maybe I could cope with one? Could I cope with both?

Would I rather he was severely physically or mentally disabled? Please God not both. Maybe I could cope with one? Could I cope with both?

Would I rather he enjoyed life or had a longer life? please God can he have both?

When faced with one bit of bad news I would think well yes maybe he wont be able to do that but maybe he will be able to do this. Maybe life won't be like that but maybe it will be like this. Over time the stakes have changed many times and Ive sat by his side thinking I don't care about his disablilies but please God let him live.

Anyway suffice it to say I think we came out of this bartering system quite well. Nate is amazing and I am thankful for every day we have with him.

Saying that however today's appointments made me think back to those days in the beginning. I bumped into nates respiratory consultant who told me his tracing shows hes still not ready to come off oxygen. then I had a tired grumpy nates eyesight assessed. This did not go well. The summary being they don't expect anything from him so will only see him yearly from now on. I got the sympathetic looks. The "how are you coping?" question. It all made me more aggravated and feel more defensive of my amazing child.

So I left playing "would I rather"
Maybe he won't be able to see, but maybe he will be able to breathe properly.

Why i love our "weekend normal" #define normal

Why do i love our "weekend normal"?

This post is part of #define normal blogging challenge a blog hop set up by http://www.justbringthechocolate.com/define-normal/


Anyway, to understand why i love our "weekend normal" you need to understand weekly normal which goes something like this

Monday- physio group AM, lovely leanne from rainbow trust helps PM ( i do shopping)
Tuesday- CCN nurses sats check and weigh Nate AM Visual impairment sensory group PM
Wednesday- portage or home visit from visual impairment specialist AM ( alternate weeks)
Thursday- Development group or hydrotherapy AM, Physio lunch time, Sats check PM
Friday- HCA helps me AM, 

In addition we fit child development, paediatrician, neurologist, respiratory, feeding, opthamology, OT and hearing regular appointments. Then there is the ordering and pick up of prescriptions, oxygen delivery, feeding equipment delivery and incessant phone calls to make and recieve.

BUSY is not the word.

So weekend normal? "What is that" i hear you ask. Well, it is basically NONE OF THE ABOVE.
Weekend normal begins with Nate shouting at us to get him up and get his mask off.

The shouting is mainly "rah raaah rah!" "maaaaaaaaaaaaaaam" roughly translated as " get me up you pack of utter bleeps". So nasal canula on, mask off, humidifier off, oxygen concentrator off, ventillator off. Nate in bed. Then thea attacks us and we all have lovely snuggles.

This is the most important part of the weekend. Time together without rushing about. Part of our life which would seem the most "normal" to outsiders looking in.
AND I LOVE IT

Quick blog post- loved my husbands face

I loved my husbands face yesterday when I said "look look at Nate" and promptly sat Nate up facing me on the floor so he couldn't use me for support. And Nate managed to hold his head and keep his back straight.
"look look at this" I said and flipped nate round, gave him some support to straighten his legs and he put weight through them!
My husbands face. Priceless :)

Frustrations and amazement

Frustrations

I am writing this from Nates hospital bed. Yes another hospital stay.

frustration 1
We know when our child isn't well.
As we left hospital on Sunday Michael stated "we will be back". Neither of us felt comfortable leaving hospital but a bed shortage meant we were shoved in a bay on a random paediatric ward and left to ourselves. We went home as the drs were happy with Nate and discharged us.
Suffice it to say this wasn't the BEST decision ever made as yesterday my son decided to drop his sats and turn blue. By the time I'd hoofed up the oxygen and rang good old 999 he had picked up. The paramedics were lovely and Nate grinned happily at them ( little sod). So we had an ambulance ride, 4 hrs in a and e and then back onto the random ward but at least we have a room now. He is being observed. His oxygen is coming down gradually and he is getting bored ( always a good sign). His improved sight means cbeebies is of interest to him now which is amazing.

Frustration 2
We finally get upped to "urgent" on the housing list and they bid for us on a house. Michael drives round, finds thehouse has some windows boarded up, others smashed, and the garden broken into. Hmmm not convinced.

Frustration 3
I now have a beautiful baby niece called kara. And I've only got to see her one the day she was born. I want to be there for my sis and support her.

AMAZING

I have started a bit of fundraising for Nate. I think we have spent 18 months trying to keep him alive and fighting for the basics he needs to function. Well that's not good enough. He needs stimulation, he wants to develop, he wants to sit and I need to start doing as much as I can to help him. It's my job. My daughter told me she was going to "tell her school she was baking cakes and selling juice for her natie" and then got a £2 coin from her money box "theres £200 for natie mam" . I tried not to cry and just about succeeded.
What has amazed me are my family and friends who are helping support us. We have had large donations already. my junie friends are doing sponsored shenanigans for natie, other friends are arranging fun days at work and doing their very best to help. I love you all xxx

St Oswalds Hospice

When you realise your family needs respite it is a massive thing. To actually get that respite is another huge challenge.
I cried down the phone at the children with disabilities team from work, and pretty much had to humiliate myself. they wanted to know why family couldnt help. why a nurse couldnt sit up with him in our house. why he couldnt go to foster carers. All of this i have mentioned before, and to be fair, is pretty self explanatory. Fortunately we had a team of childrens community nurses and portage workers behind us, refusing to let us buckle, and writing reports in our favour. We were granted respite.
Being granted it came as a shock. We were left feeling worried to leave him, pleased to get it, sad he qualifies for it, and generally apprehensive all at once. Thea in particular had concerns. We had a family visit and felt reassured about the hospice. Everyone seemed competant and empathetic. But still we felt nervous.

The first stay
We arrived at 2pm armed with a car full of equipment, and a suitcase, oh and lots of theas toys. We met the nurse who was to look after Nate that afternoon and very quickly felt at ease. Its strange to describe but you kind of absorb the chilled out atmosphere. Our nurse took great pains to get to know us and nate. his habits, what he likes etc. but whats lovely is to watch people make a fuss of him, to want cuddles. Most people are scared, and yes i know these were nurses but it didnt feel like that when they fussed and snuggled him and i beamed with pride.
Thea took charge of our room key after an hour of aclimatising herself. unpacked, and made herself at home. She spent ages trying on the dressy up clothes, painting, glueing and sticking, playing basketball, playing in the snow in the play area, and yes generally getting lots of attention.

Nates time there involved the sensory room, music therapy, hand and foot massages and lots of cuddles.

I stayed in his room the first night and was brave and left him downstairs and stayed in the guestroom upstairs with thea. thea, who ive discovered fidgets all night and grinds her teeth. delightful child.

We have to stay overnight until nate settles there during his stays. but we were made to feel that there was no hurry to progress to leaving him there. no pressure, just support.

We left feeling relaxed and looking forward to our next stay

Thankyou St Oswalds Hospice and everyone who raises money for them

Special saturday- "support from team Nate" ( inspired by @tricky_customer)

Go team!

So where do we get support? The answer to this question is "from a multitude of sources", some offered readily, some begged for.

Friends come in different categories..

The ones i see. The ones that ring/text when things get bad. the ones who visit us in our many hospital stays bringing emergency burgers or lovely feasts. The ones armed with costa coffee. The ones who drop by for a cuppa and a chat or invite me for drinks. You are appreciated!

The ones i dont see. My facebook friends. My junies ( i love you all) you are hilarious and always there for me ( see post about "friends ive never met") New SWAN people. Twitterers, my goodness, what a support network. Lovely people, spread far and wide. tremendous support. My old DIS peeps. scarey how long weve known each other. everyone having a tough time.

Little em, a special category for emma who is always there. text her probably at least twice a day. :)

Family
Even when they cant really help with Nate physically, they are there emotionally for us.

Professionals
i am in love with our portage team. lovely lovely ladies who are always positive, helpful, and there running groups, doing home visits and generally being lovely. Have i mentioned they are lovely? They get cried at often too!
our community chidrens nurses. no words really to explain how fab and supportive they are.
Children with disabilities social worker. had to beg for one. she seems nice. we will see how much she can help us.
Paediatrician. hated her with a vengence when nate was first born. every day in scbu she suggested more tests, more things that were " not typical", the "bad news queen". this later changed to grudging respect. and now complete respect and i genuinely like her. she coordinated services brilliantly when we were discharged from hospital and is very supportive.
Ward nurses. fab fab fab. Know us and nate very well.
Respiratory consultants. again bearers of bad news. guarranteed to have me in floods of tears on a regular basis. However one saw nate at 5 days old and knows and appreciates just how far he has come.
Neurologist. lovely man. Always positive. bit too fond of mris.
Feeding/dietician/SALT. very experienced. dietician obsessed with weight gain tho and annoys me at times. probably because she is right and i dont like to hear certain things.
Vision. Opthalmologist didnt refer nate to VI community team. grrr.VI team brilliant and so highly skilled.
Physio/OT. Brilliant lovely people. they fight for everything we need.
The health care assistants and rainbow trust who come to our house and give me "time off" or time with thea. They have made such a difference in our day to day lives.

The Jeffares household
We support each other. Thea keeps us sane. we would have cracked up long ago without her!