Then and now

This is a post about SWANUK.

It's a bit of look back over the last 3 yrs. I hope you can see how SWANUK have helped us along our path and vote for them in the national lottery awards http://www.undiagnosed.org.uk/the-national-lottery-awards-2013

Back in the dark days 

This is how I think of the beginning of Nate's life. 

In recovery after Nate's birth

Thea with Nate

We were gifted a very special child. One who was so deeply reliant on us we thought we might buckle.
Nate was born on time and looked an odd colour. His body was frozen in a " frog leg shape" and he did nothing. Eyes didn't open, no responses to light or sound, not even to those hospital bins that crash closed. He didn't make a sound. It was 3 weeks before SCBU nurses told us one morning  they had heard odd noises coming from his little room and went in to find him actually crying, he was showing he wanted food. At that stage too his little body had begun to try to move-legs but nothing else. He was moved out of the incubator but needed oxygen and an ng tube for feeding.

 

We came home with oxygen. To enjoy the time we had together, which was implied wouldn't be long. I did things like buy a multi functional black dress, just in case. That first year we had many probable diagnoses, all involving short lives, none of which it turned out Nate had. At 3months old Nate went for a sleep study in hospital, he emerged many many weeks later with a ventilator. Again we were told many truly dreadful things about his future. Nobody expected much from Nate, and we thought the worst but hoped for the best. Nobody could tell us if his many problems/issues would improve. Nobody gave us hope only encouraged us to "enjoy the good times". I desperately tried to find people like us. People who were caring for a child and were still looking for answers. I was devastated when I found the old SWAN website was inactive and set up my own mini forum to try to make contact with other parents (without much success). There I found my now good friend

 http://littlemammasaid.blogspot.co.uk/?m=1

Thea and Nate when we escaped SCBU

Later we found that SWAN had been given 

lottery funding and I was one of the first to join 

the SWANUK facebook group. For people like 

us who have children with undiagnosed genetic

 conditions having a way to talk things through 

was a life line. Myself and little mama bonded 

over our swans abilty to turn blue and stop 

breathing, albeit for different reasons. Our little 

group of parents grew slowly at first and we 

shared experiences, testing processes, 

hospital stays, and hope. Each of our children 

is different and we celebrate each SWANs 

achievements. Simply seeing a child take 

longer to reach a particular milestone, but get 

there gives us all a little bit of hope.

Nate during one of his many hospital stays

Gradually Nate became stronger. He started 

to hold his head , he rolled, he took interest in 

his surroundings, he regressed after dangerous 

and life threatening respiratory infections, and 

SWAN parents were there every step of the 

way with us.
SWANUK grew more, and local groups began 

to form. SWAN parents managed to meet

 nationally and locally. Information and advice

 was cumulated and added to the new SWAN 

website ( which is full of HUGELY useful 

resources and information. I found twitter 

and started to search out other SN mams 

and read their blogs.

 I found http://www.lookingforbluesky.com/ 

who showed me how to blog and who also 

has a young person without a diagnosis. 

Blogging was therapeutic and helped me work 

through my own issues and difficult times; 

leaving work, declaring bankruptcy, moving, 

and getting on with living. We went on local 

TV to raise awareness of not having a diagnosis.

Now

My family, by Thea aged 6

Well now I have a little boy no longer on daytime oxygen, but still ventilated. He rolls and laughs, hits toys and enjoys sensory rooms and textured things, and can sign for himself, more and food. Nate has just had a gastrostomy for top up feeds but has been wolfing down solid food. He can hold a spoon and try to feed himself. He is happy and loves us. We have fought and pushed for the "right school" and "right equipment". We took him to Brainwave ( a place for therapy we would know nothing about with SWAN parents discussing it) and doctors actually think his future is brighter. A stunning admission after constant gloom. Living without a diagnosis is hard. We love Nate for who he is - a diagnosis wouldn't change that, but it could help professionals who treat Nate understand him better, and could give us an idea of what to expect in the future.

Yes he is classed as having PMLD, complex health needs and a visual impairment, but he is amazing.

Concentrating

Thea tube feeding Billy Bear

My beautiful boy this week

 

Turning 3

Nate turns three tomorrow. Which in itself is quite an achievement. 

Naturally I look back to his birth with some wobbleyness ( a new word for you). At the time the wondrous euphoria of his birth was quickly met with more and more bad news, more tests, more theories on what was "wrong with him". 

What strikes me most about that time is the sheer horror I feel at what that couple ( us) went through. I say " that couple" as we have changed an awful lot in the last 3 years. You can't go through what we did and emerge unscathed. You cant be told the things we were told, watch helpless at his cotside, cry yourself to sleep every night and try to keep on living when truthfully then ( as now) the future is uncertain, and not be changed. There wasn't anything family or friends could do either. Everything felt out of our hands. I like control. I like to plan for all eventualities and this lack of control sent me into a spin I don't think I came out of until Nate was almost 2. 

What frustrates me most is that I have been sat looking through his baby photos and instead of nostalgia it brings back feelings of pain and grief. I can't say " oh remember when he did that?" Or "do you remember when we went there?". " look how happy we are" etc...

Don't get me wrong I don't feel sad about "now". I am stunningly happy with Nate and how he is. He amazes me often and just because we aren't celebrating the typical milestones doesn't make me any less proud. I do, however, feel sad looking at the woman on the pictures. I want to give her a hug and show her happy parts of the future. 

The gastrostomy

Nate is a boy who didn't move, show any response to light or sound, or any interest in feeding. 

Our SCBU stay involved trying to get Nate to feed a little bit from a bottle. We came home and worked on this even more and on week 6 the ng tube came out and only went back in when he was ill. 

Time went on and Nate grew well but long and skinny. He drank high calorie milk but if he didn't have good "burpies" as we called it he would struggle sats wise and vomit. On one hospital stay we found we could vent his wind with an ng tube and have a happier boy. The ng also allowed milk top ups which enabled him to be weaned from daytime oxygen ( during this process weight is monitored closely. The ng meant we could get extra calories into him).

Time went on and solid feeding went 2 steps forward and 3 steps back on a regular basis. We continued with the ng as a back up. During times of illness- even a cold or ear ache, Nate would refuse all food and we needed to use the ng even more. 

Over time Nate became even less tolerant of the ng tube. He sucked down even more air adding to the windy issue. He pulled the tube out frequently sometimes 5 times in a day. Finally we were listened too that feeding would be a long term issue for Nate and we needed a long term solution. We had a failed endoscopic peg insertion in January but had a successful lap assisted part open gastrostomy on Friday. In addition to this Nate has even been holding his spoon to feed himself!

Hopefully the start of good things feeding wise. 

The brainwave post

Day 1

Nate has conked out on his ventilator. Hoping he has a decent night for the sake of the people in the hotel rooms either side of us. Michael has prepared the staff that they may get a few complaints....

So. We set off at 6am. Nate was full of beans in the car but promptly fell asleep when we arrived at Brainwave in Warrington just after 9am. This actually worked out ok as we spent about an hr going over Nate's birth and history since then. Then the assessment began. The Physios examined Nate and made notes on all of his joints, muscles, and tone. Then they tried Nate on different pieces of equipment  and in different positions- watching how he interacted and responded. This was a long tiring hour and a half for Nate, but he did really well and was quite animated until the last 15mins. 

After a break for lunch the Physio came armed with a basic therapy plan for tweaking and some more ideas. We went through the plan, and tried some more techniques. This was then followed by time in the sensory room. Nate managed to hit a switch with purpose to turn the bubble tube on several times. He spent some time on wedges, and then discovered the interactive floor. Words cannot describe how much he loved this special floor. On the piano setting he was moving his arms and legs to hit the keys, he stilled and followed the gems on a different setting, and watched the fish. 

Day 2

We have made it home armed with equipment provided by Brainwave.

Nate's ability graph. 

The black line represents what a child Nate's age should be doing. The red line shows where Nate is at the moment, aged almost 3. It isn't anything I didn't already know and is extremely useful to have. BUT, well, you know... 

Anyway, day 2 consisted of tweaking the programme and filming all the exercises for the DVD. Nate did actually sleep well the night before so was quite awake and interested for well over an hour and then started to object. Then wee'd all over his Lycra suit which wasn't particularly helpful! He had more time in the sensory room after lunch but we could tell he was worn out. We had achieved everything that was needed so were free to go with a return date in 6 months for a reassessment. 

What stood out was the wealth of experience exhibited by the staff, particularly with complicated little monkeys like Nate. The programme they produced isn't ground breaking. It isn't supposed to be. But what we got was a comprehensive personalised plan which targets all of Nate's issues- sensory, muscle tone and vision in a coordinated way. This is totally different from anything  he has accessed in the community. In addition all exercises and positioning are explained in detail and specifically for him and you have time to practise each part of the programme and become accustomed to it. 

We aren't expecting dramatic change in Nate. We went with the aim of getting a thorough therapy plan, a different point of view on Nate. Community physios are overworked and are responsible for too many children. Their time has to be spread too far. Our trip to Brainwave allowed Nate precious time with a Physio and the resources needed to do a programme built around Nate. 

I feel I know what I'm doing with him a bit better now. I've said previously that our complex children don't come with an instruction manual and often you feel you could bloody well do with one. It's a steep learning curve that keeps on curving....

I spent the first year and a bit in and out of hospital with Nate, trying to keep him alive. Trying to fight for him. The year after that was fighting for the family. For somewhere to live. Then it was fighting for school. The right school. A safe school that could cater for VI and complex health needs and PMLD. Brainwave? Well brainwave is what I wish I could have been doing with him since day one. Not an instruction manual, more like one of those recipes you get and add to a file ( a Nate file if you will). A file that should tell me all about Nate. All about how to nurture him. How to help him reach his potential, whatever that may be.

 In a way it's all a bit selfish helping diminish the guilt I feel most days about quite frankly being out of my depth.