New feeding regime

It was pointed out, in hospital this week, that Nate has far far less fluids per day than he should be having. I was actually shocked at how little he was getting compared to what he should be getting. The difficulty has always been tolerance but it would have been nice if someone had mentioned this deficiency prior to our stay. 

 Over the last year as we changed feeds and tried new things I specifically asked what fluid intake Nate needed as we were reducing milk intake (he was struggling with air and his ng) and we were told " well you'll know if he's not getting enough" . Well clearly we didn't. I mean he has been functioning and seeming ok but it can't be good for him can it? Crying at night- have we found a potential cause in thirst? 

In hospital we tried overnight feeds ( which he hasn't tolerated in the past, but thinking back that was with his ng tube not gastrostomy) and combined this at home with new hand splints that ( so far) he can't get off. It's a slow overnight feed which means he needs less ( or no) milk during the day. Pushing more purees and water flushes for fluid intake and guess what?.... It's actually going well. I think overnight feeds are the way forward. 

When Nate is awake during the course of the day he swallows such a lot of air that it requires frequent venting, however Nate is far more settled during the night. This make be linked to him recovering from his infection, but I'm staying positive. I discussed my wish to totally BD with the dietician at hospital and she said that basically dieticians aren't allowed to officially endorse BD ( blended diet) but she gave an encouraging look and pointed me in the direction of FB and internet support groups. ( already sorted that bit out). So something to think about anyway. 

The crapness of being always ( mostly) right

If you know me ( as in have physically met me) you will know that I am down right stubborn, think I'm always ( mostly) right, and don't EVER like to admit that I'm wrong. Even if I am ( which of course I wouldn't be).

I can visualise Michael nodding and sighing at this statement

When it comes to Nate I try to remain cautiously optimistic BUT I like to have a back up plan. I like to be prepared. Just in case, you know? A clear course of action makes me giddy with glee, a slight exaggeration I suppose, but it allows me to function in society. Kind of. 

Sometimes pressurising professionals to join me on my wavelength and help formulate a simple plan can be like banging your head against the proverbial brick wall.

 " oh we don't need to plan for that" 

" oh that's not going to happen anymore" " why would he need nursing at school? " etc 

It must be quite easy for them to pass off " a good spell" as "the new Nate". And while I remain optimistic about these things I have to be realistic as the back of my mind retains images of a purpley Nate being ressusitated by my husband, ambulance rides, Nate with wires in and out of his little body, Nate intubated and on a ventilator, and professionals bagging him. So when I'm told he's made good progress health wise I nod, smile and then plan for when he does these things again anyway... ( all the time secretly hoping I'm proven wrong) . 

The advantage of being a pain in the backside who always thinks they are right is having the balls "cough" confidence to disagree with pretty much everyone about your children and what's best for them. 

I've learned to say "no".

 I was late to this party though as Michael has been disagreeing with everyone about everything from the start ( no surprises there, it's nothing new for him..) and we would sometimes fall into an odd "good cop bad cop" routine without even thinking about it. Clearly now I've picked up a useful disagreeable habit. 

Note this is only a problem if you are wrong which obviously I never am... 

Things I have been stubborn about ( so far) : 

-Insisting he went to a school with a nurse and bags of experience with children being, quite frankly, a bit dodgy. 

- I wouldn't have our oxygen removed from the house. It remains for use in an emergency. Likewise school needed oxygen and guidance ( the same plan as ours) on when to use it - sats in the 80s give oxygen and get to hospital. Not as our paed worried- " well people would be putting him on oxygen for just anything". err no I think you've missed the point there.

- unusual episodes of laughing and staring are not just "part of Nate" and after much pushing we have a focal seizure diagnosis and start treatment next week. 

So yesterday after school when Nate did something he hasn't done for a year and a half we were prepared for it.  He hasn't " grown out of it" at all. He spiked a temp of almost 40 dropped his sats to low 80s and HR was 170- I gave emergency oxygen and waited for an ambulance as the next stage in this not so merry dance is typically an increase in oxygen requirements and eventually a need for extreme measures ( bagging/ ventilation/or less scarey humicare ) and  it became clear I couldn't get him to hospital safely.  I realised too that if he had done this an hour earlier, school would also have known how to act. 

This is one time I wish I had been proven wrong, but guess what? I wasn't. 

I'm a bit cross Katie Price

http://m.bbc.co.uk/news/blogs-ouch-24763564

In this article Katie suggests parents of disabled children are "ignorant" " don't want to look for help" and are "lazy" for not looking for and accessing the support that is apparantly out there. Oh and that we expect the help to come to us.

 Now I have no interest in Katie, Katie books, Katie shows, Katie's boobs etc. I know she can't understand what it's like to live with a SN child WITHOUT money. She won't have to wait months for OTs and physios and equipment reps to decide on equipment, then wait for the paperwork to go through and eventually get it at which point it's almost too small and the process starts again. I'm sure she didn't have a battle for housing adaptations as many people do. I'm sure she has teams of people to decipher and fill out her forms. All of which is money related, and we know vast amounts of money can make things easier, and I'm not wanting to sound bitter here. 

My issues with her comments are related to the fact that she is liked and loved by many people. People who will listen and believe her thinking she knows what she's talking about. So not only are her comments insulting and not based on fact, they are actually potentially damaging to how we parents are viewed.

Here are my thoughts. 

• when you've had no sleep ( no nanny to see to your child during those pesky awake times during the night), endless appointments at hospitals, those phonecalls you have to do yourself because you don't have a PA, and then doing the day to day household stuff it's hard to "go look for the support"

• accessing advice and support for you and your child regarding new symptoms, behaviours, things like OT, Physio and SALT can be difficult. Generally it involves getting someone to make a referral, waiting lists, and then being put on the caseload of a (usually) competant person who is too busy to give you what you need so you spend half your time leaving messages and waiting for them to ring back. 

• it's not lazy to think it might be nice for help and support to come to you, particularly when things are difficult. 

• help and support come in many forms- things like respite, help in the home and direct payments require assessments ( plural) from social services. That's if you can get them to speak to you, if you can get them pinned down to do the assessment, and if you meet the criteria for accessing help. These criteria aren't normally shared and you will get fobbed off and dismissed a lot. You then need to muster the energy to keep at them until they cave or you break down and then, maybe, you might get something. 

•Once you access a service chances are your situation will be reassessed frequently to try to take it back off you. 

• any support services, whether via charities or social services are dependant on their budgets. Those budget cuts you may have heard about Katie? Yes those. It means we get screwed. 

• help and support aren't freely offered or easy to find out about. Unless a professional involved with you is in the know, or you have been pointed in the direction of a carer forum or support group ( again IF you've found the time to find these- more of this being "too lazy" to find help) you will be clueless about the types of support potentially available.

•oh and I almost forgot- everything is a postcode lottery! 

Add to this normal family life, other kids, jobs, tiredness, stress and then a sick child...

DO WE STILL SOUND LAZY? 

Cautious optimism

Just over 3 years ago I took a small unusual looking, floppy, oxygen dependent boy to a sleep study. A sleep study is a "routine" investigation for children with neurological problems. It involves stretchy bands around the chest, oxygen and carbon dioxide monitoring, and sometimes nasal flow monitoring. Nate's was performed at 11weeks because of the severity of his difficulties. We had been told some heartbreaking things about Nate already but after that sleep study night, instead of getting to go home we embarked on a very long hospital stay. The sleep study results explained that Nate didn't breathe properly when asleep- he had dangerous central and obstructive sleep apnoea. This led to dramatic drops in oxygen levels which did not self resolve quickly , and extremely high carbon dioxide levels.  I'm a science teacher and I had no idea of the effect of high levels of co2. Our little boy just lay there- the carbon dioxide made him extremely lethargic. A respiratory team doctor talked us through their plan- they would try administering CPAP using a ventilator and a mask. I was in bits. I'm not ashamed to say I sobbed my heart out. The lovely doctor was very supportive explaining everything but I simply couldn't take it all in. I couldn't grasp the idea of needing a machine to breathe. I'd only seen machines like that on tv with people intubated in intensive care. But that night Nate tried a few hrs of CPAP 

the following day our son smiled for the first time. 

That was the clincher. The "thing" that not only made Nate's need real but made  the treatment worthwhile. Not only could it "fix" nate's co2 and o2 levels but it gave us a result we could see and appreciate. It turned out that CPAP was insufficient and BIPAP was needed instead. 

However ventilation did not prove straightforward. 

Nate would thrash as much as his little body could to fight the mask. He would then stop breathing and turn blue. It's an odd colour to describe. More purple really, and etched in my brain forever. The plan was that we needed a week without him needing bagging to get him home. Many weeks passed with these "events" still happening and we had to discuss getting a tracheostomy for ease of ventilation. We put this off and asked for more time. Not for fear of the trache, but because Michael had faith that Nate could do it. Eventually we came home. Night one was fine, night two involved resuscitation and an ambulance.  Eventually a new mask appeared and from that point on ventilation became safe!  Yes he's had blueys since, but not due to the machine. We think the old style mask shifted as he thrashed and fought it, blocked his tiny nostrils, and for some reason Nate's brain panicked and shut down. For a long time after he came home with the new mask I was scared to be alone with him at night incase it happened again. I made Michael put the mask on him and then I would check his work ( this drove him mad). Nate had rocky times with illness where the ventilator proved no use even on 12l of oxygen, and humicare was required. But it has made a huge difference to his life; helping him develop and keeping his lungs clear. 

We became accustomed to the ventilator and it's soothing sounds. (When Nate started having respite away from the home none of us could sleep as it was so quiet) Gradually we became confident in his mask and using the machine. It became part of the bedtime routine. Yes there have been times I've wanted to put my fist through the bloody machine for its alarms but it has changed our lives for the better. Apart from being extra baggage to lug about, and the fact not all hospitals have staff trained in its use, it didn't turn out to be scarey at all. 

Last night we went in for another sleep study. We have them on a regular basis and usually they show that Nate's pressures need upping. This time, however, his consultant was very happy with him in clinic and requested a sleep study without use of his machine. I was nervous and excited. Nate went to sleep on oxygen administered by nasal cannula ( he was thoroughly unimpressed by this) . As the night went on nurses changed his oxygen and adjusted his probes, and I watched those important numbers. The sats alarm went off frequently but they had the levels set high for oxygen fiddling. The lowest he dipped to was low 80s and then came straight back up. His carbon dioxide was normal. Like what normal people have. People who breathe properly. Ace. 

So the verdict then- after 3 yrs of being ventilated at night Nate gets a month off ( for good behaviour). We have an appointment to go back in at the end of November for another sleep study (to check his levels are still acceptable). 

We've been told not to get our hopes up. That he may only manage a few days and need to go back on,  may need it when unwell, but you know what? 

That's fine by me. 

I haven't lost my blogging mojo... Honest

I havent truly, but it feels like it's been a while. 

Poor Leeds suffered the indignity of having 30-odd swan parents descend on it a few weeks ago. That's not that we are odd. You know what I mean. Cocktails, dancing, plasters, PJs, a dodgy nights sleep followed by the worst breakfast ever sum it up really. Lovely to see so many fabulous people :) all in the same boat so to speak. We do this every 6 months or so- meet up and have some fun. A break from our "undiagnosed" lives. 

Me and little mama. 

Then back to our "normal"

The mixed messages I mentioned last post have continued and tbh my head is battered by it all. "Yes Nate is having gelastic seizures, yes you've told me they can't damage him, but no I don't think its acceptable for him to have to just live with them when they take such a chunk out of his life" All very ARGHH really. Have to take him in when it happens next for another EEG. 

This weekend we have a sleep study sans ventilator. I think it's brilliant that they want to see how he is doing, and what his sats and co2 are like without it, but I can see it all going horribly wrong. A night of BEEEEEEEEEEEPs probably but you never know it might be extremely positive ( I'd settle for slightly positive to be fair). 

We have a run of appointments coming up - genetics, ENT, feeding clinic, and another MRI. The MRI is primarily to look at nates myelination, but also to see if there is an incredibly rare brain tumour in there. There will also be a skin biopsy for a mosaic genetic syndrome done at the same time. Oh and endocrinology! I nearly forgot about that one! 

With all of these appointments approaching I'm bound to need a moan so I will be undoubtably back blogging in my regular pattern! Yeah consider that your warning! 

On a positive note Nate has settled well at school and I actually feel happy leaving him there. He becomes animated and noisy when we get there, and greets staff with a huge grin. Nate had a fabulous day today but can be very tired much of the time. Add that to colds and now a urine infection and this can make it difficult for staff to get him to engage with activities ( always tricky which you have a reluctant often sleeping student) and each day can be totally different. When Nate is in the right mood he does well. Hopefully as time goes on he's in " the right mood" more often at school and less tired. I am happy so far though. He is getting all the therapies and attention he needs. The staff care about him and it's a nurturing environment. 

After a good run of form I'll have a think about what progress he has made and update you. 

Speaking of which we are thrilled to hear about the progress some of Nate's pals are making! 

http://littlemammasaid.blogspot.co.uk/2013/10/celebrating-progress.html?m=1

http://babyavasmiraclejourney.blogspot.co.uk/2013/10/proudest-moments.html?m=1

 It's up to Nate and his pesky genes now what he can achieve. 

Wha??

So for quite a while I've been trying to get people involved with Nate to understand the odd hysterical laughing episodes he has. They were dismissed - can't be seizures as that type "are extremely rare" and we were sent away. They are infrequent but distressing for Nate and us. After much pushing an EEG was arranged but the results were normal. The episodes seemed linked to times of sleep deprivation where Nate would be quite hyper and manic and refuse sleep. His neurologist suggested an MRI and sleep deprived EEG. The issue being Nate is a terrible sleeper, however, he does nod off for short periods and is then awake so how I could keep a low tone complicated child awake for 6hrs at night? The only exception to this sleeping pattern is when Nate has the hyper nights and laughing episodes the next day but the EEG would be unlikely to hit on one of those times. We agreed to be in touch if these "moments" were more frequent or became worrying ,and to try to film one. The neuro said because of his neurological issues Nate might have a lower threshold to seizures so things like sleep deprivation and illness could be triggers. 

On Tuesday and Wednesday of last week nates movements were quite hyper, sweaty, and jerky. By Wednesday night I became worried that whatever his neurological condition is that is was deteriorating (or at least changing) as he just wasn't himself. The only other thought in my head was that maybe it was his brain being a bit short circuity because of the stimulation and hard work he had been doing at school. Ever the scientist I kept him off school on Thursday to see what he would be like if I took school out of the equation. Thursday was quieter and what was positive is that I really picked up the vibe from him that he was bored. I bore him ( compared to school). That makes me happy! He's enjoying the stimulation of school! He's showing emotion! Anyway I digress- when we got home from collecting thea he became quite twitchy and started with the hysterical laughing. This was constant for about 20mins at which point i started to worry. I recorded him for about a minute and put the video in 2 support groups for advice. I rang my husband to get him to leave work, and the children's nurses. We were told to take him to our local hospital to let someone see him while he was behaving like this. We have to drive by the local hospital ( literally round the corner) to get to the bigger hospital and so went with the closest one. I showed the video and by this time he had been laughing weirdly over an for an hr. He had a slightly raised temperature so they gave paracetamol. A few hours later he had gaps in between the laughing and they sent us home to come back the next morning to see his paediatrician. 

Nate slept all night and had to be woken to leave the house for the early appointment. When we arrived his paediatrician wasn't available so we saw a different one- someone we have seen a few times in the community at CDT meetings. She said that our paediatrician had pretty much decided these episodes were seizures and had some "thoughts" to the cause when put together with a few hairs he has (down below), and had we been told that? Nope we hadn't. She said our paed wanted another EEG and MRI, I said this was already in hand with the neurologist. She said that she had emailed the neuro about this latest episode and that we could speak to nate's paed about it next week. I tried to explain what I really wanted to know was if he was safe during these episodes, if there was anything we should be doing, if it was causing damage. I got a blank look and "said to speak to his paed next week"

We came home and Nate had a few more dodgy episodes but they were very short. That night he seemed to do it for over an hour but as he was on his sats monitor, and bipap machine I just left him to settle as we hadn't been told to do anything. 

Saturday morning we decided that this lack of information was actually a bit scary as he was continuing to do "them" and we needed to see someone about it. We went to the bigger hospital this time thinking there would be specialists there and more experience. They were decidedly unhappy with the length of time these things were happening for and surprised that the other hospital hadn't medicated him. 

I have always needed a plan. I like a line in the sand that let's me know when we need hospital and what we can manage at home. Plans are necessary to function as a family, and for my sanity. So now we have instructions- 5mins of silliness then hospital for rescue meds. The dr was going to send us home with midazolam but said the first few times it's needed they would prefer to administer it. As it often suppresses breathing this seems sensible. All a bit worrying. 

When I read this back what strikes me is the impact not having a diagnosis makes. We never know what to expect and neither do the professionals. I have resisted writing "professionals" . No, oops I've done it. Most times when we are treated in what I consider an inadequate way, it's a result of a lack of information. The bigger hospital were very clear that, when we could, we should always go there as our local hospital can't grasp how complicated Nate is. 

However it would be nice if when

I say " I think he's having seizures" people would take me seriously and not talk to me like I'm a neurotic mother. Which I am I suppose, but with bloody good reason. 

I need to speak to his neuro's secretary tomorrow and try to sort a quick appointment. I guarrantee this won't go smoothly. 

Those pictures as promised

Finding old photos and the mumsnet campaign

When Nate was born i'll be honest, he didn't look too good.  Odd colour, unusual features, and sickly. I didn't take many photos and if i did try to take a pic i would spend ages attempting to catch Nate at a moment he looked less ill/pale/sickly/blue/unresponsive and then stick that on fb and try to pretend it was a lovely pic. I remember one consultant saying, after he'd mentioned Nate's list of unusual features that he would "grow into his face". I found my old phone the other day with lots of these photos on. It was actually very upsetting looking back at how ill Nate looked. I'm trying to retrieve the photos from the memory card and will include them on here at a later date. Just so you can see how well he looks now. But here's a few that made it to fb. 

Over time Nate has changed. He is never going to be normal but my God i love everything about him. This feeling was only heightened when a surgeon stated he needed " major cranio facial surgery on his odd head to make him look more normal" . I left thinking the only person needing cranio facial surgery would be the surgeon himself if he continued down that line of thought. 

Nate makes me feel fiercely protective. Mumsnet launched a campaign this week called "this is my child" in an attempt to dispel myths, and put some ignorant people right. I back their campaign whole heartedly. Much of the campaign centers on behavioral issues and autism and the fact many of the general public seem to think comments like " he just needs a good smack" etc are helpful. It aims to raise awareness and bust many myths about life raising a disabled child. 

Mind i've had unhelpful comments too. The most annoying being " what a shame". I hate it. Utterly hate it. Even in the modern way it's said it still boils my bodily fluids. Nate isn't a shame. He isn't " my shame" to be hidden away, and the way he is isn't sad either. He's actually pretty amazing considering everything he's been through, and how he started his life. Id like for people to know its not a pity party. Feel free to be empathetic, however. Put yourself in my shoes. Go on. Then give me a supportive smile. You don't have to say anything. In fact some days you wouldn't be able to say anything right anyway. I asked my husband what the most upsetting thing anyone had said to him was, he replied that when out with our gorgeous daughter the awful comment was about her and not Nate. A man commented on how beautiful Thea was, but that it was a shame she was ginger! WTAF! I can see why he didn't tell me at the time. This just goes to show how what many people need is a good punch to the face. ( not really... well maybe) 

Then there's the staring. *sigh*. Yes he's different have a look that's fine. It's when it gets to the stopped in their tracks gawping that I feel the need to either confront them, or run away and cry. Some strangers look and then speak " my baby was on oxygen" " it gets easier" "my niece is disabled and an absolute joy" yes, acceptable, big tick. Not acceptable usually involves the elderly with things like " can they not fix him" " what's wrong with him" " let him out the chair he needs a run around" " didn't you know before he was born" " couldn't they tell on the scans" and of course the previously mentioned " what a shame". You are a stranger to me don't ask me things like that and what do you mean by " didn't you know?". What EXACTLY are you implying hmmm? ( Obviously some of these questions are inevitable in general conversation with people you actually know and who are actually interested in the full story) However my favourite comment was from an old lady the other week who tried to hold Nate's hand and when he pulled away said " does he not like being touched? My niece is Mongolian, she doesn't like being touched either". Really didn't know how to respond. I'm presuming her niece had Down syndrome and wasn't from Mongolia????? 

Nate has always had a lot of kit. In the beginning it was oxygen via nasal cannula and and an NG tube, and now it's a feeding pump, gastrostomy and sometimes a suction machine. What hasn't changed for me is that I don't mind children asking questions. It's natural. If we want a world where disability is accepted and supported then its the kids that need to be educated. Part of my feeling on this is because of the teacher in me, and part is just me being the mother of a child with additional needs looking for inclusion and acceptance. However when I mentioned that to a mam in the school yard she told me her daughter had asked her why a lady had no legs, the lady heard and preceded to hurl abuse at the child and parent... Its different for me though. Nate doesn't understand that people are talking about him, and I want people to understand Nate so questions are fine. It is hard for other people to know the right thing to say or do a lot of the time. I get that now. I didn't at first. Just as a child with an additional need doesn't come with a handbook, other people/ family/ friends don't suddenly know the right and wrong things to say. However certain language ( and you know what i mean) should be an obvious no no for everyone. I've gone off on a tangent.  Oh yes questions are good- much better than hushing a child and dragging it away from Nate. One of Thea's friends asked her what was wrong with Nate's legs ( they were stiff and sticking out) she replied "absolutely nothing, he's Nate that's what his legs are like" which didn't really answer the question but tbh I couldn't answer it either. So yeah questions are fine if I can answer them...
 

http://www.mumsnet.com/campaigns/this-is-my-child-about-the-campaign

 

A "wow" post

II was torn about whether to post this or not yet.

 Afraid to "jinx" things.

Afraid to find out its not true.

However I know so many people take an interest in Nate's life that, well, it would be rude not to share the news.

We had a respiratory appointment this week. The consultant was pretty stunned at how well Nate is doing, describing him as "unrecognisable" from the floppy sickly child he was. Lovely i thought.

It gets better.

I explained how Nate doesnt sleep and probably averages 3 good nights sleep a fortnight, and that every night involves a battle to keep his mask on. Nate takes great pleasure in ( and this is a profoundly disabled child) using his mouth to remove his socks on top of hand splints, wiggles his hand splints off, and then removes his facial mask. Over and over again. The consultant thought this was one hell of an indication that my boy no longer wants to be ventilated! He also said that if he's only getting 3 good nights sleep then he isn't being well ventilated anyway. A good point I hadn't thought of! Lovely I thought.

It gets better.

He went on to say how even if Nate isn't ready to come off ventilation ( we are having a sleep study in a few weeks without ventilation to see) we need to plan for the long term as there's no reason to think Nate will only be with us a for a short time ( respiration wise). Now of course we have these emerging seizure episodes, and yes he is still undiagnosed so we " just don't know" but

Wow.

Of course the reality is more complicated- IF the sleep study shows his carbon dioxide and oxygen levels are ok we then need to weigh up the pros and cons of coming off ventilation. The full expansion of his lungs caused by the ventilator pressure means secretions don't settle. If we remove this pressure and his lungs don't expand fully themselves he runs the risk of chest infections and even pneumonia. In addition the dr says Nate will still have apnoeas but those will hopefully be manageable with oxygen. 

Eeek

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.

Places we like to go

Over the last few weeks we have been out and about.

As I've mentioned before getting "out" is difficult enough with a child with complex needs, but the "about" bit once you're out is also a challenge.

We need somewhere to change Nate, feed Nate, park up with ease, doors and paths we can get through and along,  a lift, no stairs or few stairs ( if there's no lift), and of course stuff to actually do. 

I could quite easily have a moan. Beaches are a nightmare, shops quickly turn into an assault course of rails and displays, old houses and castles are best avoided, and soft plays can be a battlefield. So here's a few places we go that are easy and stress free. 

Seven stories, Lime street, Newcastle.

I love this place. Love love love it. I love reading you see, have done from being a small child. 

They have a basement full of cut and stick activities linked to the current exhibitions, galleries with things to play with and interact with, a bookshop, cafe, and an attic full of dressing up clothing and a storyteller. 

My eldest (6) loves visiting, however it gets quite busy and you can spend a fair bit of time waiting for the lift.  Recently we had the special bonus of going with St Oswalds hospice. We had a sensory trip around the exhibits which was amazing and a brilliant sensory story. There is parking nearby, and the building has good changing facilities. Staff are extremely helpful. Free with max cards.

Alan shearer activity centre, west Denton, Newcastle. 

Last year we had Nate's birthday party here ( expensive!) but you can just ring up to book a free session ( provided you become a member). It always feels chilled out and relaxing inside with well equipped sensory caves, music room ( umm that bit isn't chilled), white and blue sensory rooms, art room, hydro pool, cafe, grounds to wander around, and outdoor play area, and disabled toilets with adult sized changing tables. It's a lovely place to spend a few hours. 

Baltic centre for contemporary art, shore street, Gateshead quays. 

Free entry.

 I must confess I don't "get" this type of art however i applaud any organization that actively tries to get children involved, welcomes children with additional needs into their sessions, and also provides quieter sessions purely for those children with additional needs and their siblings. The centre runs week long workshops for children during school holidays and you book your children into a 2 hr session. The centre has many different events and activities going on in addition to their exhibits. 

 https://www.balticmill.com/whats-on/family-fun

Blue badge parking is free as long as you get the baltic to validate your ticket. 

We went to the additional needs session and quite frankly had a wonderful time. One of the current installations focuses on elements and weather ( the reactions of the children to the boxes of weather were utterly brilliant) so the workshop involved rainbows- lots of painting, pastels and food art. 

The building is airy and accessible ( though I confess we didn't see the toilets/ changing), it has huge glass lifts with fabulous views of the Tyne, exhibits, an amazing shop (where I could easily spend an whole hour oooing and arrring at things), a viewing level, a chill out space that seems specifically designed for children and a cafe. The staff were very helpful- some things they want you to touch/ interact with, others not so much!

 I was really impressed, and art isn't my thing.