Our Family

Our Family

Tuesday, 31 December 2013

Goodbye 2013.

Well 2014 is off to a better start than 2013 at the very least. For example the first person I say 'Happy New Year' too wont be the nurse doing Robyn's midnight meds a few minutes late as the nurses were seeing in the bells together. So that's a plus.

We did have a worrying week this past week where it looked like we would be in for Hogmanay again. Robyn was so ill she had no energy and literally laid on the couch for several days in her jammies happy to just watch cartoons, eat, vomit then drift back off to sleep. But she has pulled through and all the while kept hydrated and a good colour to her skin so we didn't feel she needed the oxygen that usually puts us in the hospital. First time ever really she has managed being seriously unwell at home. Yay Robyn.

Its been a year of ups and downs for us a lot more hospital stays and operations than we would have liked but it also included Robyn getting rid of her feeding tubes, lots of sunny weather, trips to the Zoo, and to see Thomas as well as Robyn's momentous first birthday. We hope 2014 holds lots more of these moments for us.

Trying so hard to be positive for the next year as we have the possibility of another heart surgery looming over us. We also had some reading of a friends blog this week too. A Post I know she found very difficult to write. But in the same way I feel I need to know all the details to cope she felt she had to draw the facts together. Its definitely better to be aware of ALL the facts but it is still very hard hitting to truly consider the fact that your child's mortality rate is very high. For children with CHARGE who have a heart defect and choanal atresia, just like Robyn the mortality rate is 15 - 20% before 5 years. In plain English there is a 15-20% chance Robyn wont see her 5th birthday. That's a 1 in 5 chance. Its scary but like I said it helps to know the facts. If we know the risks and the things to look out for there is a greater chance that we can avoid it happening.

As a result I have just spent around £50 printing out documentation from the Sense website regarding various aspects of CHARGE. I will be handing care of Robyn over to specialist nursery workers and therapists in a few short weeks and need to know they know what they are doing. Some might call me paranoid but when you have been in the position of saying the name of your child's condition to a doctor only to be met with a blank look you would be paranoid too. Knowledge is Power and all that so if I have to give them the idiots guide in 56k colour to be sure they have that knowledge then so be it. Its only money after all.

This is a link to the information in case anyone is interested in learning more.

On the other side of life Tyler is also starting at a council nursery for 2 year olds in January. So 2 afternoons a week I can focus on just Robyn, and 2 full days a week while she is away I can focus on Tyler. The one on one time will be great for them both. And Me. I'm very good at the mummy guilt of not doing enough with each of them separately. Even though they both have very full schedules lol. You never know if I am very lucky maybe one of Tyler's afternoons will overlap with Robyn's and I might even get a few hours to myself. Wouldn't that just be awesome, even if very unlikely I can dream right?

Anyways this blog didn't turn out like I was expecting, sometimes I just let my hands do what they want on the keyboard and they don't really listen to what my head was telling them to write. I was planning to be all sentimental about it being Hogmanay etc but then I got side-tracked. The one part I definitely want to include is the part about how grateful we are that our journey brought us into the lives of so many new people we would never have met otherwise. Some wonderful kids and there very strong parents Finn (and Eilidh, we really would never have made it through Yorkhill without you, wish we lived closer), Ollie, Cameron, and Jonah to name a few. And some others we haven't met and might not ever meet either in our CHARGE community. My life is better for having you in it. If things hadn't gone 'wrong' we would never have met these awesome people. There are so  many others that I couldn't possibly mention everyone but at the least need to squeeze in my sister Lindsey and her beautiful family, Jackie all the way out there in Japan, my oldest friend, and last but not least my hubby Greg. We have a beautiful family through the good times and the bad we stuck together and just look at the two wonderful babies we have to show for all that hard work. 13 years together tomorrow with many more to come.

AND a Happy New Year.

Tuesday, 19 November 2013

Happy to go Home Anniversary

A year ago today we finally packed our bags and left the hospital for the first time ever.
Its been a long year. And its weird to think how far we have come. This time last year I had a checklist of stages to go through during a tube feed. Our feeding pump had just been ordered so we could do pump feeds at home. I never thought I would manage a tube I couldn't pass on my own, syringes, and pumps and loads of medicines.
Here we are a year later having just been discharged from Gastro clinic. They have agreed that Robyn absolutely doesn't need a PEG tube or button  fitted. Yay.
Score = Parents 1, medical professionals nil.
In other fantastic news Daddy has been offered a new job today as well so things are looking up for us all round.

First pic at home together.                                                                         Pics at home this week

One day I will get them both to look happy about being in a picture together without having to bribe them both with milk.

Wednesday, 13 November 2013

Such a Roller Coaster

Well, after such a good day yesterday there had to be a kick in the ass coming up didn't there? I had a feeling it would go this way to be honest, not sure why just suspected it.

Cardio clinic did not go well. The cardiologist who has previously described Robyn's Radial Pulses as excellent could barely feel them today. I will try to explain briefly what that means.

The heart has various branches coming off of it to carry blood round the body. One major one takes blood to the head and brain for example. Another, the aorta, takes blood to the legs and lower half of the body. As it does this it causes pulses in the major arteries in the lower half of the body. These are usually measured by the pressure of the pulses in the hip area. It is this pulse that is weak on Robyn today. This was originally caused by a coarctation of her aorta, which meant her aorta had a place in it which had not grown properly and was too narrow restricting the flow of blood from her heart to her lower body. The fact that the pulses are weak when previously they had been strong suggests that as Robyn's heart has grown the area of her aorta that was corrected in her previous surgery has not grown in proportion to the rest of her heart and is now narrow again.

As we have a follow up appointment coming up at Yorkhill in January with ENT anyway the cardiologist has requested more indepth scans etc to get a much better look at what is going on as our local hospital doesn't have specialised equipment like Yorkhill have. However it is looking likely Robyn will need another heart surgery. And probably quite soon.

The silver lining is that it wont be an open heart procedure like she had to have previously. It will be able to be carried using a catheter inserted into veins in the top of her leg. Obviously however it is still a surgery which carries a large amount of risk as does any procedure.

This is not the news we were hoping for. And unfortunately the week is far from over so we have quite a long way to go before we can have some time to stop and process what this actually means for us. Tomorrow isn't about Robyn for a change though. My little Mr. T actually gets a whole day about him and his achievements at his (late) 27 month review.

Tuesday, 12 November 2013

Exhausting but Good Day

Today we were at Special Infant Clinic. Its the first time we have checked in with them in about six months and we were finally meeting the 'crossover' doctor who works both there and at the local development centre. Now that we have met her she can assess which clinic at the centre will best suit Robyn's needs. She has decided Robyn will be best in her own clinic which is fantastic news as we have heard very goods things about this doctor from other people who have children in her clinic already.

She did an assessment of Robyn's development today. She has placed Robyn's Gross motor skills at the 7 month old mark and the rest of her development at around 10 months. This is pretty much where we had placed her ourselves and so came as no great surprise to us but its always good to know you are getting things right. She has mentioned the possibility of placing Robyn into the development centre's nursery so she can have some more intensive therapies in the hopes of pushing her development on a bit as obviously she is lagging quite a bit in gross motor skills due to her hypotonia as well as excessive time spent in hospital in her first year. We are going to go for a tour of the nursery soon to see what we think. All in all it was a pretty good appointment all round and although I am now mentally drained I am happy.

Unfortunately we get to do it all over again tomorrow at Cardio Clinic.

Although it does mildly amuse me to watch how over protective of her notes the secretaries at the hospitals get lol.

Secretary -  'Don't let those notes go when the wee one comes out I need them for tomorow',

Nurse - 'But theres a note saying they have to go straight back as audiology want them on Friday',

 Secretary - 'Tough I need them tomorrow I'm keeping them'

During our last inpatient stay her notes didn't show up at all as they were still enroute from Yorkhill. You think in some cases surely it would be easier to just let the parents take them. But no, I am trusted with a medically fragile baby but not the bits of paper that go with her. Just seems a little odd sometimes.

In Other Great News...

Robyn also Broke the 17lbs limit finally and is now weighing in at 17lbs 5oz! Almost a whole pound of which she has put on since we stopped using any form of feeding tube.

And she beat her own record for sitting unaided today as well. She is now clocking in at a massive 2 and a half minutes sitting unaided! (Only when she feels like it of course)

Monday, 28 October 2013

Tube Free, Hearing Aid Free, and Sitting Unaided (kinda)

Been a pretty big few weeks since our last surgery.

Robyn has been tubeless for a WHOLE week now. Since the atresia repair she seems to be coping much better with her secretions from her nose. This also seems to have helped with how tired she would get during bottle feeding. so we have gone from needing to have 500mls of milk in a day but only drinking about 200-300, to easily drinking 500mls from a bottle and then looking for more. We are now making up extra milk for a bedtime bottle instead of passing an ng tube each night. We are hoping that this continues. We think Robyn is having a bit of a growth spurt just now as she is eating and sleeping a lot and so this might be the reason she is having extra milk but we will see how she gets on at her next weigh in.

We are hoping at that next appointment to meet our crossover doctor to the local development centre and so hopefully (finally) be discharged from the infant clinic. We also have an appointment at the Gastroenterology clinic due soon and we are hoping to be discharged from them too. Pretty sure we wont need a G-tube if we don't need an NG-tube.

We also had a great appointment at Kings Cross today too. It was our first hearing assessment since the grommets were fitted. They managed an overall assessment of her hearing plus a specific assessment of her left ear. She got bored at this point so we have to go back in a few weeks to finish the assessment on her right ear.

 We were told that Robyn has an overall hearing level of 30 decibels!!!!!!!!!!
To be able to hear speech hearing must be at a level of at least 60 decibels or lower so it is now official that Robyn can hear us talking well enough to develop her own speech. This is great news. So great in fact that she no longer needs to wear her hearing aids at all. They will continue to monitor her progress in the future but they shouldn't need to intervene again.
sitting unaided

pretending to be tired
Overall the extra help with breathing easier and eating more also seems to be helping Robyn physically. We can now manage about ten seconds sitting completely unaided. And we just bought a jumperoo (naughty us, must hide it from the physio) and she loves to bounce, bounce, bounce. Finally something that lets me have my hands free for a few minutes.

Monday, 14 October 2013

ENT surgery

Our immunology  blood tests have been carried out now, just waiting for those results to come back.

In the meantime we went to Yorkhill to have follow up ENT surgery carried out. Robyn was admitted the night before surgery. This was actually good as it gave us a chance to catch up with her wee friend Finn that we  met there before.

The next day was pretty hard. Robyn was fasted for 9 hours before her op. 9 hours is a very long time for a 13 month old. However the surgery was very quick and very successful. They fitted her grommets to help with her hearing. They also had to remove some more pieces of bone from inside her nose to open her breathing passages up to allow her to breathe more easily.

She was discharged the following day and we came home with a well recovered happy little girl. Over the weekend the grandparents all said how well she seemed to be doing. Her shortest hospital stay ever only two nights.


Then on Tues she seemed to breathing very hard. She was also working very hard to get the breath she was getting. So we took her to our local hospital to get her checked over. She didn't need oxygen but was admitted overnight for monitoring. During that night her breathing got worse and her heart rate shot up to the 180's so she was taken to HDU. She bounced back pretty well with antibiotics and steroids. She was discharged again on Friday which surprised us all. She usually stays in hospital for a long time with bronchiolitis (Rhinovirus).

Not the best week we have ever had but definitely not the worst. We are hoping that this is a good sign that she will be strong enough to stay out of hospital more this winter.

Friday, 27 September 2013

Happy First Birthday.

The last few weeks have been pretty hectic for us. Robyn's birthday came and went. She had a wonderful Day with a great party, with lots of friends and family around her. She did of course choose to sleep through a large portion of it but I am assured that both she and Tyler had an amazing time.

We had a very loose Monsters Inc theme to remind us of how 'monstrous' her first year was at times. But the focus was very much on how far she has come and how well she is doing. She may be very behind in some of her development but she has been through way more than most babies her age and also more than a lot of adults we know too. She is one very strong little girl and we are so proud of her.

No pony for Robyn. It's a sad Robyn

The poster we put up for those who had only recently met Robyn and hadn't really seen what she had been through up till that point. And Robyn in her gorgeous dress all ready for her party.

Tyler playing in the softplay that came as part of the hall hire for the party

The birthday cake.
                                          And a Selfie of Tyler as he was feeling left out lol

Tuesday, 3 September 2013

Our Year in Review

Well, where do I start? This time last year I was a beached whale (I really was the excess fluid made me HUGE). I had just been to my nephews birthday and was exhausted and planning an early night as we had yet another scan to check on Robyn before birth. I was expecting to be given my induction date at the scan which was to be about a week later.

Robyn of course had other ideas.

The numerical facts of the last year are pretty scary.

Robyn has been in 2 Hospitals. Had 4 sets of ambulance transfers between them including one in an Emergency Helicopter. And 1 very scary emergency trip in an ambulance from home to hospital with Mum. She has been under GA four times for operations. At 3 days, 8 days, 17 days, and 59 days. She has spent 18 days in Paediatric Intensive Care as well as 8 days in Neonatal Intensive Care. She had stents in her nose for 6 weeks.

Robyn spent 150 days (roughly 5 months) in hospitals in total. And 215 days (roughly 7 months) home.

During that time at home Robyn has had 65 appointments to see various members of her team and this number does not include appointments that were cancelled during hospital stays or that took place on the wards during hospital stays.

With all of this I would say Robyn has easily spent more than half her life so far in hospitals.

However we are looking forward to a much more home based 2nd year. I am very excited about Robyn's birthday for many reasons. Not least of which is the fact that her mortality risk decreases significantly after the age of one. The risk of death for children with CHARGE in the first year is very high and increases with each use of GA but after that first year most of the life threatening events are overcome and life expectancy increases greatly. I cannot imagine how hard it must be to lose a child, and am grateful everyday our girl survived.

We wanted her birthday to be a happy event and it is but it is also an end to the year I was told my baby had a 1 in 25 chance of surviving surgery. And that just makes me feel relieved. I am hoping by looking back over these points today I can completely focus on the future tomorrow and not spend too much time going over bad memories.

We have a party planned and will update with pictures soon

Friday, 30 August 2013

The Common Cold

Yes for most people the common cold wouldn't even get a mention. But Robyn is not most people.

The last time Robyn had the common cold she spent 20 days in hospital.

Robyn had a cold last week......And we haven't been to hospital!!!!!!

Probably not worth a mention in most people's blogs but it is BIG news for us.

Monday, 29 July 2013

Picture Overload of my Beautiful Family

This post really is just the biggest stash of pictures  have done. We had these taken just before Tyler's birthday and I love them so want to share with everyone. I mainly wanted to get some nice updated family shots as we didn't get any pictures taken when Robyn was very young like we did with Tyler.



 Then we got some great pictures of Tyler on his own.



And Finally we got our (kinda) newborn pictures of Robyn


What can I say? I make beautiful babies.







Tuesday, 23 July 2013

More Medical Updates

So today was D-day. (Or G-day I suppose lol)

First we went to audiology. As suspected Robyns hearing has improved significantly. She is now consistently hearing at a level where she can hear most normal volume speech. A big difference from before. She will probably still need the aids to hear quieter sounds but its not essential she wears them all the time as we were worried about the choking hazard with Robyn chewing them. brilliant start to our day.

It should then have been time for the gastrostomy appointmet but as we were due back in the afternoon for a second clinic our neonatologist sneaked down while we were waiting so we wouldn't need to come back. yay.

She was very pleased with Robyn and how she is developing. We had a chat about clearing up some issues in the notes with the geneticist as there was mention of a new condition, Thymus Hypoplasia in her medical summary. This has never been discussed with me so they are looking into that at the moment for us but again given the all clear. We have begun the process of discharge to Armisted with a bit of crossover of clinics to help us get the new doctors used to 'Normal for Robyn'.

We then got to the Gastro doctor. Now we were expecting a fight on our hands when we said we don't feel she needs a gastrostomy. He said yeh I'm glad you said that, I don't think we should do it just yet either. The baby I'm looking at and the one I read about in the notes seem to be very different. So the G-tube has been officially parked until at least a review in autumn. So now they are going to get in touch with Yorkhill and get on with setting a date for the ENT procedure coming up. They will still fit the grommets and hope that clearing the fluid in her ears will help her hearing get even better.

So all in all a pretty good medical day. Progress is awesome.

Tyler playing 'tickle the sister'

Happy Birthdays All Round.

Been an eventful few days in the land of Howie. Greg's birthday was first. Now he is rockin a stylish SpongeBob onesie (I am forbidden to post pictures lol) and some superhero socks courtesy of the kids.

Greg with his socks

Followed a day later by Tyler's birthday outing, which was a Day Out with Thomas at Brechin Station. Tyler is in the worlds biggest Thomas phase right now so it totally made his day. We have all been so excited about taking him to see Thomas that we've talked about it all the time. Apparently more than we realised and at 6.30am on Sunday were awoken by one very excited toddler who already had his shoes and wanted to leave for Thomas right then lol. we managed to cram some breakfast in and throw some clothes in his general direction before we piled into the car.

Over excited toddler heading for the car

Day out with Thomas was well worth it. Ticket prices include everything available on the day except the café and gift shop. There is a small fairground with bouncy castle and rides, A generic engine doing brake car rides, a miniature railway doing rides, a face painter and wooden train set play area, a cinema type station showing Thomas (obviously) and then the engines themselves. Apart from the generic engine on the brake car there was Terence, Diesel, Percy and of course Thomas. The Fat Controller (Or Sir Topham Hatt as is his PC name) was also arounf meeting and greeting and doing photos. Tyler had a ball and left with some fantastic souveniers including a wooden Annie and Clarabel to add to his train collection which made his day as 'Ah-nee' is currently his favourite name to say. Brilliant day and highly recommended to anyone with a Thomas fan.

First laying eyes on Thomas such a sweet look on his face.
Meeting Thomas
Love this picture

Meeting Diesel

The Brake Car

Miniature Railway

Meeting Terence

Meeting The Fat Controller

Meeting The Fat Controller

Tuesday, 9 July 2013

The road from NG-tube to NO-tube

From Ng-tube (and stents).....
...to no tubes ever. (hopefully soon)

Working hard on getting Robyn off the tubes before the upcoming gastro appointment on 23rd.

Ideally now Robyn should be taking 600mls of milk orally alongside 3 solid (puree) meals as well.

Today our girl made great progress and hit her highest level of oral intake in one day EVER!

Robyn took 380mls throughout the day. More than half way there. Now if we could get over the 400 maybe even to the 450 mark by the appointment we could have a great case to argue against the G-tube insertion.

Go Robyn!

Friday, 5 July 2013

Medical updates

So, in an attempt to demonstrate the point of my last post, here is me getting back on the horse after my giving in to the hard side of things for a while.

Robyn enjoying some sun in the garden

Robyn has completed her Barium swallow test. This was done to assess her reflux and see if she would need a fundoplication carried out if/when her button is fitted. The radiologist who carried out the test thinks everything seemed to be fine but he isn't the one who makes the final decision unfortunately. Robyn has an appointment at a Gastroenterology clinic in a few weeks where I assume the final decision regarding the button and Fundo will be made. If the button is being done then we can get the referral to Yorkhill underway and the complicated process of getting Gastro and ENT to communicate so her procedures can be done under one anaesthetic can begin.

Currently the upcoming surgery will consist of, having the granulation tissue around her choanal atresia repair stretched out. Then having grommets fitted in her ears to drain excess fluid build up. And then possibly having the fundo and the button fitted. Overall not her most complicated or dangerous surgery but scary enough on someone so tiny.

We are having some weight issues again since we left hospital last. Robyn's weight dropped several ounces the first two weeks she was home however this was after a slight climb to the 2ndcentile line so she is merrily tumbling along on the 0.4 line again. We are hoping this is due to her increased movements and that we are now not using the NG tube during the day. Robyn is progressing well with her oral feeds and is now taking around 300mls (around 10 ounces) of the 600mls she needs plus is doing well with pureed solids.

Tyler reading his book while Robyn poses for the camera.

Hopefully with next round of clinics we will see this loss settle back down or we may have to return to continuous feeds again. The next big appointment day will be LONG. It consists of a hearing test at 9am, followed by the Gastro clinic at 11am, followed by special baby clinic at 3pm. Not a fun day all round but I am sticking with the fact we will have had several good days before that as it will be big brothers second birthday the day before. We have a lot of surprises for our Thomas the Tank loving toddler. He deserves to be spoiled for being such a star this last year.

Our Thomas loving Toddler

Development wise Robyn is now rolling over. Most of the time. She still gets stuck occasionally. And we finally have teeth! Or tooth at least. After three hellish weeks of teething one is finally through at the top and the one next to it looks to be through any time now.

Where did my positivity go?

Its been a while since we had an update. I've considered writing a few times but honestly that last hospital stay took a lot from us as a family and more so from me as the mum who has to do it all. I have been trying to post anything too negative here as I really don't want to scare off any parents reading this who are on the road to where we are. But then I was thinking today that maybe if I make it all out to be roses and sunshine then that also gives a skewed perspective. I certainly would hate for anyone to think there is something wrong if they are currently special needs parents and finding it bloody hard work.

So for anyone currently worrying about why they aren't the 'shiny happy parents' that most special needs children seem to have I would like to take some time to assure you its totally normal. (Either that or there is something wrong with me of course, which is also entirely plausible.)

To clarify. the 'shiny happy parents' are those who seem born to have special needs kids. They are always positive and smiley and loving life. No need of their child is too great a task for them and every tiny achievement of their child is seen as if their child just landed on the moon. Most days I can tolerate these people. I understand the mask they pull on to deal with the hardness of the life they face. Most days I pull on the same mask and I'm quite sure have been seen by others as shiny and happy.

But, there are other days. These are the days I want to punch the shiny happy people in their shiny happy faces. These are the people who when their baby) was 8 weeks old and they were out at playgroup telling me how easy they were finding it to cope and how they didn't understand how anyone could ever struggle to cope. These are the people who tell me enthusiastically 'it wont be long till she's running around after her brother'. It is also, the people who can sit down with my baby who has been screaming at me all day and get her to smile. (Although to be fair that last one applies to normal parents and people with no kids too. And is mostly the fault of teething than any special need Robyn has)

Some days its hard and those days the shiny people make it worse. But on those days, its ok to not be around the shiny people. Its ok to stay home and not shower and feel generally crappy. Veg out with your baby, your jammies and some cartoons. Accept that even the shiny people have days when they feel this crappy. The reason you never see that side of them is because, like you, they do crappy at home. Once you get a break do something to recharge, have a bath, a cup of tea, a glass of wine. A really long moan about that shiny happy person who seems to have it all together all the time. Then once your done, get up the next day pull back on your own shiny happy mask and get back on with your life.

And the best part is? Your child, special needs or not, won't care. In their eyes you are superwoman. Jammies or designer gear, At home or out in the world, by yourselves or surrounded by 20 other kids. You are the mummy, they love you and as long as you love them, you are the perfect mummy.