Our Family

Our Family

Wednesday, 31 December 2014

Goodbye 2014

Its that time of year again.



My biggest regret of the year is not keeping as up to date with the blog as I would have liked. In January last year Robyn was just about to start attending nursery at the local child development centre where she would have more regular access to her therapists. She had only just about mastered sitting unaided and got tired easily doing this. She required a lot of extra padding and support in her chair when she first started. Over this year Robyn has gotten much stronger, she doesn't need nearly as much support to maintain a good posture and can sit unaided on her indefinitely. She has also mastered pulling to stand and now no longer needs any support from standing frames to stand and play with her toys on the play table we have. Robyn is cruising round the furniture well now too. Her biggest achievement though was mastering the transition from lying to a sitting position. This took a really long time for her as her muscle strength is very poor still compared to others the same age, some of this is from the hypotonia but also the extra months she spent lying in hospital delayed her strength developing.

This last week Robyn's balance has also begun to manage allowing her to stand unaided for around 4-5 seconds. This is a very exciting development especially considering children with CHARGE often have very poor balance due to having problems with their inner ear structures.

Communication has also taken some massive leaps this year with Robyn's makaton skills coming on brilliantly. Robymn can now sign around 40 signs, with around 30 of those being spontaneous and not just copying us when we sign to her. This is amazing for us as Robyn has no words yet so she can let us know what she wants to eat/drink/play with much more easily.

Hopefully 2015 will see her walking and talking.


Tyler has had a really busy year too. He also started nursery in January in room for 2 year olds. He had a brilliant time there and made lots of friends. His speech improved massively due to chatting constanty to all his new friends and we always found it quite surprising how good his speech was compared to kids the same age. Over this year he also mastered potty training, so another big milestone knocked off his list. Yay. In august he moved up to the standard room for 3 year olds in his nursery and has adjusted really well. He is slowly coming to terms with sharing and talking about how he feels rather than tantrumming so that's great. He has enjoyed showing off his many skills at nursery too. He can do a 50 piece jigsaw by himself, he can also count to 10 and is beginning to learn the alphabet. e can recognise his own name written down and when writing is starting to manage recognisable letter shapes too.

Its amazing to look back at how far they both have come this year.

Fingers crossed for more exciting times to come in 2015.

Happy New Year to all

Friday, 28 November 2014

Team Around the Child Review - 2 years and 2 months

Ready for Winter

We had Robyn's 6 monthly review yesterday. They complete these to get all of the staff working with her in the Child Development Nursery together to update on her progress in the previous six months and to set goals for the next six.

For the first time ever one of these meetings came out all positive. First up being Dad got an unexpected days holiday so was able to attend last minute which is great as it saves me trying to relay all the information to him second hand.

Robyn's first report was from her key worker in the nursery who cant sing her praises high enough. She was telling us all about Robyn's favourite areas to play in the nursery as well as how her life skills are coming on. This includes being given 'duties' to responsible for in the nursery. Robyn's job is to hand out the bibs at snack time to all her friends. She has also been learning to pour her own drinks from the jug into her own cup. She almost never spills and when she does she is quick to clean up her own mess. Her key worker talks really fondly of her 'special dance' too that she does when she realises its time for snack group lol.

Winter is Coming

OT was up next. The OT was telling us that she s finding Robyn challenging but in a good way. She is finding it difficult to find new things to challenge Robyn. Each new task Robyn is picking up and mastering very quickly then she is looking for the next activity. The OT is struggling to keep up with her. They are doing less and less 1:1 sessions as they are needed less and the involvement is mostly about advising the nursery staff on activities to work on. These include dressing skills, and helping her learn to control her fine motor skills so that instead of just repeatedly mashing at the screen while playing with an IPad she learns when to press and when to wait etc.

Happy Halloween

SALT report was next. After much stopping and starting and miscommunication with this recently we seem to have finally made some progress. There was no talk about feeding for a start! excellent. We covered Robyn's use of Makaton briefly discussing how she is now up to around 25 signs and is beginning to understand that she can link them together to make sentences. There was also evidence that she clearly understands more words and signs than she is able to recreate by using a test designed for older (age and development wise) children. It included laying several common items (a sock, a duck, etc) in front of Robyn and asking her to pick up and hand to the tester a specific item. This test placed Robyn at 1 year 9 months old developmentally for understanding which is a delay of only 5 months. We then moved onto actual speech therapy. We have highlighted that while we understand the importance of working in peer groups, and teaching speech relevant to Robyn's immediate interest we would also expect some degree of 1:1 work to ensure she is also getting the full benefit of the therapy in case she is missing things in the busy nursery room due to her hearing loss. This has been agreed and will be going into place from nest week. On the back of this we have also been given a new Teacher of the Deaf who will now have sessions alternately at home with us and then at nursery to ensure her input is being included into the speech therapy.

Tired out

Next came Physio's report. This was probably the one showing the most development. In January this year Robyn was barely sitting unaided. She is now sitting confidently, making the transition into sitting by herself, crawling well less in commando and more in 4 point position. She is pulling to stand and cruising to the left and right easily. They are no longer using her tot stander at all, and have stopped using her pacer for the moment as she is finding it too restrictive and she dislikes it so much she will rock and jump around and has almost managed to tip the whole frame over. Obviously they don't like to commit to anything but the feeling seems clear that they don't think walking is a too far in the distance idea.

The 27-30 month review which is standard for the Health Visitor to do is also upcoming and the HV seemed surprised during certain conversations when aspects of that assessment were mentioned that Robyn is more than capable of achieving at this stage. The most outstanding one being the threading of cotton reels and stacking activities.

This driving thing is easy

Overall the review seems so positive that they have discussed that Robyn may outgrow the nursery and her peer group sooner than expected and may no longer need a place at all after the next review. In which case she would see any outstanding therapists at home. We briefly discussed the education panel and her progression into mainstream nursery for her 3 years old placement, We had always assumed she would transfer straight from one to the other but she may end up having a break in between if she does really well in the next few months. That is obviously great for her progress but sad that she will no longer get to see all her friends lol. We will all be sad I think.

Family Selfie

Wednesday, 8 October 2014

1 Year at Home.

Well its official. This time last year we were just getting discharged from Ward 29 after being admitted to HDU after her last operation at Yorkhill. We were pretty much expecting that it was the early beginning of another winter spent in and out of hospital like the previous year.


We were wrong and it amazes me to think that Robyn has now gone 1 WHOLE YEAR without being admitted for an overnight stay into hospital.

Simple things.

Wednesday, 13 August 2014

Year in Review - Year 2

Little early with this post this year but was thinking about our numbers for the year today and was a little bit excited lol.

Last years figures looked like this :

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.

 This years figures look loads better. Robyn has still been in 2 hospitals but no ambulance transfers this time. She has been under GA once for a planned operation. She stayed in for 2 nights just, both of those on a ward. She has had 1 admittance to hospital besides that and that was in the week following the operation. She spent five nights in that time mostly in HDU. We have had 2 observations in the GP bay with a possibility of being admitted and then sent home. So in a year a grand total of 1 WEEK in hospital, as opposed to the MONTHS of last year.

This is huge for Robyn so you can see why I was excited when I stopped to think about it. Obviously its hard to say if we were just really lucky last winter and Robyn will always be at high risk for respiratory bugs over the winter but fingers crossed its a good sign for the future. Hospital stays damage her ability to progress and develop so much as she spends so much of her energy trying to get well. This last year her development has come on massively due to so much less time spent being ill.


Thursday, 24 July 2014

Happy Third Birthday

Tyler is 3!!! When did that happen?

I made a movie with lots of little clips of his life till now. You can watch it here:


We had a pretty quiet day on his actual birthday because Daddy had to work so we had a BBQ lunch with some of Tyler's cousins and played in the paddling pool. Then we had lots of presents to open. We are having a small birthday party for him at the weekend with all his cousins and a few friends. That will be fun.

There is a bit of a Lightning McQueen theme to the party and Tyler cant wait for his Lightning cake. Will post some pics of the party after the weekend

Thursday, 10 April 2014

Sshhhhh! Its a record!

It has been a pretty quiet winter round her for us. And without tempting fate as last year we were still being admitted with 'winter' bugs right up till May, I would like to celebrate a teeny, tiny record.

Robyn hasn't had an overnight stay in hospital in.........6 MONTHS!

Her previous record was four months. Its even more of a milestone as it was 6 WINTER MONTHS!

Congratulatory hug from the big brother.

Now we haven't been bug free Robyn did have bronchiolitis at xmas and we have had several colds/runny noses etc since January but that was to be expected with both Tyler and Robyn starting nursery. On the whole Robyn has handled it all very well.

We have finally started attending immunology clinic and so far they are happy that her immune system is doing much better than previously. We have been given the go ahead to give the MMR injection when we are ready, but I'm still working up the nerve for that one.

We have also started attending an endocrinology clinic which wont have much input into Robyn's life for a while yet but they will be monitoring her from now on so they can build up a good picture of what is 'normal for Robyn' so that when they do decide if she needs any help they will have a good base to work from.

All in all its been a reasonably good period of time medically. Developmentally Robyn is also coming on leaps and bounds. She has moved past  being able to sit for only short periods of time and can hold the position indefinitely. But like a true diva she will not be forced into sitting if she is not in the mood. She has become very good at moving out of a seated position into a laying flat position which is her preferred way to be. Her proprioceptive sense gets more feedback about what her body is doing lying like this. She can also be free to move.

She has developed her very own style of crawling. Which while it started off very much like a zombie throwing itself around on the floor is now becoming more refined. She can use both hands to help instead of dragging them both behind her. She also spends more time pulling up onto her knees and elbows or hands into a typical crawl position. This is incredibly difficult for her as she doesn't have the muscle tone that provides strength to hold her own weight like most children do.

That tummy is properly off the floor.

Despite not liking sitting positions very much Robyn has fallen in love with standing up. She can weight bear through her legs very well now and can even stand holding onto furniture for extended periods providing someone is there just in case she falls. She hasn't mastered moving her feet to prevent falling yet and her balance is affected by CHARGE issues relating to her ears. However she will make attempts to take steps to walk between people if she isn't too tired.

She has had her vision assessed again and has brilliant functional vision despite the coloboma in both eyes which is excellent news. Robyn loves her nursery and is settling in very well with her new friends even if she does love to roll around on the floor with all the boys instead of playing nicely with the girls. Guess that's what happens when you have cousins and brothers to contend with.

Robyn's use of Makaton is also coming on in leaps and bounds now. Her very favourite sign at the minute is 'finished'. She can apply it to eating as well as playing. Here she is signing 'finished' right after she completed her stacking ring tower.


Tyler is also developing well. He loves his nursery too and is still very much a tiny tornado of energy. I don't know how he does it most days.

I love this t-shirt.
They love nursery. I love post nursery nap time.

Thursday, 3 April 2014

My New love/hate relationship with Jillian Michaels

Seeing as things have gotten quiet for us recently medical wise the rest of our lives have been featuring more and more over the medical side which is a pleasant change.

In January I decided that it was time once and for all to get my weight back on track carrying baby weight when your youngest is 18 months is not a good look. So I joined a Slimming World class. Its been good so far. I have quite enjoyed having the motivation of going along and getting weighed with other people. And have stayed to the Image Therapy group after too. I have gotten some fantastic recipes out of the other members as well as from the online area for members only. In 12 weeks I lost 18 lbs so definitely on the way.

They have a set of awards known as Body Magic which is how I came to meet Jillian. I say meet, I mean on DVD obviously. She was recommended by a few friends so I have decided to give her 30 Day Shred a go. Its been too long since I did much real exercise so my plan is to do the first 30 days on level 1, then progress to 30 days at level 2 and finally 30 days at level 3. It will neatly take me through my Silver Body Magic award so I love that part BUT the workout just about killed me the first time lol. My legs felt like jelly after. However the next day I woke up expecting to be very sore and was pleasantly surprised. I could definitely feel that I had been working out but not in a pain way.

It was Day 3 today and I did find todays workout out that bit easier so I'm hopeful it WILL get easier in the long run. So While I hate how hard it is Jillian I am hoping by day 30 I will be loving the results.

Friday, 7 March 2014

It's been a while...

Been a while since I managed a proper update. Things have been pretty hectic this year so far. Tyler has started at his nursery, he is spending 2 great fun afternoons a week with a large group of 2 year olds and having and absolute ball. He settled in, in no time at all and has been an absolute star since starting. He loves to draw and paint. He also loves to read and is really enjoying singing and dancing as well.

Robyn has also started at the nursery attached to our local Child Development Centre. She will also attend but for two full days instead of half days. This week was her first week and she seems to be really loving it.

Health wise Robyn is doing brilliantly. We have only had one worrying moment when we took a little trip to the children's ward to have a check over but the doctor decided she was fine and didn't need to be admitted which is fantastic news.

We had a brilliant moment today though with a nursery nurse who doesn't know about her feeding issues who turned round and said aww she really loves her food doesn't she? Made my day.

Sunday, 9 February 2014

CHD Awareness Week

CHD or Congenital Heart Defect Awareness is a big issue to me and Greg.  Before we knew Robyn had CHARGE Syndrome we knew about her CHD. So in honour of awareness week I want to talk a bit about her specific problems.
For anyone thinking Why? it's fixed now isn't it? I would like to point out there is NO cure for CHD. Robyn had open heart surgery at just 8 days old. One problem was repaired but has high risk of reoccurring , the other was only partially repaired and will probably require further surgery at some point. A surgery that runs a 1 in 25 chance of killing your child is not a cure. Its a horrific gamble that no one should have to take.
Robyn's first condition is a coaractation of the aorta. The aorta is part of the heart mostly responsible for directing blood to your legs and lower body. A coaractation is simply a narrowing of this part of the heart. Robyn's was so severe her surgeon referred to it as 'almost an interruption' This narrowing prevents enough blood getting to Robyn's legs. It is the main reason her feet are always so cold now. It can also cause problems in the left side of the heart as that side needs to compensate by working harder to force the blood through the narrowed area.
This is where Robyn's AVSD or atrioventricular septal defect occurs. Essentially this is a hole in the heart or in Robyn's case lots of little holes through the chambers of her heart. This means that the blood in both sides of her heart was mixing in between beats. The old oxygen light blood coming into the heart mixed with the oxygen rich blood going out and then was pumped round the body again with lower oxygen content than it should have. This was partially repaired and as a result of this part of the operation one of the valves in her heart hasn't closed correctly and so still has a small leak between beats that is being monitored very closely.
Thank you for taking time to read this and I hope you have found what you read interesting. Today is the day the British Heart Foundation are raising money to keep researching and operating to keep kids like my baby alive. If you can please donate a few pennies to the cause. Donate online or nip into your local as a this weekend and chuck a few pence in a bucket for them. Thanks