Our Family

Our Family

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)