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
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.
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.
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.
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.
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.