Friday, May 31, 2013

An Update

Sorry I have been MIA for quite a while, I have just finished my 2nd and 3rd uni courses, so the last month, or so, was pretty hectic with final assignments and an exam... plus all the normal everyday stuff which was squeezed in.

So what has been happening over the last month...

Lyla has started a new medication called baclofen.  The plan is for it to help relax her so she will not be as 'stiff'.  I have noticed a small difference, not exactly the difference I was expecting, like more mobility in arms & legs, she just seems to be a little more floppy in the trunk.  I was very hesitant putting her on this medication, and after close to a year of discussion with numerous doctors, I decided to just give it a go... When Lyla was born she was put on diazepan (without our knowledge, or consent) which sedated her for weeks until we had fully weaned her off of it; this is why I was hesitant.  Even though it is a different medication I didn't want it to knock her out, or change her.  

She also started a new formula, up until a month ago she was having your normal supermarket bought stuff, which is not best for a child whose only source of nutrition is a formula designed for 1 year old children who eat solids too.  I was sick of spending $40+ a week on formula.  So after a nutritionist appointment (which I was also not 100% keen on, that is another story) Lyla is now on Nutrison, a pre-made formula, which looks and smells like chocolate milk (you can now imagine the looks I get when I pull out a bottle of 'chocolate' milk) and it is normally for children over the age of 10, but nutritionally, this is best for her.  The bonus of this is, it's FREE!  The downside is the end result, no one is prepared for that!

We have now started weekly occupational therapy sessions, and the occasional speech (if she is around), in the hope to 'de-sensitise' Lyla, as she is very sensitive to unfamiliar textures etc, which, for example, makes things really hard when she has her little 'blue episodes' just because someone other than immediate family touches or holds her.  We are starting at her feet and working our way up. 

We had a follow up eye check 3 weeks ago, her eyes are FINE!!  However, we will be returning in 6 months for an actual test. 

The last couple of weeks Lyla was also very unwell, never has she been so sick before and it was horrible.  She ended up with a chest infection, which as you may know, or may not, for a child like Lyla can be VERY serious, especially with a high risk of aspirating; and sadly this is how many children like her pass away.  She was on 2 forms of antibiotics + a probiotic (which was powdered and got stuck in her NG tube, and ended with a tube change) she also had to have a chest x-ray to rule out pneumonia and avoid a hospital hospital stay, but luckily she's a strong little thing and after MANY sleepless nights, she's good as new!  Following this, we had a midnight visit to ER with a meningococcal scare, luckily that was also clear.

And finally, probably the most exciting news actually, 
 We have been waiting for this surgery for a long bloody time!  There was alot of stuffing around with the date while Lyla was sick and last week her surgery was cancelled and rescheduled 3 times!  Now it is a definite for Wednesday June 5th, 5 sleeps!
The surgery involves placing a permanent feeding tube, either a PEG or Mic-Key Button, directly into her stomach, from the outside.  This means no more nasogastric tube and we will finally be able to see her face with no tube or tape!  Along with this, 3 biopsies will be done - tissue, muscle and liver.  The date cannot come quick enough, but as much as she needs this done and we want it done, I am VERY scared; I don't want her to go under anaesthetic, I don't want her to stay in hospital (staying in PICU), I don't want her to be cut open, and I do not want another repeat of our last hospital stay (I might write about this another day), but positive thinking!

Well, I think that is all that has happened over the last month in the life of Lyla, I will post a few pics too.

That is all for now


1 comment:

  1. All positive thoughts for you Jessica, Daniel and Lyla. As a mother we would do anything for our children in a heartbeat and I am thinking of you all. Even though I can't be with you physically on Wednesday, I am always with you. Love and hugs mum xxx