Shabby Miss Jenn

Monday, 23 March 2009

Oooh Naughty Blogger I Am!

Yes yes yes I know....naughty blogger I am. Seems too long sometimes between posts and when life is full on and chaotic such as mine well then sometimes updating my blog is not a priority. The past week or so has left me somewhat.......running on empty!!! Life was not meant to be easy.....or so they say but I think our family has not only had our share of trials and tribulation than most families by now but much more then what seems "fair" as well because whoa...sometimes you wonder what's hit you and why so darn hard!

Ok first up our youngest son Maddison as you know is visually impaired. He has a genetic disorder of the eyes which is called Best's Vitelliform Dystrophy.....a rarer form of a macular degeneration.....Tim and Stephanie both have it as well. Last Thursday I had to take Maddi and Steps to our optometrist as they were both saying they felt their eyes had changed and so I thought it best to book them in to see what was going on.

Stephanie wears graduation lenses because she is also longsighted (Tim and Maddi are too) and so the distance part of them needed to be changed up 2 steps. Sounds great in theory and yep it will help....but and yep there is a but, that's it, she is now wearing the maximum strength, she can't go higher and if her eyes change again there is nothing that can be done for the long sightedness anymore. So that's enough for any mum to take in alone without anything added to it....but like all stories there is always more and it goes something like this...............................................................

Maddi however has had a severe and serious change. His right eye has always been bad and so he has relied on his left eye and we have always been told that when his left eye starts to change then he will be in trouble.....well it's happened and so much worse then ever possibly imagined.

Optometrist found a severe and massive hemorrhage at the back of his left eye, an enormous blind spot and one that required urgent attention and I'm talking straight onto the phone to Maddi's eye specialist to let him know and request help. As he only comes to Bendigo once a week on Wednesday's Maddi was popped in first thing in the morning, photos of the back of his eyes taken (use to this as normal procedure), ultrasound taken of both eyes (once again normal procedure) dye injected into his veins to have another lot of photos taken to show up the bleed better (new procedure for us and not the norm) and urgent action required.

His specialist was very concerned, rang through another colleague and they decided the best form of action and that it had to be done asap. We were told what was necessary and that it could be done under either local or general anaesthetic. General anesthetic would be surgery that arvo in the day surgery theatre at the hospital (thankfully only next door to the clinic), or if Maddison thought he could cope with a local anaesthetic to have the procedure done he would do it there and then.

Of course my brave 13 yr old opted for the local and so he was readied for the necessary treatment. Course of action would be a drug directly administered into Maddi's left eye where the bleed was....yep 2 needles straight into the eyeball. How important this procedure was.....very and might add very expensive as well at the cost of $250 just for the drug and he has to have the procedure done again on the 15th of April and possibly as a continuous treatment.

Eye specialist is not sure if this will work...we are all hoping so.....as he said "this could be your miracle Maddison" The bleed was bad and no-one will know the outcome of how much damage has been done either....we just have to wait and hope the drug does what it's meant to do. But as the eye specialist said he couldn't do nothing and this was what they felt was the best way to go. Now it just needs to take time to work and we go back on the 8th of April for a review.

Until then he is not in school because he really can't see much and so we sit in limbo praying for our miracle and hoping that this will be it.

Dealing with all the things we deal with is tough....pretty darn tough at that and having both my boys with mulitple diagnoses is no easy street...not even for the toughest. The impact their disabilites have on the family is horrendous and sometimes no matter how many steps you hope to move forward with you take many many more back. My adorable DD Stephanie crashed and burned on Wednesday last week......everything we deal with got to a breaking point for her and she broke. Urgent phone call to the doctor's and then an appointment first thing the next morning...the result.....more referrals and another on anti depressants for major depression. I feel our family is falling apart and that in reality.....life sucks!

Ok onto some other news I have scrapped...yes finally managed the last of the 3 LO's I was required to do for the month of March guest ct'ing for digi designer Karah Fredricks. It was so nice to be able to do this....something I saw as a "me" project and something I accomplished by sitting up into the wee hours of the morning.




Isn't she gorgeous....yep that's my baby girl Stephanie who turns 15 at the end of March.....where did all those years go?!!

Well that's it for tonight....long blog too...hehehehehe sorry for venting but you know if this blog helps just one person (usually me), one family, one situation then it's worth bloggin' about and I know that I have people who regularly pop by and read my ramblings....yep those of a mum, wife and full time carer to those that mean more then the world to me.....my sweetheart Tim and my teenage kids. Till next time take care and stay safe...hugs Chris xoxo

2 comments:

Sharon Dale said...

Wow Chris, I can't believe all the things that life deals your family. But you keep strong for them which is great. Your poor kids have gone through so much too. I haven't stopped by for a while so I'm off to catch up on what you've been up to :)

Ann-Marie said...

oh I am sending Steps a major cyber ((hug)) u tell her to keep smiling from me okay? I am sure your gorgepus kids have inhereted some of your amazing strength - especially Madi .. amn wht a brave guy. I would have taken the second option and I'm 32!! you take care my friend .. will talk soon.