Sunday, October 31, 2010

Bottle Feeding / Breast Feeding Nightmare

So I was feeling really strong, really positive, really... and then... he just wasn't drinking anything.  I offered expressed breast milk, formula milk, baby juice, cooled boiled water, I offered them in bottles with varying lids and beakers, sippy cups and a sports bottle.  Well he took 4 oz on Saturday but that was it.  By Sunday morning his nappies were bone dry.  He even stopped eating foods, now our Joshua loves his breakfast.  By early Sunday afternoon I was beginning to panic.  So... yep, I breastfeed him.  I know that I broke my resolve, but seriously was I supposed to let him become ill?  I can't feel guilty for feeding him, but I have to work out how we are going to resolve this.  I need to take some medication for this miserable arthritis.

Friday, October 29, 2010

Making the Move

I know that Joshua needs to take the bottle. I know I'll be a better mummy to all my kids if I can start taking my medication for arthritis. The nurse at the Rhuematology clinic thinks I need to "try harder", giving me her experience of her own 2 children, not listening when I'm saying yes I know I have 5!

I have had a couple of conversations with Gail, a very experienced Nanny. She had a couple of trains of thought, 1, as Joshua can't see I should do the move to bottle, 2, start with breast milk then add it to the formula, 3, Dave should take over I should go out, 4, he could go 2 days before 'giving in' (horrible term), 5, watch out for dehydration. Plenty to consider.

I woke up this morning and thought, let's do this. Let's just get it over and done with so we can move on. He had his last breast feed at about 7 this morning. Since then (it's gone 11pm) he has had breakfast, lunch and dinner but nothing to drink. Although he finally took about half and ounce and hour ago. I've just expressed 5 ounces for him and Dave will stay in the front room with him tonight.

But let me say, I feel bad, guilty, worthless. It's like the one thing I can do for him, I actually can't.

I hope that overnight he becomes a happy bottle fed baby because once I start taking the medication and can move more freely surely I'll be a better person then? Less grumpy, more mobile, freer.

I didn't put Josh in his Squiggle tonight either as he is so tired from crying and fussing. Again, hopefully tomorrow will be a better day.

On a very different note, Dave went to work dressed up as today was Halloween at the Arc.  He had some interesting looks as he rode in on his bike

Wednesday, October 27, 2010

Hope Afterall!

Josh had physio again today. Thankfully Jean came over to take the other kids out, off they trundled to the Museum of Childhood. I got an hour to myself (Josh had a little sleep) to watch Downton Abbey, I do love a good period drama.

I had to explain the opthamologists finding to Joshua's physio's. They were not as doom and gloom as the optamologist. The Bobath principle taught them that the vision can come and go, much like the tightness in his muscles.

They also gave Josh his Leckey's Squiggles Activity Centre, see the picture of our boy enjoying it at home. It gives him the opportunity to sit, supported and interact with us, toys, his surroundings. Also for tummy time to supports can be used to support his little bum which means I get to play with him rather than just supporting his weight.
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Monday, October 25, 2010

Cerebral Visual Impairment

The dreaded appointment for ophthalmology arrived.  I've been feeling sick about this.  I've also been an incredibly moody cow, moaning and shouting at the kids.  Not good.  I apologised to Owen this morning after a particularly bad shouting session.  It's not OK for me to take it out on them.  He understood, thankfully.  With all this going on we need to be a strong, united family. Not a destructive, hostile one.

We arrived at the appointment and was seen by an orthopist, after telling him there has been no change, no fixing or following.  He proceeded to wave a toy in front of Joshua's eyes.  Then explains that the results of the electrophysilogy have not been received.  My stomach plummeted, i'm thinking "so I've been feeling like this for nothing".  But he continues the secretary is chasing up the results.

We return to the waiting area and wait, and wait.  Finally Joshua is called.  The opthamologist explains that the test showed his retina is healthy, I'm thinking "we know his eyes are healthy, you've already told us that at previous appointments" .  The other test to see if the brain is receiving the messages from his eyes showed nothing and should be repeated at some point.  I asked straight out, "is he blind", "yes".  So there we have it.  My poor baby who is nothing but goodness is blind.  You can call it Cerebral Visual Impairment but it means the same thing.

I'm really trying to be strong, David is so upset by it, I've already been upset by it. I knew, we both did, but having it confirmed is pretty awful.  I need to be practical, think of ways to stimulate and help Josh enjoy life.    

We had made plans to take the kids to the Natural History Museum after the appointment and we were glad we did.  Otherwise we woud have sat around, crying, feeling sorry for Joshua, or worse, feeling sorry for ourselves.

Wednesday, October 13, 2010

VEP Test

Josh is still not fixing and following.  The ophthalmologist referred him to Moorfields Eye Hospital to have VEP tests carried out.  Contacts were placed on Joshua's head and a light flashed in front of his eyes at varying speeds.  The contacts should read whether his brain is receiving the images from the eyes.  However, like everything else, no results today, we have to wait to see the Ophthalmologist at Royal London.  Come on! Really! More "Wait and See".