A Ray of Sunshine

If Friday was a glimmer then today we have a ray of sunshine.

Sleep
Josh has been sleeping slightly better at night 4-5 hours straight.  This is amazing, considering for months the best he has had is 2 hours straight.
Feeding
Josh has still not had a breast feed since Friday morning (before the SALT).  He has had a few ounces of breast milk as I've been expressing but he has had it all from the bottle.  I am a little concerned about the amount of fluid he is taking but he is have slightly wet nappies, he isn't lethargic and he is eating his jars very well.  Dave said I should stop panicking.
Physio
Josh's tone has not been as increased as previously.  He does still get frustrated and extends through his back and legs but not as frequently.

Joshua had to have that awful Electro Physiology test today.  It takes 2 hours and he has to have contacts placed all over his head.  It's not very pleasant for him.  I was pleased though, because a couple of times he purposefully swiped the contacts from his brow, much to the technicians dismay.  It was great to see him do something with meaning.

In relation to the test, I'm not expecting any changes just yet but I hope that with the light treatment and Great Ormond Street Hospital Visual Development Clinic that things will slowly change.

Speech and Language

Joshua had his first appointment with the SALT today.  I'm not entirely sure what I was expecting, not a lot to be honest.  I thought they may come up with other suggestions or methods.

We have been trying Josh with many different bottles, Tommee Tippee Closer to Nature, Avent.  Not too mention training cups.  But he point blank refuses to try.  Now whether this is because of texture, warmth, his visual impairment, stubbornness, inability to learn how to suckle from the bottle; I just don't know.

The SALT suggested we could try the Haberman Feeder, apparently many babies with special needs take to this bottle.  Definitely worth a try.

They also suggested the Medela feeding cup.  I'm a little concerned that if he could master this he would lap the milk, this is something we've been trying to discourage as it can lead to dental problems.

Worst case scenario we were told that if we need him to come off the breast (which is becoming more important as my arthritis is now chronic) he may have to be tube fed.  We don't want this.  The ability to eat is so important.  The SALT explained that if this route were taken Josh would also be seen by a dietitian.  Plus we would have to spend a couple of days in hospital learning how to administer the milk.

So in a bid to avoid this I've found an online retailer who stocks the Medela range.
http://www.expressyourselfmums.co.uk/products.asp/subcatID/26/breast-milk-cups-and-feeders

Hopefully Joshua will not be stubborn and will take one of these!

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.