Bobath Centre for Children with Cerebral Palsy

Joshua was lucky enough to be offered a 2 week treatment block. Which we completed today. I have to say that this post is about to be a complete rave about how good they are.

Joshua was assigned a physiotherapist on the first day. Upon attending it was obvious that the PT had read all of Joshua's notes and discussed him with the Senior PT that he met at an earlier consultation. She watched Joshua's movements and communication intently.

On the second day we were joined by an Occupational Therapist, who spent a lot of time looking at Joshua's vision.

Each day Joshua's tolerance of touch, positions and activity increased.

For 4 days we were joined by a Speech and Language Therapist, who spent a lot of time helping Josh to play, showing us to wait for Joshua to respond. And what to accept as a response, be it verbalising, a smile, or even withdrawing and crying.

We spent a lot of time concentrating on Joshua's arms, trying to bring them forward to make play more accessible. Trying to bring his shoulders down, to try and reduce the tone across them.

There was a lot of tummy time, trying to get Josh to lay with his arms supporting him, this enabled better head control.

We spoke about feeding, sleeping, playing, relaxing.

All the staff are amazing, and they all care so much.

Another brilliant factor was meeting other parents, sharing a cup of tea and listening to others experiences.

Josh will be attending again in March to attend the Early Intervention Course. This should reinforce everything he's already learned. And the next goal is to obtain PCT funding for another 2 week block in 6 months. Fingers crossed!

Like I said, this is a post of praise. It's also a post of thanks and admiration.

My friend had her baby (in October)

Ok, ok, it took a while.  I've finally organised them to visit, tied nicely in with me finishing the babies blanket.

Ripple Blanket

I've sized it so it can be used in the pushchair or swing.  I'm happy with how it turned out.  I hope the little lady likes it. 

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.

A Glimmer of Hope

At Speech and Language today, Joshua closed his mouth on the bottle (Haberman) and suckled, just for a second but he did it.  Then after a bit of fussing he did it again!  So clever, so needed.

So we are to strike whilst the iron is hot and try to progress to the bottle permanently.  It is going to be hard but seeing him close his mouth just reinforced that he can do it.

We felt so lifted by this small accomplishment.  We've had very little progress of late so this seems like a huge step forward.

Unfortunately, not getting the breast gave Joshua the right hump.  This meant he was not too pleased to see the physio's.  The Occupational Therapist also arrived today to measure him for a chair.  (I hate that he needs this stuff), so he moaned, screamed and cried during the entire session.

The poor boy also cut his first tooth last night, after weeks of it being just about ready.

So fingers crossed, this bottle malarky works and I can get back on the meds.

A Belated Happy New Year

We had a lovely quiet Christmas.  Nothing complicated, no arguments, lots of games. Nice! That's how Christmas should be.

I'm a little bit saddened however, because I haven't seen any progress with Joshua over the past couple of months.  Eg, no rolling, no sitting, no purposeful movements.  We are doing light treatment, which is nice as it simply consists of playing with toys, torches and shining lights in Josh's area.  Although that very much depends on his mood.  And to top it all off, my poor darling is teething.  Oh, the pain, it seems unbearable.  A little Calpol (infant paracetamol) works wonders.

Absolutely no progress on moving to bottles.  He is simply not interested.  My Mother-in-Law bought a new one from TK Maxx, like the Special Needs Feeder but less complicated, with a softer teat.  We've tried applying dinner/pudding to the teat.  If anybody reads this and has tried something we haven't please, please let me know.  Josh is seeing the Speach and Language Therapist today, hopefully they will have thought of something.

My Oliver started school yesterday, here he is in his new uniform.  So handsome.

So now we are back to normal.  School runs, after school clubs, madness!

The weekend is nearly here, we simply must have some fun to relieve the pressure of this first week.

No funding for Joshua

Joshua's application for funding to attend the Bobath Centre for Children with Cerebral Palsy was refused. We haven't had a letter explaining the reasons. Bobath actually contacted us with the news.

As David pointed out, the PCT/NHS are more than happy for him to undergo needless appointments, like audiology, when there is no concern for his hearing, repeated ophamology, when there is no change to his vision, an offer for a visit to a neurosurgeon, when there is nothing to be achieved. But no help at all for Bobath, who's expertise in the field has been going strong for over 40 years. Early intervention is key!

I await a letter to explain why Joshua can't have the best therapy available.

In the mean time we are going to self fund a consultation and take it from there.

No Progress - Yet!

Joshua has had a cold so I've not been offering the bottle. Hence the no progress. He has been out od sorts, and more than a touch miserable. We were worried earlier in the week, but a visit to the GP reassured us that all is well, it is just a cold.

The snow has prevented me from venturing out.

The Christmas decorations are up. Which is nice. On Thursday me, Oliver, Ben and Phoebe made paper chains. Such satisfaction from a little task. The boys were so proud of their work.

Quiet week really.

Sorry I'm not feeling inspired to write today.

I think I'm a little preoccupied with Joshua's PCT hearing on the 9th.