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.

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!

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.

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.

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".  

Neonatal Development Clinic

Second appointment of the week, development clinic. I think we knew what to expect... Nothing, or wait and see. Sure enough that's what we got.

The doctor was one we had seen before. He was the consultant who first told us Joshua may have some mobility issues. This was when he was 9 days old. They had seen white cysts on the scan taken through his fontanel.

Today he said that he would term it 'evolving cerebral palsy'. That is to say that it appears that cerebral palsy will be a part of his future. Nothing new then. He did however agree to write a letter to the Bobath Centre in support of his referral.

Joshua was in such a happy, playful mood when we were with the doctor. Giving him all his best smiles and coos. The doctor was clearly taken with him.

Opthamology... again

We haven't been looking forward to this week. But we better get it over and done with.

Joshua had opthamology again today. We went expecting to find out whether his eyes were sending messages to his brain. But came home with the same answer, wait and see. Wait and see, wait and see. That's all they ever say. Surely with all your advanced science, your tests, your knowledge you can give us something more than wait and see? No? Thought not!

We can still cling onto the hope that he may have developmental delays in his eyes.

A Routine Follow Up - I don't understand!

Joshua had a routine (we thought) follow up at the hospital.  David and I were both under the impression that this was because he had been on Special Care, even for only a few days.  We did know that there were carrying out one final ultrasound on Joshua's brain, to check it's all ok.


The first doctor carries out the ultrasound and then disappears off to discuss the results with another doctor. Some time later the other doctor arrives and repeats the ultrasound.  We are then sat down and told that Joshua will develop problems with his motor skills.  David has worked with all sorts of kids, with all sorts of medical problems "is it Cerebral Palsy?" he asks.  The doctor confirms that Cerebral Palsy is the likely outcome, however there is no way to determine the severity.


We were knocked for six! We truly thought it was just a precaution.  I certainly didn't think the doctors would be saying my son was brain damaged.


Joshua was referred to physiotherapy, I didn't know babies of just weeks could have physio.  Another appointment was made for neonatology and we left in a daze. 


We were also unfortunate enough to get a ticket for parking on the red route, which I will contest.  Strangely I did not even think about the car once during the entire appointment.


What next? What do we do? What questions should I be asking? Who should I ask?