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.

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.

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!

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

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.

It's David's 35th Birthday

David woke up to a morning chorus of "Happy Birthday" performed by the Sproggs and myself.  


Unfortunately the personalised gifts haven't arrived, but his Sherlock Holmes tickets have.  Jean is all booked to come over for a little baby sitting.


After going to the hospital with Joshua we were off.  The only dampener being the use of public transport, yuk.

Josh update

We know we've still got a long way to go until we know with any certainty what's instore for Joshua. 

Josh had an opthamology appointment today (also David's birthday).  They could confirm that he has healthy eyes, he is short sighted.  We have to go back next month to see the consultant.  Hopefully he will be able to say whether the brain is receiving any information from the 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?

The completion of our family

Joshua Noel Haroon arrived on 4th March at 18:10, he weighed 5lb 6oz.

Ben and I were laying on the sofa, watching Mickey Mouse Clubhouse. At 15:00 I had a strange warm sensation, standing up I noticed blood was pouring from me. I now know that it was my placenta that had ruptured, I'd had the day off due to being up all night with a tummy bug (such awful cramps). I called David, he was picking the kids up from school. I called the maternity ward, they suggested I call an ambulance, which I did. I called lovely, dependable Tessa to come and sit with Ben until we could sort something out.

I was worried about the kids coming home and seeing the blood, but knew I'd just have to deal with that as it happened.

The ambulance and Tessa arrived at the same time, both within 10 minutes of being called. The lady paramedic helped me put some clothes on and we left. As I was leaving David arrived with Phoebe and Oliver. They looked worried but I think I reassured them that everything was ok.

Off we toodled in the ambulance. They put me on a saline (I think) drip, to be prepared in case the hospital needed to give me any medication.

Once at hospital nothing happened for a while. I wasn't in any pain, I didn't have a clue what was going on. I didn't know if the baby was coming or not, whether I'd be discharged, whether the bleeding was important, nothing. The medical staff aren't particularly good at providing information, I'm not very good at knowing what questions to ask.

A little while after arriving I was examined and was 3cm. The baby was being monitored and the scary doctore said he was going into distress and that I may need a cesarian, I was terrified, I thought she was over reacting as I still wasn't in any pain, she called a registra for a second opinion, who said I should just be allowed to labour. Just before 18:00 I started having contractions. The baby arrived very quickly.

Earlier I was warned that he may need to go into special care because of being 6 weeks early. Once he arrived he cried, best noise to hear, then he was put under the resucitator with the heat lamp on. A nurse and doctor were working with him. After giving birth I was a little out of it, stunned, confused. I didn't have a clue what was going on.

Whilst the nurse was giving the baby oxygen, David and I decided that the baby would be called Joshua. All this time we still weren't allowed to hold him. I was put on a drip to help my uterus return to normal. Joshua was transferred to Special Care, Elizabeth Ward.