Poor neglected Blog

I'm sorry I abandoned you for so long.  Honestly, I didn't realise that so much time had past since our last update.

My last post was referring to us fund raising for Joshua.  We have started with great success.  We are about half way to the target of £3,800.  We have had donations from friends and families.  David has undergone a sponsored wax; raising well over £700.  A colleague of David took part in a kayakathon and raised £145.  Strangers have knocked on our door handing over cash and cheques. David managed to get a plug on TalkSport Radio and a few more donations came in.  My best buddy, Liz, is organising a quiz night. So hopefully  another push towards the target.

Before this year is out Joshua will be having another intensive block of therapy at Bobath.  Without a doubt!

www.Joshuas-Journey.co.uk

Let's face it, the PCT are so adverese to funding Bobath treatment. So, David and I have decided to raise the money for him. We've created a website to help. We are asking our local clubs, friends, colleagues to support him. If you've stumbled upon this page, perhaps you too could drop by and donate a few pounds to help him.

www.joshuas-journey.co.uk

Thank you
Tara xxxx

Back to the Bobath

Joshua was lucky to be selected to be a volunteer at the Early Intervention Programme. So today we started a 6 day intensive programme. He has been assigned two lovely physio's who are going to continue the work of trying to improve his upper body strength, so lifting his head and trying to bring his arms into use more. It's difficult for Josh though because he hasn't the visual stimulation. He had a wonderful session but unfortunately he had a seizure at the end which went on for about 15 minutes. But it's only been 3 days since he started his anti-epilepsy medication (Carbamazipine) so hopefully we'll have them under control soon.

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.

Christmas Crafts

Phoebe and I spent the past 2 nights crafting away at felt Christmas trees.  Ahhh so cute.

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!

Some of the Photos are Ready!

Louisa sent me an email with a couple of the photos all finished.  I can't wait to get the disk. Here's a sneaky peek.

The Big Shop

All done and home again.  Lakeside was heaving.  Much busier than previous years.  I thought the country was in financial ruin?  Or perhaps people just don't care?

Anyway, for obvious reasons I can't post here what was bought.  But having arrived home exhausted but completed Joshua managed a few minutes in his Squiggles chair.

I don't think we've over done it this year, it's hard having 5.  I'm glad we made a start earlier in the year.

I did buy some cute decorations.  I'm planning on putting the decorations up on the first Sunday of Advent, the 27th November.

A Visitor for BenBen

Our Lovely Liz and SamSam came to visit today, for our Ben's birthday.  We had a lovely day.  Ben received Woody, who he just loves.  The boys played together.

Liz is perfectly glowing, with just 7 weeks until Buzz arrives.

We all settled down in the evening to watch Toy Story, the boys had pop corn.

Ben is 3!

Ah my little BenBen, the Wild Child.  He is 3 today.  He got to open his presents before going to school and have a little play.  But because it is a school day we just need to get on with things, sorry kid!

He did have his Godparents, Mike and Cath pop round on Saturday, we had a lovely curry.  And his Auntie Liz and SamSam will be coming to see him this Saturday.  We'll have a little tea party and play some games.

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.

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.