Speech Assessment

We had Owens Initial speech therapy assessment at home today.
Owens speech and ability to communicate has always been one of my most prominent worries. Communication skills are vital to enable Owen to interact, form relationships, to communicate his thoughts and ideas, to learn and potentially work. Communication is undoubtedly the key to fully participating in the world we live in and to independence.

Before this appointment I had lots of thoughts going through my head.. What if they told me "No... nothing we can do, he won't be able to speak or communicate"? What if? What if? Always so many questions.

I was pleased to find that the speech therapist was the same lovely lady that worked with Lilly before she started school. Firstly I was relieved that she had obviously studied Owens notes before she came to me. That meant I didn't have to spend the first half of our appointment going through Owens "Medical Back History" ( its a long and complicated one as you can imagine)

 Owen can only make vowel sounds, but does so more frequently, particularly when playing. Owen has his own ways to communicate his needs.. facial expressions, different cries, body language etc.. She said this was all such a positive sign.
The speech therapist said we could start using a few Makaton signs for him, like the sign for "more" (Makaton is the sign language Mr Tumble uses) At the moment his high muscle tone will not allow him to sign himself, but hopefully in time this will be a real possibility. I will also attend a course at some point all about Makaton signing.

Unfortunately there is a 6 month waiting list for speech therapy. Although the Speech Therapist said she will be visiting the Opportunity Class we attend, so will see Owen there in the meantime. 
(Opportunity class is an early invention, teaching parent, special needs playgroup.  I  attend a weekly session with Owen and Florence during term time. It is basically like a playgroup/nursery that parents attend with their children, except the children attending have various additional needs. The "teachers" are highly a specialised early years for children with special/additional needs.)

The assessment was soon over and she said that many of Owens problems were probably more developmental delays than anything, she also said when leaving that she really looked forward to working with Owen and his family. She left me with plentiful of ideas, but most of all she left me with HOPE.

No particular reason for this picture of Owen other I just love it. xxx

Harry Potter

Chapter one " The Boy Who Lived"

The book tells the story of a baby who survived the most dark and powerful evil in the world.
He survived because his mother stood by his crib and protected him with her love.

The boy is left with a scar on his forehead.  The scar symbolizes everything unique and astounding about the boy.
The boys forehead scar is a badge of honour,   an emblem of having survived a great battle and of being destined to wage further more battles.

Owens "Harry Potter" scar 

Owen and mummy

Baby Blue Eyes

Even though I tried we still couldn't escape from all of Owens appointments last week while Alex was off work.

Tuesday, Owen had an eye appointment at the hospital. As it was an  rescheduled appointment made through the post and not one I had made, I didn't know who I was seeing.  The letter didn't detail this and after phoning the number the receptionist couldn't tell me either. 
 Owen usually sees an Ophthalmologist, they are doctors who deal with all aspects of eye care including Vision services, Medical eye care, Surgical eye care, Diagnosis and treatment of eye conditions and also Plastic surgery.
 Last time at Owens eye clinic he also saw an Optometrists, They mainly focus on regular vision care and prescribe glasses and contacts. That day we were taken to the waiting area to wait to see the Optometrists.

Owens eye problems started in while in Special Care. Babies born before 30 weeks have retinal eye exams, the first one being when they are about 4 weeks of age. They are checking for a condition called Retinopathy of prematurity (ROP)
During pregnancy, the blood vessels in a baby's eyes begin to develop at around 16 weeks and by 34 weeks the blood vessels in the eye are well enough developed that the retina has a good blood supply.
When babies are born early, the blood vessels on the retina are not fully developed. After birth, the vessels may begin to grow too quickly. that they damage the Retina. ROP is the most common cause of childhood blindness. There are 5 stages of ROP; stage 1 is mild up to stage 5 is total retinal detachment.
At one of Owens eye exams he was found to have stage 1 ROP which they would check again in a few weeks to see if it had got better or worse. The next  booked appointment was actually the day after we were discharged and ended up being my first solo outing with both my twins. That appointment showed no change.  After two more appointments Owen finally got the all clear from ROP, But was found to be longsighted, this may improve as he grows or he may need glasses....  Glasses I can live with.

I have always questioned Owens sight, Owens eyes looked too low and unfocused he would just stare with blankness. People would ask how much I thought he could see. Even now people ask if he can see as he is not always fully focused. The answer I don't know, I know he sees something, but his sight is definitely variable. I know at the previous Ophthalmologist appointment apart from being  longsighted nothing else was found to be physically wrong. I do wonder if its the PVL raising its ugly head again. I wonder how much of what Owen eyes see, his brain computes.
I read about a condition called Cortical Visual Impairment (CVI) it's a condition that is caused by a brain problem more than an eye problem. When reading about CVI it suggests by doing certain exercises you can retrain your brain to see more clearly.

Anyway going back to Tuesday, Learning that our appointment wasn't with the Ophthalmologist I did feel slightly disappointed as I was armed with questions.  The Optometrists  proceeded to shine a light in Owens eyes, which he failed to follow. I explain how I felt his sight seemed variable and asked why? She didn't answer and got off her chair and went over to a drawer to search for something more "fun" for Owen to look at, She pulled out a pencil with mickey mouse on top.... Very exciting? Owen still failed to follow,  but when she went back to the light he started to follow. "Yes he is definitely variable" 
I tried to ask her a few more question but she wasn't very forthcoming. She did however give me a slip to make an appointment to see the Ophthalmologist. Unfortunately the appointment isn't till October so I guess I will just wait and add my unanswered questions to my very long list of unanswered questions.

Owens eyes looking more low down.

 

A little more focused and in the centre

Very centred and much more focused

Raining tears of laughter

Last week was a very busy one in the Skelton Household, Actually in our household it is always a busy week in one way or another, but last week it was busy for much more fun reasons.
 Alex had a whole week off work. This was particularly good as for more than a year this was the only time poor Alex has had off work, which has not been due to spending time in Special Care or Hospitals, Attending appointments, Being ill or looking after the household while I was ill. Alex's week off was very much overdue.
 We was hoping to plan a last minute UK get away, But as our too "small" car hasn't sold, we are still stuck for transport, so family days out were on order.

We started our week by going to one of our favourite places, our local park Cassiobury. All the family went including our mad hatter springer/cocker spaniel "Fergie".  Fergie has recently got so much better off her lead, so instead of us walking the pulling steam train, it was a much more of a pleasant experience. Fergie loves her new found freedom and particularly loves bouncing through the long grass chasing butterflies. It is such a joy watching her big floppy ears flapping up and down her long comical tongue hanging out to one side.. watching her care free nature you can't help but smile.

 Alex decided to take an exhausted Fergie home, while the girls put on roller skates and we slowly and tentatively made our way to the playground. 
 Not long after reaching our destination a dark cloud suddenly descended over us and then a few drops of rain fell from the sky, the drops fell faster and harder. I quickly unfolded the raincover and impressively threw it over the pushchair as the rain started pelting my back as I leaned over. I called over to Lilly and told her to run for the trees as the heavens opened. Sounds of panic were let out as families sped with pushchairs filled with tearful babies, rounding up children, grabbing picnic blankets and other items brought for a sunny family day out on the way. Everyone too scrambled torwards the trees. 
I looked for Beth, she was sheltering under a slide with one of her best friends who was also in the park. I ran to Beth passing her an umbrella in hand and she slowly made her way on roller skates under the tree. More than 30 of us were sheltered under the same small group of trees. 
The girls and I found this Hilarious. The rain slowed down, so I checked my phone to see a number of missed calls and text messages from Alex.
Alex had managed to get back to the park after taking Fergie home and was under a shelter at the top of the park dry as a bone. We made a couple of attempts to meet him but each time the rain started again causing us to retreat back to the same trees. Beth finally took of her skates and when the rain again died down from a tropical storm to a shower we took our chance to walk up the park in the rain, jumping in puddles on the way to be reunited with Alex.
 A dry Alex couldn't hide his laughter as he saw us drown rats walking torwards him.
Something about getting caught in a down pour is exhilarating.. and just plain funny.

A photo of us hiding under the trees

Rain appeared a lot during our family week, but we didn't let it stop us having fun.

 "Life's not about waiting for the storm to pass, it's about learning to dance in the rain"

 

 

 

 

About a Boy Named Owen

Owen as I have already mentioned, was born 12 weeks early at 28weeks alongside his twin sister Florence.
Owen had it tough while in SCBU, there were many many dark days where all we could do was sit by his incubator and just plain HOPE.
I will at some stage probably go into more detail about our experiences in SCBU but this post is basically just a quick overview of his medical story.

Owen has Chronic Lung Disease and came home on oxygen to be weaned off it completely by the end of January.  Owen was also diagnosed with having PVL after a routine head scan followed by a MRI scan two weeks before coming home from SCBU. He has some kind of Cerebral Palsy because of the PVL but we have not got a definite diagnosis of "which type" he has as yet.

http://www.scope.org.uk/help-and-information/cerebral-palsy/periventricular-leukomalacia-and-cerebral-palsy

Owen as you can imagine has lots of Hospital and Doctors appointments. He has Physiotherapy and Occupational Therapy and we have to do his movements, stretches, exercise and play therapy on a daily basis. Owen also is part of an early intervention programme and is waiting to see a speech therapists who will also do an eat study.

So in a very small nutshell.. That's about a boy called Owen but only in medical terms as there is so much more to Owen than his medical history and on going problems.

https://plus.google.com/112793738223181013684/posts/ZjqJP9mP6jF


Hopefully the above link is to an excellent fellow blogger that I have subscribed to.

I came across this blog slightly by accident.  I was on Google looking up various aspects of PVL and becoming pretty frustrated that none of my questions weren't being answered.  I then just googled "Owen PVL"

Born at 28 weeks!!!

Another blog entry looking back.. this one details the moments before and immediately after when they were born.

Not 2 minutes after the girls and my mum left I was wheeled upstairs. Alex got whisked off to change into scrubs still not knowing if was actually going to allowed in yet and then I got wheeled into the theatre. The anesthesiologist checked if we had enough time for me to have a spinal block, not everybody was ready yet so he said we did. I was please the thought of being put to sleep scared me, I really wanted to see my babies born and mostly \\i was pleased that Alex would be able to be there.
The giving me the spinal block was suprisinly painless. I then was prepped for theatre, as this was going on I can remember was the endless stream of people pouring in all busy making there own preparations. I remember looking over to my right and saw two respriators marked twin 1 and twin 2 suddenly it hit in a matter of moments my babies were going to be born.

Considering the amount of people in the room and the urgency of the situation the atmosphere remain calm and relaxed throughout. I remember talking to the anestheiologist and his assistant about our girls and the baby names we had chosen.  I remember hearing others chat about the Olympics tonight was the night of the opening ceremony some had sky plus it and the anestheiologist had volunteered to help as part of the medical team. as they chatted I felt a lot of tugging and pulling and I was dreading what was going to happen next I was so scared.

at 18.49 on the 27th july twin 1 was born, what happened next astounded me I heard a cry, a proper new baby cry. I never thought a baby born at 28 weeks would come out crying. No sooner as I was getting my head around the sound of crying at 18.50 twin 2 was born and then I heard another cry a tiny bit of relief came over me they were both out and both alive. thet were taken over to the resprators immediately after birth not even time for a quick snatched look ove rthe sheeting. alex look over and I told him to go and see them. he took his camera

The next thing was the neonatal team were wheeling the babies out and across to the the neonatal unit. With each baby before they left the room they wheeled by me , paused just at my bed side giving me a quick first glimpse of my babies then quickly sped off again. each time they stopped I was even more surprised that each baby had there eyes open. I looked deep inside there eyes and before I knew it they were gone.