Thursday, 8 December 2011

Facing Reality

Recently we have been dealt two big blows in regards to Bree.

First we were advised that Bree's Infantile Spasms ( a form of Epilepsy) have most likely progressed to Lennox Gastaut Syndrome (LGS), a rare and very serious form of Epilepsy. This involves multiple seizures on a daily basis that cannot be completely controlled by medication. A very common occurrence with LGS is developmental delay, it is not unusual for a seizure to essentially "delete" learnt information from the brain.

Our second blow is that Bree has been assessed on the Gross Motor Function Classification System, or GMFCS for short. This is a scale used to predict how a child with Cerebral Palsy will progress through their childhood. On a grading of 1 to 5, with 1 being the best outcome for a CP child, Bree is a clear cut 5.
Her Cerebral Palsy is classified as "severe" and the prediction for her mobility and muscle control is "all areas of motor function are limited. Functional limitations in sitting and standing are not fully compensated for through the use of adaptive equipment and assistive technology". In basic terms it means that even with all the special equipment we use, Bree will never be able to perform everyday activities like other people.

We had already come to terms with the fact that our beautiful girl would likely never walk without assistance and specialised equipment, however we weren't aware that she would also never sit upright on her own, crawl or even roll around. It actually goes a lot further than that. It is not only her head and trunk control that is affected, but smaller movements such as arms and legs, chewing, swallowing and even breathing.

No one plans to have a disabled child, actually it's one of the things most new parents dread. When we discovered Bree had Cerebral Palsy we took some time to deal with it. We knew things were going to be different for us from that moment on. A multitude of therapies, new ways of feeding, new ways of doing almost everything. Through the entire year since her diagnosis in January we have kept ourselves going, trying to keep positive, by comforting ourselves with the fact that the brain is an amazing organ and that we could teach Bree to overcome her disabilities, to a degree.

I guess we were kidding ourselves just how much she could improve, but we didn't know any different. We know one little girl who has CP and they told her she would never walk, now she runs!
So, naively, we thought Bree could achieve the same.
As time progressed we realised this little girl has a completely different type of Cerebral Palsy and that Bree would require a lot of extra help, but we still didn't see just how big the gap would be.
In the last few months we started to accept that Bree's CP affects her whole body and that she will most likely need a wheelchair to get around.

Still with all these realisations and acceptances we didn't understand that Bree's head and trunk control, while it may improve, will never be at the level needed to maintain a seating position.

Although she has apparently always been a level 5 we weren't made aware of it and so we haven't been completely prepared for the changes that are to come.

So now comes the planning of our new life ahead of us, definitely not what we were expecting this time a year ago. A year ago we were getting ready to have Christmas with Bree for the first time. We bought toys she could use in the coming months, seats and playgyms, big cuddly toys she could wrap her arms around and play with as she started crawling.

This year we are organising more specialised, adaptive equipment so she can continue to participate in daily life. The toys we are buying are the same as parents are buying for their new babies. Her big gift I've asked the families for is a new mobile to go above her cot. The grandparents are struggling to find the "right" present for her and I feel guilty that they can't spoil her like they want to.

In the coming years we have to modify our house. Now we will need an all abilities access bathroom because our shower over the little square bath won't cut it for much longer. We will have to put in ramps because it's split level and I won't be able to carry her up the stairs as she gets older and heavier. The doorways will need to be large enough to fit a wheelchair.

Eventually we will need a new car that accommodates a wheelchair, it will probably need a hoist.

Slowly, but surely Bree's beautiful little girl's bedroom will look more like a store room for all of the medical supplies and adaptive devices she will require.

Does Bree's latest diagnoses change how we feel about her?
NO, we love our little girl just as much as always.

Will we stop doing her physical therapies even though there doesn't appear to be any benefit?
No, of course not, who are we to say they don't help.

Do we want more sympathy from everyone?
No, we don't want anyone feeling sorry for us in the first place.

Does it hurt to know how hard our beautiful baby's life is going to be?
YES, it hurts a lot.

Wednesday, 16 November 2011

Why Doesn't She Eat?!

People often ask "Why doesn't your baby eat?", "Why don't you try harder to get her to eat something?" I get questioned why I feed her with a syringe or pump and a tube and I get a lot of questions about how it all works. Here's my answer!

Cerebral Palsy affects muscle tone and the ability to control muscle movements. In Bree's case she has what is referred to as Spastic Quadriplegia Cerebral Palsy. This simply means her muscles are always tight and it affects her entire body

Did you know something as simple as eating uses 20 different facial muscles? Add in the ones engaged to sit upright including the head and trunk and all of a sudden feed time is a huge workout!

Unfortunately so much of a person's development is directly related to their ability to feed.

Feeding skills first start to form in utero when the baby makes sucking motions and sometimes even finds a thumb to put in their mouth. When bub is born they further develop as they feed, through the sucking and drawing movements they use to take milk. As a baby reaches the 4-6 month milestones they use their oral skills to mash food with their gums and drink from a sippy cup. Later this turns to chewing and sucking from a non spill cup and before you know it you have a toddler that eats and drinks anything!

As the oral skills used for feeding develop so do the ones for speech. If you think about a baby's vocal skills you can see the direct relation. When a baby is first born they make noises from their throat, we know this as crying. As they develop their skills they start to make gooing and gaaing noises, this turns to simple words such as "dada" and "mama". From here the first words will form and an understanding of language develops as well.

Although these seem like simple progressions the processes involved are great. There is a lot of mouth and tongue control needed to mash pureed food between your gums and push it down the back of your throat. These are the same muscles you use to form those first simple words.

Ideally we want to encourage speech and oral feeding so we work on Bree's oral skills every day. We call it speech therapy and she has a specialist she sees regularly for this. It really means that we give her small feeds throughout the day so she can practice using those tongue and mouth muscles. We also do tongue "exercises" and place pressure under her chin so she is more aware of the muscles she needs to use.

We are having success with this, slowly, but surely! Bree can make a lot of noises from the back of her throat and also says some simple words "daddy", "mum", "hey" and "no". She doesn't say them a lot, but she can form them at times.

Unfortunately there is absolutely no way that Bree can eat enough in a day to maintain her weight. So while we spend a lot of time and I do mean a lot feeding Bree orally each day this is not actually how she receives her daily requirements.

To ensure she receives enough nutrition throughout the day Bree has a feeding tube. Originally this was a Naso Gastric Tube which went through her nostril, down the back of the throat and into her stomach. This is a short term method and is quite often used in premature babies at birth. As we are looking at tube feeding being a long term solution we now use a slightly different method that works in much the same way.

Bree now has a Gastronomy Tube, or G-Tube for short, this is a one way valve that goes directly into her stomach. A hole has been made, much like when an ear is pierced and a "button" has been placed externally. It is hidden under her shirt most of the time and when she needs a feed we simply open the valve and "plug in" a tube, we use a syringe to push her milk through. We also have a pump which we can use to give a set amount over a set period. It did all seem a little bizarre and overwhelming to start with, but this is our normal now.

So why doesn't my daughter eat and why don't we try harder to get her to feed?

It's not a case of Bree not eating, she spends a lot of time eating. She simply can't control her muscles enough to eat the amount she needs to.

Simple, right?!!

Wednesday, 9 November 2011

To Sue Or Not To Sue, That Is The Question

I was having a conversation with friends today about children with disabilities and how often it's the hospital's fault that these babies had complications.
All too many times the staff are to blame for birth related injuries and Bree's case is no different. Although no one in the medical profession will admit that her PVL is a direct result of Bree's traumatic entry into this world we are all too well aware of how the damage occurred.

The question this always poses is why haven't we sued the hospital. We know they are at fault, we know Bree suffers everyday because of their mistakes and we know we have every right to do it.

While it is true that a cesarean could have prevented Bree's injuries I have some issues with the whole concept of suing.

Firstly I hold the firm belief that without the staff on that day we wouldn't have Bree with us today. They saved her life. When the nurse realised that our baby was in distress every effort was made to get her out quickly. When Bree was born and wasn't breathing the NICU team resuscitated her on the spot. Yes, there had been errors with the labour, but there wasn't a single slip up when she was born.

Secondly, I don't believe that one person should get the funds that are meant to benefit everyone. That goes for any business, organisation or individual. If we were to successfully sue the hospital what would that mean for other families in the future? Without funding hospital based programs can't run, wards close down and people are refused care. Doctors start raising their fees to cover higher insurance premiums and the costs for an average family spiral out of control. How would we feel if we were one of those families?

Thirdly, we use that hospital. We use it a lot. On average we have an appointment once a week. It's our regional base and when Bree gets sick our local hospital transfers us there. If we need scans or tests performed they are carried out at that hospital. If we were to sue, it wouldn't exactly be right to continue to use those services, would it?

Lastly, I know the money would help and god knows we could use it to pay for all the extra things we now need as a result of Bree's physical limitations, but it won't change anything. Our daughter still has Cerebral Palsy. It won't disappear because our bank account has increased and no amount of money will change what has already happened.

Sunday, 6 November 2011

Welcome To Our World...

Bree was born prematurely at 32 weeks and 5 days on the 21st of July 2010.

After a shaky start we thought we were taking home a perfect little baby with no health issues... and she was, until the fun began...

With her diagnosis of Periventricular Leukomalacia at 6 months old came a scary new world that we had no idea existed.

A world of endless appointments and check ups, equipment we had never seen before and jargon that requires a medical dictionary to understand.

It also opened another world completely foreign to us, a world that isn't always accepting and understanding, a world full of judgement and a world where you stop taking things for granted.

This is our journey into that world...