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.

1 comment:

  1. Sending you massive big hugs at the moment. Just can't think of anything to say other than wishing you strength and hope for each and every day. Ingrid West