I’ve been reluctant to write a post simply because I’m feeling like I might jinx us.
We had mostly bad days across November, December and January and any days that were better didn’t last very long. Even on good days the bad ones lingered in the background like a dark shadow on a cold winter’s night. During the treatment in Melbourne I was told 3 times to be prepared for the worst. Being told is one thing, but actually feeling it is by far another thing altogether. I haven’t counted how many times since we returned I have “felt” it; it’s not something I wish to count and sometimes the feeling wouldn’t leave my heart. Pippa always pulled through and I could let myself take a breath and would try and push the feeling away for a little longer.
That’s why on the day Pippa went to Tony’s Sungold Field Days I was thinking the good day would stay with us for only a few days. It was 2 days before her birthday and I assumed she was rallying herself and finding all of her inner strength in preparation for turning 11. Being in the wheelchair is tiring enough for any outing, but bouncing around over acres and acres of tracks through paddocks to see everything she wanted to see meant Pippa came home and fell asleep utterly exhausted but not before telling me how much she loved me. It was the first time I had heard her the sound of her voice in over 2 weeks!
After the field days and Pippa’s birthday I was waiting for the decline to come again. It didn’t. Instead since the 11th February we’ve now been seeing improvement. Small Improvements.
To break it down…………
She couldn’t drink; now she can drink milk, freshly squeezed orange juice and she’s even managing some water.
She couldn’t chew or swallow anything other than jelly and ice cream; now she can manage small amounts of foods that I either make or adapt for her and there is definitely a chewing motion and tongue movement. I still have to carefully monitor choking with both eating and drinking though.
Although I didn’t realise at the time, now that it has returned, I know that she had lost, to some degree, her sense of smell and taste.
Likewise, her sense of touch is now different; she used to know that her feet were cold but for many weeks she lost that sensation; now she can recognise that again.
The TV is no longer up to detrimental volumes for the rest of the family so her hearing must be somewhat better. We still need to speak directly to her and eliminate background noise or other people’s voices so she can hear properly.
She couldn’t move her left hand, arm or leg or shrug her left shoulder; now she has a small amount of movement in each of these areas.
Pippa had no trunk or neck strength, now she can manage some level of support to move and hold her body and head. Her neck gets tired and aches if she’s using it for too long but she recognises when she needs a rest (unless of course she’s determined to push through and finish something!)
She couldn’t bear her own weight when standing; now, whilst she still needs to be held and supported, she can weight bear ever so slightly and move her legs (sometimes her left one freezes up)
She couldn’t speak, move her tongue or make a sound; now she can formulate words, make sounds, speak sentences and of course poke her tongue out. It’s quiet, sometimes more breath than voice, and we still need to concentrate very hard to understand what she is saying but she can, at times, have some clear short phrases – my favourite one of course which I can always hear clearly is I love you mummy.
She was no longer able to hold things in her right hand and some days even touching the ipad to communicate it was difficult to hit the correct letter; now she is holding a modified spoon at dinner time if she’s not too tired and recently at school she held a texta to draw a dolphin.
Pippa is comfortable and is no longer on any pain medication.
Finally, Pippa is singing! It’s not singing that we can necessarily hear, but her music plays, she can mouth the words (sometimes with a little sound) and she is enjoying it.
Whilst this is all fabulous, it feels much like waiting for a bubble to burst. Instead though, we keep living each day in the moment, one day at a time. Pippa is going to school for short periods most days and some days school even comes to her. The grade 5/6 students now have a laptop program which has given Pippa incredible enthusiasm for her work and the night she received it she spent over 3 hours doing homework to complete her first project – one finger typing, with a slow moving arm but it was a maths project so she was determined. We try and focus a lot on maths as it’s Pippa’s favourite subject, but it’s also great therapy for her brain. Usually it’s just Pippa and I walking to school but occasionally we have a visiting entourage that comes to the classroom!
We have had a trip to the beach to try out a chair that can go in the water. At the same time, it was a good excuse to do a “patrol” in the ATV! Pippa now watches the weather reports closely to see when the next opportunity to go to the beach will be. Of course next time she wants to go out deeper than just half way up the wheels and she’s started asking whether maybe one day she can manage to lay on a board!
Whilst Pippa still gets sad and very frustrated with everything that is physically different from the girl she used to be she is exactly the same Pippa on the inside with her beautiful, engaging and exuberant personality. It’s my job to hold her tightly when she’s sad and to be supportive and encouraging of all those great traits she hasn’t lost. Pippa has learnt a few magic tricks and enjoys baffling everyone with her talent. All the tricks require the use of her brain and her memory both of which function completely normally. Her physical ability to play games has improved again and she likes to make people laugh by introducing them to the fun game of “Fibber” with her noses already on! The hysterical fits of laughter take a while to subside before the game can start.
Why is this improvement showing so long after we finished our additional treatment that was initially thought not to be working? And why has it come after such a long and drastic period of decline? I don’t know. Nor can anyone give me much insight. Regardless, it is what it is. I can’t change, worry or over think it. What I can do though is be respectful of Pippa and this period of time. It would be easy to sit Pippa in her recliner chair and watch TV all day but that’s not her. Watching TV is now “resting” after periods of hard work on her part – school, physio exercise, homework, sitting on the daybed outside, outings in the car (she still needs to be lifted in and out) or in the chair. I don’t know how long this improvement period is going to be for or whether it will continue, plateau or decline. I have started to do physio with her. I have had her capabilities assessed and our creative physio friend has devised some great fun activities that will hopefully compliment her current situation. I’m not giving Pippa false hopes but I feel it is my duty to capitalise on any movement her muscles can achieve. I also make sure that across the day her food intake includes something from all five food groups. In fact, if I don’t Pippa reminds me! Likewise, she ensures that she does her exercises and stretches. Even if I think she’s tiring she won’t stop until she’s not only done them all but done them all well.
These are all small but significant improvements. We are enjoying them and hanging on to the roller coaster for longer.
Pippa Rea 