It’s Wednesday morning and the sun is shinning. Dana again wakes at her usual time of 8am, she loves watching Friends in the evenings and ends up going to sleep at 10pm. This will change once we get back home. Back to a more reasonable bedtime. For now though it’s ok. I do the usual stretches before going down to breakfast and by the time we leave the apartment, we only have a few minutes left until breakfast is closed, so Dana is wheeled in her chair. Although she actually is just as quick in her walker, old habits die hard I guess.
After breakfast we speak to home as Ollie is back from his first day of Year 1 He looks so cute in his new uniform and his first tooth has fallen out. The time difference is still hard to get used to as when we are in the middle of our afternoon, home is in bed, so are only able to communicate during set times during the day.
Dana has her first schoolroom lesson this afternoon at the hospital so we make our way to Children’s for lunch. We will eat in the cafeteria, as it’s easier and convenient. I have Dana’s walker and sticks to carry and it’s quite an ordeal each day brining them to the hospital and on the shuttle bus. While we are eating a family from the hotel arrive and join Dana and I for lunch. They have been to the science center, which is such an inspiring and educational place for children and adults, I have never seen anything like it. We discuss the body works which is located in the science center and it is just that, and exhibit of how the body works. There are live size figures of men and women either figure skating or playing ball which shows the muscles used. We were able to explain to Dana about her operations, how Dr Park performed the spinal surgery and how Dr Dobbs performed the Hamstring Lengthening/ Heel Cord Release. She wasn’t impressed and I think would rather not have known.
While Dana is in her lesson, I take the opportunity to sit in the roof garden and read my book. I sit on a wooden bench and just look around to see the children in their hospital gowns with their mums enjoying the sunshine and the colorfulness of the flowers. I feel sad for them and think back to when Dana was an in-patient and the experience she has been through. It feels safe here and does not feel like a hospital. People are walking into the garden and each person has a sticker that states parent, grandparent, sibling or guest and the floor number of the patient. As I look, I recognize where their children are, some are in Intensive Care, others are on the wards.
With the lesson finished we head towards the therapy department for our 3pm appointment with Blaire. Dana walks into therapy as usual and we meet other families who we are friendly with and chat. Each parent has a look of desperation, desperate for his or her child to walk. As you focus on their faces, they are looking at their children eager for them to do well in physio, eager for an improvement on the previous day. I am no different and as we walk in with Blaire I am hoping this session will be even better then the last.
Blaire starts Dana on the treadmill; she completes 15 minutes today at a speed of 0.7. Her stamina is definitely improving considering she had also walked to therapy before physio. What is becoming clear and also raising some more questions is my concern over her knees still coming together and her posture. Blaire talks through the weakness in her hips cause the knees to go in. Frustration is the only word for it as I know there is no quick fix and the way Dana is walking is making it more difficult for her. More stretches and more strengthening. Blaire moves to asking about the sticks and wants to see her using these more. Again the posture and knees are awful and concerns are Dana using the sticks will affect her posture. What do I focus on? I look at Blaire and can see I’m upset and confused. She talks through the benefits of the sticks over the walker and explains Dana will require a physio session at home at least once a week to just focus on her back in addition to the normal back exercises incorporated with her stretches.
I leave the session upset and confused. I see other children progressing and feel so upset that the level of progress made is much more noticeable than Dana’s. I feel angry again Dana is the age she is. Dana has the willingness to want to achieve, which is something I am grateful for. She is strong and determined yet I feel for her that her body is not reacting at the same level. I’m not giving up, I know this is a long road. I am not new to working with Dana and doing the exercises needed, it’s been 13 years, yet now it feels so very different and I don’t know why. I will get more clarity when we are back at physio and hopefully will give me a bit more reassurance. I log on to facebook and can’t face reading the stories of children’s progress. I am happy for them of course but cry inside for Dana. I don’t want to post anything, as I know what the replies will be. Everyone is supportive but I just want clarity and answers to so many questions, which I know will be very hard to do.
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