Our 22 year
old daughter, Laura, is one year post bone marrow transplant as of September
16th. We have learned from others on this discussion list to celebrate life and
take lots of pictures and that has been great advice. We just celebrated last
weekend with lots of friends and family. It has taken some time for Laura and
for my husband and I to feel ready to make our whole community aware of her
disease. This month my husband contacted our local paper and told them that our
daughter had a story she wanted to share. We all had an opportunity to share
about Laura's diagnosis and the journey we have all been on. We hope that this
will help to create greater awareness of rare diseases like MLD.
She has had a lot of changes in her abilities over the year. Her most recent thing is painful muscle spasms. Her neurologist from Kennedy Krieger started her on Baclofen and that is really helping her pain. She is taking 10mg twice a day. She is also having difficulty moving her feet to take even a few steps. I help her to do some leg exercises in bed and while sitting up in the chair but that is about all she can do. We purchased a transfer disk and that has really helped with transfers. She spends most of the day sitting up in a chair.
She recently started Aqua therapy at Kennedy Krieger and in the water she can walk so easily while holding on to the therapist's hands! She goes once a week for an hour session. Has anyone else found Aqua therapy helpful? She is also scheduled to have electrical stimulation to her leg muscles tomorrow for the first time to see if it will help her to be able to exercise on the gym equipment. Has anyone had any experience with electrical stimulation?
This is such a multi-system disease. There is so much to keep on top of! I know you all know what I mean. I found out Laura has 4 teeth that are showing signs of decay. I'm told that sometimes chemo can affect their teeth as well as certain medications that dry the mouth. The dentist didn't advise drilling her teeth and doing fillings yet. He thinks that with brushing, flossing, and using a prescription strength tooth paste her enamel can be made stronger.
She has had a lot of changes in her abilities over the year. Her most recent thing is painful muscle spasms. Her neurologist from Kennedy Krieger started her on Baclofen and that is really helping her pain. She is taking 10mg twice a day. She is also having difficulty moving her feet to take even a few steps. I help her to do some leg exercises in bed and while sitting up in the chair but that is about all she can do. We purchased a transfer disk and that has really helped with transfers. She spends most of the day sitting up in a chair.
She recently started Aqua therapy at Kennedy Krieger and in the water she can walk so easily while holding on to the therapist's hands! She goes once a week for an hour session. Has anyone else found Aqua therapy helpful? She is also scheduled to have electrical stimulation to her leg muscles tomorrow for the first time to see if it will help her to be able to exercise on the gym equipment. Has anyone had any experience with electrical stimulation?
This is such a multi-system disease. There is so much to keep on top of! I know you all know what I mean. I found out Laura has 4 teeth that are showing signs of decay. I'm told that sometimes chemo can affect their teeth as well as certain medications that dry the mouth. The dentist didn't advise drilling her teeth and doing fillings yet. He thinks that with brushing, flossing, and using a prescription strength tooth paste her enamel can be made stronger.
Laura isn't changing position much in bed so I requested a alternating pressure mattress that goes on top of her bed. Then I noticed she was getting her foot stuck between the bed rails so I requested bumper pads for the rails. She is having difficulty swallowing thin liquids so now I am adding simply thick to her drinks so it is a nectar thickness and she doesn't cough.
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