Niamh's Story

We are so used to injecting Niamh with meth on a Friday pm that I forgot to include it in blog last week....

August 25th

Niamh up and doing exercises at 8am takes her losamel before breakfast and naproxen and folic acid after. Niamh is in a very positive mood today and goes on her bike for a half hr after breakfast. Her knees look swollen and hot so after her bike I alternate with hot and cold towels..I ring her occupational terapist to come meet us in school next week as Niamh needs to ger measured for her chair. Her posture is so important.School are great to her she is allowed to get up and walk around class if she gets very stiff. After lunch it is off for a swim.. I really do beleive swimming is the most important exercise for a child with arthritis and I see a hugh difference in Niamh's mobility after a swim.. Niamh does her exercises after tea.

August 26th

Niamh has early morn appt with school dentist for a check up.. she gets up early to run a bath to ease her joints.. This helps her to do her exercises. Losamel before bfast and naproxen after. We are so lucky to have a wheelchair sticker so we can park near dentist entry. Niamh is very bad on steps and takes a gd 10 mins to climb up.I ring my doctor as niamh having such a bad re action to naproxen.. Should I take her off it??? He says no wait for dr Kileen to come back. Her forehead covered in water blisters.. Niamh spends the afternoon on her bike and when it comes to evening exercises caoimhe her 5yr old sister is always on hand to offer support..

August 27th

Niamh is very sore this morning and spends the day in alot of pain.. I am so upset as she was doing so well. She is unable to ride bike so I take her for a swim.. I gave up work to look after Niamh so I can only imagine how difficult it is to work and look after a child who is sick...especially a child who can be good for weeks on end and then in agony.. Every day is so deifferent. The only downside to not working is the fact thatt I am constantly aroud Niamh so I sometimes can get dragged down by it all..

August 28th 29th and 30th

Fridays are injection day and niamh starts to get tense after lunch. granny comes in at 5pm to hold her hand. I give it in her leg and we certainly have had some drama.. she pulled her leg away one day and I stabbed myself she has got so upset that I had to put it in while she not looking... we getting better at it...

We had to travel on saturday to meet Declan's aunt for lunch Niamh very sore and stiff after 1.5 hrs in car we spend a little time massaging knees and putting cold ice on it before we go in..Niamh is so so so brave...

Sunday we have a camoige match Niamh can barely walk let alone run but her teammates are there for her and give her support.She can't wait to get home to a hot bath...

Monday...

very exciting day Caoimhe starts school.. This takes Niamh's mind off her Arthritis while Caoimhe runs in school gate Niamh has to be supported by her dad...


Talk soon