I have come to look forward to weekends or rather the end of weekends. An end always creates a beginning. Weekends allow me the time to look through the ending one and look towards the beginning one.
I look at this past week with a lot of gratitude and the coming one with hope.
Last week, we had some episodes of “thanksgiving”. To one who is not a member, they may seem ordinary, but to a member of the non registered but strong union of parents of children living with Cerebral Palsy, aka “special parents”, they were worth celebrating.
Enoch is a lovely three year old, he turned three a few months ago. He started coming to the Center about a year and half now. He has seizures. When he started, we used to record about 18-20 episodes of seizures a day, not counting the ones he would have had outside of the center, you cannot imagine how heartbreaking it could be for the parents. The anti seizure drugs seemed not to be doing much. I hate seizures, often difficult to control! His are these salamander attacks that I suspect to be infantile spasm. When I decided to add diet to the weapons of controlling Ziim’s seizures, I told his mum and also other moms of children in the center whose children have seizures. It was heart warming watching Enoch’s seizure episodes drop to 3 on bad days 5. We celebrated, for months it remained that way.
Three weeks ago, we watched with dropping hearts as his seizure episodes increased, from 4 daily to 6, 7, 9, 10, Haaa!!!! one day we counted 14!!!!!!!Mummy what happened???? We also observed that he cries more often. Mummy E confirmed that. So to the hospital, run tests……nothing was seen. Ok, a bit low on blood. Ok, blood boasting food to the rescue, remember, you can squeeze ugu and force it down his throat. The pead at the neuro clinic prescribed another anti seizure drug to be added to the ones he already was on. Mummy E discussed with anti Nonye; let’s go easy on the medication, those drugs dull cognition and remember no one runs liver function test. We just keep loading the kids with medication. Let’s wait a while, since it was not the consultant that she saw. It has been raining a lot so the weather has been quite cold, keep him warmer. And PRAY. This was Monday of last week. Tuesday, at the close of the day we recorded far less, Wednesday, we had, you won’t believe it 2!! Thursday 1!!!!! What did you do mummy E? I asked when she came to pick master E, she knelt down, hands up, thanking God, I had to hold back tears as I said Amen. Like I said, for us members, this is huge!
Joannah is our latest intake, she started on the 2nd of July. She is 2 years old. When her athetoids movements are at bay, mostly when she is asleep, or when you are holding her, she looks like a full stop, if you get what I mean. Her mum feeds her only ogi (pap). How can you feed her ogi three times a day? That’s all she agrees to take, sometimes she takes rice cereal. Hm.. I remembered Ziim, she was on ogi and oat for over three years. We can try her on regular food, I said to the mum. She will not take it. Really? unless she is not hungry I added. Monday, I tried sweet potatoes, she wouldn’t take it, she cried so much, we gave her ogi. Tuesday, I let her go hungry, her mum had packed cooked plantain (mashed) and ogi for her. We tried the plantain at lunch time, she wouldn’t take it. we refused to give her ogi, one hour later, she must be quite hungry, we tried again, she ate, crying and protesting, she ate a plate full!!. Wednesday we used the same principle. Friday, mum came to pick her. Ha aunti Nonye, I gave her amala yesterday and she ate it!! This has been a challenge, thank you very much. I really thank God. We all thanked God.
As I sit here, I chuckle at the little things we celebrate, because that which hold our kids is so overwhelming that we need to celebrate the tiny things if not we may just loose it. Celebrating these little things gives us hope that the big ones will come. Here is hoping that we have more thankgiving moments this week. And what are you h