We had our follow up on this in LUTH yesterday. Actually we were schedulled for the 6th, that was last week, but it was a holiday. Thus I expected the crowd of patients to be like this day. I needed to get back to the Center on time, that means we need to be early. I had planned to leave early as usual but by the time I finished with our morning routine, I found that I could not leave before seven and that means that by the time I get to the clinic, I will be sure what time it was, but may not know when I shall leave. I decided to test my friendship with one of the staff in the medical records. She is in the team that retrieves the files for the day’s appointment. Let’s just say her name is Mrs. Bizi.
This day, about 2 years ago (told you I have been long in this neuro clinic), I watched Mrs. Bizi talk very rudely to this woman at the clinic. She was so thoroughly rude and abusive that the woman was speechless, I guessed that if she opened her mouth the tears I saw in her misty eyes would have dropped and she probably did not want to give her the privilege of seeing her tears, so she held her tongue. I made it my business, I faced Mrs. Bizi and told her off. You people can not treat us this way, I said, why are you talking to that woman like that? Bla bla bla tou tou!!! Of course the woman replied and voices raised, other parents added their voices, other staff same. So it became “We” and “Them”, Of course you should know the side each would bend to, there was some sort of up roar. Mrs Bizi blamed me for the comotion, after all she was not talking to me. Sure you were not, but you were to a sister or do you not know that all parents with children with disabilities are bound by a common chord? Anyway, before I left that day, Mrs. Bizi and I became friends, she gave me her number and said that I could call her anytime I needed her assistance. Usually, if you do not have appointment, your name will not be on the list, that means that your file would have not been retrieved until you come and submit your card.
I had never used this “friendship” or rather tested it, so as I was running late yesterday, I went to my old phone, retried her number and called her, it was about 6.45a.m. Hi, is this Mrs Bizi? ( I had to be sure, people change numbers and two years is a long time) Yees ( hm..I am lucky) Ha, this is mummy Chiizi (that’s what she calls me), how are you, how was your weekend? Fine. Please I need your assistance (more likeI am testing the offer you made two years ago or I am putting our friendship to test). Ok, how may I help? Please, we are coming to the clinic, last week was our appointment date, but for the public holiday, I expect a crowd and I am running late, could you help retrieve my file before I get there? Ok, text your card number to me. Hm.. we are on,I sent the number. At about 7.10 we were set to go, I looked through the window and saw the cloud. It appears as if it will rain today, I said to myself, so change Ziim’s outfit, wear her something warm. As I was doing that, the rain came pouring with the wind. The wind was so heavy that the door facing the street was forced open and water was streaming from there. I had to stay back to bale off the water. I waited for the rain to stop, getting to LUTH, it was 9.15!!! Hm…when shall we go home today.
I picked Ziim, got someone to help with her chair and walked as fast as Icould to the second floor, need I say that the lift was not working. As I got to the door, someone called me, aunty Nonye. It was a “sister”., she was leaving. Ha ,how are you? are you done? Yes, she answered. Ha, have the doctors come? That’s quick. No oh, they are not here yet, but there are a lot of people so those without appointment today are being reschedulled, I was given another date. Hm. I thought, just like I predicted, it’s just like this other day. I stepped into the room, it was filled, all seats were occupied, a lot of people standing, almost like Fela would say, 77 sitting, 77 standing!! Thank God I have a chair for Ziim, some mothers have to carry their children while standing. then I saw my “friend”. I went to her, and told me my file was there already, hm.. thank goodness for ffriendship. I weighed Ziim, the scale stopped at 18.5kg, OMG, she has picked .5kg in three weeks, have to watch her diet.
She needed to have her breakfast. One sister offered her seat. Thanks for sisterhood. As we were eating, the doctors walked and the consultant was with them. Ha, I started praying that he would choose to see us. I needed to know about unprovoked laughter. Furtunately my little prayers were answered, couldn’t believe my luck, anyway, have always known Ziim is an angel of luck.
He looked Ziim over. How are the siezures? Less frequent I said. But this unprovoked laughter. All he said I knew already, told you this group of sisters pointed me to that direction. So it could be gelastic siezures, see here and here , this Ziim just keeps getting these unique things. Anyway, let’s watch, upped the Epilim dose, from 9mls to 11mls. Checked the spasticity, we could increase the baclofen dose ,he said, but you know, that too triggers off siezures, so I’ll rather we work on the siezures because each siezure pulls her back, tell me about that. Ziim’s case done, he asked about the CpCenter, we talked a bit about that and by 10.50 I was done!! On time to keep an 11 o’clock appointment at the Physio dept. and to be back in the center before lunch time.
So I have checked, the plan is to wait and see how it plays out, and I add pray. Some sisters in the group say their children out grew that, so I am prayerfully keying into that. And I am counting on your prayers, so please, on your knees and hands in supplication. Thanks.