Friday, 16 May 2008

Rainbows last night for Mog - and a cookery competition. Divide the girls into two groups, assign a Young Leader to each group, and watch as the teams cook biscuits. Mog's team made chocolate chip cookies, the other team made chocolate shortbread. Mix, bake, then wave frantically in the air as the next group to have booked the church hall get fretful with the delay. Rainbows and leaders alike get to taste the biscuits and vote for their favourite. I liked the chocolate shortbread (I know, traitor to my daughter); Mog choked on that and did not choke on the chocolate chip from one of the cookies, so we assumed the chocolate chips won her vote.

One very tired happy little girl all snuggled down into bed and ready for sleep - one equally tired blogger about to follow her when she switched from happy and relaxed to cough splutter gasp wheeze sneeze CRY cough cough gasp bubble bubble. Reposition her and a semi smile, but more gasp bubble cough choke purple child. A spot of suction, and all is sweetness and light again. A peaceful night after that.

One busy morning, getting Mog up and out (a Mog with no signs of any further coughing or choking, very pleased with herself and ate her breakfast beautifully). Little Fish also awake in good time, feeding and wearing her breakfast in equal measures, and then into clothes and ready for the day.

Mog into her bus and the usual frets from Little Fish about the unfairness of being the youngest and not being able to go on the school bus every day. Instead I load her into our bus and head off for the opposite end of the county, to a coffee morning held for parents of medically complex children. I've attended a few events run by this particular charity, but this is the first coffee morning I've managed to make it to. Definitely worth it; this one was hosted by the charity's patron, who happens to live in one of the grand old country houses peppering our county.

As we drove past the gate keeper's cottage and through the deer park I couldn't help noticing a sign to the side of the drive. "Give way to aircraft". Scanning the skies I saw no helicopters or biplanes, and instead we arrived uneventfully at the back door, unloaded our distinctly scruffy van, and hunted for an entrance. Two peacocks posing as living statues scared Little Fish first, followed by a beautiful brown dog who attempted to investigate her gastrostomy. This last ensured that LF would stay glued to my side for the first half hour of the morning, but she did relent eventually and consent to receiving the cuddles and general adoration the world likes to bestow upon her. Oh, and a biscuit too of course.

Two nurses and a play therapist, and LF initially the only child for them to play with. One hand firmly wrapped around my finger to prevent my escape (she is a suspicious child; I wish she would learn to believe me when I tell her I'm not going anywhere or that I will be right back), she consented to make a Father's Day card with a fish on the front. LF has no father, so we now have the choice of sending it to Grandad (who will be delighted with it) or to her Great Grannie, who is owed a thank you card (and who would be equally delighted). I'll decide that in the morning, or possibly when I've worked out how many other Father's Day cards she'll be making in how many other different locations over the next few weeks. It's a confusing world for Little Fish - she has one Mummy and that's it, her playmates mostly have a Mummy and a Daddy, and her sister has TWO Mummies and a Daddy, and two extra sisters. For now this doesn't bother her, she takes a close look around and then tells the world that I am her Mummy and she is my baby. We'll deal with the rest of it later. One day.

Just as Little Fish is getting into her stride and working out how to include the entire circle of adults in her games I realise that it is time for us to go. A quick(ish) sprint across the county, we call in at home just long enough to collect water and a banana, then over to the girls' school for a meeting.

The meeting is due to take place between Mog's speech therapist, the specialist speech therapist for augmentative commications aids, Mog's teacher, and myself. I arrive at the classroom at 1PM, where the teacher informs me that she has only just been told about the meeting, and cannot make it. Frustrating, but not her fault. I am also told the meeting is not until 1.30. I change LF in the class bathroom, and then we head back up to reception at a leisurely pace, so that I can feed Little Fish before the meeting. Here I am greeted by a slightly frantic speech therapist, who has been waiting for us; the meeting started at 1.

We discuss problems with Mog's communication aid (the biggest problem being, no one seems to be able to use it with her, it isn't a priority, she is bored with it, and she is completely dependent on an adult helper having both hands free in order to support her accessing it. Not ideal) and come up with some hopefully workable solutions (switches on a headband and a wrist strap so that she can use them independently). Hopefully that'll be in place soon, and then she should be able to start making herself heard in more detail again.

The meeting is nearly over when a runner from the classroom joins us; can I come please as Mog is fitting badly. I run; she is. Together we watch her for a few minutes, and then I gather up the school's selection of emergency medication for her and bring her back to our meeting, thinking that possibly the class drumming session is not the best activity for her until she's finished her seizure run. It is at this point my telephone rings, reminding me that Mog's other family are visiting this afternoon. Excellent timing. We debate meeting in town but decide that they will come to us when they have finished shopping. On reflection this was a very sensible decision; they are shopping for shoes. I do not want to think about what might happen if I were to take Mog into a shoe shop and come out without a pair for her!

Having totally impressed the speech therapists with my professionalism -lateness, bringing another child and feeding them during the meeting, taking personal calls, choosing to talk whilst my child is fitting merrily* - I allow them to finish up the meeting and decide to bring Mog home with us now rather than risk getting home only to have to return to school or chase an ambulance to hospital.

We get home; Mog is instantly revived and giggling. Little Fish demands more dinner. We make some rather average blueberry muffins using our nice new Floridian (well, Walmartian but still acquired on holiday) cup cake holders. Very cool silicone with feet. I like. Little Fish likes too - I keep finding them all over the house where she has removed them from the door and added them to her collection of babies. Nice cases, less than wonderful muffins, but still perfectly edible. No recipe - they were of the "open box, pour into bowl, add egg and oil, stir, shovel into cases, bake" variety.

A bit of a breather all round and then Mog's other family arrived. Mog had chosen some bargain trousers for her sisters whilst we were away, so she had those on her lap together with a photo album. Her sisters in return had brought her a pot of super thick luxurious yoghurt - very very delicious and just the right consistency for both girls. An ideal present; nearly as good as a new pair of shoes, and she definitely doesn't need any more of them!

Three girls (Mog's sisters plus Little Fish) all sitting on the stool playing the piano together very gently and more or less tunefully; Mog listening intently and smiling as she recognised some of the tunes. Fun in the ball pool, a spring clean for the doll's house, and suddenly it's bedtime and time for them to go.

Two girls very tired and posted into bed. One mother enjoying the heady scent from theseand ready for bed herself. Tomorrow we get to spend the day with all the girls who are coming to Guide Camp in the summer, and hopefully persuade the parents that their precious darlings really do need to learn how to wash up without a dishwasher and to sleep without a nightlight before they get into the coach in a few week's time.

Night all,

*I'm not really heartless; Mog has hundreds of seizures every single day; if we stopped the world for every single one of them we'd never get anything done. Unless her breathing is compromised or she is unhappy, we let them run for 30 minutes before treating them. They usually last 27 minutes - this one was no exception.


Tina said...

Hope mog slept well for you after all that, do you think the biscuit she choked on was just waiting for bed time to make itself known? litle Fish is a darling of course everyone falls into her trap of needing a playmate....just so long as the Mummy she needs is within grasp! the muffin stands!

Anonymous said...

really impressed you made it back to school with so much time to spare! All professionals think you have no other life outside of their appointments!


MOM2_4 said...

What a day! The tea sounds lovely. The meeting very eventful. Play time with sisters - FUN!

The cupcake holders are so cute! I want some. Will have to add those to my wish list...hummm M-I-L is always asking what I want for Christmas and we won't have a trip back before... uhhhhh, ohhhhh ;o)
BTW, I have a yummy pumpkin bread recipe that I sometimes make into muffins. If you want the recipe let me know.

Hugs & Prayers!!


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