New Diagnosis for Zemiel

Since the year end, I've had 3 weeks holiday and 4 weeks back on the job. Along with some staff changes it looks like it could be a good year.

In breaking news, we've received notice that Zemiel has a new diagnosis, called "22q.11.2 deletion". It was found that he had a deletion on one of his chromosomes. The deletion involved is connected with learning difficulties, speech delays, facial deformation, cleft palate, deafness, heart disease, hypocalcemia, kidney problems, and a good deal of other not-so-pleasant things to think about. My research suggests it affects between 1 in 2000 - 4000 children. It is almost as common as Down Syndrome and the vast majority of cases are new to the family (not inherited).

Ultimately, while this is a bit of a new thing to digest, we are glad to get some definitive answers finally. Also, after looking at some of the symptoms possible for this type of deletion, we are feeling incredibly blessed to have a child as functional and healthy-looking as Zemiel.

I have put a link to the 22Q Foundation website off to the side, if you would like to know more.

Like Pulling Teeth

This week has been especially busy. Last Saturday night, Sharlene, the boys and I went to the ELC to work on the packs that each of the children will receive as they leave for the final time or when they leave our break up party. It was a late night for me, I burned almost 50 CDs, caught up on comments in communication diaries, and sorted photos into individual files. Sharlene was  huge help as she put certificates, diaries and CD's into the appropriate pack. The rush that night was due to our break-up party being on the next day. 

I had hired the Mackay Society of Model Engineers to come and run their model steam trains for our ELC children and families on Sunday. It wasn't all easy getting everything there, but the day really did go well and it seemed that everyone left happy. That afternoon, I borrowed a trailer, got a load of dirt from behind the ELC, took it home and built a garden. (The soil/sand at our house is pretty gutless). 

All this week has been quite emotional, saying goodbye to a number of families for the final time and receiving gifts. We have such a wonderful group of parents this year. 

On Thursday, Sharlene finally got her wisdom teeth pulled. Now she has a very swollen and bruised jawline. She ended up getting them out under general anaesthetic. She has kept ice on her jaw ever since. 

Today, we had our final wet day on the slip 'n slide for the year. Numbers were down today but we all had fun anyway. I took Zemiel with me to work and Sharlene's parents took Azariah and Zekiah. Azariah joined us for our wet play, while Zemiel stayed all day and was reasonably behaved. The highlight of today for him was getting his face painted for the first time. It only happened because I was painting some other children's faces - mainly tigers and butterflies, while Zemiel would constantly interrupt and point out the picture that he wished to see on the next candidate. He would grab a brush and start bringing it ominously close to the poor child's face. Finally, I allowed Zemiel to paint my face, which he did with conviction. I had orange and black everywhere - in my eye and up my nose too! When this was finished, I pinned him down and asked him what picture I could do for him, and he chose a lion. I painted the mask and got him to look in a mirror and he was hooked! He started rarring and off he went to rar at all the other children who yet remained. He commented several times this afternoon that he was 'a big lion.' I'm pretty sure now that he will get his face painted again. 

Ten Years

This weekend marked ten years of married life for Shar and I. It possibly doesn't seem to be so long when one takes it all in at once, but then again, when we thought about it today, we decided that we actually had done quite a lot in that time. First of all we looked at the individual years.

Year 1: Rockhampton -  in a condemnable house. (We were the last tenants before it was demolished).
Year 2: Bowen and Cooranbong -  living apart. I studied, and Sharlene worked hard to help me do that.
Year 3: Cooranbong - I was studying and Sharlene working while living in another terribly old house. It was once the original farmhouse, then the morgue, then our residence. We also enjoyed our epic drive through the centre of Australia with Luke, just as he met Amy.
Year 4: Cooranbong - Both of us working. Bought our first house in Morriset. Diesel dog joined the family.
Year 5: Morrisett - Both working until our first son Zemiel was born.
Year 6: Morrisett - I worked. We both learned Auslan.
Year 7: Morrisett - I worked and welcomed our second son, Azariah.
Year 8: Bowen - Sharlene worked and I take on being a house dad.
Year 9: Bowen - Sharlene worked till mid year and then I took work in Mackay. Lived apart for a few weeks before Sharlene and boys joined me. Moved into house owned by Sharlene's dad. Welcomed third son, Zekiah.
Year 10: Mackay - bought unit in Mackay. Sharlene return to work part time, besides keeping house, and taking Zemiel to Brisbane every few weeks.

Well that about sums up the years in a nutshell, so to speak. We are still young and definitely have plans for big adventures yet to come.

Bowty Downter

Azariah has had a special friend for quite some time now called Bowty (or Boaty) Downter. This friend comes along with him everywhere and lends his name to many different objects and situations. When in doubt of what to call or name something, Bowty Downter is Azariah's naming fallback.

Today, Azariah and Sharlene sat down and wrote a song about Bowty Downter. The lyrics are as follows.

Bowty Downter has a friend,
His name is Bowty too.
At the creek they play all day,
And I play with them too.

Of course, Bowty Downter also gets blamed for misdemeanours and infractions of our home boundaries. So one may ask, just how long will the friendship will last?

Hiccups

I am beginning to doubt whether there will ever be anything in Zemiel's life that will 'proceed as planned' - without interruptions, delays, surprises, distress or alterations. 

Zem took a ride to Brisbane this week to see some specialists but has ended up getting sick. He had fevers yesterday and today Sharlene took him to emergency. Now I find out that, instead of returning home tonight, Zemiel has been admitted on an I V drip for the night because he wasn't recovering as fast as he ought to have been and wasn't fit to fly. I don't know what the new schedule is. 

Riah has spent some very happy days with Aunty Ellie and is now back with dad for the weekend. 

Our new chickens, Eor (pronouced ee-oh-are) and Book-Book are now both laying eggs. Eor's first egg was today while Book-Book's first egg was last sabbath.

Nava (one of our original chooks) has ceased to pick on the younger ones unless they are directly in her way. I got some pavers for their pen yesterday and Riah helped me put them in this morning.

Recent Holiday and Operations

At the end of September, Sharlene took the boys for a three week trip down to New South Wales to see friends and family. It was a great time for her to spend with the children and especially to have quality / quantity time with them. On the way home they stopped in Brisbane.

On October 12, Zemiel got his adenoids taken out and some gromits put in his ears. He went in at 7am and was able to leave the hospital in the mid afternoon. Everything went well for the operation. Although we now know that he had a lot of residual fluid in his ears. His left was infected and his right had 'glue ear'. I flew down to meet them, spent the night with Trev and Roni and then drove them home back to Mackay.

Zekiah had his first birthday while they were away but while he had started to take a few independent steps before he left, nothing really changed until he came back. But it was only when Sharlene took him to Cape Hillsborough for her women's retreat that he really jumped ahead. He went from only a couple of steps alone to almost completely independent.

Sharlene will be off to Brisbane again this week. Zemiel has an appointment with the ENT, Developmental specialist, Opthimologist, and Audiologist. He will be remapped and hopefully we will begin to see/hear the difference the gromits make.

Window Shopping

Sharlene was telling me a story yesterday about how she went shopping with the boys. They bought a father's day surprise for me and after that, instead of the usual whine for everything that glittered and sparkled, Azariah began to chant, "Don't need that, don't need that!" at everything that he saw. It made Sharlene smile.

Personality Plus!

Our boys have such personalities!

Zemiel loves our chickens. Whenever we come home from a car trip he will check the nest every time. It could be the fourth time that day (and we only have 2 chickens). When he gets an egg he holds it up triumphantly above his head and brings it in safely to the kitchen. Yesterday, after already collecting two eggs, he decided that it wasn't enough and proceeded to block up the door to the next box, pick up each chicken and place them down inside the next box and push them down into the straw. I don't think the chickens were convinced though.

Azariah has taken a new interest in his old doll 'Rusty'. It is the doll that he got when he had his gall bladder removed in hospital. Today he made sure that the music in the car was turn down so that Rusty could 'sleep'.

Today, Zekiah found his way to the dog food outside. Mum finally found him and scraped the food out of his mouth. However, the toddler had the last word, deliberately sucking each of his fingers as if they were sugar coated.

A week in the life of us

Well I thought it time that I braved the internet and wrote about our general week. We have so much that goes on and I would hate to look back on this time and not remember the fun and hard work that makes up our lives.
Sundays are family days playing together and generally going outside to eat from our wonderful vege bed. Even Zekiah gets in on the action and reaches up to pick silver beet leaves to munch on. Zemiel and Azariah search daily for the new peas and beans and eat them as fast as they find them. They really love the fresh food.
Monday are usually home days. Every day I have a goal of what work Zem needs to do. This week it is  sign language cards based on the book "The hungary caterpillar", speaking practice with words starting with the 'f' sound, listening practice (on what is called minimal pairs), recognition of emotions worksheets, plural practice, barrier games to improve listening, I Spy, and I try to squeeze in some math concept. Usually I tackle four activities a day but more if Zem is having fun with them.
Tuesday is when I pretend to be Daniel's secretary and do some shopping for him. It is also a big house clean day. Even with a small place, it needs constant cleaning. Zem enjoys using the vacuum cleaner and also enjoys putting washing powder in our front loader washing machine. Azariah loves to spot clean with a spray bottle and cloth. He attacks the spots on the floor with great gusto and persistence. Zekiah loves to follow around the vacuum cleaner and climbs to where his hair is blown around by its air vent.
Wednesday is washing day. It is also the day that I try to water the plants. We currently have a nectarine tree, peach tree, pomegranate, miracle fruit, cape gooseberries, blueberry, lemon, lime, numerous baby tomato plants, lemongrass, longan, geranium, aloe vera, raspberry, quondong, sweet potato, potato, basil, oregano, indian almond, malabar spinach and possibly some more that I can't remember the names of. All these plants are in pots and so require attention each week. I made some watering cans from old spaghetti and baked bean tins so that Zem and Riah help.
Thursday is the busy day. Zem has preschool at EDCP (Early Development Childhood Program), I drop of Azariah either to Aunty Ellie's or to Poppy Brian's house and then go to school to teach Home Ec. Once finished I pick up Azariah, then Zemiel and then come home to make dinner.
Fridays consist of going to the speech therapist, then to the EDCP, then home to get ready for sabbath. It is also my phone call day to specialists if necessary. I pick up Zem and come back home to clean up the house and then help the kids remember their memory verse for the week.
Oh - I forgot. I also tutor 2-3 hours per week in the afternoons. Busy, busy.
Praise God for Sabbath!
Anyway - that is a week in the life of us. I hope you had fun reading about it.

Daniel and the Lions

Azariah and Zemiel have a new favourite story - Daniel and the Lions. When the boys have learnt it well enough, I'll put it on the blog for you to see.