Wednesday, November 1, 2017

Athletics, breech and a nasty bump

Friday 27th: It was nice to have Brendon join us at assembly today. Hezekiah's class had their faces painted like Tigers but he didn't want his face painted (or said he wasn't allowed - either way I understood his choice).
They sang "Eye of a Tiger" and it was a lot of fun watching him do the actions with such enthusiasm.
When I first spotted him I could see that he was very tired. I heard later that he didn't sleep much at the friend's house. He was too excited to get to bed early or to stay in bed very late in the morning. So I was pleased he found some energy for the song. :-)
The class also showed some of their artwork. They did self portraits. So perhaps that's why he had his mouth open for the photo. ;-)
At school today his first wiggly tooth came out. I had seen it was getting nice and loose this week and was pleased that it fell out while he was eating his apple for lunch and he didn't even notice. Hannah has struggled with so much pain with her wiggly teeth lately, so I was pleased it was an easy one for him.
Saturday 28th: This morning Rachel headed off to the Sampson's house to spend the afternoon there before a number of them head off to the Home School Formal this evening. I'll have to get some photos loaded at a later point.

I love this photo of Ruth making lunch with Asher on her back (trying to help).

At 2:30pm Asher had a 1 min TC.
With Aeleen helping a few times in the evening with getting Asher ready for bed, it's helped get the others ready a bit earlier too. So there has been more time available for evening bible stories. Ruth took on the role of reading this evening. :-)
Sunday 29th: Only when we left church did I realize that Hezekiah and I matched today. So it was a good excuse to get a photo when we got home. I haven't got many photos of my "bump" in this pregnancy. I am starting to outgrow most of my tops though. They are almost all looking just as stretched as this one. ;-)
Brendon and the middle three got stuck into this front area today. Ruth did a great job of trimming back the three funny bush things that grow very quickly (and can look really messy). Hezekiah had actually been asking when the rocks would be put back, but he ended up not being able to help too much with that. So he was the branch collector and Hannah and Ruth worked on the rocks. The trees were also getting a bit overgrown, so we decided to rather cut them back and keep them small enough to maintain ourselves.
Monday 30th: The kids had moved the rocks off the next section yesterday, and this afternoon Hannah decided to pull the long grass out of the section to make it look neater. I thought it was a good time to get a big picture of the final result of all their work. Rachel even helped by clearing the last of the branches today that didn't get finished up yesterday (she was only back at 7:30pm last night). She had another safe, long solo trip. So that was good. She is just rather frustrated with her phone as the GPS / Map does not work well at all. So she has to start looking at getting a good quality phone.
Last children photo with just these 5 - taken on Wed 1st.
Ruth's sprint in her blue tutu.
Tuesday 31st: I have loads of athletics photos from Wednesday, so I will just add captions on those and write about all the events of Tuesday (where there are no photos).After Champion Centre we headed to my midwife appointment again. Brendon met us there after his training and I was especially glad that he had this week.
Hannah's sprint. Giving it all she has this year.
My midwife was concerned that baby was breech. So Brendon was able to take Asher home and I headed back into town for a scan. Confirming that baby is indeed breech. Thankfully she is not in an "unstable lie" as that could have meant me heading straight to the hospital. It was all very emotional for me. If I got into labour with baby breech, I have to go straight to Christchurch Women's Hospital.
I just managed to get a photo of Ruth at discus.
It was hard to adjust my thinking, having pictured myself in labour at the Rangiora Health Hub, and now to think about labouring in a place I have never seen before. The emotions were all just very raw. We had been thinking of taking the children to the "Light Festival" in Amberley, and so I asked Brendon if he would take the children so that I could just get some time at home on my own. I needed space to let all this new information start to settle.

Hezekiah missed his first jump but thankfully I had
this photos so I could show him how far he was.
And I was honestly just exhausted from a very long day. Unfortunately no photos were taken. Hannah looked beautiful in a long green dress with her hair done up so beautifully. When I got home and saw her I thought immediately of "Princess Leah". She looked lovely. I was sorry to have not taken a photo straight away.
It was rather busy for Brendon as Asher just headed straight to the Jumping Castle when they arrived. Hezekiah had a fun time within the limits that Brendon set for him (so that he knew were to find him). Unfortunately Asher's jumping ended as it has the last few times she has been on a trampoline or jumping castle - with a seizure. Brendon said she had so much fun before though. So although we have been avoiding it for so long, he didn't regret allowing her to have all the fun she had. And it does confirm that it's still an issue for her. Thankfully it was short, but it also then cut short the evening for the rest of the children. Hannah had been waiting in a very long queue and so ended up not getting to do anything as they had to leave well before her turn.
He corrected so well and got nice
and close for the next jumps.
Wednesday 1st: Great to get the children photo taken this morning. Rachel happened to be wearing her blue top and so I specifically put a blue one on Asher. The children's school "house" is blue, so they are allowed to where their house colours for Athletics.
Great effort as the jumps got higher.
He ended up winning his group.
It was nice to get to chat to some of the mothers when I arrived at the athletics and we waited for the sprints to get started. I was still very emotional about the likely hospital birth and all the unknowns around it. So it was nice to chat to them and let some tears flow. At that point I thought it would be a good idea to organize to go and see the birthing units at the hospital, and even making that plan helped me to feel a little less fearful about this big unknown ahead.
It was hard to try and get to see everything the 3 were doing as the field events continued while the sprints were going on. So I missed Hezekiah's ball throw and Hannah's shot put. At least I got some photos of each of them.
Ruth did the 1,200m again this year. There was a nice group of girls with her this year. They all did so well and put so much effort into it.
Just minutes before I was going to leave to fetch Asher from preschool, I got a call saying she was having a seizure. They warned me that she had fallen and had a nasty bump and graze on her head. I'm glad they had warned me as it looked really nasty. It's hard to even capture on camera how banged up she was. She had been hot and bothered and kept running to the gate asking for me (for 1/2 an hour before home time). This last time she just went too fast and fell. She landed so hard and the bump caused the seizure. With Dravet Syndrome the children are often unstable on their legs. Asher is not too bad, but her OT and us as parents often wonder how she doesn't fall more often. She had a big swollen area on her temple with the big graze. I tried to take a photo from the front to show the swelling - but by this evening when I took the photo it was already looking so much better. Thankfully she had a ice pack on it for a few minutes straight after the fall - so I'm sure that helped.

Friday, October 27, 2017

2 weeks fly by

Monday 16th and the start of the 4th term. A short one this time with only 8 weeks. School finishes for the year on Dec 12th. So just less than two months and the school year will be done. School starts up on 30 Jan and Asher turns 5 on 16th Feb. So "school" is not at all far away for her.
I didn't even bother taking my camera to Champion Centre on Tuesday. Perhaps it's an indication of my energy levels. :-) It was good to get some time with her OT going through the ORS application. That will most likely be submitted next week. It's the one time all you focus on are the struggles. So it was an emotional week finalizing that all. It's hard when you have to honestly look at how hard things are. It was also emotional getting her neurologist's report for the application and on diagnosis we don't only have her epilepsy and autism, but also "Global developmental delay with intellectual disability" as well as "Significant behavioural difficulties".
One thing that I learnt at previous Parent to Parent training is that there is grief involved with having a special needs child. In summary - grief at the loss of "normal". I was glad I had the extra training in the holidays, as it reminded me that the grieving is not a once off thing (when you get a diagnoses for example) but is something that happens regularly through the child's life, as they reach different stages.
With Asher heading into school soon, it is most definitely a time of grieving again. It's been good to just be ok with letting the tears flow. It is sad, and there is no need to deny that. It is also wonderful to then get comfort from the Lord, knowing that He is close to us through this all.
Above: This afternoon she was scooting around the deck so well on this two wheel scooter (she has a 3 wheeled one that is obviously much easier). By the time I had my camera out she had lost interest. It was great seeing her improved balance on it though.
It was a nice quiet week which I was glad for as next week is going to very busy. Asher had a seizure on Thursday at 12:30pm. Again just a 1 min TC with a little bit of extra TC activity afterwards. Thankfully she didn't have pain this time and her shivering wasn't too bad either, so she got some good sleep through the afternoon. I was especially thankful that it didn't lead to a cluster as it has the last few times. It was just the one for the week.
Above: Sunday afternoon. Rachel made pancakes again today and Brendon knew this time to just make two tuna pancakes, so that he could actually get to eat one. Asher doesn't manage to feed herself one (as it just unrolls) but she enjoys eating Dads. :-)
Ruth had made slime at school on Friday and had gotten one dry piece nice and soft this afternoon. We didn't take a photo but there was so much fun later when Ruth walked into the lounge and said "I wonder if it will stick on the roof" and threw it up. It did stick, for a couple of seconds and then fell off - leaving a bit behind. The fun and games in trying to get the last bits it off the roof had most of us almost in tears with laughter.
Above: Asher enjoying some giggle time with Hannah.
Monday 23rd: It was a public holiday today, so it was a nice relaxed day at home. Rachel made a huge pot of Taco mince (to have a few extra meals ready in the freezer for the weeks ahead). Ruth also got a quick lesson on how to make biltong (to also stock up on nice protein snacks for the month ahead).
Hezekiah having some rough and tumble fun with Asher. It's only really recently that this has become a game Asher understands to be a part of.
What a beautiful day for a public holiday. Just a pity Brendon had to work.
These two enjoyed a "scooter roller skate" game together. Ruth often comes up with great ideas.
Asher really enjoyed the scooter today and made sure she got even more time out there after Dad was home. :-)
Tuesday 24th: Champion Centre this morning and half way there I realized I had not given Asher her new Charlotte's Web Hemp oil before we left. We started her on a low dose at the beginning of the month (10 drops of the 500 strength) and have been slowly increasing it. She has been on 40 drops since the 17th. I felt terrible that I had forgotten, knowing that it may indeed be helping. Time will tell. It made me commit to putting it as a priority every morning though. Thankfully it was just a short seizures again, although she is going blue with these lately. I had an appointment with my midwife on the way home, so didn't want to leave early. It was nice to let Asher just have a good sleep though (although it again took a while to settle). I enjoyed a half an hour lie down too and then we headed off.
Brendon is attending training on Tuesday's in town for a while, so on his way home he met us at the Health hub. It was nice to have him there for some of the visit (at least the most important part when listening to baby's heart - the time when Asher can be the most challenging).
Wednesday 25th: A friend came for a visit after lunch today with her 4 month old daughter. She is lending us their Moses basket. I've never used one before, and look forward to having the extra bit of space in our room for a couple of months (before we need to put the cot up). :-) It was quite something watching Asher with the baby though. She just kept saying "baby" and wanting to touch her head. So I can see that we are going to spend a LOT of time training her on being gentle with her baby sister. I can also start getting a picture of how much her little sister is going to have to get used to. :-)
Rachel had a drive into town this morning for a dental check up. It was her first solo trip into town, so it was good that it went well. She will have to go again next week to get some work done.
In the evening I went to the pamper night at the Champion Centre. They put it on every year for the mothers and it is such a treat. Paula (my social worker there) had asked me on Tuesday if I was happy to go straight in for a massage when I arrived. That was fine with me, and I ended up getting such a treat (a full hour rather than the standard 30 min).
Thursday 26th: This afternoon Brendon and I headed in to town to watch the Music Festival (videos on their own post). Paula was instrumental in suggesting and then organizing (she found funding for the cost) for Brendon and I to stay overnight in town after the show. We stayed in this lovely B&B. No rush in the morning. We got some shopping done and then some enquiries into phones (Rachel and I both need new and better phones). We still had loads of time before lunch, so we stopped at the Pegasus lake and just chatted before heading to a coffee shop for a delicious lunch. We made it back in time for the School Assembly, but I will leave all of Friday's photo's for the next post. It was so good to be able to get away for a night (we can't remember when that last happened) and have those extra hours to just be together and chat on Friday morning.
A friend had Hannah and Hezekiah stay at their place from after school on Thursday and Ruth got a lift home with a different friend from the Festival. So Rachel only had Asher to watch overnight. It was good to get this "practice" in before baby comes, as she will have a night or two at home with Asher then.

Thursday, October 26, 2017

Music Festival 2017

Whatever the weather was the theme this year.
Raindrops keep falling on my head.

I can see clearly now.

Rain effect. So good.


Sunday, October 15, 2017

Health hub, restricted and selections

Tuesday 10th: Some fun and games this morning.
They did actually managed to get all 4 of them up (I just didn't get the photo). I just loved how Asher went into the middle to be a part of the game too (even if she didn't have a clue what they were doing).
Asher playing "hide and go seek" with Ruth. She doesn't really get it yet, but it's a start.
She loves having the thing over her face and saying "Where she?" "I can't" "see you". She doesn't manage all those words in a go. She says them in pairs, normally waiting for the other person playing to say the same thing before she moves on. She gets Ruth to lie with the cloth over her head too, but doesn't understand hiding herself yet. She just enjoys pulling it off and seeing Ruth's fun faces.
Wednesday 11th: Thankfully no cancellations today and Brendon and I got to have a look around the Rangiora Health hub. It was nice for Brendon to get to meet my midwife and it was really good for me to see the set up. During my check up she asked me if I had a preference yet (over home or at the hub) and I could honestly say I was still sitting on the fence with no preference at all. That changed within half an hour.
Having a look at one of the birthing rooms helped me to actually visualise the labour for the first time. It helped me to really think about what it would be like at home. It helped me to realize that if I was at home, I would constantly have Asher in my mind. My thought had been that if I laboured through the night, I may as well just stay home. I realized though that I would be constantly thinking about the time and hoping baby arrives before Asher wakes. And even during the night I would be thinking about her and hoping she wasn't having a seizure (even checking her monitor myself to make sure she was ok).
So I climbed off the fence. I now know that the only way for me to really focus on the labour and birth - without distraction - will be to be at the hub. What a contrast to all the other births, where I could not imagine being anywhere but at home. In many ways it makes me feel like a first time Mum - having no idea of how to know when to make the call to head in. I feel at peace about it now though and have actually started feeling excited about the birth.
Brendon and I then enjoyed dinner out before heading home. A nice relaxing evening which I am really thankful for. A friend helped watch the younger children so that Rachel could focus on Asher. I'm thankful for them making it possible to just be out and be totally relaxed.
Above Right: Thursday 12th: Hezekiah making a "Secret Hideout" for his toys out of this box.
Asher had used her talking device to ask for bubbles, so Ruth obliged and had some fun with them outside.
Asher does so love bubbles but can't say it very clearly. It's the one thing she knows very clearly how to find on her speech app. :-)

Seizure summary (as there is space here):
Asher had another cluster of seizures again this week. Thankfully she had a weeks break, but then it was rather busy (all 1 min TC).
Thu 9:30pm. She was restless before, sitting up in bed. So Brendon was with her when it started.
Fri 11:30am and again at 5pm. She was again very restless before the 5pm one, so I had already put a nappy on her.
Sat 4:30pm.
Nana sent us all some tops. Thank you Nana.
And thanks Ruth for the fun time outside. This is another "new" game Ruth has started with Asher (piggy back rides). She doesn't hold on well, so Ruth has to be careful. It's fun to see this fun new activity though.
Ruth and Hannah earned a bit of extra pocket money and cleared the next section of the mound. They got it cleared and we got the next bit of underlay down. (It's taken a while to get the rocks back on - but at least the grass is being killed underneath it).
Friday 13th: An afternoon reading session. :-)
Rachel had gone for her restricted driving test on Wednesday and failed. It was very wet on the day and one of her "fatal errors" was that she was driving at 40 in a 50 zone. We felt she was most likely "driving according to weather conditions" but she took the disappointment well.
She has since heard of a lot of people failing on their first attempt (and often for silly things). So she didn't delay and booked to go again this morning. Thankfully she passed this time - which we were all very thankful for. She was especially glad as it meant she could drive herself to the selection camp this weekend. We were pleased we didn't have to take her on Friday and fetch her on Sunday. So it was very well timed.

Saturday 14th: Ruth decided she wanted to sit in this small box. So flexible with those very long legs.

Below: A fun game of shop. These three often play shop. Thankfully they are good at packing it all away at the end of the game.

Sunday 15th: Hezekiah learning to pack the dish washer. Ruth treating people to omelettes and scrambled eggs for dinner.
Rachel visited the Sampson's for a couple of hours before heading home after camp (the camp site is very close to their home). She was home by 7:30 and did well despite her phone being a useless GPS. She is saving up to buy a decent phone (looking out for when there are good specials on).
Note: She heard on Monday afternoon that she didn't make it into the National Squad (the camp was National Selection camp). I'm glad she tried again, as each selection camp is another opportunity to grow and learn. And it's good to have peace knowing that God knows what the next 6 months hold - and all the extra training weekends was not meant to be a part of that.

Monday, October 9, 2017

Holiday fun - week 1

Sat 30th Sep: The holidays have only just started but Ruth has made a great start to her holiday goal - making a number of loom band items to sell. Asher was checking them all out.

At 4:30pm Asher had a 1 min TC. She had a lot of pain afterwards. It always breaks my heart so, especially that there is no comfort we can really give her. We can also only guess as to what pain she has. We can see pain on her face, but she can't tell us what is hurting.
Having some fun with Hezekiah this afternoon (before the seizure). It's not a simple thing for Asher to learn a new "game" so this was really fun to see. They were playing a bit of "tug of war" with the ball.

Sunday 1st October: Children's monthly photo taken this afternoon.

Monday 2nd: This evening we watched a production of "Little Red Ridding Hood". Ruth has an "Act it up" badge that she is doing with Guides, so she got them practicing today for the performance.
Hezekiah made a great wolf.
Well done.
Tuesday 3rd: Hezekiah's 6th birthday today. It was great that Brendon had taken the day off to help with the party this afternoon. So we could enjoy the tradition of opening presents in the morning as a family. Rachel, Hannah and I bought him a transformer each. He absolutely LOVES them.
He had a great time with his friends over in the afternoon. Those pictures getting on their own blog post. :-)

Hannah and Hezekiah regularly get called on to chase the chooks off the deck. There is one chook who loves just sitting down when you want her to move, so Hannah often gets to pick her up. This is as close as Ruth will get though. She doesn't like the idea of picking them up (even though she has tried).
Ruth and Hezekiah loved the Lego Star Wars ship that he got from a friend for his birthday. Ruth enjoyed building it for him this evening.

Seizure update:
Wed 3pm - 1m TC with pain afterwards again.
Thu 7:15am - 1m TC with shivering afterwards (thankfully no pain).
Thu 7pm - 1m TC with a bit of pain and shivering.
Thankfully she had a nice break after these 3.

Wednesday 4th: This game that he got from another friend is also very popular. (It got so much use this holiday.)
The original plan was that Brendon and I would go and see my midwife for my check up early this evening, but for the first time she had to cancel as she was at a birth. I had shopping to do though, so we just headed down to Amberley and enjoyed some time together (and something special to eat).
Friday 6th: Hezekiah got to visit his friend Sam this morning and Rachel watched Asher so that I could take Ruth and Hannah to a free skate lesson in town that the Champion Centre were given for their families. It was nice for the girls to get this special treat today.
Hannah showing me how she is learning to turn (lifting the front).

I got a bit of shopping done while they were busy (like getting a much needed toaster as ours has been playing up for a while now). After the girls were finished we went back to the shops to get some cheap jandals for summer (they were only $1.50 a pair). I also got to enjoy just relaxing and getting some reading done. A rare treat but one that I have been making an effort to get to more lately.
Trying the ramps at the end of the lesson.
It was a nice morning out. We got some lunch before heading home and also treated the family to pizza for dinner. So a real spoil of a day and a nice highlight for their holidays.

On Saturday morning I headed off before anyone was up, for Parent to Parent training in town. It was held at the Commodore Hotel and we had the whole day Saturday, stayed overnight and finished up around 3pm on Sunday. It was a treat in so many ways as well as a time of learning and growing. I'm so thankful I had the opportunity to attend.
Daniel also came for a visit this weekend, as a surprise for Rachel. He arrived before lunch on Saturday and Rachel had NO idea he was coming. No photos were taken through the weekend. It was rather a wet weekend, so they could do their regular park visit. They did make the traditional pancakes though. :-)
Monday 9th: Anakin such a obliging cat. Hezekiah enjoying his cars and his cat this morning.