From my heart: How are you?

To the question: How are you?
Wow - what a complicated question.
So many levels to that after a 7.5 quake just 30 km from our home, just after midnight last night.

Firstly - safe. No injury and no major damage to our home (there are some cracks - but it's liveable). And only a couple of things that had fallen out of cupboards or off shelves. For this I am very thankful. I have seen photos of homes with almost everything out of cupboards or off shelves. And with the amount of shaking and the length of it - we are very thankful.

Stressed or anxious? No. Even through the quake last night and the bigger aftershocks since - I have never been anxious or stressed. I am thankful for the container that we could all sleep in after the quake - as it did help everyone feel a lot more safe. Especially with no ceiling to potentially fall in.

Despite these blessing though - I am drained. Why?

My plan for this morning?
Rather simple really - Asher at preschool for 3 hours while I get loads of food prep done.

The reality:
No sleep.
A slightly stiff body from squashed sleeping arrangements.
A grumpy Asher who has put up a fuss with basic daily things (like getting dressed and taking medication).
A stressed Hannah, who hasn't wanted to be in a room on her own and took until after lunch to get the courage to go outside for a bit.
And juggling watching Asher while getting the basic food prep done (forget about all the extras I was hoping for).

So I find myself irritable and emotional. Not a place I want to be. I feel alone and overwhelmed.

I know I am not alone. I know God is always with me.
With lunch finally made and Asher sitting at the table with the others, I head off to my room to pray (and cry). The Lord settles my heart a bit and I join the children to have my lunch.

And then the Lord answers my prayer for someone to talk to. Out of the blue a friend calls to find out how we are doing. Even though we only talk perhaps once a year, this is someone I can trust and be open with. I share my struggles and my burdens. My friend sympathises, encourages and prays for me (and the whole family).

The Lord starts answering that prayer straight away.
I feel encouraged. I have more peace. I am reminded about the heart of my God who loves me.
The prayers for the children are answered as Asher becomes more manageable. Hannah starts coping better with the aftershocks and even has the courage to go outside for a play.
The request for support is even answered as I get messages and calls from people who ask if there is anything they can do to help (even offering to drive out from town). They have been praying for us through today. Little did they know how much prayer support I needed. Not for anxiety or stress about the quake, but just the struggles of life with a special needs child.

I reflect on how people can feel drained through times like these because of all the Adrenalin that is rushing regularly through their bodies. It makes me think back to when that first earthquake hit this morning. I was up in a flash, ran to Hezekiah to get him off his bed (top bunk). I knew Brendon was sorting Asher out, and so I got Hezekiah, Hannah and myself in a doorway. There was no panic. Yes, I was working quickly, but there was a calm through it all and through the next hours of bigger aftershocks. I wasn't even aware of Adrenalin - but I'm sure it was there. It made me realise that this is jut "normal" life for me. And it has been for almost 3 years now. Although it may be "normal" it's not healthy. I can feel very clearly today how run down my body is.

So please continue to pray for our family. Pray for peace and calm for the children. And can I ask that you pray for me especially? That the Lord would give me the extra patience and gentleness and energy that I need. And if the preschool is closed again tomorrow, please pray that I would be able to priorities things and get the "basic" things done. A good night's sleep would do us all the world of good too. :-)

From my heart: The strength to say I am weak

On Wednesday evening we chatted with Nana. Ruth and Hannah told her about the visit to the family that they would be staying with while Brendon is in Australia. Nana had asked (as many others might wonder) why I can't just have them all at home for that week. I had a week with him away when Asher was just a baby (May 2013). And I suppose it is in some ways a hard thing to be humble enough to say "it would be too hard for me".
On the other side of it though - if I tried to just "cope" on my own, I would be denying how much amazing help Brendon is to me every day. The extra burden that Asher's epilepsy has added to our lives is no small thing. It has been good for me to acknowledge this over the last months (and perhaps over the last year and a half). To acknowledge how hard it is and how much strain it puts on me physically.
When Brendon gets home from work, he takes over the responsibility of watching Asher. I not only get a break from that responsibility, I also get to have the freedom to get a lot of other things done (like cooking and cleaning). He also gets home early enough on a Tuesday and Thursday so that I can leave the younger children with him while I take the older girls to Ballet and Brownies. Those times of being away from home and having a full break from the constant watching, are times that I have realized are really needed for my health - and are not just treats. On Tuesday I get my shopping done (and I realized on Monday how relaxed that is without 5 children accompanying me) and on Thursdays I get to just sit and read, pray and relax.

There are a few articles that really helped me put words to my experience and so I thought I would link them here to keep a record of them and to share them with you.
The first one is about Hypervigilance: why moms are so tired. Hyper-vigilance takes it's toll on any mother of young children. With a child like Asher though, who needs to be watched even more carefully - the drain is just so much more than normal. This article explained it so well and helped me to almost say "oh - no wonder I feel drained".
And at the bottom of that article I spotted one called "Why your husband isn't doing you a favor by watching the kids". The title caught me by surprise and tempted me to read. ;-) It put into written word what Brendon has been trying to tell me for so long. There have been so many times that I feel bad that he "takes over" with things when he gets home. He always tells me that it is not because I am failing, but because he is also a parent in this home, and he is also responsible to raise these children. I am not forcing him to do these things, but rather he is taking the responsibility of being a father very seriously and very practically. And so for this I am very thankful.

As a Christian, there is also another very important thing to be noted. A number of months ago a friend posted a link that also made a few people take note. The heading is Yes, God will give you more than you can handle. Many people will say things like "you won't be given more than you can handle". This is however not a promise of scripture. This is the promise: "God is faithful, who will not allow you to be tempted beyond what you are able, but with the temptation will provide the way of escape" (1 Cor 10:13).
When it comes to trials however, we are regularly given the promise that "My grace is sufficient for you, for power is perfected in weakness." and this is why Paul could then say, "For when I am weak, then I am strong." (2 Cor 12:9,10). Paul also says in 2 Corinthians 1:8 that their trials were so overwhelming that they despaired even of life. "In order that we should not trust in ourselves, but in God who raises the dead." (vs 9)

God has allowed me to learn these lessons over the last few months. I have (and am) learning to acknowledge my weakness. And to accept it. It is when I know that I am weak, and that I cannot cope on my own, that I can lean on Him, and He can be my strength. He has been my rock and my fortress and all the other wonderful promises that He has given me from His Word.
One of the ways God has provided for me in my weakness, is through Brendon, my wonderful husband. And so I will praise and thank God for that. God has also provided wonderful friends who are willing to come along side and help where they can, and in doing this they "put flesh and bone on the person of Jesus" (as the article above said). Again, I thank and praise the Lord for this.

Another one of the ways the Lord has provided for me over the last couple of months is through the Champion Centre. This is an Early Intervention Centre that Asher has been registered with to help us with her speech delay. The therapists as well as the social worker have been a real blessing to me. Not only in their very practical help and encouragement with Asher, but on a personal level for me as well. They work with mothers of children with special needs all the time, and so have been a part of the process of me accepting that life is just that much harder with Asher's epilepsy. And perhaps even more so this year with learning that it is something she will not grow out of (as we had previously hoped). I thank the Lord for them and see them as a blessing to me from Him as well.
(Note: If you feel led to help support the Champion Centre - they are greatly in need of financial assistance. You can see how to support them through the link above.)

So when, as on Wednesday evening, I am tempted to feel like a "failure" because I cannot cope on my own - I will remind myself of all these truths. I will continue to trust that God has a good and perfect plan through all of this, and that He will work it all out for our good (Romans 8:28).

A hard week and a faithful God

Monday 1st December. Brendon having his turn at being the play gym. :-) Giving me a bit of free time to get some more work done with the older girls. Last week and this week have seen me very busy with them. They both needed some extra one-on-one help with their History and Science (and Math for Rachel). I have enjoyed working through their lessons with them and have learnt much myself. :-) I am so pleased I have gotten to help them so much. I know it's going to be much easier for them in the months ahead. I also know that I am going to have to spend more time with Ruth on those two subjects on a permanent basis. It seems to be that she is an audio learner. So although her reading is excellent - she does better having someone read the lesson to her.

I helped Ruth create a "summary" of her last Science unit. I then went through that summary with her before the final test for that unit. She got 100% for her test. We were both very pleased. It's nice to know I have quickly worked out what is helping her.

Unfortunately on Thursday morning - just as I put Asher into her high chair for breakfast - she had a Tonic seizure. It was only about 2 minutes but this time her breathing wasn't as great as her lips when white. For those who are wondering - it's very easy to see these and the vacant seizures. They often start with little jerks (like this one did) or one big shock like an electric shock. If she is sleeping she will even wake up and lift her head up (how I have noticed vacant seizures through the nights before). Also - her eyes normally go up and often to one or the other side. With a Tonic seizure her neck is arched back and her limbs are very stiff. Even Hezekiah recognises the seizures now. They know to not get too close to her, but they do come and sit around her and I talk to her about everyone who is there with her. Hezekiah will also say "good breath" with me when we hear a nice big breath.

Children's photo taken on Tuesday. The middle three loved how Asher had her hands on her legs - so they copied her.

Asher was rather grumpy through the morning and then had a good sleep (in my arms). So I was not surprised when she was not tired after lunch (when she normally naps). I had really struggled in the morning though. I was glad I asked for prayer on facebook as I could feel how I was lifted on those prayers through the day. I was especially glad for that when she had another seizure, this time a 1 1/2 minute vacant seizure, at 2pm, causing her to go purple around her mouth.
These were my fb updates through the day:
12:30pm I would appreciate your prayers. I am having a very hard day.
Asher had a seizure this morning. That's the 4th one in the last 3 weeks. Today it just all feels too much. I know next week the doc will decide on a new AED to start. The reality is that I just hate this all.
BUT when I am weak then He is strong.
I know that the Lord will never give me more than what HE can handle. I sure can't handle this - and have not been able to for the last year. He however is my ROCK and I know I can hold onto Him through this all.
I need His help, every minute of every day. Today - even more so.

I really appreciated what Elke wrote:
Ah Belinda...bless you for being so candid about how you are feeling...as Christians people think we are meant to always 'have it together', and be able to just cope, cos if we don't then our faith cannot be that strong...but I have learnt over time that, actually, we are allowed to be "weak" and feel overwhelmed and scared and worried, and sad and tired of handling what we have been given....and feel all the emotional things other people do. It is ok to feel all this - God can handle it.... And He can handle our anger and our questions... You are an amazing woman of faith, and encourage so many people daily...feel encouraged now in knowing that others are carrying you in prayer....I truly believe Asher will outgrow this - and if not outgrow it, God will heal her of it....we know He is more than able to do that....Thinking of you and praying for you, Brendon and Asher....xx

And then my update at 2pm: She just had another one. I am thankful for the prayers, I am feeling less teary now. I am also thankful that my precious Ruth is making me some lunch.

"Thank you Lord that your peace truly does surpass understanding."

7pm: Thanks for all the prayers. I am feeling so much better. I thank the Lord for His peace.
Yes, Jeanie - we really do pray that she can get the meds needed to help these stop. The AEDs still really scare me though. The first one she had this year had such a bad reaction. Causing myoclonic jerks and atonic head drops. Even the two that she is on now have their side effects on her. So it's just a scary thing to know we are going to have to start on a new med journey again.
I know God loves and cares for Asher even more than I do. So I pray that He would guide us and the doctors and I know that He has a good and perfect plan for her life.

God is so faithful. Even through these hard days He showed Himself so very faithful. As the verse says that Kerry shared: '..when my heart is overwhelmed: lead me to the Rock that is higher than I.' Psalm 61v2b.

From my heart: 5 weeks and a dozen in a day

On Wednesday 17th we were thrilled that Asher had reached 5 weeks since her last seizure. For the first 3 months of this year she was having seizures every 2 weeks - so this was a huge breakthrough and improvement that we had been praying for.
Unfortunately on Thursday 18th she had a short vacant seizure at 6pm. She went blue around her mouth again but thankfully as it was only around 1 minute long she quickly got a bit of her normal colour back. She slept for half an hour and then managed to get her normal milk and kefir before her meds at 7. We were hoping and praying that it would just be a "once off" but that was not meant to be.
At around 1am she woke screaming and went into a 3 to 4 minute grand mal (Tonic Clonic) seizure. She went right back to sleep afterwards and I just left her lying between Brendon and I. That was number 1 for the day.
At around 2am I heard her breathing change and felt a bit of shaking in her arms. I put the light on and saw she was having another vacant seizure. Again it only lasted about a minute but she went very grey and there was just no colour in her lips at all.
She slept again but through the next 20 minutes had 4 big jerks (just once off jerks - like a startle reflex). So I was not getting any sleep - just lying there listening to her breathing.
No. 3. Just before 2:30 she had Clonic Tonic with a small scream which lasted about 3 minutes. She again went a bit blue and so we called the ambulance. She wasn't "pinking up" as quickly as we would have liked so knew she would benefit from oxygen. The paramedics arrived and her saturation level was sitting at around 86, so the oxygen helped bring that quickly up to 100 (for a normal person it sits between 95 and 100). It was hard to know what to do because a month ago when she had a cluster of 4 seizures they then stopped on their own. Jacqui (the paramedic who lives down the road from us and has often been here with Asher) had taken the oxygen off her once her levels were up but then we checked her levels again and they had dropped down to 91. So Jacqui suggested we rather just head into hospital. Her gut feel was that they were not going to just stop. And she was so right.
No. 4. Just after 4am - half way to the hospital - she had another 3 minute Tonic Clonic. It was great having the oxygen there for her so that at least she could quickly get back to 100.
Asher now has a "blue card" which means we don't have to wait in ED (Emergency Department) as we have done with all the other visits, but could go straight to the CAA (Child Acute Assessment). I could get the fold out chair open and at least lie down for a bit and try and get some rest.
No. 5. At around 5:30 she had another vacant seizure that lasted about a minute. I heard the now familiar clicking of her tongue. It was great to have the nurses so aware of what was going on so that as soon as I pushed the caller twice they were in the room in a flash. Ready to give oxygen and be that emotional support (for some reason it just feels easier to deal with when there is at least 1 other person with me - even if they are not actually doing anything).
No. 6. At 5:50 she had a 2 minute Tonic Clonic.
No. 7. At 7:30 she had a 2 minute vacant seizure. I had been sleeping but heard her move and saw her lift her head up. She had actually moved in her sleep before that into her normal "on tummy" position and so I had actually thought she would now get a good long sleep. She wasn't waking up though - she was having a seizure. I quickly got her into recovery position and she went really grey so it was great to have the nurses there helping get the oxygen for her.
She would normally wake up by 7:30 to have her meds. I knew she had to have those but was also aware of the postictal state making her very sleepy (I was also exhausted myself). Just before 8am I managed to get her to wake up enough to have some soft fruit puree (easy to eat when you are really tired) and then her meds. Thankfully for me she was still very tired and so she went back to sleep and so did I. The nurses kept the door and the curtains of our room closed and did not disturb us so that we could both get some rest. It is such a blessing that she still breastfeed at least 4 times a day because I just fed her lying down and she fell asleep next to me. This way we were both very relaxed and could sleep really well.
No. 8. Just before 9:30 the neurologist arrived to have a chat. With me getting up she then woke and I put her on the potty (she normally has to go when she wakes up). I had been chatting to the doc and one of the questions he had asked was how I know she is having the vacant seizure. I was describing it as best I could. Asher had just finished on the potty but I felt something was wrong. I looked at her and said "are you ok" and the doc said "she looks ok" and moved to the side - with her following him with her eyes and head. Just seconds after that though a vacant seizure started and a few seconds later I could hear the clicking in her mouth. So I put her down and got her into recovery position. He then asked me how I knew when it was over. It was hard to actually describe. I knew the clicking in her mouth stopped and although she was not having a tonic seizure (where her whole body goes terribly stiff) her body was more stiff than normal. He could see that as he tried to move her a little. So I knew that her whole body would just relax when it was finished. As it stopped her body did relax and what I noticed is that she started blinking and moving her eyes normally too. So the doctor got a lot of questions answered by seeing it himself.
What stands out for me wonderfully about this visit was when he said that he is more encouraged by her 5 week gap than he is discouraged by this cluster. He explained that often children - even when making excellent progress with their epilepsy - can often get these clusters happening. We just have to work out how to stop them. I discussed with him how hard it was to know when to give her Midazalam - the quicker acting AED that we would give if a seizure went over 5 minutes. After talking about her previous clusters we decided that if she had more than 1 seizure in 12 to 24 hours - we would give her the Midaz. He explained that it can be like a migraine (and I know about this with Brendon). If you get onto it really quickly - medication can often work really well at stopping it. The longer you leave it and the more severe it becomes - the harder and harder it is to control and stop. It's the same with seizures. The more the body has, the more comfortable it becomes in that seizure state. So the quicker we stop the cluster - the easier it will be to stop.
So by 10am she had a dose of Midaz and I was thrilled to see her up and she even had a lovely time of eating the pasta bake for lunch. I had her shirt off as she had developed a slight temperature through the morning (I can feel by touch and the nurses confirmed it was around 38). So although not a major concern - it was an indication that perhaps the trigger to this cluster was her body fighting off a small viral infection. Ruth has had a bit of a runny nose and what can often happen with epileptics is that when something else weakens their body - seizures just happen more easily.
No. 9. When it got to 1:30 I was starting to think about us perhaps being home for dinner. 4 hours seizure free felt wonderful. This morning I had unwisely not packed for overnight and not even put a short sleeved shirt in for Asher. So when she had another vacant 1 1/2 minute seizure at 1:50pm it really knocked me. I knew however that we would have to stay overnight and it all just felt a bit much. This also being the worst day she has ever day (the previous being 8 seizures on 5th Jan). Thankfully God blessed me with a lovely friend who even though too many hours away physically to visit - was still able via text messages to be a shoulder for me to cry on.
It was good to just acknowledge how hard the day had been. I really did just need to cry about it all. The one nurse came in to let me know they would be moving us to PHDU (Paediatric High Dependency Unit) for the Phentoyin drip (a very strong AED that would hopefully be enough to stop the cluster). She was very kind and understanding and it was a real blessing to have someone just take time out to sit with me and give what comfort she could.
No. 10. At 2:45 she had a 1 1/2 minute vacant seizure and she went very blue. It is really horrible to see her go so blue - even her ears went blue. I was so thankful that we were in hospital and the nurses were so quick and ready to help. As soon as the nurse got the oxygen in front of Asher I instantly saw her ear turn pink. What a blessing to have that physical support for her through the seizures as there is absolutely nothing else we can do.
We got her line in for the drip (bringing an oxygen bottle with us into the treatment room - just in case) and waited to hear that PHDU was ready for us.

We got down to PHDU and got Asher all attached. She needed to be on proper heart and breathing monitors for while the drip was going (3 extra monitors on her chest and tummy as well as the one on her toe).
Thankfully I was feeling much better by now. Brendon had wonderfully managed to pack a bag for me with all the things I didn't bring with for an overnight stay and a friend of his who was heading into town dropped it off for us.
At 4pm we got the drip started. I had spoken to the neurologist about how painful the drip was for Asher in January (she cried terribly both times she had it on 5th and 6th Jan). So he told the nurses to dilute it and let it take a full hour rather than the normal 20 minutes. This did help so much and she managed to get to sleep once the first discomfort had settled.
No. 11. Unfortunately right in the middle of getting the drip - at 4:30 she had a long 5 minute seizure. It started as a vacant and then developed into a Tonic Clonic. The doctor who was supervising PHDU rushed over to her when it started and was full of concern and care. They stopped the drip while she settled and once she was sleeping again started it up and the doc phoned her neurologist to just get advice on what to do if another one happened and if Midaz should be given. It was such a blessing to know that they really cared and wanted to do the absolute best for her.
At 5:20, once the drip was finished she got a dose of Clobazam (another stronger AED we have used in the past to help control clusters - a bit stronger than Midaz). Each AED gives a different type of "cover" and lasts for different lengths of time - so I agreed that at this stage it was a good idea - making sure we really do put a stop to the cluster.
No. 12. At 6:20pm she had a 2 min Clonic Tonic. Thankfully this was the last one and we both had a good nights sleep. I was very thankful that PHDU was not busy and there were two open beds next to Asher. We put a sheet over the one (the bed was already made but if needed my stuff could be quickly pulled off and the bed would be ready) and I could use that to sleep on (rather than a leaning back chair). I knew that if any children came in during the night I would have to move - but thankfully there were no new admissions and we could get some solid sleep.
Another blessing in the evening for me was when the dinner trolley came past. The PHDU is at the end of the horse shoe children's ward and the lady said she had an extra parent meal. Normally the mother would get a meal for a breastfed baby under 6 months (so I would not be getting one). The nurse said she didn't know of any ordered and I quickly asked if perhaps the CAA had ordered it for me. The nurse immediately said "lets take that as the reason" and I got a lovely free meal of corned beef and veg. It was delicious and a real blessing that I did not need to head down to the cafe to buy dinner. Asher didn't eat anything after her lunch and so it was a blessing that I had good milk for her for the rest of the day.
When I spoke with the neurologist in the morning he said he was happy to leave her long term AED (Epilum) at it's dose and just see how things go with more quickly stopping any future clusters. With the afternoon's seizures however he had changed his mind and suggested upping it from 4 to 5ml (twice a day) and also giving her Clobazam twice a day for 5 days. Thankfully I had her Epilum with me, so I told the nurses I would be giving her the normal 4ml and would talk to the doc in the morning about it.
With the change of nursing staff overnight it was a different story in the morning. These nurses didn't know I had her Epilum with me and so made up a 5ml dose along with Clobazam. Asher reacts really badly to the Clobazam and so I gently said that I did not want to give her that. The nurse was a bit shocked and said "so you are not giving your consent?" My heart was racing but I knew I had to make the best decision for Asher and I was very strongly convicted that this was the best decision. I had no problem giving her another dose of Clobazam if she had another seizure - but I wanted to rather wait.
When the neurologist came by later we chatted about it and although I was really nervous before it went really well. He was happy with my request to leave it at 4ml and when I suggested rather using the Clobazam only if she had another seizure he was also happy with that. He said that he would personally do it the other way (give the Clobazam preventively and just make sure there are no more) but he respected the fact that we are aware of how the drugs effect Asher. He clearly knows we care for her well and only want the best for her - educating ourselves on how best to make full use of the medication that is available to us.
He said he would feel better if we were still there for a couple of hours, but as Brendon would not be able to get to pick us up before lunch he was happy that we make plans to head home - having those extra few hours close to care if it was needed. Again I thanked God for good communication with her neurologist (even though this was not her main one but his partner who was on duty this weekend). I thank God for their care and concern and especially for their friendliness with the child. It is such a blessing to have doctors who really care for their patience.
Rachel called the Love's to ask if the children could stay there while Brendon headed in to fetch us. We heard from Ruth (Love - the mother - not my Ruth) later that she had thought about phoning to offer but then felt confident that we would feel free to ask. I was so glad she mentioned this as it set my heart at ease that we are not over-using their kind hospitality to our children. The children were obviously thrilled to get a few hours of playing in rather than having a few hours in the car.
Another huge blessing was that Asher was smiling already on Saturday afternoon. It took her almost a whole week to learn to smile after her 11 seizures on 5 and 6 Jan - so this was just wonderful. She was wobbly on her feet on Saturday but already so much more stable on Sunday. There are a few other things that are hard after hospital stays like this. We don't know if it's the actual seizures or the medication or the hospital stay itself. She tends to be very sensitive to noise and will cry very easily if someone else cries or makes a loud noise. She cries a lot more than normal, especially at sleep time. So she gets rocked to sleep for a few days. Thankfully we have excellent pro-biotics and have given her extra for a few days and that seems to be helping her stomach a lot. We do know it's just a time of adjustment though - so even though I write this on Wednesday 23rd - we know that these difficulties will settle down in time and we just have to take things one day at a time.
We praise and thank God for the times of smiling and laughing and enjoying things as she did a week ago. This photo was taken on Sunday afternoon and she had been laughing at Dad tickling her. Just two days afterwards. I can't describe the wonderful joy this brings to my heart.
As I write this on Wednesday evening I also praise and thank God that she has gone for 5 days now with no seizures and no extra medication. A double blessing.
A friend wrote today saying that my strength was incredible. This was my reply:
It's the Lord that is incredible. I know very clearly that it is only His grace and care that has gotten me through this all. It was the worst day she has had on Friday with 12 seizures eventually. On Friday afternoon I just spent a good time crying. It was good to just acknowledge how terrible it was to go through. It is a really horrible thing to watch, especially when it's your little baby. God faithfully comforted me in that time though and it wasn't long before I could smile again and see His many blessings and be comforted by His care and love. He has taught me to trust Him fully and to really rest in Him. It would be too much to bear otherwise.
All praise and glory to God who is my daily strength and comfort.

From my heart: Ambulance fun?

Asher was up earlier than normal today at around 6:30 (before it was 7 or 7:30) and as I have not been sleeping well Brendon took her through to the lounge to play while I tried to get a bit more sleep. It didn't last long though as Rachel called me at 6:50 because Asher was having a seizure. She was happily playing with toys when it started, causing her to just fall forward (thankfully just from sitting). It was more like her "old" ones. A grand mal (tonic clonic) seizure lasting for just over 10 minutes. Her breathing was nice and rhythmical through it all and it had the same patter as those others, the rhythm changing just before it stopped. She lay resting there for about 10 minutes and then woke and clearly wanted to get up. She had a bit of paralysis on her right (which was the side of the focal point this time) but soon fell asleep in Brendon's arms while I did some calling.

With the seizures two weeks ago the same thing had happened, her body adjusting to the new dose of medication. She had an increase then and again last Saturday, so this being a week later it was not a huge surprise (although still very disappointing). Her body has just adjusted again. At some point things will level out but we need to find where that level is. So I called the hospital to find out what her new dose should be. The doctor on duty did not know Asher and because of the seizure going over 5 minutes, they wanted us to come in. With the trip being over an hour, they said I should call the ambulance (just encase she had another seizure while traveling in).
I naturally look for all the blessings God gives through these unexpected events and today the thing I was thankful for was the fun Hezekiah had with the ambulance driver. Not long after they arrived Adhere woke up and so I gave her breakfast before we left. There was no hurry to get going and so Hezekiah got to spend some fun time checking things out. Rachel got a nice photo too.

It was a blessing that he got to have such a positive experience with the ambulance and to see us leaving with no stress or worry. The ambulance driver and Hezekiah were instant friends and he even popped in on his way back to let Brendon know that the trip went fine and that Asher slept most of the way. Hezekiah was pleased to see him again but a little surprised that I was not with him. Thankfully Brendon was already making plans to come fetch us and they all headed into town, eating their lunch on the way.
It was a bit frustrating for me to have them tell me the new dose and say "you can go home now". The doctor apologised for the mix up when I called in as it could have been done over the phone. While we were travelling home I spoke to the children about it all. It was good to talk to them about how I handle things like this because although I share it all on the blog, I don't always talk to them about the details. So I spoke about how even though a trip into town was not fun for them and not what we had planned for our day, we could trust that God had a bigger plan. We spoke about all the positives and all the things we could be thankful for. I shared with the children some of the conversation I had with the paramedic. She is someone who we are getting to know rather well now as she lives up the road from us and walks her dogs past our place. She stopped for a chat the other day and so we will see it as a blessing that I got the time to chat more with her.
It was also good to have a chat with a doctor who knows Asher's history better and talk about what our "plan" was for the rest of the day and weekend. She was even able to chat to Asher's neurologist (who she had spotted and quickly chatted to) about Asher's new doses - and so we had input from someone who knows her well and has a lot of experience with this. Asher has a follow up appointment at the hospital on Wednesday, so we will be able to chat more about things then too and see how she is doing on the new dose.

Thankfully Brendon's day was not totally waisted with travelling and he managed to get some work done in the garden. He had dug up the pathway to the bridge in the morning and before dinner got to do a bit more clearing work of this section of the property fence. We were all exhausted from the trip and just spent the heat of the afternoon indoors relaxing. We all got a bit of stone work done after dinner though. It will look so nice when it's done.

It was a huge blessing that I could still get our monthly children photo taken today. Asher was a bit "hyper" though and so Brendon had to stand really close as she kept wanting to climb off the chair (and she can't do that safely yet). So she was looking at him.
It was interesting to note today that while sitting, Ruth and Hezekiah are only just taller than their younger sibling. It will be interesting to take a photo of them all standing to see the true difference in their heights. It's amazing how much of their height is in their legs.
Only in the evening did I notice that Hezekiah was running around with NOTHING on his feet. Apparently the dressing was already off in the morning when he got up. I gave it a clean and was very pleased to see how much it had already healed (from just a day and a half of being nicely pulled together). The first photo is Thursday morning but it looked the same on Thursday evening before I re-did the dressing. Thankfully I did manage to clean it well that night before the steri-strips went on and it has healed beautifully. I can't believe it - the difference in just 2 days.

From my heart: Another medical week

I remembered to get a photo of her in her
walking ring this time.

On Sunday evening (19th) just as I was going to give Asher her medicine, she had an absence seizure. It only lasted 2 to 3 minutes but her breathing was again not great. We called the ambulance as that was what had been agreed would be our handling of any further seizures. Before they even arrived I got in contact with the hospital and got some advice from them on what to do. We all agreed that she was stable and fine, so we would wait and see what the night would bring. The ambulance staff assured us too that it was no problem for them to head over to us again if needed. If she had another seizure or if we felt unsure about how she was doing, we would head in to the hospital.
The night went well but at 5:30am (just as Brendon was going to leave for work) she had another seizure. I had decided to have her video monitor receptor (if that makes sense) next to my bed. That way, if I heard anything funny during the night, I could just switch the receptor on and have a look at her (even though the room is dark). I did check her whenever I heard movement through the night and in this way managed to not be stressed and get good sleep in between. At 5:30 I did what I had done many times through the night but saw her sitting up and I could see that she was rigid. I quickly put the light on and got to her. Yes, she was having a tonic seizure. Again it only lasted between 2 and 3 minutes but again - her breathing was not great. I managed to quickly call Brendon on his cell so that he could come in (he was already outside and just about to leave) and then we called the ambulance. The first response was with us quickly and the ambulance had been requested (although not urgent at this stage - just wanting to get in when we could). At 6am with the paramedic next to her, she had about a 3 minute grand mal (colic tonic) seizure. The paramedic then called the ambulance and upgraded the call to more urgent.
I was almost packed by then and so sat chatting to the paramedic as we waited. She had gotten a bit emotional after the seizure, saying that it's just not right with such little ones. She says it's fine when she sees a seizure in an older person, but really struggles with babies. She made a comment about how well I handled the seizure. I could give all praise and glory to God who is the one who gives me the peace through these times. I told her about how the bible says He gives a peace that "surpasses understanding" and I am very thankful for that. So we had a good chat. The same type of chat I would have later with another nurse as she witnessed my handling of the seizures that we would face later that day.
Thankfully Asher was fine for the next few hours. By lunch time they were even talking about us heading home and I had called Brendon so he could start making some plans. Those plans all changed when after her extra dose of meds she had another seizure (12:30). She then had another one at 1:30 and so a 2nd lot of meds were started to help break the cycle and allow her long term meds (at the new dose) to build up in her system.
We moved down to the children's ward to spend the night (just in case) and at 4:30 she had another seizure. This one the longest - at almost 4 minutes. It was a little while after this that I was a bit of a wreck. I had not made enough effort to look after myself and had not eaten well through the afternoon. So when the food trolley went right past our room without stopping, I broke. I sent a text to Brendon asking him to call me. This ended up being a blessing as I was in tears by the time he called and the nurse who called me for the phone saw that I needed some care. She held Asher while I had a quick chat to Brendon and then she organized a big plate of food for me, a jug of water (which I had been hoping for the whole afternoon and not bothered to ask for) and even made me a hot cup of milo while I waited for the meal.
It was rather frustrating for me to feel this weakness. Through all that we have been through over the last 3 weeks I had mostly been so calm and collected. It was horrible to feel so frazzled. The nurses were very reassuring and understanding saying that it was more than normal to be emotional as we had been through so much. They were all very kind and I learnt a few more lessons.
I was reminded that I am weak. I have been giving God the glory for the peace that I had been experiencing but I had taken for granted how well I have been coping physically. This was a shocking reminder for me that I do really need to care for myself too (and even a simple thing like getting enough food). It helped me to be thankful for how much the Lord has also helped me physically over the last weeks with broken sleep and all the other changes in routine.
It also helped me to be more understanding and compassionate for people when they are going through a hard time physically. It would have been such a simple thing to ask someone if I could get a bag for my dustbin and a jug of water, but because I was physically struggling, even asking for those simple things was almost too difficult for me - and the lack of having those simple things was upsetting me. Once I had had the good cry and that wall was broken down I just asked for those simple things and people were more than willing to help. So although it may seem really silly that people don't ask for things they need or speak up for themselves, it can be that they are just physically and emotionally not able to handle simple things. It was a humbling and eye opening experience for me.
It had been a very draining day for us both and so just after 8pm Asher and I were fast asleep. I pulled her cot right up to the side of my bed and so even though she was very restless through the night, I could still get good sleep, just putting my arms into the cot and holding her tummy or rubbing her back when she was upset.
We spent as much time as we could at the Activity room while we waited to see the doctor. They came while she was having her morning nap and were happy to leave her sleeping while we chatted. It was good to chat through the whole medicine plan for the week ahead and to understand a bit more about how the medicines work. The doctor said although she was disappointed to see us, she was not surprised. She communicated clearly that we want Asher on "as little medication as possible" and I was really thankful for this.
Asher's AED (Anti Epileptic Drugs) need to build up in her system. So after her first week she had an increase (as the body metabolises the meds and adjusts it stops working as well). We had not increased automatically a week later and so as her body made more adjustments, the meds were not strong enough to stop the seizures and they started up again. So we upped her AED again on Monday and then she was put on a quicker acting booster AED for the week. The plan is to have the booster and this dose for 5 days and then up her AED again. Hopefully then her body will adjust and the meds will reach a stable level. It will be a time of just taking things one week at a time and working out what dose will be the right one to control the seizures.
Brendon had organized a baby sitter for the day and so he came on his own after lunch to pick us up. It was wonderful to be home for dinner and enjoy some of his birthday cake.
Unfortunately Asher's evenings and nights just got worse. She was just very restless on Monday night but on Tuesday and Wednesday night we ended up having to give her 2 doses of pain killers each night to help her sleep. She was crying in pain and had so much wind and stomach discomfort. On Wednesday the pain meds did not really even help that much. We were counting down the hours to be able to give her a 2nd dose at 2am and only got about an hour to two of sleep after that.
I had been chatting with the hospital each evening but on Thursday I decided to phone in the morning (the previous night had been so bad). She was also rather grizzly on Thursday morning and just not her happy self (she had been ok the previous days through the day). They suggested I get her to the local doctor to check her ears and throat and feel her tummy. We managed to get an appointment in the afternoon which I was grateful for.
Although she had no fever she did have a red ear and throat. Thankfully no lymph nodes up so I felt it was still early stages but at least knew why she was grizzly that morning. I had started in the day treating her tummy for colic as I had with her and Hezekiah when they were babies (with an excellent pro-biotic and "Spascupreel" for cramps). After the doctors appointment I got her onto a few other natural products to help her ear and throat. It turns out she likes honey, and so she started getting teaspoons of Manuka Honey as well as Colloidal silver and glyconutrients. God graciously allowed these things to help her so quickly and she had such a good night. By Friday morning she was back to her happy, playing self. I will keep up with all the extra products to make sure she could get over it properly and I will keep her on the probiotics for a while still (or as long as I notice her extra wind).
I thank the Lord for giving me a special friend who reminded me of different things I could try to help Asher. It was a simple question on Thursday morning of "are you giving her a probiotic"? That just got my mind thinking about what I could do during the day to help her before we got to the crying in pain in the evening. We also discussed different natural things that could help Asher's ear and throat and it was such a blessing to get my mind working and thinking about what I had at home that I could use. And she is doing so well.
The Lord has again given me so many things to be thankful for through this time. Family, friends and medical people to help care, support and encourage.
Mostly for keeping Asher safe and helping her through this tough week. It is a huge blessing to have our happy little girl back and with no extra medication in her poor little tummy.

From my heart: A long hospital stay

We had an unpleasant start to 2014 with Asher having a seizure at 7:20 on Wednesday morning. It was rather disappointing to have her restart with these. There was no bump on the head to cause this one. The seizure itself lasted the normal 12 minutes but because it was so much later perhaps and she was due to wake up, she did not sleep after it. So for the first time I got to see Todd's Paralysis where her left side (where the jerking started this time) was paralysed for about an hour. We had not known anything about it before and so we were thrilled (and I was in tears) when within an hour or so she started using her left hand and then was able to crawl. It can last up to 36 hours (now that I know more about it) so it was a blessing that it was for such a short period. It was rather emotional seeing her awake and just unable to use that side. It must have been so strange for her, so I am glad she was not distressed by it. We don't know if this is the first time it has happened as with most of the others she has had a good sleep afterwards.
She bounced back quickly as she always has done and even Nana was surprised to see her that evening when we chatted on Skype as she could see for herself that she really was back to her "normal" busy self.

Then just 4 days later, on Sunday morning, she had another seizure at around 6:30am. It was very similar to her others and she seemed fine after a little nap with me. At 9am she had a little "episode" where she was blank and not responding to us. It only lasted a couple of minutes and as we had made plans to visit a church in Amberley we decided to stick to the plan as she normally has a very uneventful day after a seizure. Today was not going to be normal.
Through the service she had two more little seizures (looking back I realize they were seizures - just different to her normal ones). She had played a while and been fine and then fallen asleep in my arms. The first one she just woke up and I could see in her eyes that something was happening. Her breathing was not great either but then she got over it quickly and went back to sleep. The 2nd one was more serious and I called Brendon over. We had her on the floor in recovery position and were trying to get her to take good breaths (blowing into her face to try and get her to take a deeper breath). It again did not last long and she went back to sleep. A friend was dishing up lunch for me and I was chatting to her and some of the other mothers about Asher's epilepsy and I was rather emotional by this stage and it was so good to have these ladies to chat to. Just as I was about to sit down to eat, Asher started having a much bigger seizure. I quickly got to the play area to put her on the carpet in recovery position and it was very traumatic for me to see her in a total Tonic seizure (her whole body stiff). I immediately got her seizure medication out and gave her a dose. I was not going to even wait 5 minutes (and it did not last that long) as it had only been about 45 minutes from the previous one and I knew a little bit about Status Epilepticus where the body just gets too used to a seizure state and can get into a non-stop seizure. At the same time Brendon called the ambulance.
Her breathing was not great through the seizure and she went a bit pale (not grey / blue yet). Thankfully it was really short and she was quickly in a quiet, postictal state, breathing steadily. I knew I would be heading off with Asher so I ate my lunch while we waited for the ambulance to come. It was such a blessing for me to have a few ladies come over and chat and encourage me. The Pastor also came over and we chatted about a few things and I shared my fear about having to start Asher on Anti-Epileptic Drugs (AEDs). I did not have peace about it and asked for their prayers for wisdom to know the right thing to do for Asher. Just before we left the Pastor prayed for me and I really appreciated his understanding of my longing for that wisdom from the Lord.
The seriousness of Asher's morning was emphasised for me when the ambulance staff called to chat about things with the hospital. They ended up getting an ambulance to come and meet us on our way in (they were even travelling with their siren on to get to us asap - something that rarely happens here). They wanted to have stronger medication available if Asher had another seizure (the same medication that I gave her but in an injectable form and stronger). So we met them on the road and ended up just switching ambulances.
We arrived and headed to Children's Acute Assessment where we have been before. I chatted to the doctor about the possibility of starting medication, knowing that it was something we seriously needed to consider. She said Brendon and I could chat about it and make a decision within the next couple of days. I appreciated her understanding of my concerns with the AEDs and we were starting to make plans to head home (I had even phoned Brendon to tell him he could come and pick us up).
Those plans all changed when she had another seizure at around 5pm. Thankfully Brendon was only minutes from home when I got hold of him to change plans. The doctor suggested getting a quick acting AED into Asher through a drip which I agreed to. She had her line put in and the drip was planned for just after 7pm. Before she managed to get the drip however - she had yet another seizure. We moved to the Paediatric High Dependency Unit and she got the medication. Within minutes she had yet another bringing the total up to 8 for the day. It was great having the nursing staff there and ready as soon as I noticed one starting. I could ring the bell and they quickly came and helped get her oxygen and give me a bit of comfort and support. They were all relatively short compared to her "normal" morning ones, ranging between 90 seconds and 3 minutes. The evening ones were more of a concern as she started going "grey" quite quickly. It was a huge blessing to have the oxygen right there and get her saturation levels back up so quickly. What a blessing we had not headed home.
This above photo was taken at 10pm, sleeping peacefully with all her monitors on. She had a heart monitor which also kept track of her breathing (3 little stickers on her chest) as well as an oxygen saturation monitor (on her big toe). For a little while she also had a blood pressure cuff on so that they could check that her blood pressure had not dropped from the drip. God graciously allowed her to have a totally uneventful night and allowed me to get good rest when I did sleep.
Half way through the night I had to move from the bed I was using onto a lazy boy as an extra patient came in and needed that bed (I knew this was what might have to happen but wanted to use the bed while it was available).
Before going to bed I was able to chat to Brendon and we agreed that we had to get Asher started on the long term AEDs. It was really helpful having the doctor chatting to me about it all again in the evening and saying that she understood it was a matter of deciding the "lesser of two evils". It was helpful having her acknowledge that the medication was not our first choice, but with the severity of the pattern of Asher's seizures, something more drastic needed to be considered. She did not make me feel pushed and I think that was just what I needed. That little bit of space (and loads of prayer) to get me to have peace about that decision. The Lord had answered my prayer for wisdom from Him to be confident in what decision to make. He is so faithful and I praise and thank Him for his compassion, care and guidance through this trial.

Unfortunately we did not have an uneventful Monday with Asher having 3 more seizures. The first at 10am at which time they decided to give her an extra bit of the medication she got through the drip the night before. It was again very uncomfortable for her when the drip was put up and again she had another seizure soon after the medication was finished (around midday). She also had another EEG before lunch. She was not happy when they put the cap on (as they have to scratch the head a bit to make sure the connections are good) but once it was on I sang to her and she fell asleep for most of test. She just woke for the flickering lights bit at the end.
Things were nice and quiet for a few hours after lunch and then she had another seizure at 5pm. After this seizure she had a bit of a raised temperature and so questions started being asked about where that was coming from and if the fever was in any way related to the cause of the seizures.
It was lovely to have our homoeopath, Christine, visit us on Monday evening. She brought me a charger for my phone (which had gone flat on Sunday already) as well as sushi and wonderful encouragement and friendship. We did get to chat about Asher but also about other things and just enjoy a nice visit. It was a real blessing to me.
Thankfully I had a bed for the whole night and it was a nice and quiet night in the ward. The previous night the girl with pneumonia had struggled terribly, so I was thankful she also had such a good night.

She slept really late on Tuesday morning. I took this photo at 8am. When she woke she did have a good breakfast which I was so pleased about. She had not had any food since Sunday morning. I am glad she is still breastfed as I could just feed her more and know that she was getting good "food" in even if she was not eating.
She is very popular with the nurses and they all just love her cute bottoms up sleeping position.
It was great to have Holly pop in for a quick visit and also bring me a bag of things from home. It was lovely to get to shower and put fresh clean clothes on.
Tuesday also saw Asher having blood tests done as well as a lumbar puncture. The main reason for the lumbar puncture was to make sure there was no infection on her brain or in her spinal fluid (causing the fever). At the same time they could then get a whole range of other tests done to rule out any other obscure reasons for the seizures. These tests had been mentioned to me before and so this was an opportunity to just get it all done in one.
The decision was made to slightly sedate Asher for the lumbar puncture so that she would be nice and still. Not putting her out fully as she had already gotten so much put into her little body. So they gave her some Midazolam - the same medication I have given her during seizures. It was supposed to help relax her and allow her to not remember anything of the test. It had the opposite effect though and she ended up a bit high. It was rather funny as she crawled around the bed, talking to everyone and pointing to things. She had not spoken since Sunday morning, so it was lovely to hear her voice and so very funny to see her on "cloud 9". The nurses and doctors were all patiently waiting for it to make her quiet but we all ended up laughing at her. The blessing in all of that was that it was good for me to laugh.
They had to however end up giving her another sedative which thankfully worked very well and she slept through the procedure and they were able to set up another line and draw blood.
He had a horrible evening though. Who knows if it was the medication or the procedure - she was just feeling horrible. From 6 till after 9 I just kept trying to comfort her. She would listen to my singing and fall asleep on my chest, only to wake crying and distressed within minutes. Eventually her temperature went up and I decided paracetamol was probably a good idea. That helped with her pain and she had a good nights sleep. It took me a few more hours to get to sleep though as a new young patient and his little sister sat chatting to well after 11pm. I was again thankful for a bed though and could at least get good rest.

Wednesday was wonderful. Asher was able to stay up for 2 hours (previously she would not manage more than 15 minutes and she would be exhausted and sleep again). She had a good breakfast and enjoyed playing with the toys in her cot. These little blocks were a favourite as they had little bells in them that would ring when she knocked them around. I even got a small smile which was just wonderful.
On Tuesday after lunch I had managed to get a hair cut. I had left my cell number but when I got back she was awake and in a lady's arms. She had woken on her own and was happily just enjoying a cuddle - so they had not worried about calling me. It had only been 10 minutes. The lady works at the Activity Room and helps wherever she can. So after meeting Asher she went off and came back with all these lovely things for her cot. It was so nice for her to have colour around her and soft toys to play with.

That crochet blanket was given to her at the CAA ward on Sunday for her to keep. Ladies make them and donate them for the children. It was so nice for her to have something special and colourful that stayed with her as we moved from ward to ward. I could also see the improvement in Asher as she started moving around her bed before finding the right spot to nest in for her nap.
Asher's blood results showed a possible viral infection as the likely cause of the fever, but as she was doing so much better and seizure free for almost 2 days, she was able to move out of HDU in afternoon.
The nurses had waited till a room with a bed became available in the general ward (rather than a fold out chair / bed) as they wanted to make sure I could get good rest at night. I really appreciated their kindness and concern.
They did not have as many people leaving as they thought and so I had a choice of two. A window and a fold out chair, or a bed but no window. I chose the bed. I had to smile when the doctor visited and said "I see you have the cupboard room". I assured him the bed was my first choice. We can always walk to get a view. :-)
Christine came for another visit in the evening and brought me loads of lovely treats. Asher was a bit agitated and Christine had some remedies on hand so we gave her some Chamomilla which helped calm her down and she had a good sleep. I then had a wonderful visit with Christine. I had been rather emotional with our move to this ward in the afternoon. The nurses had been really encouraging though saying that often when there has been an improvement the parents then get to relax a little and you finally feel a bit of the strain you have been under. The nurse gave me a box of tissues and I had a good cry while Asher napped. Then I got a bit of a nap myself. So the timing of Christine's visit was perfect. I need to just visit with a friend. Chat about a whole lot of different things and enjoy a good laugh.

Thursday saw yet more improvements. It was Asher's first day back to normal routine even though half of her afternoon nap was on my chest. We managed short visits to the Activity room (due to most of their open hours being during her nap times) and even though there was still no sparkle in her eye, it was a huge blessing to just see her playing.

The social worker who I had been chatting with over the week had asked if the family would want to stay over at Ronald MacDonald house for a night and I knew that would just be loads of extra work for Brendon. It gave me the idea though of asking if we could at least just use their facilities for dinner. The social worker called and they said they were happy for us to come and eat our dinner there.
Right from the time they arrived it was a blessing for Asher. Just to see more faces that she knew and get that extra bit of love. Hezekiah wanted to give her a hug straight away. I never realized how much he would miss her.

After some food the children headed off to play. Again Hezekiah was the one that wanted to be with Asher and asked me to put her in the car with him.

A bit later he asked me to put Asher into a car as he wanted to push her around. What a sweet and loving big brother. And what a blessing to see her enjoying it (holding on and steering).
It was wonderful for all of us to get this time together. The hardest thing for me was hugging Brendon goodbye. I did not want to let go.
Once we got back to the room and had Asher on the potty, I noticed she had a rash starting on her abdomen and head. The nurses organized for a doctor to pop down and check her out. The rash was not a concern but she noticed that she had a very swollen lymph node in her neck as well as a red throat. So the fever from a couple of days ago finally revealed where it was coming from. Poor Asher felt horrible that evening and eventually paracetamol was the help that gave her a break from the pain so she could get some sleep. Once she was asleep she had another good nights rest which I was very thankful for every night.

One thing that did help through the earlier part of the evening (8:40pm) was her JAM (Jesus And Me) DVD that Brendon had brought from home. It gave her something enjoyable to distract her from her discomfort. And it gave me a much needed break from holding and comforting her through those times of crying.

On Friday morning she slept in again (as expected when you only go to bed after 10pm) and did seem to be feeling better although I think her throat was still sore as she was not really interested in eating. Again it was such a blessing that she got so much breast-milk in through the day. She had a good morning nap and almost laughed for me which brought me so much joy. When we visited the Activity room they said they can see the improvement every time she comes. It was lovely to see her start exploring the room and interacting more with other people.
She even laughed for me which made my heart so glad.
Another item Brendon had brought through on Thursday was her walking ring. I had sent the camera home with them and took these photos on the iPad. It's a bit bulky to carry around - so didn't get a photo of her which is a pity. She just loved walking up and down the corridors - holding her hand out to people in greeting. With most of our home carpeted she has not really been able to use the walking ring to it's full potential. She made up for it in the 24 hours use in hospital though and learnt so quickly how to get going with it.
Blood tests again after lunch. I used JAM again to keep her distracted while we took her line out and used that hole to collect some blood (they had planned to make a prick on her heel - so this was a much better option). I took this photo specifically to show Hannah what it looked like under the bandage.
One of the doctors was kind enough to let me know that if the blood results were good they would be happy for us to head home. Up till this point we really had no idea how long they wanted us to stay. She was having a change of medication on Saturday and I was not sure if they wanted to keep her until that had happened. We got blood results in the afternoon and were very pleased to hear that her white cell count had improved (although still low) so we could head home.
Brendon had already gotten dinner planned (I was thankful there were so many meals in the freezer that he could use) so he got them all fed and headed in - leaving the children at friends on the way. It was nice for Brendon to have a quiet drive in and it was lovely for us to be able to chat on the way home. The children had a great visit which was a real blessing too.

Looking back over the week I thank and praise God for all His love, care, provision, guidance and above all peace. Sunday had started with me feeling very emotional and unsure of what we needed to do for Asher but He made it all so clear and gave me peace with each decision.
There were again so many people who showed such kindness and I thank the Lord for them.
I thank the Lord that I could even have a peace about how long we would stay in hospital. Yes, I wanted to get home, but I also knew we would be there for every day that He had planned, and that was a good plan. Firstly for Asher's safety (which was shown on Sunday evening as we almost headed home) but also for any spiritual plans that God may have had for us. I was thankful for each person I got to meet and each conversation I got to have. Especially when I could talk about God's wonderful provision and guidance and give Him the glory for His goodness and faithfulness through this hard time. I thank Him for the opportunity to be a light for Him - as it is only by His grace that I could get through the week.

From my heart: An "episode" and so much learnt

This morning Ruth and I were playing with Asher on my bed. At first I was pulling her back as she crawled away as we have often done with her and she was laughing and playing so nicely. I actually found myself thinking "at least this is a way for her to have fun play without her head getting bumped as the bed is so soft". I then rolled her around the way Hezekiah used to do so much when he was a baby and she laughed with enjoyment. When she stopped laughing I looked at her and noticed that her eyes had pulled off to the left - often the first thing that happens when she has one of her small "episodes". She twists her whole body in that direction (as you can see in this photo Rachel took). Rachel had come in and we all tried to get her to look at us.

Within the first minute or two I gave her some of her primary homoeopathic remedy that I have in a lower concentration in liquid to use during an episode or seizure (just 2 or 3 drops is a dose - so again - not putting anything into her mouth that she could choke on). It seemed to help as the pulling to the side eased up. She got a dose almost every minute or so for the first 5 minutes and it did seem to help lessen the severity of the episode. She went from pulling so much to the side to having her head forward and then actually moving her head to look at us. Rachel got behind me and played "peek-a-boo" to my left and we were thrilled to see Asher turn her head to her right and look at Rachel. There was no smile or sparkle in her eyes the way she would normally react - but we saw the improvement and were thankful. It lasted around 15 minutes and then she was just exhausted, being due for her morning nap anyway. So she had a good sleep in her cot and then I had a good cry.

It's strange that these episodes seem almost more traumatic for me than a grand mal seizure. Although the fact that I felt I had caused it was also a factor. I chatted to Christine later in the day (our homoeopath) and she specifically spent time talking to me about this side of things. She knows me so well and could be honest with me and tell me that I should not feel that I caused this. She reminded me that I was doing a GOOD thing by playing with Asher and I must not be fearful and so stop playing with her or start treating her differently. She sees so many parents who don't play with their children and others who treat a child differently because of wanting to "protect" them and this ends up causing more damage than good.

I was again so blessed by Christine's kindness, honesty and advice. She was a catalyst in helping me to learn so much through this experience. On a physical level I had to learn that I can not always protect my children from pain or suffering. I also need to be careful of not wanting to try and make like "safe" for them so that they won't get hurt. I learnt that sometimes we have to allow things that may potentially have a negative outcome in order for them to enjoy life to it's fullest and to really learn. On the physical side Christine put it well. We can't stop her from ever bumping her head again (that is just part of growing up and being a child). But we can help her body to learn how to deal with the bumps.

These lessons have made me think of these things on a deeper level too. Emotionally I can not protect my children from ever experiencing pain and heart ache. I can't try and keep them "safe" from suffering the hurts and trials that come with life. I must also not try and always protect them from the consequences of their actions and decisions as this is how they will have opportunities to learn and grow.

I have a very dear friend who is struggling with this very issue. When a child you love with all of your life makes choices that you know are going to cause them pain and heartache - all you want to do is protect them and keep them from that potential pain and suffering. We as parents do however need to learn to let go and allow them to learn. At each age these things will be different and the older the children get the more negative potential is out there and the more scary it gets for us as parents to let go. We have to though. We have to allow them to make those decisions and to live their lives.

May God grant us all the wisdom to know when to give our children that extra space. May He help us to trust in Him when we see our children making bad choices. May we keep praying and asking God to direct each one of our children - that they may know Him as their personal saviour and then walk in a way that is pleasing to Him.

From my heart: Another bump

This morning at 5:30 Asher had another seizure. The background to this is that around 12 hours before she had a bad bump on her head.
She just loves playing with the box of cars and trains and it is right next to the plant pot stand (an old cd rack).
The children were all in the lounge and Rachel was aware of Asher playing happily with the vehicles (as she often does) and within seconds the cd rack had fallen on her. We don't know if she pulled on the leaves and that caused it to fall or if she fell backwards and bumped it over.
What we do know is that she got a nasty bump on the top of her head (which I saw straight away as it swelled up quickly) as well as marks from more of the knock above her ear (which I only noticed today).
I chatted with our homeopath through the day and it does seem that this seizure was again a result of a bump on the head (as with her previous one 2 weeks ago). She had thought about giving Asher a new remedy that was specific to seizures after head injury and after today's seizure she got the remedy in the post to us.
The first photo I posted was Asher having a good sleep after the seizure. And to the left is a photo of her having some fun with Hannah later in the day. All the photos are from today - you can see how happy the little girl is - not at all worried about the seizure start to the day.
It did however change my plans for the day. And that was a really good reminder for me of how much we take for granted. We go about our business every day and forget about how much we should be grateful for. There are thousands of people in the world living with illness or disabilities and who have challenges with many normal day-to-day activities. It also made me think about all the parents who are caring for sick or disabled children and how many hours they are giving each day to caring for their children. My heart has softened more to those who have these daily struggles and challenges.
What a reminder of how very blessed we are.
Again I thank the Lord for keeping Asher safe through the seizure and that she recovers so quickly. I am also thankful for Rachel getting up so quickly when I called her to help get things for me (as Brendon had already left for work). My heart was racing a bit in the first minute as I tried to get everything that I might need. Once I could just sit and talk to Asher my heart settled down and the Lord gave me His peace again. It was a blessing to just lie with her for the time afterwards as she slept peacefully. God is so good.
PS: We have now moved the toy boxes to a different spot on the book shelf so that it's a bit safer for her.