Solids! :O)

Hope is just 1 week short of being 6 months. I've managed to resist the temptation to start solids till now. It's hard to imagine that Jordan and Max started at 3 months, but that was what was recommended at the time. I suppose in the back of my mind, i've known that solids could present us with another issue. It's fairly common for special needs babies, especially those with similar issues with H, to have issues swallowing.

The original plan was to wait till she was exactly 6 months, but with the holidays coming up, and us planning on getting away next week, it may have been a tricky time to start her. So after a chat with my lovely friend Jess, who also happens to be a health visitor, I felt ready, and excited about weaning. For the past week or so, I'd been letting Honk try a few things from my finger-sweet things. She seemed to enjoy these.

So this evening, I made up one spoonful of baby rice with 10 spoonfuls of milk (as recommended on packet). It seemed to go quite thick, and I briefly considered adding more milk to make it runnier, but then just decided to give it a go. The words duck and water spring to mind! She was fantastic at it; smacking her lips, swallowing, wanting more. I fully expected her to just take a couple of mouthfuls and spit most of it out, but most of it stayed in her mouth and was swallowed effortlessly :O)

She cried when it was all gone, so I made up a bit more for her, which was also devoured!

My clever lil Honkey! Another bridge crossed! (I'll try and put the next bridge to the back of my mind-lumps are another issue all together).

I'm looking forward to getting her on all sorts of yummy things, but am planning on sticking to the rice for a week or so.

Jordan's memories

Since we're all in isolation because of the swine flu, we've been doing lots of over due tidying and sorting.



I had the kids sort through all of this year's school stuff they bought home on Friday. A lot of it will be for the recyling now, but we've chosen a few bits to put up on the kitchen wall, and l'll keep all their books.


I looked through their books with them.
I came across this in Jordan-amy's R.E book:

Remember our memories
_____________________

My memory is my baby brother Sam. I remember when my Uncle and my 2 Nannies slept over because my Mum and
Dad were in London at the hospital. Early in the morning on Christmas Day, we went to London to see Sam. When we got there it was bad news; Sam had died. I held him. That was the most I could do.

Isn't that sad? :0(
My poor kids. I wonder how this will effect them long term. Then the effect of having a special needs sister. They seem well adjusted and happy. I hope they always will be.

I said to Jordan I thought what she wrote about Sam was lovely. She said ' you know mum, I always say I have 2 brothers and 1 sister'.
'That's great Doll, you do' I said. But I'm so proud of her for that, cause I know myself that it would often be easier to say I had just 3 kids, without going into having
4 but only 3 with me. But that's my girl! She's such a strong person. I admire her, and just know she's gonna grow into a wonderful adult.

As for the swine flu.... Well, everyone here seems just fine. Max has been a little lethargic again, but as I type, Jordan and max are playing tennis on the wii.

I was contemplating stopping the tamiflu, and thinking that maybe they didn't have it afterall. But after speaking to a few other people, who have said their kids were back to their usual mischievous selves when on tamiflu, I will continue. I was also concerned that the meds may somehow affect their immunity to it if they are taking it if they don't have it, but after speaking to my lovely friend Jess (for over an hour an a half-lol. Hello jess:0). )she said it would actually give them some protection against it.

Hope slept from midnight till half 6 in her own bed again! She woke for a feed at half 6 and half 8, then we woke at 10am! The best sleep I have had in months. Possibly years!

After the big episode the other day I thought maybe she'd outgrown the meds already. But the day after (monday)she was seizure free again, then yesterday she only had 10 over 2 clusters, but what I did notice Is that one of the clusters (6)was really different. They were the kind described as 'salem salutes' where she lurched forward, as opposed to her usual 'myoclonic jerks'.

Today, she's only had 2 teensy/barely noticable myoclonic jerks. Touch wood!

Swine flu update: the calm before the storm?

I'll keep this brief cause not feeling too fantastic myself ....
Jordan and max not as bad as I expected-touch wood! Chris sent home from work because kids have it, so that's a bonus!
Hope not herself; really sleepy, not feeding much and being a bit sicky :0(

She slept really well in her bed last night. I loved it too, being face to face with her beautifulness

Love to you all xxx (non contageous kisses)

A big girl bed, and SWINE FLU!

As you can see, Hope's moses basket was getting a bit cramped. She certainly got her moneys worth out of it! So Mummy and Jordan decided it was time to build Hope's new bed today. Then Hope decided that actually she'd rather feed, so clever ol' Jordan (aged 9) built it!

Hope looks lost in, but it's beautful. We have pink giraffe bedding, and now she has room for her special toys too. But the best thing...it's a 'closer to you' so it's RIGHT next to my bed!

AND NOW FOR THE BAD NEWS! VERY BAD!

jORDAN AND MAX NOW HAVE SWINE FLU! Max has been poorly all day. This evening I had a call to say one of his classmates have been diagnosed. Max seemed to go downhill fast, so I called the doctors who went through his symptoms and then confirmed my fears. Just a couple of hours later, Jordan starting showing symptoms.

I have been SOOOOOO scared about this. It's been getting closer and closer for a couple of weeks, and I've been so worried. Worried for all of us, but especially my teensy princess.

Touch wood- she's not running a temperature of showing any signs (yet), but this could explain the unexplained seizures from yesterday. Because of Hope's vulnerability, she's being treated with tamiflu as a preventative. Though, as the nurse advised, it's probably too late for her to get off without catching it, but hopefully if it's caught early it will be less severe. :O(

I have a feeling it's gonna be a rough few days :O(

My poorly babies :O( I just want them all to be ok :O(

Chris is out now picking up the scrips (6 minutes paspt midnight)

Xxx

Evil seizure monster returns with avengence, 999 call, and ambulance trip to the hospital

Definitely spoke to soon! The evil seizure monster was obviously was just resting whilst getting more powerful. Yesterday morning, Hope had the mother of all seizures. Different to the other spasms we've become used to. The day before we'd had our first seizure free, but previously we were down to less than 10, of which were so mild, to the untrained eye they'd be unoticable.

But yesterday morning whilst having a massage, Hope's arms shot out powerfully and Hope screamed. Then again, and again...Usually her 'clusters' would come 10-20, 30 at the very worst back before we began medicating..But these weren't stopping. And Hope was distressed. She usually isn't bothered by them.

After about 15 minutes of non-stop spasms, I called the children's unit. They told me to call for an ambulance. So, Blue lights flashing, sirens blaring, an ambulance picked up my lil princess Plonkey. By the time they'd arrived, the seizure has passed, but they took her in anyway.

She was checked over; they were trying to find a reason for such a severe episode after being almost seizure free; infection, fever etc. Nothing could be determined, so Hope was kept in for the day under observation. In the evening, after not having anymore seizures during her stay, she was discharged. Phew!

A seizure free day! Miracle or coincidence?

Well, I've waited till midnight to announce This great news. I didn't want to tempt fate by saying it earlier, but yes, Hope has not had a seizure all day.
So has the power of prayer had an effect? Or was it going to happen today anyway. I mean, we were nearly there, the day before she only had 6.
Well, I think it's nicer to go for the miracle :0)
Time will tell.
So thank you God, Jesus and Ruth!

Goodnight, God bless :0)

Xxx

Beautiful friends and a kind stranger

WARNING: This is probably gonna be a long one.

Firstly, doesn't Hope look soooooo cute in her lil baby Dior outfit? It was a gift from her SANDS Auntie Kelly, Uncle Paul, G, Angel Bradley and Aaron. I think she looks absolutely adorable!

Yesterday, Hope recieved a beautiful wooden toy in the post from another of her SANDS aunties; Rachel. She has an angel Joshua and also a son called James who has special needs. Rachel has been honest and truthful with me about the experience of bringing up a special needs child, and that I appreciate. It's also great to know that I could say things to her that might shock other people, but she'd understand. Sadly Rachel and her husband and son couldn't make the christening because young James was poorly and had been in contact with the dreaded swine flu!

In the parcel was an inspirational newspaper clipping (she likes sending me these, and I like recieving them) about a special needs child. And also a beautiful card, but inside were some beautiful quotes.

Here are a few of my favourites:

"If it were not HOPE, the heart would break" Thomas Fuller

"The supreme happiness of life is the conviction that we are loved" Victor Hugo

"HOPE is the thing with feathers,

that perches in the soul,

And sings without words,

And never stops at all" Emily Dickenson

And my favourite......

"Once you choose HOPE, anything is possible" Christopher Reeve

Now what a beautiful person that is, that takes the time to find those and write them!

And then, just now, another one of Hope's SANDS aunties; Hayley, messaged me to say she'd made a header for Hope's blog. I'm so chuft, she did this new background an' all. It's perfect and just so thoughtful and kind. Hayley and I have never met, but we have a special connection; she has an angel called Nathan, and now she's expecting again...Her lil baby is nicknamed sunshine, coincidently, my angel Sam, is nicknamed sunshine. A very sad coincidence though, it that Hayley's Sunshine, has the same condition my Sunshine did- CDH. I hope with all my heart she gets to keep this special lil man! Hayley my love, I am here for you, squeezing your hand very tightly,every step of the way!

What do all the above people all have in common? Well, they all had angel babies, but goegraphically, we are spread all across the UK, yet I count them all as very special friends. I met them all through the internet- on SANDS forum. Isn't the internet a wonderful thing. Of course, I wish none of us ever needed to be members on SANDS which is of course, undoubtably the saddest forum on the internet, but I am pleased to count these people as my friends!

And now for the stranger.....

We took Jordan and Max swimming this morning. I sat with Hope in the spectator area. A lady sat next to us. Like most people do when there's a cute baby about, she was drawn and started looking at Hope and talking to me..the usual...'how cute'...'how old?' then 'Can she see?'.

'No' I replied.

Then Chris came along and told me I was sat in the wrong area, so I said goodbye to the stranger.

Walking away, I felt winded. Gutted. Upset that it was that obvious that my baby wasn't normal.

You seee, I know Hope is special, and I'm not at all embarassed about that, but to me, she is a baby first and foremost, the disability comes second. And I don't tend to highlight it to people who don't know her. I just prefer to enjoy the compliments anout how cute and pretty she is. There's no need for them to feel sorry for us, so I don't bother telling them of her difficulties. There's no need. No point. So I was sad, that it was so obvious that Hope wasn't 'normal' already (I say already, cause I knew the day would come).

Anyway, after swimming, we were waiting for Jordan and Max to come out of the changing rooms, and this stranger appeared. She'd come to find us. She said something like 'I hope you don't find this strange, but I believe that Jesus wants to heal this baby. Can I pray for her?'

Now, obviously this isn't something that happens everyday, but I sensed this lady was kind, and thought we had nothing to lose. So she placed her hand on Hope and prayed for healing.

I, of course Hope it works!

I said to the lady that I wish I had such a strong faith, then explained how the faith that I used to have has taken a real rocking these past few years.

She understood. Only time will tell I guess. But even so, she was a lovely lady. I gave her the blog address so she can keep check on Hope. She was a lovely person. So if you are reading...Thank you Ruth!

So today I feel happy. Happy that the world is full of such beautiful people!