Hope has been on top form the last few days. She's even more of a joy! The seizures *touch wood* are almost non existent (just 4 yesterday, none the day before and none yet today). And she's really coming along.
I was looking after my lil niece on Wednesday, and with it being half term felt I needed to get them all out of the house for the day (for my sanity). So we went to 'jolly roger's (soft play centre). I didn't for a second think Hope would care where we were or enjoy this new place. I was wrong! We all went on the bouncy castle, and Hope absolutely loved it. She was shouting her head off and making her funny woof laughs. Then.......................... She lifted her left arm...... Turned into me......and did a huge smile......she HUGGED me! My heart felt like it could burst! Then she just kept doing it again and again and she was very pleased with herself. And this was not my imagination ; I have witnesses!
Later, max insisted on carting her about;under tunnels, up things, down slides.... I could see people looking. I think they probably along the lines of 'omg that terrible mother is letting that little boy drag that little baby all over the place' because Hope looks a lot younger than she is. Anyway, I'm well past caring what other people think.
That same day, we had a fiasco with boots losing the Honkey meds :0( which led to trying every pharmacy in Swindon and beyond to try and get her epilespy drugs, and then calling the childrens' unit who said to bring her in. They were going to admit her (because she is soooo dependant on these drugs) but fortunately someone was smart enough to track down a stronger adult tablet of her meds which I was then able to dilute. Phew! In bed that same night, she showed me that the hug session earlier was not a one off :0)
Thursday we went to Koalas. Jordan and max came. They had a great time making and playing with playdough. I think it also did them good to see that Hope isn't the only disabled child. Hope's playworkerd were impressed with her alertness and smiles (she usually sleeps during these sessions). We also had an appointment to see Hope's visual impairment teacher. She's a really lovely lady! She hadn't seen Hope for 3 months and said she could see a massive improvment ;0) hope does Now look in the direction of sound, and sometimes looks at things, especially lights when she's in the dark. Hope is just begining to be able to find lights when they are moved (though she's not able to 'track').
Hope also showed that her head control is improving. She can briefly raise her head whilst laid on her tummy!
Last night.... I'm still in shock about it to be honest... She slept through the night!!!!!! At best, Hope has only ever slept 3-4 hours. Many nights she wakes hourly. But last night she went 8 hours! I woke a couple of times to check on her, and this morning I was worried there was something wrong. I'm sure it's a fluke. I hope it's the start of things to come. But I won't hold my breath!
These may seem like teensy achievements. I know in contrast to the norm, they are... But she's not the norm.... She's extra special, and I'm so very proud of her!
I'll leave you with a poem emailed to me by a lovely friend :
A handicapped child has a special life, But with lots of hard work, And plenty of strife. She may not walk or talk or play, In her own world she's locked away. These children are sent from heaven above, They are angels on Earth for us to love. Their time on earth may only be short, But there's lessons from them we value being taught!
Don't turn your back or walk away, 'look at that poor child' I hear you say. 'she is not poor!' I want to yell, She's rich in love and doing well. This poem comes from my heart, This child has made my heart tear apart, But her smiling face, I just have to picture... A precious daughter, who makes lives so much richer!!!!!
I can't quite believe it; at dinner time today, Hope let out a big shout and I caught sight of 2 lil teeth. I put my fingers in to check, and sure enough... 2 tiny, but perfect lil teeth broken right through!
Bless her, she seems to have done it fairly effortlessly; no crying, fever, dribbling etc. It might help that she's been rather knocked out the past 2 days because I had to increase her meds again.
She's been on top form again today. Very noisy. She even seems to be aware of her hands today; she seemed to be thinking about grabbing her mobile, and she yanked my hair earlier and has been putting her fists in her mouth (not surprisingly on the latter).
It's slightly bittersweet .... It means she's growing up... Well her body is.... It also may mean I need to stop breastfeeding. I fed max till he was over a year old. But that's cause he was able to learn quickly not to bite me.I'm not sure if hope will be capable of that. Touch wood it's not going too badly so far. Just once!
Jordan and Max are on half term now. We've had a lovely day of Lego, knitting pudsey bear, and making jelly and angel delight. I love having them home. I've managed to rearrange a couple of Hope's appointments. Though there are still a couple, I didn't want their holidays to be dominated by hospital appointments.
I spoke to the occupational therapist about Hope's highchair yesterday. She's gonna come out and have a look at her in it, and bring along a 'special' one too to see how she gets on. At the end of the day, I've got to do what's best for Hope.
I had bought a pretty pink, but also pretty standard highchair for Hope. It was no good. We tried it once, and because it was just an upright seat with no recline and only a 3 point harness, she basically just slithered down in it. I guess I Hoped it would be ok one day. In the time being, I've just had her on my lap for her feeding times.
Hope had physio on Thursday (which she slept through). I had a conversation with her occupational therapist about the situation and enquired what might be available.
This morning, I had a note from her therapist along with a catalogue with 'special' highchairs we could have. I suppose they aren't too awful, but they are rather heavy duty looking. Like her 'special' chair.
So we were in tesco's today, and they had the lovely fisher price rainforest highchair half price. We bought it. It's the dogs' dangly bits as far as highchairs go; 5 position recline, 5 point harness, 7 heights etc. Plus it looks nice! Hope did much better in it than her pink highchair. Guess I'll sell that one.
I'm still in 2 minds about whether this is a wise purchase... Or whether I'm just delaying the inevitable. Ie; having 'special' equipment. Hope probably would be better in one of those highchairs. As you can see, she's still a bit of a wonky honky (her head is inclined to go to the left). Clearly she found it comfy enough.. After her marmite sandwich, pear and yogurt, she fell fast asleep :0)
Sorry for lack of updates, but it's kinda been a case of no news=good news. It's been fairly uneventful apart from still chasing rainbows.... That is trying to control these blooming seizures again :0(
This time 2 years ago I was excited about the next day. It was our 20 week scan with Sam. I couldn't wait to find out whether we were having a boy or girl, but hoped secretly for a boy. I was so naive. It never crossed my mind there could be something so wrong. On the 8th of October 07, we found out we were having a boy. But that his chances of surviving were less than 50%. we named him Sam which means 'against the odds' and 'God has heard'. We drove away from the hospital and Leona lewis' new release 'bleeding love' played on the car radio. Sam's song. We had it at his funeral. On the 9th of October we were at the john radcliffe hospital for the first time. The first of many! On this day we were told Sam's chance of survival was about 30%. I had an amniocentesis . Sam's chances went down to 5% later. We fought. He fought. For 16 hours. My lil soldier. I miss him every second of the day :0(
On the 8th October 08, we found ourselves at the all too familiar Oxford hospital. Our baby girl, who just weeks before had been discharged from this hospital with an all clear had been referred back here because of enlarged ventricles. Another amniocentesis.
This year, we have declined the john radcliffe's invitation for the 8th and 9th of October. This was when they were going to admit her for the biopsies. Spooky hey?
Well, get this... Max who plays football all over the country now... Has an away match this weekend. Any guesses where? Oxford! Of course :0$
Hope's ear infection seems to have cleared up. We have been blessed with a few days of bliss. A happy, smiley noisy beautiful alert little girl. Today hasn't been as good. Hope hasn't been as happy and has had some nasty seizures. One so bad, packed her bag for the hospital, whilst considering dialling for an ambulance. After 45 minutes it passed. But she's had some more nasty ones so I've upped her meds this evening. She's now on 100mg per day of vigabatrin.
Tomorrow we have a busy one! That's an understatement! We are watching Max's assembly at 9, a check up on Hope's ear at 10. KoalAs at 12-2:30. Max has training from 4:30-7:30. Hopefully I won't get a chance to think too much about the 8th October. Hopefully we will avoid the john Radcliffe. Well, all hospitals for that matter.
So, that's 2 years of our run of not such good luck. Hopefully things will start working out for us?
I wonder how Many other 8 month olds have been to the cinema 4 times! Today Hope went to see Fame! She was so excited that she woke at 4am and didn't go back to sleep till 9. Mind you, this was a good nights' sleep for us both 11:30-4:30: a whole 5 hours stretch which is pretty amazing compared to most nights when she wakes every hour. This morning Honko clearly felt well rested because she was sooooo alert and playful. She was really paying attention to her light up toys (it was still dark, though we saw it get lighter). She was also using her hands a lot; Grabbing onto things and touching me. Not sure how intentional these actions were, but definitely a step in the right direction.
The antibiotics have kicked in, and she no longer has a leaky eaky. She must have been feeling rotten, and now much better. It's so good to have her back to her happy self. Today she's been happier than she's been in weeks. She hasn't even cried all day!
Hope dressed appropriately for today's film: Leg warmers! (see photo). As always Hope was beautifully behaved. I think she really enjoys the cinema. It must be the dark, with the light of the big screen and all the noise. Oh and maybe the milkybar buttons she had today. As usual she let out a few excited shouts, but no crying.
Today Hope tried a new food. Avacodo. Of course she ate it all up. I am yet to come across a food she dislikes *touch wood*. she also had some sweet potato (one of her favourites), followed by a milky bar dessert :0) mmmmm.
Today I have enjoyed my honkiplops soooo much. We just had a bath, she's just having a feed, and we're all gonna watch Xfactor. Sometimes it feels like I have it all ...
Did I mention that I took Hope to the out of hours surgery on Saturday? She had a high temperature despite calpol, and I suspected an ear infection because she seemed to be rubbing her ear. Anyway, the doctor checked her over and said he didn't think she had any infection, but probably a virus.
I've been concerned the past few days because hope has been VERY sleepy (which is not like her at all), and she hasn't been very alert or noisy or smiley. I was beggining to wonder if this was the onset of her progressive disease.
This evening I had her on her playmat, all of a sudden I noticed a pool of fluid on the mat, coming from her ear. Omg, I paniced. Brain fluid? I rang the doctor immediately, who said to bring her straight in. She has a very bad ear infection (thankfully). He said it was so bad, he couldn't even see in her ear because of all the 'gunk'. I did question him that it wasn't something related to her other many issues, but he was certain it's a nasty infection. Hope is now on amoxicillin. He wants to see her again in a week. Poor Plonkey. No wonder she hasn't been herself. Hopefully she will be again very soon.
Today we went back to Koalas. Though last time I went and thought it wasn't for us, I wanted to give it a chance. I'm glad we did. Even though H pretty much slept through it, I spoke to a couple of the mums today and they were really nice.
We also had a meeting today with the lady who runs the centre. Hope is now on the waiting list for portage (a special needs teacher will come and see her at home once a week to work on things). I have another meeting with this lady next week about claiming disability living allowance. I've been reluctant to claim, partially denial, and partially because I see my role as hope's mum isn't one that I need to get paid for. However, as was pointed out to me, I am doing more for hope than one would normally.
To say that Hope was a much wanted baby would be an understatement. Longed for, dreamed of and needed would be closer to the truth. Her big brother Sam died on Christmas day 07, leaving her Mummy, Daddy, big sister- Jordan, and big brother Max sad beyond words. Four months after lil Sam's death, and we were blessed with another pregnancy. Surely everything would be ok this time around? Sam had died of a diapramatic hernia, so knowing the increased odds of having another baby with CDH, we waited before breaking the news to Jordan and Max. At 13 weeks gestation, we were given the all clear and told the baby was a boy. So why was I dreaming about a little girl called Hope? We broke the news to an excited Jordan and Max. This is when the growing fetus was named 'Honk' (will explain this at some point). After 2 weeks of delight our bubble was burst. There was something wrong. Here began our rollercoaster. Baby Hope was diagnosed prenatally with cerebellum hypoplasia and ventriculomegaly. We were advised to...I can't even type it, but obviously we didn't. Fot the first 3 months Hope appeared to be 'normal' - against the odds, but as time went on, it is becoming clear that all may not be as well as it could be. Hope is now globally delayed, and has recently been diagnosed with epilepsy. Did we ask for a special child? No, but we have been blessed with one. Would we turn back time? No. Hope has bought light where there was dark; smiles where there were tears. I'm sure we will learn more from her than we will ever teach her. Who knows what the future holds for Hope. But I swear, I will always do the best by her and she will know love! Update: Hope has recently been diagnosed with a mitochondrial disorder (high lactic acidosis). Due to the fact that any findings will not provide cures or even treatments we have declined further investigations (skin and muscle biopsies seem too much ).
I am happily married to Chris. I am Mummy to 4 beautiful children, but my beautiful 3rd baby is in heaven.
I am in my 5th year of a BA degree in Childhood and youth Studies. I enjoy my children, reading, studying, blogging, facebook, my friends, and if i get a spare moment, my newest hobby is knitting pretty little things for my smallest princess.