Twins – my life upside downs – celebrate good times!

Today has been a great day and I wanted to share it with you – seeing as you’ve had to read my low times, I thought I would give you some ‘good’ news from the Grover camp!

Jack had his Occupational Therapy (OT) assessment today. Yes, after me having to write and push to get him to be assessed, following their decision to not support Jack, we got seen today.

We went into the room and Jack was his usual inquisitive self, checking the room out as well as the therapist who was assessing him. She gave him some toys to play with and he played whilst we chatted.

I explained how Jack was not getting any support now, bar from Digbies (which we pay for and is amazing!), as his Portage support worker had left and not been replaced. We (Richard was at the appointment too) went on to explain how Jack had responded so well to the sessions with Laura, Portage, and we had seen a marked difference in him following a couple of sessions – so what could he achieve with even more focussed support. With the best will in the world, Richard and I are not experts with kids, let alone a child with additional needs, and we need support and guidance to help Jack realise his full potential.

The therapist told us how well she thought Jack was getting on and how impressed she was with him. Panic set in, I immediately thought this was setting us up to say that she couldn’t give us or Jack any support. How wrong I was…

We have come away from the appointment extremely happy parents – she is going to go into Jack’s nursery and see him in action there and give them ideas and help in how to best support him; with equipment (chair etc.) and how to encourage him during play. And, she is going to see Jack every 4 weeks to assess his progress and give us goals and things to work on! We couldn’t be happier and to be perfectly honest, very relieved at the outcome. I was having visions of writing long letters and having serious phone conversations to push this further, if we had been declined support again – but I don’t have to do that and Jack will get what he deserves!

I suppose the point I am trying to make with this post, is that if you don’t ask you don’t get. I would encourage anyone who feels their child needs some additional support at any stage of their little lives, don’t stop, keep pushing, keep asking – of course I am not saying be rude or unsympathetic to why you may not get a ‘yes’ straight away – but to not take no for an answer. With Jack we knew from birth that he would need help and support – and that still took us 2 years to actually discover when and what that should be – it is not easy when you have a little one who needs additional help, whatever level that may be, but trust your instincts and go with them. We all want the best for our kids, and we will do exactly the same for Jessica should she ever need anything.

Tonight we have two very happy parents in Horsham – one of which is drinking wine to celebrate, can’t guess who that is…

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Twins – my life upside downs – me, crying, in Horsham town…

Well, I don’t cry often but last week I was reduced to tears in the middle of Horsham town centre, pushing the twins around, post soft play adventures.

Why, you ask? I shall tell you…

A few weeks ago I wrote about how Jack had been refused Occupational Therapy (OT), the reason for this is that he has ‘no functional issues’. We were notified of this decision in writing and the letter stated that the ‘referral criteria’ was enclosed with the correspondence however this had been omitted and no enclosure was provided. The day we got the letter Richard and I sat down and wrote an email to Jack’s Paediatrician expressing our concern at the refusal – in a nut shell we reminded them of the fact that Jack has DS and that he will need some support at some time and surely the sooner this help was provided, the better and easier it would be. We didn’t understand why they had refused to support him and we wanted to have an explanation of how they had arrived at their decision. Our email was sent on the 2nd October – so as I hadn’t heard anything back, 11 days later, I sent a chaser email asking if anyone was going to deal with our concerns. That afternoon was when Jack’s Paediatrician called me – she explained to me that someone from OT should have called me to talk through the criteria  required to receive OT, but nobody had called me. She went on to say that it was probably down to the fact that Jack is doing ok, he walks, he can feed himself (although drops quite a lot still) and signs two words. Now, this is when I got upset… How and why does that mean he doesn’t ‘qualify’ for support?! He has DS, he is behind his ‘mainstream’ peers (and I can give direct comparison and did – I can have a conversation with Jessica but Jack can’t even say Mummy yet!). And, if he is doing well shouldn’t that be built on so that he can realise his full potential? Also, he and Jessica will be starting nursery soon and he needs to be supported there, to sit in a seat properly (he will do that, but he slips down easily, Jessica doesn’t), this will then help him when drawing, having a snack with his fellow nursery goers – and much more! I also let her know we had received a letter from Speech & Language (SALT) to say Jack was on an 18 week (yes, 18 weeks!) waiting list to be assessed!

Upon me explaining this, and she could hear I was getting upset (I couldn’t help myself, I think it is frustration, anger and determination all pouring out of me), she promised she would try and get a meeting with OT, SALT, Jack’s physio and ourselves arranged in the diary so that we could discuss him and his development and agree how to move forward. This made me feel a bit better, but I was still very upset and ashamed to say I ended up ringing Richard at work to offload. All the time Jessica was singing songs to me! ha ha!

I have felt quite down over the weekend just gone about this. It feels to me like I have to fight for everything… Even getting the twins was a huge battle, spending 6 years firstly trying to get approved to have IVF, then having a miscarriage, then being refused funding for further treatment as I turned 40, then a failed IVF attempt, then getting pregnant and having a pretty rough pregnancy from the off – quite frankly I felt we deserved a bit of a break and for something to run smoothly for a change. But, life is not like that is it. And my motto has always been ‘if you don’t ask you don’t get’ – so I pulled up my big fat pants (I really need to sort out losing this baby weight, they’re 2 now!) and decided that I would not stop fighting until Jack gets what he needs to help him through life!

A new week and we are on the up! I had a call from OT this week and after a lengthy conversation they have agreed to assess Jack, hopefully this will be in November as they have had a cancellation, just waiting to find out. ALSO, Jacks Paediatrician is working on getting a meeting with OT, SALT, Physio and us sooner rather than later – I can see light and we are so heading towards it! Watch this space!

Twins – my life upside downs – 2 years ago today…

The 9th October 2015, what a night that was for me…

It was my third night in East Surrey Hospital, I had been waiting for my twins to be delivered there but they had no room in the Special Care Baby Unit (SCBU) so I was sat waiting to be transferred down to Brighton Hospital.

I was 35 weeks and 2 days pregnant and struggling BIG time. I was about the size of a whale, which is quite some feat considering I am 5ft 1inc (and a half) and usually a size 8/10! I had severe oedema, was being monitored for pre-eclampsia and twin 2 had polyhyramnios (excessive fluid around him) and as a result I couldn’t really feel him moving and he was putting a lot of pressure on twin 1, our little girl. So all in all it was getting all too much for me. East Surrey were amazing and had giving me a set of floatron boots (as I was so swollen I couldn’t wear the standard compression socks, even the mens large sized ones were way too tight – so that gives you an idea of how swollen I was), they had also organised for me to have a special mattress, as I was in danger of getting bed sores as I struggled to get up and move around – going to the toilet was a proper mission, taking me a minimum of 5 minutes to manoeuvre myself out of bed and then a long time to walk to the toilet as I couldn’t stand upright for long. Quite frankly if they didn’t get the babies out soon I was in danger of being bedridden!

At midnight I was finally transferred down to Brighton. It was my second time in an ambulance (first time was rather embarrassing – don’t say a word Lisa & Holly!), and if you have ever had a trip in an ambulance you will know how uncomfortable it was for me. I was rolling around on the bed, as we bumped up and down. We did have a laugh though, two ambulance crew, a midwife and I – and we challenged the driver to beat her record time of getting from East Surrey to Brighton, she did not disappoint! I had to tell them to stop making me laugh too much though, it hurt to laugh!

I was settled into a private room, given another shot of steroids and instructed to be nil by mouth until I had the babies delivered. I am not going to lie, I was getting a bit scared, and very excited, by it all now – knowing I would be cut open in the morning and I would finally get to meet my little miracles. I had waited 6 long years for this moment… and it was a moment that has changed my life, for the better.

Twins – my life upside downs – a busy few weeks

The past few weeks have whizzed by and we seem to have crammed lots of great stuff in!

Jack started Digbies three weeks ago, we’ve had a couple of weeks of getting to know the team, other children and parents and today was the first group where we had a therapy session. Digbies is a service, that we pay a contribution towards, provided by PSDS and will give Jack and us support in three areas; occupational therapy, speech and language and social skills. The first week Jack and I went solo and Jessica spent the day with Richard. To make up for Jessica being dragged from pillar to post, Richard decided that weekend to take her on her first trip on a train, they headed to Gatwick airport to see some planes. Had lunch at Giraffe and went up and down on the monorail – with Jessica shouting “happy holidays” to everyone!

Jack also started his Portage support sessions too! This is where the lovely Laura comes to our house and he is learning by play with her. He has already come on in leaps and bounds – he now signs ‘more’ and ‘thank you’ on a constant basis.

The second week at Digbies; Richard took Jack and Jessica spent the day with her Nanny. It was more getting to know Jack sessions and Richard getting to know Digbies. Whilst I was mostly drinking alcohol with my friends, getting on a plane and jetted off to Benidorm! Three whole nights away… You may judge me for leaving my children or you may well be envious of me – it HAD to be done! This is going to be an annual theme (we went to Benners last year too), however, we all agreed that we have done Benners now and need to go somewhere with more culture, Magaluf was discussed – ha ha ha! On the coach ride back to the airport, on our way home, I was listening to some ladies discussing their children and starting senior school. One of the women was saying how she felt that her daughter doesn’t fit in and that she wasn’t really what would be termed as a ‘mainstream’ student. But that she had told her daughter that being different is good. That not everyone needs to be the same and how the world is made up of people being different. This made me smile, as I thought that I will use that with Jack as he grows up and so that Jessica knows it is great that we have Jack (who will never be classed as ‘mainstream’) and that not everyone, disability or no disability, fits in immediately – but there is a place for everyone in this world.

On his third week at Digbies we took Jessica along with Jack and I. Well, and I know I am biased beyond belief, but she was so so good! Played with all the children and didn’t kick up any fuss. Ate her lunch at the table with Jack and the other children. She came into Jack’s OT therapy session and she ‘helped’ Jack, so cute! Jack did really well with his session and we have been given some things to work on with him – which are hilarious as he just laughs when we do them! After Digbies we went to see the Morley’s and ended up going out for dinner – it was so nice to have all the kids round the table.

In-between all of the above Jack has his next hearing test. Now, I have never taken him to have this test, largely because I know that I would laugh, (my sister and I had to have hearing tests when growing up and I remember vividly laughing, with my mother, at Claire having such a test!). But this time Richard couldn’t take him so it was down to me. Jack was awesome and true to form I giggled through it! But the outcome is that his hearing is good and he doesn’t have to have another test for 6 months! Boom!

Also, Team Joggers for Jack completed the respective 10k, half marathon and 1 mile kids runs – we have raised over £1600 for PSDS (the Down Syndrome charity we belong to, who provide Digbies). So proud of the whole team. We’ve signed up a couple of the Banners girls to do 10k next year (it’s in writing now, Hels & Zo! Ha ha ha) and Lisa and I committed to attempting a half marathon next time round – eeekkk! Watch this space for how big Joggers for Jack becomes in 2018!

So, all was going well in Team Grover world, until today… back in August when Jack had his last developmental check, I asked that he get referred for Occupational Therapy and Speech and Language Therapy too. We got a letter informing us that Jack has ‘no functional issues’ and therefore does not fulfil OT referral criteria! I can’t believe it – he has Down Syndrome and is behind where the average 2 year old is developmentally, therefore why does he not fulfil the criteria to get support?! Surely, with early intervention and support, Jack can become the best he can be? Then another blow… Portage support will stop after half-term and we don’t know when we will get it back! I am feeling so deflated by these set backs, but determined to push to get the support Jack needs and deserves!

Pics to end on a high!

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Twins – my life upside downs – what could have been…

My social media feeds (god I sound like a social media queen eh?!) are filled with pictures of gorgeous children, either going back to school, starting ‘big school’, starting school for the very first time or starting pre-school/nursery. It is so lovely to see all the kids growing up and moving on to new chapters in their lives – little do they know how quickly it all goes and that they should make the most of every day. Instead, like I was at school, they will be wishing the days and years away until they can be classed as adults! And, as we all know, thats nowhere near as much fun as being at school with all your mates!

Now I know what I am going to say is not really talked about and I by no means mean any offence or upset to anyone – but I am sure I am not alone in how I am feeling and if by writing this down it helps someone who reads it then thats a win for me! I started this blog to share my experience and how I became a mum to my two little miracles and I wanted to make sure I shared all of what happened. It wasn’t an easy ride and along the way I lost a baby. The baby died inside me – because I was taking progesterone to trick my body into thinking I was pregnant (as this pregnancy was following my first round of IVF) I didn’t miscarry it. I was given the option to stop the drugs and let the baby ‘bleed’ out but I couldn’t bear the thought of doing that, so I had an operation to remove it. Seeing all these school pictures did make me realise that the little one I lost would have been starting school this year and I have to admit it made me feel a bit sad. I know that my little one was only 9 weeks inside me, but I don’t think that should mean that I shouldn’t feel sad that he/she didn’t make it into this world or that I won’t see him/her starting school, does it? Don’t get me wrong, I am not crying or getting really upset at seeing pictures or feeling envious or anything like that, it just made me feel a bit sad. And, I am definitely one of the lucky people in this world – I have my rainbow twins, who bring me lots of joy, happiness, laughter and, I will admit, frustration. Would they be here if I my first baby had survived, I just don’t know – what I do know is that they are here and I am very grateful for the both of them. And when they come to go to pre-school and school, I too will be posting pictures of them, very proudly.

I know some people will question why I think I am lucky, I have one child who is not considered perfect in this world as he has Down Syndrome – but believe you me, I am the luckiest person I know. Jessica and Jack are amazing small people and Jack, although will bring different challenges for us as a family, is doing just great! So, yes, I am very lucky!

I wrote this blog as I just wanted to let anyone else who is feeling a bit low or a lot low about their little one not being here – it is ok to feel like that, it is ok to talk about it and it is ok to pick yourself up and carry on. And if you have not had your rainbow baby/s yet – I am sending you all the positive vibes I can that it happens very soon for you.

Twins – my life upside downs – more ice cream?

 

We’ve had a busy few weeks, full of seeing friends, play dates, soft play, Jack and I having a haircut (check out my handsome boy in the pic below) and ice creams (lots of ice creams!). I have been trying my hardest to get fit for the upcoming Run Reigate 10K, eating lots of ice creams hasn’t really helped! Two weeks on Sunday team Joggers for Jack will be doing our best on the various distances we are running. I just hope I can beat my time from last year… Some of the other stuff we’ve had to do are below.

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We think that Jack has started to say a few words now, Dada, bye, dink (drink) and bisc (biscuit), which is brilliant! I say we think, as we are not 100% sure that is what he is saying. My Mum is convinced he is saying these words too, so at least it is not just us wishing it to be that he is. He has also started to sign a few words in Makaton too – more and thank you being his favoured ones. We need to harness this start of communication with him as this will make life better for all of us and he will be able to play better with Jessica and his little friends. He is still in his destructive phase and it is hard to get him to understand he shouldn’t throw every toy he picks up! Even Jessica has started to tell him “no throwing, Jack!” – he still chooses to not hear or understand us! Tell him his dinner is ready or ask if he wants a biscuit and he responds, rapidly! But anything we say that resembles a “no, Jack” he conveniently doesn’t get it. He starts Digbies (speech & language therapy, occupational therapy and social skills – provided by PSDS, the charity we belong to and the one that team Joggers for Jack are raising money for), in a few weeks and next week will be the start of Portage support too, so hopefully we can start to work with him on his communication and listening skills! I guess that although we have done quite a bit of research n what needs to be done, it is always better when someone shows and demonstrates exactly the things that we can do to help him. If he’s anything like his sister he will be impossible to keep quiet once he gets going! Will keep you posted on his progress…

One day after writing the above and Jack has decided that he won’t throw toys anymore but brings them to me one by one! This certainly progress but Jack, do you have to bring me EVERY toy and book that you have?!?! I just hope I am not jinxing this development by putting it in writing to you all!

We had a minor set back last night (Wednesday 30th August). After a long stint of Jack being well he had to be whisked to hospital – he was fast asleep and started to choke and couldn’t catch his breath. We scooped him up and he was breathing but it was clearly hard work for him. It was almost like he was winded in some way. He then let out this barking cough and it sounded very much like croup to us – that barking sound and when he took a deep breath it sounded very ‘raw’. I rang the child assessment unit at East Surrey, as Jack has a passport which means we can go straight to them rather than through the doctor or A&E. Unfortunately they were closing for the night and said they couldn’t admit him but to take him to A&E to be checked – given his history of croup, bronchiolitis and general breathing issues they wanted to see him sooner rather than later. Richard took him whilst I stayed at home with a sleeping Jessica. He was given steroids and they had to wait to see how he reacted before they could let him come home. He reacted well and my boys came home in the early hours of this morning, with another dose of steriods for Jack to have. What Richard didn’t tell me, ’til this morning, was that the doctor thought Jacks heart beat sounded irregular. As a result they put the ECG machine on him, the reading didn’t pick up well so they had to repeat it, luckily all was ok! Jack isn’t due another full heart scan until he turns 3, I am relieved nothing further will happen until then with regard to his heart! Richard said that he didn’t tell me as at the time, it was just a routine check and that therefore there was nothing to worry about. I guess it’s the same for all Mothers out there in that you just know when something is not right and I’m glad that we took the decision that we did and just take him into A&E to get checked out. Richard kept me in regular contact via text whilst at the hospital. I am just glad we have the passport and access to CAU and that they give us the support we need. Thanks to the team at ESH!

We have the dreaded 2 year check coming up soon – I am prepping Jessica as on this one she has to be able to jump. God, she’s a nightmare and I am not sure she will be able to do it! But… she can sing a fair few nursery rhymes now, thanks to my Mum, we regually wake up to her rendition of “how much is that doggy” or “I’m a little teapot”! Surely that will make up for the no jumping situation?!

I had a medical appointment this week, the dreaded smear test… Now, I know how important these are, around 10 years ago I had a few dodgy test results which ended up in me having two separate colposcopy procedures. This is when the ‘bad’ cells are burnt off from your cervix – believe me it is not pleasant and I ended up getting an infection after one procedure. I tell you, I think all my medical issues have been due to ‘women’s things’. But, if I hadn’t of had my smear tests I wouldn’t have known that I had those bad cells to be removed and it could have ended up far worse than having a minor procedure – make sure you are up to date on your smears, ladies! Now,  you would think that me having a smear test would be a walk in the park after all the internal scans whilst having IVF, but oh no, it is not! My cervix is slightly off centre and it takes a bit of wiggling of the contraption they use to open up your cervix to get some of the cells they need to complete the test. For any guys reading this, I can assure you that this ‘contraption’ is like some kind of torture tool from the medieval times. It bloody hurts and is not helped by the fact I get myself so wound up before and during it! Oh well, fingers and toes crossed I will get a good result and won’t have to go through that for another 3 years!

Benners (Benidorm) is fast approaching (annual trip away with the girls) where we have 3 whole nights and 3 whole days of drinking, laughter and more drinking! Richard is off work for the time that I am away and will be in charge of the kids. I’m sure he’ll be fine as he’s done it all before although I would be surprised if he stays at his Mum’s one night, just to help ease the burden. I will obviously miss them while I’m away but its nothing that a little bit of FaceTime can’t sort.

The masses of ice creams over the past few weeks and having carried twins in my body, albeit two years ago now, have put pay to me ever being in a bikini again – I am just lucky the girls don’t judge my big belly! Bring.It.On!

Last years Benners group photo!

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Twins my life upside downs – 26 weeks…

I love the Facebook memories when they come up, this morning I felt I needed to share one with you.

This time two years ago I had turned 26 weeks pregnant. I had been for a scan at East Surrey Hospital that week too (one of many I had). It was the first time meeting Dr Gandi, the Fetal Medical expert at the hospital, my Mum had come with me for this appointment (we kept rotating it between everyone, so I didn’t have to go alone and other people got to see the small ones). We didn’t really get on at first, she was busy and struggling to get her computer to work and I was uncomfortable and found lying on the couch waiting for her to scan me hard work – yes, just lying down was hard work!

Dr Gandi looked at my pink notes (the booklet you get when you are pregnant, that you are meant to take everywhere with you!), she asked me to tell her about the twins and in particular she wanted to know about twin 2 and the 1 in 8 chance  he would have Down Syndrome. I went through everything with her – she asked if I was ‘happy to continue’ with the pregnancy. Of course I was and I was going to get to 37 weeks too – was my response. She then scanned my every growing tummy. Starting with twin 1 (Jessica), all ok and she was growing nicely and had a good heartbeat. Now onto twin 2 (Jack), this took a bit longer and she was measuring lots of different angles, something I hadn’t seen before now (I was basically a sonographer at this point, with all the scans I had!). Dr Gandi then shared with me her findings. Twin 2 had a lot of extra fluid around him, and this was dangerous – the medical term for this is polyhydramnios – there were several reasons he could have this. 1, because he had Downs (but we hadn’t got this confirmed and I didn’t want or see the need to do the amniotic test that would give the answer), 2, that he had a problem with his oesophagus and would need an operation as soon as he was born, to allow him to swallow properly, or 3, that he had a problem with his tummy (it was rather large too, which is a ‘soft’ marker of Downs. She was also very concerned that I would give birth at any moment as Jack was pushing Jessica and as she was twin 1 and head down, he may well push her out early! I firmly told her that wouldn’t happen, I couldn’t give birth just yet!

I was told to rest, just sit and do nothing, not go to work or anything. I also had to have steroid injections – which would help to develop the twins lungs so that they stood a better chance should they come early. We were sent off to the antenatal ward to have the injection. Mum and I made ourselves comfortable in the waiting room – which had a few other pregnant ladies in there too. The nurse came along, checked my details and went off to get the injection. Now, I have had to inject myself a fair few times with having IVF so it doesn’t really bother me the whole injection thing. However, this needle was BIG and the dose LARGE. With no warning the nurse popped it in my arm – OH MY F’ING GAWD! it hurt like hell and when I say hurt, I mean bloody HURT! A few swear words passed my lips and my mum really told me off! When I explained the pain she was not happy that I had been given that in a room with other people in there or that I hadn’t been warned how bad it would be. The pain lasted around 10 minutes too and I had to go and have another one 24 hours later! Couldn’t wait for that!

I did go into work afterwards to explain what I had been told and they sent me home. I took my laptop and was lucky enough I could work from home too.

Ladies, if you ever have to have steroid injections – I can tell you that the pain does pass but to ask for it to be administered in your bum (I had to have another lot just before having the twins, in Brighton hospital their protocol is to put the injection in your bum – far less painful!). And if you ever have polyhydramnios, it does make you very swollen and large and is painful too, but you can get through it, promise!

Pics just because they came up in my memories today – me at 26 weeks and the twins 3D scan pic (and I didn’t have to pay for it!) at 25 + 6 weeks.