Top Downs Syndrome tips and the last post..... (for now!!)

Last Blog of the month.

This is my last blog and I want to say such a huge thank you to everyone for reading the blog. My original aim was to help my friends and family to see what it is like to bring up Lani, she does have DS and it does make a difference to how we bring her up but I wanted to show how its not all so different and it defiantly is ok to have a child with DS.

Now one month on I am not only flattered how many people both known and anonymous have made such nice comments about our family (one of my fears of starting this up was to have some horrid person take the mick out of my lil girl so I am delighted that hasn’t happened) but also how many people have said its helped them to understand DS more.  I have also made a new friend with a local lady who has a child with DS as a direct result of this month long blog – how cool is that, its made a real difference, I am well chuffed. 

A few interesting blog stats from the month...

Top 5 posts

1)      DS diagnosis just 3 hours after birth                                         536

2)      The month of October is DS awareness month                         359

3)      3 Main indicators Lani had which gave a DS diagnosis              157

4)      Welcome to Holland                                                                149

5)      Why Lanis tong does not stick out                                            136

Page views at point of before this last blog is published..... 3,448 so I know we will hit over 3,500 before the day is out. 

The vast majority of people read the blog via face book and second most via google, they read it via windows then i Phone then i Pad in third place.

We Had 11 countries involved... in order ...UK, USA, France, Jersey, Russia , Germany, Canada, Denmark, Australia, Switzerland , New Zealand. Thank you so much to my international friends who must have shared to their fb or helped me spread the word xx 

Its been fun but a lot harder than I realised, on average I have spent about one and half hours per day on it so to get that back will be nice, I will every now and then update the blog on special occasions. Its Lanis birthday on the 7^th of November so I will put up some pics of that for you and of course let you know about her fits and how we get on with the EEG. 

The last thing I would like to talk about is my top tips, what I have learnt, heard, practice. 

Just like in the X factor....lol...”In no particular order”...

Use Makaton to help develop communication.

Look for the good in every situation – if you don’t you’ll go mad!!!

If you meet someone who has just had a child with DS congratulate them – its a good thing, all babies are precious.

Like on “meet the fockers” celebrate ever little achievement and be proud, for a kid with DS to achieve it would have been so hard – if a regular kid put in as much effort on things as a DS child has too than we would have a high achieving nation!!!!! (This is in my opinion).

Accept all the help you can get – people want to help and if they have the knowhow to improve your Childs life, grab it with both hands.

Apply for the benefits money you are entitled too – having a child with DS cost serious money.

Push for Physio and speech therapy.

Never forget this is your Childs childhood, make it fun, enjoy every moment, create memories.

No matter how your feeling on a low day always smile so your child never knows what pain you are feeling.

Commit to show your child how to eat nutritious / healthy and that exercise is fun (this week we have brought Lani a bike trailer so we can go out cycling with her).

Meet up with other mums, they can be a life line.

If your not happy with a diagnosis or outcome of a situation – push, push and push a little more till you get what you want, don’t accept no for an answer.

Know what battles are worth the fight and walk away from things / people that don’t make a difference.

Believe in your abilities its amazing what can be achieved if only you believe it can be done.

Make time to chill out and play.

Thank you again for your support, what a journey were on and to have you enjoy it with us is great. All the best in your life and if you ever want to contact me please do so via this blog, always happy to help xx 

Love 

Me (Livvy Gosney) Lee (my hubby) and our special little daughter Leilani AKA Lani, Lan, poppet, poo bum monkey fish lol.

Genetic Counselling and Lanis hospital appt today.

I have had quite a day today and a sleepless night so today I am going to do a very quick blog. 

This week Lee and I have been offered Genetic Counselling, this will be a quick subject because I don’t know much about it. As far as I know they do lots of tests and talk to you about your family history and then decide if Lani having Downs was a one off genetic fluke or if Lee or I carry the gene that will have caused it. They also will give you a likely hood of having another child with DS.

So this is our thinking..... Why have if it does not matter to us, before Lani was born we turned the tests down because as far as we were concerned we were blessed to have a baby and no matter if there was any issues or not we would love the child with all of our hearts.  So this takes me to this testing we are now offered... what is the point, if Lee and I choose to have another child it won’t matter if our child has issues or not so we would not test, and if one of us does carry a gene that caused Lani to have DS why would we want to know?? Its happened – deal with it – don’t look to put blame on one person its both of us that deal with it together, were a strong  unit and blame won’t help us.  

Blog diary

25th October 2012

Note from Last night. Lani didn’t sleep!! Up 4 times.....

Morning

I collected Lee form work and we headed to hospital, as soon as we arrived a student nurse asked us to go into a private room for her to take Lanis obs, she asked us about the episodes Lani has been experiencing and I explained it all and that we have to be extra vigilant because of the DS. We then waited for our Dr to come in and see us, our Dr is an amazing lady she has been with us from day one and knows Lani very well. Lani was very ill 3 months ago and was rushed into hospital, our Dr came in to assess her as she felt she was the best person to help us, like I say she is amazing. So in she comes delighted to see her but concerned about what she had been told, she explained that today we would discuss the fitting issue and also her one year check up.  Her one year check up was easy the only thing we need to do is have her thyroid checked again as it was a little up last time so we will be going back to hospital in late November time to have the tests again. As for Lani having fits she watched the films and said it could be 1 of 2 things .... firstly yes it could be her having infant spasms or it may be a problem with her reflux again (I say again because she had problems before where she went blue twice and was taken into hospital overnight for obs – that turned out to be reflux but the initial concern was of course her heart). Because our Dr cant make a sound decision based on our footage she is going to run an EEG test on Lani in the next few weeks to check it out.

So do I feel happy??? Yes and no... yes because I trust in our Dr and know if she was worried Lani would have been kept in, no because its left open and we just don’t know still but a huge part of me thinks hopes that it is the reflux and again this will all be associated to her hypertonia (low muscle tone).

Afternoon

Spent with my mate, on her sofa and drinking tea, chatting and putting the world to rights. Lovely. 

Evening

Bed.

Cause and effect how Lani understands some things but her Downs Syndrome will hinder understanding of other things.

Cause and effect how Lani understands some things but her Downs Syndrome will hinder understanding of other things. 

Cause and Effect – well we all understand that life is all about understanding cause and effect, when your a baby you learn that if you cry you get a cuddle, if you eat your hunger goes when you grow a little you learn that if you roll you get somewhere new, if you bang a toy noise happens etc etc so how does a DS kid learn?? The same I guess but there are some notable differences, it will / does take Lani longer to understand the effect of her actions. We also have to be very aware that Lani and other children with DS have a very high pain threshold and in some cases don’t feel pain. This could be a big / dangerous factor as if she puts her hand on a radiator that is on she could burn herself, I have also been told how one person I know knew a child who broke her arm and didn’t react at all, so its a real worry. We help Lani a lot to understand cause and effect, every day we play games on my phone such as balloon popping where Lani has to pop the balloon before it floats off, we also play the piano / drums on my phone and she know now to touch it and a noise will happen – Lani seems to have a good understanding of it so we are pleased and as for the lack of pain issue we are conscious to keep an eye on it but Lani did cry at her first injections so I know she has some understanding of pain. 

Blog diary

24th October 2012

Morning

Busy morning, we went to special school today which was as usual great, we sang songs, had bubbles, did some play time with treasure baskets (treasure baskets are great – today we had a wooden basket with all wooden items in such as a soft hair brush, pine cone, trinket box, cork all sorts of things which will help Lani understand the world and its all very sensory). We also played with glitter and glue.... messy lol. Lani ate toast, raisins and an orange today which  she loved, we did good buy songs and said good buy for 2 weeks.

We went around to see a friend and spent  a few hours chatting and chilling, its so important as a mum to have friends who I can chat too, my friend today has a little boy with DS so chatting with her gives me knowledge and confidence to deal with our lives. 

Afternoon

 Lani has slept... All afternoon!!!! Very strange, she likes a sleep but never slept this long. 

Evening

I hope this sleep will not mean she does not sleep tonight as with our hospital appt tomorrow we all need to sleep. 

Usual routine and a nice bath to help settle her down.

At just 11.5 months old should we have goals for our daughter who has Downs Syndrome.

At just 11.5 months old should we have goals for our daughter who has Downs Syndrome.

Yes we believe we should, we feel its even more important for Lani to be pushed (in the right direction and in the right way). Having DS means she will develop slower than other kids so we need to start early and develop her in a proactive way. A lot of the development we do is through play so Lani does not even realise she is working (apart from the daily sit-ups I make her do – she thinks they are tiresome) 

Lee and I like to have goals not only for us but also Lani, we have short term, medium term and long term goals. We believe its good to have an aim in life and something to strive towards and then celebrate once a goal is achieved. 

So what are our goals for Lani?? 

Short term...

Cruising along the furniture, pulling to stand, picking something up with a pincer grip, picking up a toy from the side of her whilst sitting, suck from a straw.

Medium term...

Say mummy, take a step on her own, acknowledge the word “NO”, hold her own feeding bottle, use a spoon to eat with, use a makaton sign.

Long term

Speak clearly, use makaton, walk, feed herself with food and drink, understand “NO” and stop what she is doing.

Blog diary

23rd October 2012

Morning

I took Lani shopping at 8am.... then went to collect a package from our sorting office which is like 100 miles away!! (a little over exaggeration lol its only about 10miles). Then off to opportunities Group, I didn’t take Lani into the sensory room today as all the kids decided to play in there so we spent time mucking about in the room with all of the toys. The ladies spent good quality time with her today and when they do I tend to back off a little so Lani can’t see me (I tend to sit behind her) I do this so she gets used to thinking I am not always there and she is ok and safe with other people. Good session today.

Afternoon

Our paediatrician’s called today and we are going in to see her on Thursday to show her the films of Lanis little turns and hopefully put our minds at rest and tell us its all ok. I have to admit I am beyond worried, I know she is only displaying some signs but she is my world. I just want this to be me being over cautious, that’s fine by me.

I have been working all afternoon and trying to keep an eye on Lani... its tuff, my work always suffers but Lani hopefully does not even notice that I am working as what seems like every two seconds I am giving her a new toy or showing her how to do something in hope I get just 2 minutes to myself. 

Evening

My Bff called and so I am feeling better for having talked to her, my friend knows me so well she is truly the best friend I have ever had. I am going now to put Lani to bed, fingers crossed she sleeps tonight.

Positivity – we get knocked down but we get up again Downs Syndrome is never going to get us down.

Positivity – we get knocked down but we get up again Downs Syndrome is never going to get us down.

Putting the awful title aside lol it’s a subject we get asked about a lot, how do you stay so positive? What gets you down? Where does your energy come from? How do you cope? Do you have bad days because whenever I see you you’re smiling?

How do you stay so positive? We do have bad days just like everyone does, we cry, our hearts break, we worry, sometimes we I have to go to bed and just hide from the world and sometimes I just can’t be bothered to deal with anyone apart from Lee and Lani. It happens that’s just life. Even in my low moments I feel blessed to have Lani she was very much wanted and planned for, she smiles and lights up any mood I am in.  Having a PMA (positive mental attitude) is hugely important for all of our family’s health, could you imagine if I was bitter about the situation or if I was sad all the time how would that help? I look for the good in every situation no matter how hard it is to find, there has to be a silver lining.

Now I am in a situation of having a child with a disability I am so thankful that Lani has only got DS and as far as I am concerned no major health issues,  so many other people are trying to deal with so much more than I am.

What gets me down? Now this is a hard one, when I stop and think about it a few things can knock me sideways and the biggest one is seeing older people with DS struggling, like on the news last night there was a lady with DS who is having her funding cut and they interviewed her – they asked her now there was no regular help available for her how would she eat and when would she go out? Her answer was that she was not allowed to use the oven or the grill so she plans to eat microwave meals and she didn’t know how she would go out so said she planned on staying in a lot. Boom that hit me like a ton of bricks, I was in tears – is that what Lani has install for her, microwave meals and four walls to look at?? OMG that’s not living, that’s not what any mum and dad want for their child. I can only learn from seeing things like this and plan to help Lani get to a good level of independence where she can cook for herself and she can go out and she does have friends who will help her if Lee and I are gone.  That’s another big one.... When were gone... OMG this worries me, I will happily devote my Life to Lani and be there for her every need till the day I die so now why do I feel panicky that I will die, what if it happens sooner rather than later?? And I am not able to help Lani for as long as may be needed... here’s another one...bullying, I feel like it’s a virtual given that we are going to have to deal with this at some point and how we will cope who knows but I have met some vile people in my life and they have helped me to learn what these people are about and so now I feel thankful for having met them, it was all part of building my experiences to become a better mum for Lani. What if Lani gets ill, I have heard that they are more likely to get cancers – can’t go there – can’t even talk about it.

 I’m human some things just freak me out but Lee is my rock and I often have burst into tears and needed him and every time he has been there for me and I must also say I have been there for him, all the tears aren’t always mine, he is a strong man but when it comes to his kids he is the most loving, trustworthy, devoted, respectful dad and his kids will grow up to feel this in their hearts and know they are lucky just like I am to have him in our lives. So as you see Lee is a huge inspiration to me and he helps to keep my feet grounded and helps me to keep other people’s heads on there shoulders!! When I get cross with people who hinder Lani or indeed just bring unwanted grief to our home he helps me to see reason and deal with them in an appropriate way –bless him xx

Where does my energy come from? All the time Lani is awake I seem to have whatever it takes to crack on but believe me when it comes to bedtime I am always knackered and indeed whenever it comes to anything apart from Lani I don’t have much energy to deal with things, so most people only see me when I’m on it, still it’s all helped me to lose some weight lol by her birthday in a few weeks time I will have lost 3 stone since her birth.

How do you cope? Well I have too, I’m Lanis mum and if I didn’t cope she would suffer so sod that I just crack on and enjoy the challenges, relish the cuddles, dream of her saying “mummy can I come in bed with you for a cuddle” everyone with a bit of gumption copes with what they are given.

Do you ever have bad days because whenever I see you your smiling? I don’t ever have bad days, I have bad moments and sometimes bad hours but never a whole day and to be honest if I am out and about I would never show that I am struggling, stiff upper lip, put on your happy face and smile, the only people that ever need to know I’m struggling is my family and friends and those who I trust. 

Blog diary

22nd October 2012

Morning

Today Lani had her one year check up with the Health Visitor. There is no special DS one its the same for all kids. Can she sit up – yes, can she crawl – yes, can she cruise – getting there, can she pincer grip – no, can she say dada and mumma – half way there with dada (apparently they should say about 6ish words by 18months), weight – on the 50^th so this is all good. Then like usual loads of questions for her.

1)      What is the local school like for being inclusive? Do they use makaton? Have they ever had DS children before??

She rang back later today and told me they do use makaton / they have had DS kids before and we can look at free hours for her from 2yrs old. 

C

a2) Can Lani come off formula milk?

Yes she can go onto full fat milk and water / juice if she has a good diet which Lani does.

3)      Last one which is a bit of a biggie.... we have a concern that Lani may be having infant spasms (child epilepsy) because of the funny little things she has / does. So Lee and I filmed her this weekend, it tends to happen when she is eating or when I am putting her in the car. She becomes vacant, rolls her eyes and pulls funny faces, just for a few seconds and then is back in the room and all is normal again. Children with DS are more prone to epilepsy so we have been quite vigilant on the subject, me = panic lee = see the Doc and see what they say.

Our HV watched the film today and I was hoping she would say all kids do this but she didn’t she said that she thinks we need to see our paediatrician at hospital and to try and call up today and get our appointment brought forward. Our HV says she is displaying some signs but not others so it needs to be checked. So the outcome is that we just don’t know at this point, I have called for our paediatrician but not sure I explained myself properly to her secretary so I will call again tomorrow and fully explain and offer to email over the film.

Afternoon

A huge walk out in this dank weather but it was nice to get some fresh air and peace and quiet, I needed time to think about all of this so time out was just what was required.

Home for coffee and a good old film Butch Cassidy and the Sun Dance Kid.... Love a western.

Evening

Physio with me and a little speech therapy.