The 3 main indicators Lani had to give a Downs Syndrome diagnosis

The 3 main indicators Lani had to give a Downs Syndrome diagnosis

Lani looked like she had Downs. Now some people have said they would never know Lani has Downs Syndrome yet others have said they could see it. Lani does have almond shaped eyes “Up Slanted Palpebral Fissures” to us they are beautiful, big and blue absolutely stunning . I have selected these pics to show you what they were looking for. 

 

Lani has “Hypotonia” low muscle tone. I would have thought that all new born babies came out pretty floppy, so what on earth did “low muscle tone” mean????? Well my understanding of it when she was born was that she would find using her mussels hard. I thought it meant walking, sitting up, holding her own head etc but I could not have realised just how much of Lanis life has been affected. Lani slept like a frog lol arms out and knees flopped out to each side, as Lani has grown up she has found it very hard to sit up and play with her toys. I will go into a lot more detail about Hypotonia in another post as it is such a huge subject and huge part of Lanis life. That has turned out to be a hard pic to find.... this is Lani asleep like a frog when she was dinky. 

 

Lani has a straight crease across one of her palms “Single Palmar Crease”. This can show your child, along with the other indicators may have DS. Only 45% of DS babies have it so its not as common as it is made out to be. I have been told the crease is due to Lani holding her hand very tight throughout the pregnancy. I only have this one pic to show you, trying to get the wriggliest monkey in the whole world to stop even for a moment is tuff lol.

 

Blog diary

2^nd October 2012

Morning

Firstly a huge thank you all for reading, yesterday was launch day and we have had over 1,000 hits to the blog WOW I am shocked and delighted, please keep on reading / sharing on your facebook sites. Help me to spread the word by telling your friends its OK to have DS my little Lani proves it. 

Look at me mum.... I am holding on and loving it, I may have got you up at 6am but you still cant get out of the door for 9am can you !!!!!!!! put the camra away mum we need to go.....

 

Up off and out early again today as Lani goes to an opportunities group in the next town over from us, it runs from 9.30 – 12 and its on twice a week (Tuesdays and Thursdays) I only manage once a week. This group is for children with special needs, Lani is the youngest there and 9 other children (none of whom have DS unfortunately) all have other special needs. They have physiotherapist and speech therapists attend this group (Lani, as you will find out over the month has her own physio lady based in our hospital) any help from any professional means the world to me. I am like a sponge trying my hardest to learn to be Lani’s “in house” physio / speech / hydro / makaton teacher .... you name it and I’m trying to be it!!!!!!!! So help is always welcomed with open arms. They have lots of interactive toys and cause and effect toys and a great sensory room for Lani, I play with her and take her into the sensory room which Lani loves. Lani also played outside today and went on her first ever bike ride. I am always trying to decide if each place we go is the right  setting for Lani, trying to figure out what she gains from being there, what I gain from being there and assessing the whole situation. The Pics are of Lani in the sensory room today in her little tunnel and cuddling the bubble tube also check her out on the bike.

Afternoon

We have had a quiet afternoon spent at home playing, doing more physio and some speech therapy today. What I do with her speech is sing songs to her, she will sit on my lap and face me so she can see my face, I over express how the mouth movements work so for instance if there is an “ooooo” sound in the word I tend to stay on it a lot longer as Lani has not yet made an “ooo” shape with her mouth.  I also say words I want her to learn on different parts of her body, so the palm of her hand, her cheek, her tummy and her back. I also play raspberries and we take it in turns to blow them at each other and lastly I put yogurt on her lips and then on mine and show her how to use her toung to lick it off... she hasn’t yet managed it. All of this is used in conjunction with using as much makaton that I know.

If you have any tips to help me with Lanis speech please leave a comment J I think my little girl is behind on this, what age have your kids started babbling or saying mumma????

Evening

I have a routine locked down for the evening and when I deviate the results are a nightmare. So at 7.45 I get Lani a bottle of milk ready and a bowl of mashed banana, take it upstairs and put on her lamp and her radio. I have to tell you about the radio, you may think my theory is as barmy as Boris Johnson but I will tell you about it anyway.... So I have the radio tuned into “classic FM” so she listens to classical music every night, not too loud but nice and gently in the background. I heard years ago on TV that farmer’s play classical music to their cows and they produced better / more milk!!! Also I have heard somewhere that people who suffer from epilepsy have had their episodes reduced when they are exposed to classical music on a regular basis!!!!! So my head says it must in some way be good for the body and soul and as I have been told having DS can lead to a higher risk of epilepsy, will it help Lani not to get epilepsy????? Who knows but I am giving it a go. I deviated sorry...so I then get Lani into her bed cloths and give her the banana, milk a cuddle and pat on the back and then I read one chapter of whatever book I am reading and then her special book which is where we say goodnight to all the animals – its a great book the animals are flocked onto the page and Lani gets to stroke them as we turn each page. I then sing her the same song 3 times and by the end of the song Lani is asleep, into the cot she goes, lights off – goodnight :)

Leave me a comment on your opinions on my radio theory, am I crazy or do you get where I am coming from???????

Question of the Day

Q – Why was Lani under Blue lights in the photo in yesterdays post?

A – Lani had a bad case of Jaundice as her bilirubin levels were so high (bilirubin is a chemical we produce and  in Lani’s case make people go very yellow), and she went under top and bottom lights for 3 days. I understand this may have been because she was premature but please feel free to correct me if I am wrong as I can only go on what I have been told. 

Q – Why did Lani have tubes coming out of her in hospital?

A – Lani found brest feeding very hard, I did try my hardest but Lani needed extra help so the tube coming out of her noise was a feeding tube. DS babies can find it hard to Brest feed because of the hypertonia and there tongues but this was not the case for Lani, because Lani was prem and I didn’t go into labour my body just couldn’t understand it needed to give my little girl more milk. The other tubes were monitors for her breathing – the most stressful things ever!!! Lani kept on stop breathing and the alarm would go off every five or ten minutes day and night and I had to rub her chest and the midwives would come and check her, sleeping was tuff and one night I cried my heart out and they had to take Lani away and look after her because I was just so tired and stressed with it. They did give her back in the morning when I woke up :)