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Mami To Five

Life: The good, the bad and the ugly bits!

Raising a child with an invisible illness: Ehlers Danlos Syndrome

This is LM:

teen with invisible illness

LM is your typical pre-teen. She is silly, stroppy, giggly, shouty, loving, stubborn and very silly (seriously that needs to be there twice). First impressions most people would make is that she is small for her age, very slight in build, active, happy and healthy. And yes she is all of those things, but those first impressions are where the problem lies.READ MORE »

22 Comments CATEGORIES // Kids, Kids Health TAGGED: Ehlers-Danlos Syndrome, HEDS, HMS, Hypermobility Syndrome

My Sunday Photo ~ Kinesiology Tape

Please visit my JustGiving page to sponsor our Memory Walk for Alzheimer’s 
kinesiology tape

 

For the last few weeks we have been using kinesiology tape to help LM’s Ehlers-Danlos Syndrome (hypermobility type). This condition makes her joints very loose and also screws with her proprioception (knowing where her arms and legs are without looking). Apart from looking funky it does actually stop her shoulders from dropping out of the socket.

This is about the fourth time we have applied it now and this time O decided he needed ‘yip’ on his arms too and wasn’t happy until he had some, just like his big sister!

OneDad3Girls

11 Comments CATEGORIES // Kids Health, My Sunday Photo, Toddler TAGGED: Ehlers-Danlos Syndrome, kinesiology

Word of the week 2/5/2014

I have really struggled to find a word that sums up our whole week. But one thing that all of my children have in common this week is:

WOW FEET

I know ‘You’re grasping at straws there Katie’ I hear you exclaim, but bare with me. Almost each day this week has had a foot related issue!

On Sunday E and Ff reminded me, after more than a week off school, that they needed new school shoes as theirs were broken. This involved me arriving in Asda at 3.30 with announcements blaring over the tanoy that ‘The store will be closing in 30 minutes’ if you have never had the misfortune of clothes or shoe shopping with teenage girls I envy you. I had two 13 year olds who were insisting that there must be something better somewhere else. After 20 minutes I thrust the two pairs that they were least disgusted by at them and managed escape.  O had to go out with just socks on his feet and without his little soft leather shoes on as one had disappeared.

Monday LM played football. Okay that may not be a big deal for some, but LM suffers from a connective tissue disorder called Ehlers-Danlos Syndrome-Hypermobility Type.  This means that she is extremely flexible in pretty much all of her joints making them unstable. She can literally fall and twist her ankle whilst standing still! She also suffers a lot of pain due to this condition. I won’t go into the finer details in this post as I have some planned for the future but needless to say her exploits on the football field left us with a very sore and teary girl by bedtime. We found one little shoe in the toy box.

Tuesday her legs and feet were so painful that she had to miss a day of school, I kept her dosed up well with painkillers.  Tuesday was also the day that LV came to us at bedtime complaining that his foot hurt. When I looked at his big toe the edge of his nail had cracked and the skin was red and swollen. It took me 30 minutes to clean it up and to trim some of the nail that was sticking up and catching in his socks. The last thing he needed was to rip it out when he pulled hi socks off! We thought we had found the other shoe, alas, someone had merely moved the first one so O was still shoeless.

Wednesday. Hurrah! We finally found the other shoe and O’s little toes can stay warm outside again! It was slowly being eaten by the sofa so I’m pretty lucky that I lost those keys and was looking there! LM twisted her ankle coming down the stairs which led to another bout of tears and round of painkillers. I checked the boots that she has from the hospital and found that she has bent out the stiffners again, these are supposed to help keep her ankles straight, which might explain the extra fally downness(not the scientifically accepted term) she’s been experiencing lately.

Thursday, O really is finding his feet. He’s been pulling himself up and cruising the furniture for a while but in bounce and rhyme he was actually walking whilst holding my hands, he doesn’t have the balance for just one hand but he was really trying to march around saying hello to everyone and break my back in the process. I think he’d had enough by the time we’d gone into mothers and toddlers and was happy enough crawling at lightening speed everywhere (and I mean everywhere) again.

I am writing this on Thursday night but I have big ambitions for my feet tomorrow. I plan on putting them up for a rest. Of course O will probably have something different to say about that!

Do you have one simple word that sums up your entire week? Pop on over to The Reading Residence every weekend and join in with this great linky!

The Reading Residence

12 Comments CATEGORIES // baby days, Kids, Life with twins, Uncategorized TAGGED: baby, Boots, Ehlers-Danlos Syndrome, feet, Hypermobility Syndrome, kids, teens, twins

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