A Mum's Journey with Dyspraxia

All okay…

Kaden’s last surgery went well. Although it was a bit more complicated than the first, he bounced back amazingly. He has his follow up with both surgeon’s in a week.
The past few months I have been struggling… I feel so sad for Kaden and completely helpless as his Mother. I can’t fix this for him. I can help support him to communicate to others, but that’s it, there is no quick fix here.
For those of you that are parents, I am sure you can relate, we want to protect

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our children and hope they will be the best they can be… I feel an overwhelming sadness when I think about Kaden not being happy in 5, 10, 20yrs time…
But then I stop and I look at my wee buddy, (who 90% of the time has a cheeky wee grin) and realise actually he is already happy, maybe we are all already doing the right things? Maybe he will be okay?

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Complications…

Sad news…  Kaden has complications due to his first surgery!  To explain in basic terms, we have two small salivary glands in the front of our mouth.  After moving the “tubes” to drain at the back of Kaden’s mouth in the first surgery, these glands are suppose to “work out” how to drain themselves naturally.  In 5% of cases, one or both of the glands can’t work it out and get blocked, causing a ranula (cyst) under the tongue.  Kaden happens to be in that 5%…

So he now has a big lump (cyst) under his tongue and needs to have the gland removed in surgery on Thursday.  This surgery is more serious than the first, there is a risk that nerves can be damaged, which would mean Kaden will lose feeling in one side of his tongue.  Recovery is longer and he will be in more pain.

Kaden is feeling very overwhelmed and anxious about having to go back into hospital.  I think it is actually worse, being he knows what to expect.  He is feeling very angry and I am at a bit of a loss as to how I should reassure him.  Especially when I am feeling just as overwhelmed and anxious!

So out comes all the distraction tactics that I can think of!  Keeping him (and myself) busy is all I can do and hope that Thursday comes and goes fast and finally Kaden can get better…

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Feeling worried…

Kaden can’t talk… this seems like a strange thing to start with, I know.  But for some reason it has just hit me, Kaden is nearly 7 years old and he can’t talk.  I went through the “mourning” stage a few years ago, the stage when you “mourn” for the child you thought you were going to have.  At least I thought I had.  When I think back, I actually think I was just going through the motions and organizing the help that he needed at the time.

I feel like I am now truly mourning for him.  It is now very obvious to outsiders looking in that there is something wrong with him.  I am now worried about his future more than I ever have been before.  What’s going to happen to him when he goes to high school?  What is he going to do as a job?  Will he ever get married and have children of his own?  Will he ever be able to say, “Hi, my name is Kaden”…

He has had his operation.  This went really well, he was even discharged the same day.  So far we haven’t seem amazing results but the doctor did say it will be a few weeks before we do so fingers crossed.  The worst part as a parent was when they put him to sleep.  I had to hold him and he panicked, I could see the fear in his eyes, it must have been so unbelievably scary for him.

Kaden has the best grin, he is very loving and caring.  He is a lot of fun and has so much to offer others.  Thankfully at this stage of his life most of the people around him are accepting and understanding but as he gets older, life is only going to get harder for him.  I am completely lost at the moment with what more I can do to help him.  I guess a good start would be to stop worrying about him and get on with life….

 

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Surgery it is…

Kaden finally had an assessment last month with an ENT specialist about his drooling.  The specialist (Chris Thompson) has recommended Kaden have a Submandibular duct relocation.  Basically that means they will move the tubes that bring the saliva to the front of the mouth, to the back.  He will produce the same amount of saliva but it will pool at the back of the mouth not the front.  With the hopes he will find it easier to swallow.

The specialist gave me great confidence that this is the best option for Kaden.  He even spoke to Kaden directly and ask him what he thought.  Kaden doesn’t want to drool anymore and although he can’t completely understand what it means to have surgery, I know he can get through this.  So I am going to take off my over protective Mum hat and support him through this!  The surgery is booked for 4th Dec, he will be in hospital overnight and will have up to a week off school.

I will keep you posted on this one, it is scary and exciting for us all!

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Drooling…

When you say the word drooling, most of you would think “baby”… but with those of us with apraxic/dyspraxic children drooling is a massive word that is part of our day to day life.

I remember when Kaden was a baby, he dribbled more than the “average” baby, we always thought he was just teething, all the time!  As he got older, although it seemed to improve slightly, unfortunately he continued to drool excessively.  I had always hoped it would get better with time.  Kept telling myself, once he gained control over the muscles in his mouth he would get better… he is now 6 1/2yrs and we are still waiting. 

It makes me really sad for him, kids look at him funny, like he is “special” or dirty.  He has even experienced adults looking at him strangely or pointing out to me that he is “dribbling” (like I didn’t notice)!  He must hate it, his chin and neck sometimes gets red and looks sore, his top gets all wet and he must feel “different” for yet another reason (as if not being able to talk wasn’t enough to deal with).

Things we have tired… bibs, bibs and more bibs!  But eventually they get to an age where they don’t want to wear a bib so we moved on to sports head bands but around his neck.  They don’t look too bad and are very absorbent so generally one will last all day.  Downside is they aren’t cheap and you need at least 4 so you can rotate them through the washing. And of course he is wearing something “extra” that other kids don’t.

Medically speaking the only thing we have tired is Scopoderm Patches.  They are a “travel sickness” patch with the main side effect, “dry mouth”.  They are a small patch that you stick to the skin behind your ear.  Kaden hated it!  His skin reacted to the patch and he was consistently playing with it.  And with the dose we tried, it didn’t seem to help enough anyway.  http://www.netdoctor.co.uk/digestive-health/medicines/scopoderm-tts.html

A while ago I discussed the drooling with Kaden’s pediatrician, he had suggested trying the Scopoderm but other than that the next step would be to think about surgery.  This is something I have been seriously considering as Kaden gets older.  But is a massive decision.  I don’t know much about what is involved in the surgery yet but have asked his pediatrician to refer Kaden to an ENT (Ear Nose Throat) specialist so we can find out more details on what is involved.  I have found one website that details the different surgeries for drooling, which has at least given us ideas on what to ask and what we don’t want.  http://emedicine.medscape.com/article/879271-overview

I will keep updating about this one, it is very scary to think of Kaden having surgery but if it is the only answer then what else can we do.  I don’t want him to have anything else to deal with in the “social” word.  He is going to battle enough with the lack of speech, if we can do something to help any part of his disability, shouldn’t we do it?

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