Wednesday, December 11, 2013

From coasting to crisis and back again....

The last few months have been stretching, challenging and to be honest exhausting.

When given the diagnosis that your child has a genetic syndrome and will require extra care and will have extra needs, you unwittingly step onto a ride that you have never imagined you could handle.

It's that ride that you board with a pit in your stomach, unsure of your ability to cope while racing up and down tracks at a breakneck speed, and you know that as soon as you have that seat lock click into place on your lap, there is no going back.  You are now on.  Regardless of your lack of confidence in yourself, your jumbled thoughts of but what if I get hurt, what if I vomit on the person next to me, what if I am so traumatized by the intensity of the ups, downs and upside downs, that I don't want to experience the rest of the park after this!? Then, the ride begins, slowly at first, time to still be "thinking" far too much about what is about to happen, you want to be sick.  But then you take off so quickly that you no longer have the luxury of contemplating what's before you.  Your adrenaline kicks into high gear and you go with it - wherever the ride decides to take you!  Just when your adrenaline is at it's peak the ride begins to coast, you catch your breath and think to yourself, wow, I did it and I'm alive and I'm going to be ok!  The only problem is, as soon as you allow yourself to breath, the next loop knocks the wind right out of you and you are back in thick of the intensity and unknown.

There's a flaw in this analogy however, I have yet to meet a person who has ever remained on the roller coaster at the amusement park for life.  Yes, people may LOVE the ride and go on multiple times, but their body understands that this is a once in a while experience.  They could never build up enough tolerance to the point where they can withstand the ride for the rest of their lives.

That is the part that is dramatically different for parents with children with special needs.  We are on the ride, but it keeps going and going and going and we stay on it for life!  While on this ride, I believe in a loving God who has given us 3 amazing and unique children.  I believe he blessed us with a child with special needs to teach us His heart.  I see it as my calling in life, to raise my children regardless of their needs, according to His heart and his amazing plan!  I will do whatever is before me because I trust God's plan and love for me. His plans for me to prosper and not harm me.  So, I don't jump off the ride in fear, however, I do experience those same emotions and highs and lows as I described in the analogy of the roller coaster.

That was an incredibly LONG introduction to what I wanted to share tonight!  We were blessed with about 5 months of health for Asher from May to the end of September.  This was a record!  We enjoyed the blessings of health and the freedom it brought to our family. We remembered what being social was, attended church, summer vacations and we had a chance to sleep!  Our bodies were weary from the 3 years of on and off again medical crisis' and constant unknowns.  It felt absolutely amazing to rest during that "coasting" phase.

Asher began nursery school in September 2 mornings a week and he loves it!  It's been so wonderful to see him progress and develop while interacting with peers.  Even with sickness going through the classroom, he stayed healthy!  But at the end of September he had a Urinary Tract Infection (UTI).  We knew that he was considered high risk for UTI's since his birth (one of the side effects of malformations to do with CHARGE syndrome).  To make the story shorter, he has had 5 UTI's or 1 long one that has not cleared up and 5 courses of various antibiotics since Sept. 29!  These UTI's are affecting how much he eats and he loses weight while sick.  Growth is another serious concern and can be related to CHARGE, so we have regular follow up at the dietitian to try to help Asher gain weight and grow taller.  He is on a high fat, high calorie diet and even at that it remains an uphill battle for him to grow.

We had our regular "follow up" appointment today with Asher's paediatric urologist in London.  He has been on Asher's team of specialists since he was 3 months old.  We usually wait many hours for 3 minutes of his time.  Today, we didn't wait at all, however, we ended up with the typical 3 minute visit.

He told us he doesn't feel the UTI's were being caused by his "structural" differences and that he doesn't really have an answer other than he wonders if he is toilette training himself and holding his urine which is causing the infections.  He tells us we need to somehow get more liquid into him and potty train him.  Also he wants him back on a daily dose of antibiotics (something he was on as a baby) to prevent the UTI's.  I said but we can't get much more volume into him and he is on thickened liquid so that he doesn't aspirate.  He said do your best.  And that was that.

I called our dietitian after that to figure out if she had any suggestions.  We don't want to increase his volume of liquids at the expense of him not wanting to eat solids!  That would be complete regression at this stage.  He is very rarely hungry and it's already a struggle to get enough calories into him in a day let alone more volume!  She was very disappointed with me that we didn't really have a clear answer today, and could only come up with one suggestion.  She said "you're going to hate me for saying this, but this is why so many children with CHARGE are tube fed, because it's so hard to get enough into them.  I think the only option at this stage is to give him at least one middle of the night drink and hope he goes back to sleep."  She said he wasn't to the point yet where he needs a G-tube (tube in the stomach) but this is the challenge and balance.

I wanted to cry.  For 3 years we have known the "threat" of a tube fed child always loomed over us.  We wanted him to be 100% orally fed with the knowledge that if he needed a tube then of course we would do what was best for him.  But at 3 years old, to give him a bottle (he has not been willing to transfer to a cup and at the stage we can't do anything about that development right now - getting the liquid into him is far more important) in the middle of the night just seemed overwhelming and sad - especially when we don't always get the sleep we require now as it is because of Asher's sleep interruptions.  It felt like that time of coasting had truly changed back to "crisis management".

As I did dishes alone tonight I put on Take Heart - Hillsong United.  I closed my eyes and while tears were fighting their way out, I just sang and prayed.  I know that He is taking care of us even when we are yet again faced with the unknown.

This is an extremely long update.  Thank you for bearing with me as I got all of this out.

http://www.youtube.com/watch?v=UbkO5o7C8jc

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