A Story of Hope

Tuesday, September 2, 2014

Monday, September 1, 2014

Doctor Day

I'm not sure what happened last week, but I am way behind on updates!

Way back on August 21 we had a craniotomy facial day at Children's Hospital. When I say "day" I am not exaggerating. We arrived at 7:30am, Emma and I. We headed straight into Ear, Nose &Throat, for a follow-up from 2 months ago.

When we went back in June Emma had some fluid in her ear, so the doctor wanted us back in 2 months to determine if we needed to put more tubes in. Thankfully, the fluid drained by itself, and Emma was discharged, to return as needed. Praying we don't see frequent ear infections over the winter!

Then we went across the hall to Cranial-Facial (plastic surgery). Here a team of doctors follow patients with a range of cranial conditions. In the waiting room it is hard not to be thankful that Emma did not have some of the other conditions.

In summary, we saw the following professionals in the hours between 9am-3pm:

Ophthalmology

Plastic surgeon

Orthodontics

Psychology

Audiology

Growth

Genetics

Plus a couple of nurses!

Audiology

Ophthalmology (they dilated her pupils and she couldn't read again until the next day!)

Emma was a trooper and only really complained when she was getting hungry (at lunch time!). We got all of 25 minutes to grab lunch - and the cafeteria was a long walk too! She had time to eat a couple of chicken fingers and fries, and we had to take the chocolate fudge cake with us! (She earned every unhealthy calorie, and probably burned it off walking between all the offices!)

As for news, her plastic surgeon introduced a completely new suggestion. It always concerns me when a doctor mentions something for the first time, after 7 years of appointments and various relevant questions, why has it never come up before?!

Anyway, he told me he wanted to have orthodontics put in a palate expander. Emma has a narrow mouth and her palate arch is very high. Combine that with a small, partially paralysed tongue, and no lip closure, you can see why that might be an issue!

The plan is to expand the top palate width, which will pull the roof of her mouth down and also allow her protipruding front teeth to pull back (with braces). That in turn will let her top lip come down slightly more - wait, he said there was nothing we can do about the top lip?! See what I mean!

Emma's bottom jaw is already recessed and will need a jaw distraction in the future, but we will also need to expand the bottom palate so the teeth continue to line up.

I was a little freaked out. Firstly, never heard of this. Secondly, how might this impact the therapy clinical trial we want to do.

I was actually posting a play by play on Facebook and was encouraged to see so many of my friends say they had a palate expander when they got braces! That was great.

When I got home I contacted the therapist conducting the study she said it would exclude Emma from the study, but if we could postpone it for 6 months we'd be good. We will postpone.

We met with a osychologist for the first time, since Emma is getting to that age where kids can be mean etc. He was very impressed with her, and we discussed our strategy for raising awareness, supporting her and how we see things. He said that we are doing everything right, which was so great to hear! He did try to teach Emma that when she does have to tell people about her condition to keep her chin up and look them in the eye. Not sure she got it as when we tried to practice she kept looking up at the ceiling!

So, we got done at 3 and headed upstairs for an unrelated appointment with the sleep doctor! Scott was finishing work at that time and met us there.

This appointment was to discuss the restless leg syndrome that they diagnosed after her sleep study. But we also wanted to discuss Emma's sleep walking that we had been paying more attention to.

In summary, she does not have restless leg syndrome! The sleep study alone can not indicate RLS, and Emma has no other symptoms. Thankfully.

The parasomnia can actually be linked to disrupted sleep habits, and sleep deprivation. That makes sense because the kids have had a very relaxed schedule over the summer. That all changed tonight, as the kids went to bed at 7!

Emma was very relieved to get out of there about 4pm, as was I. She really is able to persevere, and got her just dessert!

Mom moments

There are those moments in life that stop you dead in your tracks, to pause and let things sink in.

For me that moment tonight was putting hard boiled eggs in a bag for Emma's first packed lunch tomorrow. Such a mom moment!

As many moms are having weepy moments today because their babies are about to start school, I too am weepy, but happy weepy (if that's a phrase).

The last 7 years have flown by. At first we really had no clue if Emma would ever walk or talk. NO clue. And we just wanted her to be healthy enough to come home, we'd figure out the rest as we went along.

I can't help but recall those weeks when I knew I could not go back to work because I needed to stay home and take care of Emma - after all, where would a daycare round here handle suction, g-tube, and the other paraphernalia, and how much might it cost?!

As the months went on we wondered how she would do at school. Would she need a nurse to accompany her for feeds and assistance? Who would pay for it?!

You simply can't plan for the future, just prepare for it while living day by day.

It's been a couple of years since Emma had a G-tube in her stomach, or needed any assistance breathing. And tomorrow she'll start first grade.

Her first year of full day school, and I just packed her lunch. A Nutella sandwich, hard-boiled egg, veggie straws and ice-cold water in her My Little Pony thermos. She will eat it without assistance, all of it, happily.

I'm so thankful that the smallest of things can remind be of just how blessed we are.

My boy!

This is the boy that is terrified of the ocean and was too scared to get in a pool at the start of the summer!

I love that he has gained so much confidence.

Monday, August 25, 2014

Messing with the kids!

This weekend, we discovered that we can change the channel on the TV from our phones. This is very handy when you can't find the remote control, but also enables you to have a bit of fun with the kids! For example, this Saturday we were still in bed while the kids went downstairs to watch TV. I have a genius idea it would be funny to change the TV channel while they're watching it. So I did.

Apparently, Toby was holding the remote control, which he likes to do to feel in control! So when I changed the channel, Emma told him to change it back, that she didn't want to watch the other show. Toby threw his hands up, and said "it wasn't me Emma, it changed by itself." Then they change the channel back. This was far too funny to let it go, so I changed it a few more times!

Rather surprisingly, a full on fight did not ensue! We then cool to be upstairs, and thankfully he left the remote control in the living room. So while he was upstairs with us we change the channel again!

When Scott and I did go downstairs, I told Emma that we had been changing the TV channel. She was confused until I told her that I changed it from my phone which apparently is a valid exclamation for anything with these kids! Definitely a very funny few minutes for us!

Saturday, August 16, 2014

Sun filled Saturday

We skipped the pool today to head to the beach and spend the day with Melissa and Keith. Keith's parents have a little condo down there and they all spend the weekends fishing off the beach.

Right off the bat, Scott caught a little sand shark!

We all got to touch the shark before he put it back in the water.

Leighton had no respect for Emma's tail and drove her crazy sitting on it!!

It was the best day to be there. Warm clear water, hot sun, light breeze. Unfortunately Emma came down with a fever and spent most of the time sleeping in the tent. Such a shame.

Two weeks of summer left...

Saturday, August 9, 2014

Getting clean

Anyone who's known me for a while will tell you I have never been a healthy eater, and definitely not a veggie fan. However for the longest time I've wanted to lose weight and be healthier. Last summer I started exercising, intensely, and though I've taken a break the past couple of months it's still on my radar! But I realized that to lose weight I really needed to address my diet.

There are many options out there that seem like a quick fix, but usually cost an arm and a leg! I was tempted to push our budget to try one, but then came the issue of Emma having restless legs and low iron. We all need to eat healthier, and maybe that will help with the iron issue too.

I have a friend (Sabrina, the mom of Toby's girlfriend!) who is an experienced healthy eater. When the doctors failed to help her cancer with traditional medicine, she went to a doctor who took her off meat and dairy, to clean eating. Sounds like a fad, but there is a lot of wisdom in eating fruit and vegetables rather than all the processed food we've accepted as normal. In fact when you try to avoid it you see how much there is!

So I've been giving the kids salad, spinach, sweet potatoes and fruit instead of fries, pizza, pasta and other stuff. They are still eating some of their favorites, but where I can, I'm switching it out.

Check out my kitchen...

I'm seriously trying to figure out how to plant a garden!

And I've gone a step further to help me with the things I don't like to eat - juicing! Intense extraction of the juice and most nutrients from produce, mixed into a drink. And it's really good! If you've never had fresh apple and carrot juice, you're missing out!

Check out this that I just made...

I've never ever eaten a beet (beetroot if you're British!), but now I've drank one! And since I have a sweet tooth, I can bring everything to a sweeter note.

I'm really excited about being healthier, teaching the kids not to be scared of things and maybe, just maybe losing some weight. Even if I indulge occasionally, my whole body will be healthier!

Friday, August 8, 2014

My man!!

It goes without saying that I am incredibly proud of Scott for so many things, but here I am shouting about his carpentry skills, though I think craftsman is more appropriate!

Check out the benches he built for friends of ours, designed by him!

Some of the finer details...

Drawer in each end, and an electrical outlet!!!

So proud!!

MSAD

Moebius Syndrome Awareness Day may be 6 months away (January 24) but after the conference we felt like we needed to do a better job for it next year! So we took advantage of the discounts on conference weekend and ordered our shirts!

They came on Thursday...

Really nice shirts, long, and soft, and about $10! Can't beat that.

Of course I just realized the one says 2014! Oh well, we'll have to wear them out!

Tuesday, August 5, 2014

All things have purpose

Everything happens for a reason, and maybe if you don't believe that, you can agree that most situations can be used to learn lessons. Today was a culmination of things.

Before we left for the pool, the kids were all "sun-screamed" (Toby's hybrid of sunscreen and sun cream!) and in the kitchen while I got a few things together. Next thing I hear crying, and as I approach Emma comes towards me, eyes red and says "Toby made me spray sunscreen in my eyes!"

There was no split second needed for me to know that this was twice as bad since Emma does not have the reflex to blink when something approaches her eyes. I have since concluded that she may have turned her head on contact, as it would not have felt pleasant. Indeed, her eye balls looked pretty red and she complained it hurt.

Showing remarkable restraint, I [only verbally] flipped out and grabbed some paper towels to sponge her eyes with water. Somewhere in the back of my mind, whenever "put drops in" came up I knew that mixing chemicals would likely be worse! So I continued with water, and Emma cried - concerned that I was mad, which I was, and because I was yelling at Toby to go and sit in time out on the stairs.

We have a rule in our house, that if you tell someone to do something that you know will get them in trouble, you are equally, if not more culpable for the foolishness. Since Emma was dealing with direct consequences (and my groanings of "you could have blinded yourself"), I knew time out was not necessary for her.

Toby was astounded to learn that we were still going to the pool, despite the complete idiocy that they had shown. That was mainly because to stay home would have been punishment for me given my now gray mood!

At the pool we had a great time with friends. It was hot, water felt great, blah blah. Emma saw a new friend of hers, with some other girls we didn't know. Emma took off her snorkel mask to say "hi" and that's when the longest hanging booger came out of her nose! Now looking like a drowned rat is never flattering, but add to it that grossness and I think I saw the other girls physically recoil. It broke my heart. Emma is so oblivious to the image she portrays, and I desperately want to protect that innocence, but still want her to have a little street smarts!

Later, as we waited in line for an attraction at a town event that was taking place near the pool I observed a little girl staring at Emma. She looked fairly expressionless but I was not liking the way she was staring like Emma had two heads! Look how "normal" she looked...

Eventually I had to intervene (though Emma was oblivious, it was just rude!) and saying "hi" did not work, so I waved at her and said "hi". Only then was she able to turn away. Again, broke my heart.

Anyway, later on as I put her to bed (here's where it all comes together!) we were talking about making mistakes, and making stupid choices (yes, I called her actions "stupid" though we never use the word, it was appropriate to describe her utter foolishness!). She asked me if I had ever made mistakes! Love her, she actually thinks I'm flawless. Well, maybe not since she was able to suggest a couple things as I pondered it n my head!

What I chose to tell her was that when I was a girl, I made the mistake of staying friends with girls who were mean to me, because I was scared I would not have any friends. I did not want to be lonely. I went on to explain that I didn't understand that even without those friends, I would find others, and even still, I had my family and Jesus.

Emma responded with a "bible point" that was similar to ones she learned in Vacation Bible School last week. She said "even when you don't have friends...Jesus loves you!"

Most adults don't seem to realize that that kind of understanding is the very heart of God. He longs for us to realize that when everything else is in ruins, He loves us - and that is more than enough. That is everything. Often, when life is so good we don't have tough times, we have no need to consider what we are left with when all the people are gone, when all our stuff disappears and we have not been perfect.

Jesus loves you.

~ one proud mom.