The Baby Bug

So it's probably no secret to those close to me that I'd like to have another baby... and lately it seems like pregnant women are following me. Through the grocery store, next to me at the gas station, in restaurants and the mall... They seem to point their bellies at me, casually stroking their unborn or resting their hands just above those bumps of teeny tiny wiggly little beings... Ok, maybe I'm exaggerating a little, but seriously, today I went to lunch with one of my oldest and dearest friends and literally in the time we were there, which was maybe 25 minutes, 4 pregnant women came in; probably following the cravings of pregnancy to the nearest Subway. And this is not a busy Subway. We laughed about having to either be pregnant or geriatric to eat there today.

And it's not just in my real life that this is happening. I swear every day for the past 6 months I get on Facebook and see that someone had their baby the previous night, or just announced that they're expecting- not to mention those who are in the middle of that long road to parenthood for either the first time or possibly the fifth... Just the other day I logged on to see that a friend recently discovered that she's having twins. (Did I mention I'd LOVE to have twins?? Call me crazy...) She's a gorgeous mama- patient and loving and genuine. These two babies will be her 5th and 6th and no doubt just as beautiful as her others.

Every time someone announces a pregnancy, I send up a few prayers (ok, more than a few, I might be a little obsessed with it) that their babies will be strong and healthy and able-bodied. It doesn't matter if the mom-to-be is my sister, an old friend, or someone I barely spoke to from middle school- it's always the same feeling that goes through me... Maybe some surprise, then undoubtedly a happiness that comes only with the news of a new life, some jealousy (I won't lie!), and then the hope that the new little bundle of cells with grow and develop just the way it should.

Of course I'm happy when someone is happily sharing news of a new addition to their family. It's a step that should be shared with smiles, perhaps some happy tears, and congratulations all around. It's just that with every "I'm pregnant!" I hear from those around me, I relive the news of London's diagnosis, or I see her in her crib, jerking her arms forward, her very first seizure... I think about how hospitals smell, and the weight of the air in the neurologists office. I recall having to puncture her flawless, pale, perfect skin with needles and pump steroids into her fragile little legs because there was a small chance of it taking her seizures away. I remember getting her wheelchair or her leg braces; I think about sitting in the waiting room as she had surgeries or procedures done and being with her in the recovery room, with wires and tubes going out every which way from her little body. I count her doctors. I think about the relationships I've made with complete strangers in different countries, all because our kids just happen to have the same rare disorder.

It's not hard to be happy for my friends, it's just so hard to NOT be sad for what we've missed out on.

A Lazy Day...

So it's Wednesday, and London is out of school on Wednesdays so that means that we have a lazy day midweek. I usually have a hard time on these days because I feel like I have so much other stuff that I need to do and can never get around to, but I'm not complaining today! The past few weeks have been extra... something. Stressful? Exhausting? Something...I haven't been getting any good, restful sleep and with so many sick days and appointments, my routine had been way off. I feel like I'm going through the days with lead feet, and simple tasks like making lunch sometimes seem insurmountable. I have been short-tempered and have had headaches on a daily basis. I thought I was getting sick but nothing points to any sort of virus or infection. And no, I'm not pregnant. lol

We took London back in to the doctor for her re-scheduled VNS appointment and after discussing how she had been acting for the past month, we decided to go ahead and turn down the device to a lower setting and leave the frequency at which it turns on the same for now. I'm desperately hoping to see results. Last night was the first night in a long time that she didn't wake up multiple times with either seizures, pain, or just general unrest. I woke up and thought something must be wrong but other than being a bit more sleepy than usual today, she seems ok.  We also had to go for her routine blood work the evening of that appointment and yesterday the doctor called me with the results; everything looks fine apart from her Depakote levels being a bit low. Depakote is one of the meds she's on for seizure control, so the level was not normal; we possibly forgot to give her the Depakote that morning.

So, at the moment, I'm sitting with a sleeping London in my arms enjoying a movie with Kannon. Just before she fell asleep, London was looking right up at my face, her eyebrows ever so slightly furrowed, as if she was concerned. Her eyes seemed to be searching for something, it was like she was trying to silently communicate an important thought to me... she was clear and focused, something that rarely happens, especially for such an extended amount of time as this. How I wish I knew what she was thinking!

Sometimes it's like I can look at her and see an outline just under the surface, of who she SHOULD be--- a care-free, energetic, creative, curious, active little girl with crooked pigtails, skinned knees, and an infectious giggle--- much like the way I can make out the outline of her VNS device just under the skin at the left side of her collar bone...

VNS update

London has now had her VNS turned up a few times... I felt like things were going well with it even though we weren't seeing significant seizure control. She seemed to be a little happier and alert and I'll take small improvements like that any day! But after this past appointment to turn it up, it seemed that she was right back to grumpy London who wanted nothing but to be held all day, every day. I thought she must have an ear infection and it turned out I was almost right. Her right ear was a bit red, and since 'a bit red' ALWAYS turns into an infection for London, we get her on antibiotics for it right away. Typically, when on antibiotics, kids get diarrhea, but not London! She had been backed up before and the meds just made things worse. After I got that problem taken care of (thank goodness for PRObiotics!!), she still was grumpy so I called in for another Rx thinking the first one just didn't get rid of the infection entirely. And when THAT didn't work, I took her back in to make sure it wasn't still her ear. And it wasn't. So we were back to no answers... until I remembered that the VNS leads can cause pain up near the ear. I figure this is the problem...

We were supposed to go to the doctor today and I was going to see about turning the INTENSITY down, but turning the FREQUENCY up to see if we could get happy London back, but as soon as I put her in the car to leave, she puked everywhere. And most SN moms can relate to this: when our kiddos puke, there's no grabbing a wet wipe and getting on with the day as planned. I reluctantly rescheduled our appointment and London slept for the next several hours, puking once in her sleep. I was able to get a few things done around the house, but I look forward to our appointment so I can talk to the doctor about how the past month has been going.

I'm exhausted. London has also been waking up several times each night- another side affect of the VNS is insomnia (which is just now become a problem) Sometimes she wakes up crying out in pain, sometimes she seems hungry, and sometimes I think she just wants to have someone in her bed with her (that one still shocks me, as she's always been one to kick and push me OUT of the bed)... I feel so bad for her because if she can't sleep and she in pain, I'm sure she has just cause to be fussy and sad and irritable... but sometimes after hearing her fuss all day nonstop unless she's being held really wears me thin mentally and emotionally.

I feel like this past month has just been completely draining. After 5 years, you might think that a mom like me is totally at peace with their child's disabilities... but I feel like I have to re-accept it every single day. My heart breaks all over again each morning when I wake up. 

Homemade Maple Brown Sugar Oatmeal Packets

I've come to learn that, since I can't 'fix' London, it's sometimes theraputic to just create. And since I'm completely addicted to Pinterest, lately I've been trying things that I see on there... The only problem is that sometimes when I try things I see, they don't measure up. So I do things my way... Which is how I came up with this recipe. You'll have to forgive me, I don't have the links for where I found the two recipes that I altered/combined... But I had tried both of them, and didn't quite get what I wanted so used parts of both of them to come up with something that my kids and I would like. And sorry the photos aren't that great- Ain't nobody got time for that. :)

Ingredients:
1 cup brown sugar
2 tblsp maple syrup
1 1/2 tsp salt
Quick Oats (I use 1/2 cup per packet, and I think I got about 11 packets per recipe)
Powdered milk (I use 1 tsp per packet, but honestly this could probably be totally optional. I only used it because I had purchased it for another recipe and figured I might as well use it. I haven't tried it without the powdered milk yet.)
You can also sprinkle some cinnamon into each packet; completely optional.

 Start with your brown sugar in a shallow dish, add the syrup and the salt. 

  (Ok, so I didn't actually measure the salt, I just threw some in there.)

 

And for those of you who like pictures of ALL the ingredients, here's the salt that I left out of the first pic.

 

 Mash the crap out of it all with a fork. It will be lumpy, just keep mashing. You can take a break if your hand gets tired. I did.

Oh yeah, and here's a picture of the baggies I used. In case you needed to know.

After you have your sugar mixture...well, mixed, put a half cup of quick oats into a baggie.

 Then add 4 tsp of the sugar mixture to the oats.

 Add 1 tsp of powdered milk... Repeat until you've used up all your sugar mixture. Seal 'em up for storing. Add as much or as little hot water as you like and enjoy!

*You will have to mash up the clumps of the sugar mixture when you make them*

And don't worry if this happens while you're making up your packets. Just eat those little crumbs and get on with it. We wouldn't want to waste anything.

 And you can just go ahead and eat this too...

According to my MyFitnessPal app, these are about 231 calories per packet... which is more than the ones I was purchasing from the store, but the servings are bigger. And who cares.

I see a light...

So London has been really sick the past week and a half or so (and Kannon was really sick the two weeks before that, needless to say I've been cleaning a lot of puke this past month)... but she's on the mend! YES! She started out with a stomach bug that Kannon passed to her, but even after the vomiting seemed to pass, she just wasn't herself. Doc said her ears looked a tiny bit pink but that he wasn't worried about it at that moment. But, as we always chuckle about at her appointments, he said because things are never what they seem with London, he gave me a prescription to hold on to for a few days in case she didn't show any improvements. I waited about 3 days or so before I filled it, and she's finally coming closer to her baseline. So hopefully on Monday she'll get to go back to school. I know she's been missing it!

Another little tidbit that makes me happy: I paid the final payment on one of London's old medical bills today! It was just a smaller one, but being one bill down is exciting no matter what, right?? :) My New Year's resolution for 2013 was to get as much debt paid off as we could and with the strict budget I made for our family and trying to earn extra income whenever we can, I think we could make a good dent in that and still be able to start putting a few bucks away for a family vacation that I've been dreaming about! We are in the process of refinancing our home at a lower rate and with the difference in our mortgage payment each month, I'm really hoping to see those medical bills go down in flames!

More soon! :)

Danielle

Missing the Music

I wanted to take a few minutes and write about a very sweet, courageous, and adorable little guy in London's class that recently got his angel wings...

I hadn't known Andy all that long- he was a bit younger than London so he started school after she had been going for a while. I'll never forget the first time I met Andy or his mom, Sarah. London's class was going on a field trip to a little pond to feed the ducks and have a picnic. As I always try to do, I met the bus at the pond and waited to see my sweet little London come down on that wheelchair lift so we could enjoy the beautiful day together. As I was standing there watching the kids come off the bus, another mom I didn't know came over and introduced herself. She was Sarah, and she was Andy's mom. I hadn't yet met Andy, and didn't even know another student had joined the class. I remember thinking to myself, 'I wish I was more like Sarah, and could just go introduce myself like that'...

The field trip was nice- the weather was nice, the geese didn't attack, and the picnic was relaxing. The kids were all very content. For me, it was just another day; London's field trip, grocery shopping, a run to the post office, and back home in time to get London off the bus. For the kids it was a great new adventure; feeding ducks, hearing birds, feeling the breeze... I remember smiling when Andy smiled- simply because it was infectious. I wish, rather than being so caught up in what my day held, that I had slowed down a little and enjoyed the moment. I wish that I had been able to get to know Andy better.

When this school year began, Andy and London started out riding the same bus. Andy would already be on the bus when London was picked up, and every day when I'd get on to help strap her wheelchair down, I was greeted by Andy. He would be smiling, playing with his little musical toy. Every day, I loved the sound of that music. I loved seeing Andy be so engaged with that toy, and enjoying such a simple thing.

Andy's service was beautiful- full of love and happy memories. I miss his music, and I look forward to the day where I see Andy again.

Fly high, little man!

A Bit of Catching Up...

I find myself with a little time on my hands at the moment. I thought it would be a good opportunity to tackle this blog update I've been putting off. Thomas has been traveling lately and is gone again, while both my kids fell asleep a bit, er, a LOT early tonight. So I logged on and what do you know, I had page views yesterday! Here I was thinking that NO ONE looked at this unless I shared the newest post on Facebook or something and yet I find that indeed people have checked it out. So I apologize that there hasn't been anything new recently.
I honestly don't know why I can't seem to get a handle on the consistent blogging thing, but I'm assuming it's the same reason I can't to get a handle on consistent laundry washing... But here goes...

The end of 2012 seemed to be a little chaotic. London began coughing a lot while drinking from her sippy cup in June and after failing a swallow study (study showed slight aspiration with each swallow, and her throat muscles are just not stripping everything from her esophagus) it was decided, rather hastily, to insert an NG tube. An NG tube is a tube inserted through the nose, into the stomach, for feeding. She had this for a while and in September she went in for surgery and a G tube was put in (the tube goes directly into her stomach). She did so well during the surgery and even *finally* broke 30 pounds!

Sometime in the midst of this I signed up to become a Mary Kay Beauty Consultant... just thought I'd add to the craziness of life. Why not, right??  I felt like I've slowly lost myself over the past several years and I loved the idea of having a reason to wear makeup and possible dress up.

Anyway, back to London, because I hope she is the reason you all are reading this...
In an effort to (last ditch effort, really) to get a grip on her stinkin' seizures, we had been talking about putting a VNS implant in... So the preparations for that went well, the insurance approved it, and she was put on the schedule for December (thank goodness we got in by the new year, those deductible would have killed us!). It's still strange to think that London now has a neurosurgeon... But things went fairly well and the implant is in now. I've noticed a slight improvement and I'm hoping that once we crank that baby up a bit more that we'll see greater results. She's not seizure free, and maybe never will be, but she's happy and alert for the most part, so we're excited about that.

I guess putting this all in writing makes it seem so much less... well, just so much less, but I feel like my sweet London hasn't had a break from tests, procedures, surgeries, and seizures for 6 months.

As far as our bank account for London's home goes, I think we have somewhere around $7000. I can't even begin to express our gratitude for everyone who has helped us out on this journey so far! We are slowly working on fixing up and finishing our current house so hopefully we can sell it for a good profit when the time comes. I mentioned above that London finally broke 30 pounds, which really isn't a lot until you have to carry her around everywhere... On one hand I'm so happy to see her gain those few extra pounds, but on the other hand, my back isn't too pleased about it. haha!

At the moment, I don't have any fundraisers planned for 2013 (still trying to get a handle on that laundry??) but I'll take any ideas that anyone might have! Thank you all for reading about London and our journey. I'll try to keep a bit more current on the blog.

Love from me and London!