Thursday, September 16, 2010

My week

So it's been a week since I've posted, not that I feel all that bad about it because I post when I can or when I feel like it whatever comes first. My week was so fazzled I'm surprised to be fuctioning at all at this point so here goes...

Today was a cold, rainy fall day and since we had gone apple picking yesterday I had promised the girls that we would make an apple pie. What I had not calculated into that promise was the fact that I had 4 loads of laundry to do, 2 sinks full of dishes calling my name, a floor that was missing the broom in a big way, all of the kids clothes to sort, organize and rearrange for the fall while calculating what I still needed to buy at our upcoming Mom2Mom sale on Saturday and oh yes, pack to go camping for the weekend and all before I was supposed to leave to run a couple errands and then meet up with friends for a long awaited "mom's night out". I had also forgotten that my beloved apple pealer, corer, slicer extrodinaire was packed away in our storage trailer 20 minutes away. Pealing, coring and slicing 12 apples by hand can't be that bad right? Wrong, I could have done the job on a whole bushel of apples with the machine for what it took me by hand for 12! But by golly this apple pie was going to be made! Afterall, I had told the girls that it was going to be our school for the day. Princess was to help read the recipe, count out the items, learn about fractions with measuring and organize ingredient categories. Pudge was to learn about different smells and textures, the colors of the different apples and how to properly lick sugared syrup off a spoon. Other then getting himself covered in flour Boo wasn't as interested in the process as much as he was in trying to sneak outside into the rain whenever I had to go out to the garage for something. (Remember, we have no basement so our garage is my storage, extended pantry and cold pack room.) What is it with boys and puddles anyway?!?

Speaking of Boo he had his EMG done on Monday which was....frustrating... It started fine in the prep room and they got the IV in after only the second try so wheeled us into the proceedure room where his IV blew just as they were trying to get the sedation in. He got just enough to get irritated not enough to knock him out. It took FIVE more tries to get it in again. 4 nurses and the sedation doc from PICU were working at it. They had to start O2 because his sats were dropping and his HR was in the 180's. Boo's screaming his head off and I'm ready to cancel the whole thing right before they got it in and the WHOLE TIME this is happening the Neurologist is in the corner of the room talking to his assistant about going to ArtPrize when and where do go for dinner and plans for the weekend blah blah blah. I understand there was nothing he could do to help but gosh either shut up or step out!

So then the test starts, he tests one arm and one leg for the non needle nerve part and three pokes on one leg for the muscle part. He couln't figure out where certain wires connected on the machine and often hovered over buttons and then push a different one and even admitted "We don't use this machine very often so sorry if we seem incompetent".....Say WHAT?!? You are telling me this at the end of a test that my son was just put under nearly an hour for after 7 attempts at an IV?!? This was an important test of Boo's nerve and muscle function that was quite invasive and now I'm not even confident that it will even be accurate! I'm still working on the "your fired!" letter but it's going to be sent! It took Boo twice as long as expected to recover his walking abilities and his O2 levels stayed low normal for 3 days straight. Then I get a call from one of his other specialists saying they want to schedule a repeat MRI and because of the Mito think it should be done under general sedation. Great! But this time let's admit him because I can't handle the stress of the aftermath!

Oh yes, we also heard from the Dr. at NYU who was being consulted about all this possibly NOT being Mito but primary Dysautonomia instead. Her note was pretty short and to summarize it even further she also believes that Boo has Mito and needs the muscle biopsy at Cleveland Clinic. It was the nail in the coffin for Hubby and in a way a confirming blow for me too. This lady knows her stuff, THE best in her field. While we've suspected it for a long time now and he has been treated medically as having Mito, since it's not confirmed we hold on to a lot of hope that it's not but rather something totally curable. As more and more top professionals agree with each other that hope slips away. So I put the call in to get the biopsy scheduled. Then I finished up the pies, sorted the clothes, folded the laundry did the dish, ran my errands, drank my coffee and cried in my car all the way to the restaurant to meet up with my friends. I fixed up my makeup and was fine the rest of the evening. They never even knew, which is what I wanted for tonight. To pretend things were normal. To pretend that I wasn't scared that things might get worse, that Boo's life might be shortened. God is so gracious though and reminded right as I was walking in that He will take care of Boo and me like He always has as long as I trust Him one day at a time.
This was a marathon blog I admit but it's what's going on here and here is busy!

Thursday, September 9, 2010

What a day!

The problem with having a hectic life is that sometimes things get forgotten and today I forgot about a playdate that had been planned for nearly a week and I even talked about with my friend at least twice. Good thing it wasn't at my house! Lately it seem that if I don't have a phone reminder set I don't remember anything so I rely on it. Problem with that is you have to remember to plug in the phone to the charger every once in awhile (which I did) AND remember to plug the charger into the wall (which I didn't) this resulted in a dead phone this morning which I didn't realize until much...much...later.

The other thing that threw me off today was a last minute idea to get our car fixed while I was at a doctor's appointment with Boo. This took some logistics, drop the girls off at their Oma's first, get dropped off by hubby at the Docs next, walk 1 mile after the appointment to meet up with hubby so we could walk another mile to our favorite area coffeeshop to wait out the fix. While it was a beautiful sunny day and Boo was loving the scenery I was wishing there were more sidewalks! I ordered my favorite drink known as a Java Slinger and had them add an extra shot of espresso this brought the espresso shot count to five in my 16oz cup. Yes, ladies and gentleman I consider it the best drink known to man because I think the only way you could get more caffeine and sugar simultaneously into your system in under 16oz is by IV.

The day was not without some other upsets, the car cost $200 more to fix then they thought, Boo's feeding pump just kept alarming....and alarming...and alarming. Which got very....very....very....annoying! It was also annoying to have Boo grab the warm milk I ordered in addition to my coffee and spill most of it over himself. He didn't seem to even care.

His appointment had gone well. He's been having some issues with his breathing which we will continue to monitor for now seeing that he has some sort of viral infection going on in his throat although thankfully it is very minor because he isn't running a fever. I'm praying it continues to be minor! Otherwise, if the viral goes away and he is still having some difficulty then it might be part of his autonomic dysregulation. You just never know with Boo! Right now he is sleeping and breathing like he just ran a marathon. Ahhh...sleep...something I should be doing!

Monday, September 6, 2010

Maximizing Space

One of the great things about having a handy hubby is that when I get an idea he can put it into action. Being that our house only has 2 small bedrooms the girls have been sleeping on glorified camping cots and Boo has been sleeping on his mattress in the closet opening turned crib. There is no way twin size bunk beds would fit in their micro sized room and leave any play space worth standing in. Now, there is a corner of their room that had been turned into a closet space with the addition of rods and curtains which is where Boo has been sleeping. I'd gotten this idea in my head before but had waited for a good time to put it into action and as it turned out it was the perfect labor day project. We took the rods and curtains out of the space, spent $53.48 on wood, cut up an old foam mattress to make two smaller ones and installed a triple height custom bunk bed in the 4.9 ft x 2.5ft space. Voila! in 6 hours we had army bunks with a fun twist in that we also put up a cutout of a tree so now they all three sleep very comfortably and compactly in their "treehouse". This has left the entire rest of the room to be used for play space! We aren't quite done with it yet but I am excited to get it just how I want it because it's going to be fabulous! I'll put up pictures if I ever actually get around to painting it!

Saturday, September 4, 2010

The First One

So I have been thinking that I should do this for quite some time. I like blogs, I've blogged about travel in my other life (the one with more time for work) and sometimes I think in "blogging" as in, I write a story in my mind about what I am doing. (I know a bit crazy) I do like to write though and that probably stems from my love of reading. So this is going to be about my life. (How would you even begin to write a blog about someone else's life anyway?!?) This is probably also going to turn into a blog about my kid's lives because they are my world :)

I should probably give some background information for people that might stumble upon this in the wee hours of the morning in cyberland when they have nothing better to do than bounce from blog to blog in random searches for information.

So the basics, I've been married for seven years to a wonderful man who God sent directly to marry me. I have three children. Arlana aka "The Princess" who is 6 and while challenging to parent due to her strong personality she is also a wonderful child who would love nothing better than to spend her whole day learning something new with her parent's at her side. Evie aka "Pudge" is 3 and I often refer to her as my little bird because she is sweet and expressive with a cute little voice. She loves to cuddle and to follow her big sister around. Bennet aka "Boo" will be turning 2 in November and when you look in his big blue eyes you could get lost because they are so amazing. He loves matchbox cars, trains, water and sand. He is also a medically complex child who's current probable diagnosis is Mitochondrial Disorder. It's really the only thing that fits but hasn't been confirmed yet.
This past 2 years has been one full of changes. My husband went from a stable job with little family time to a less stable one with lot's more family time. We went from a virtually carefree family of four to a much more complicated family of 5 two months sooner than we thought we would be. We sold our big beautiful house (about 5x what we have now) in the country and moved into a little "cottage" in the city closer to our children's hospital which we frequent often. The change has been good and I definitely like not having to clean so much!

So that is the basics, I'm sure more will come out later :)