Monday, November 29, 2010

When your friends struggle

Today I read an update of a friend's son who also has mito and is going through a rough time. My heart breaks for them because I know the pain of regression, the uncertainty and raw fear of the unknown. It also breaks because I know that the next update could be our own. Mito changes things in moments and at anytime it could be Boo. Right now he is doing well. We've avoided the hospital twice now and I consider that a big deal! However I know it's not an "if" we ever go back to the hospital but more of a "when". It's just the nature of this disease. Right now it's our friends and we stand by them because we've been there too. Not always with the exact symptoms but with the same emotions and thoughts. Part of me can feel guilty when a friends child is doing worse than Boo. After all, he is doing amazingly well overall right now and to see another child with the same disease go through a rough patch while you sail by can be...a complicated emotion! You are happy your own child is doing so much better than the other and at the same time want that child to improve to the same place. Mito seems to be the instigator of complicated emotions on many levels though! Tonight I will be praying for the improvement of a special little buddy of Boo's and in the same breath praying that Boo at least stays where he is at. Because, I know it could be him next time.

Saturday, November 20, 2010

Twice in a week!

So check it out people I'm posting twice in one week! I know earth shattering right? OK maybe not but it's a first for me here. I tend to keep very busy and I think it's my subconcious way of NOT obsessing about Boo. Because I'll admit when I start something I become totally obsessed with it until it's finished/solved. Well Boo's medical condition isn't going to get "finished or solved" anytime soon so I've dropped out of Google Medical University (and I was sooo close to my MD!) and enrolled in "Domestic Diva Academy" instead. Baking, cooking, sewing, knitting you name it I have it going on! As I mentioned in a previous post I made a dress for a date night. Well a friend of mine has a start up photography studio and invited me over to model my new dress. The only problem was that her studio is in her basement and is designed for kids which meant I couldn't stand up for pictures in my 4 inch heels! Here was probably one of the better ones (that's she's emailed me anyway) although the skirt actually came to about 6 inches above the knees when standing vs the super mini it looks like here!

So that date was FABULOUS!! Hubby looked really hot in his suit our friends were, as usual, a blast to be with and it felt wonderful to be a polished adult for an evening! I owe that date to a terrific sis-in-law who has tirelessly volunteered to be trained to take care of Boo for short periods and offers her services at least twice a month (plus she cleans and does laundry!). Without her we'd be starved for alone time.

Right now I'm back to my life in jeans, chunky sweaters, ponytails and fuzzy socks as well as beeps, buzzing and other alarms that come with Mito life. Boo has been more tired than usual the last few days and has required almost continuous O2 and I'm trying to decide if it's teething (three coming in!) the G-tube feeding trials (doing good at continous for a couple hours a day!) or if something else is up. So hard to tell! Well that's about all I had for today :)

Tuesday, November 16, 2010


I shouldn't worry about anything ever. No really!! I have a great family, wonderful husband and a God that has proven over and over and over again that He is taking care of me one step at a time. I can pile all my burdens on Him and He will give me the strength and support to walk through this life. So why do I find myself doing it?!? I'm not sure I can answer that other than to say I'm not perfect. I wonder about Boo's future and what it really holds. Sometimes I wish I knew the future so I could prepare better and other times I'm glad I don't. If you told me last year what my life was going to be like this year I probably wouldn't believe it. It's probably why God doesn't tell us our life story ahead of time but rather puts things in place to prepare us for it. My life has been...interesting. On the one hand it has always been perfect, happy, loving and filled with many things that most people never get to experience (like milking cows or walking the bridge of a luxury liner) on the other it had a lot of drama, hardship more drama and sheer stress from a young age. All of it has prepared me for my life now. The great parts taught me to be thankful, loving and loyal the rough patches to be resourceful, compassionate and strong in my faith because through all the rough spots God was there even when I didn't see it that way at the time. Now, I can look back and see His hand in it all and how it prepared me for today. I don't know what Boo's future or any of my children's future holds but I know that God is preparing me and preparing them for it through all of this. He has proved Himself faithful in so many ways, here are a few:

1. A great pediatrician, we hired him for our girls 1 year before Boo was born and never realized just how great a doctor he is until Boo arrived.
2. We got health insurance for the first time in our lives just 6 months and 3 days before Boo was born just making him eligible for coverage which is now passing the 1/2 million mark.
3. Our little house which my Mom and found, bought and remodeled only months before we sold our house and needed a place to live.
4. Sometimes out of the blue and from unexpected places God has paid our expenses whether from a "mystery" giver, a side job, a commission check I'd booked a year in advance or someone from church just wanting to help because they understood the burdens.
5. New friends, I've met some amazing people with even more amazing kids and have been able to minister and be ministered too through our friendships. Proving that good can come from the situation we are in through blessing others.

I do try not to worry about things getting worse. I do think there is a fine line between justified concern and care and worry which I'm sure I cross often but I hope that I can improve that, lay it at my Savior's feet and get some sleep knowing He holds my children in His hands.

Thursday, November 11, 2010

Swimming and Sewing

Just when you start to think that things are on the upswing, that life is leveling out, reality hits. Yesterday we were invited to go with friends to a local community pool. Normally we shun public places from Oct-Apr but I thought that with all the bleach and chlorine a pool might not be so bad. Afterall, swimming is an encouraged exercise for kids with low tone like Boo. So off we went. All three kids had a blast in both the kiddy splash pool and the larger family one and it was probably the best family time we've had in awhile. Boo was particularly happy and splashed, kicked and giggled for an hour and a half straight in the 85 degree water. Our friends also have a little boy just two months younger than Boo and this is where the reality part comes to hit home. "O" as we'll call him was off playing in 12inches of water, walking around, running through the fountain, climbing up the sides of the pool and back in again while his mother sat on the sidelines watching him carefully. Boo could hardly walk though the water without loosing his balance and as hard as he tried he could not climb up the sides of the pool, let alone lower himself back in the water. So I gave him my hand and tada! A new confidence was born! As long as he had that bit of balance support he did really well (although he still needed lots of help climbing in and out) He could see what his friend was doing and wanted to try himself.

My heart broke as I watched this unfold around me and realize that while he's made really amazing strides with the O2 he is still not like other's his age.....yet. There is always hope! "O" did not have blotchy red and purple skin from the effects of the body going nutzo over the temp changes water to air, he didn't have everyone staring at his tegaderm taped belly, he wasn't wigging out the highschool age lifeguard who kept looking at us trying to figure out if he was really OK to be swimming, he could climb, walk and navigate the slippery floors without assistance. I can all but guarantee that an hour after getting out of the pool and being warmed up his core body temperature was higher than 96.1 and he probably wasn't having low O2 levels and a heart rate 10bpm lower than his normal low throughout the night and I imagine that if you fed him it would probably digest just fine instead of backing up and sitting there for 2 hours like Boo did. All this to say we have realized that if we are going to go to the pool again we are going to have to change some things. We'll have to take Boo out and warm him up more often, check his vitals and also not stay as long to begin with as it completely wears him out. This is hard because he LOVES it and did not want to sit still for even 2 minutes when I had to retape his tube guard. (we cover his tube site with tegaderm when swimming)  We'll see how it all goes next week and if we can find a happy medium between his health and his happiness. The girls also wouldn't like cutting our time short because of Boo.

On the Mommy front I have been pacing my wardrobe for a week trying to decide what to wear to the hottest date I've had planned in a very long time. Hubs is taking me to the nicest restaurant in town on Saturday night at 8:30pm along with another couple we are good friends with. The restaurant is having a special and our dinner is going to be 1/4th the price of normal so while we'll have to skip our next two date nights, it's within the range of being able to afford it by doing so. This has led me to agonize over what dress to go in. Don't get me wrong, I have a few cocktail dresses that would be perfectly suitable for the occasion that have been sitting in my closet all lonely since before Boo was born. So the problem isn't that I have nothing to wear, it's that I have nothing I WANT to wear. I've always bought clothes that are very classic in style so that I can wear them forever. That is where my problem is. I'd been wearing these dresses over and over and while to the rest of the world they still look really nice and totally Jackie O, to me they look....boring. It's my first big date in forever why wear the same ol, same ol? So I went shopping and bought three dresses in the latest, hippest and most trendy styles and brought them home to try on,  maybe this would give me the inspiration that I needed to figure out what to wear. I kept the bag and the receipt and tried them on. The first one....well lets just say it looked bigger on the hanger, either that or I am no longer as skinny as I once was. The second one was a nice little black dress but perhaps a bit 1996. The third one was the ringer, a dark purple, one shouldered, draping creation that hugged all the right places and none of the wrong ones and was about 6inches shorter that anything I've put on in the last 4 years or so. According to Hubs though it was ringing a few too many of his bells and he thought he might hurt someone if he caught them looking at me in it. (I have to admit, it was cut perfectly to hide what I wanted hidden and not hide the parts of me that still showed well.) Ahhhh so what to do? (I can't actually afford the dress anyway!) If you are me you sit in front of the computer with a piece of fabric from your stash wrapped around you and you sift through the latest Emmy Awards What's Hot list until the light bulb turns on and you head to the sewing machine. 2 hours and 20 minutes later you will emerge with a dress that is trendy, a bit shorter than you expected but doesn't cause the Hubs to want to lock you away from sight. My dress still needs some embelishments added but the structure is there so I'll finish it tomorrow and hopefully get some pictures up after our date. (And after I figure out how to do that on here) Time to sleep busy day ahead!

Wednesday, November 3, 2010

O2 our friend

So I'll admit, I'm not a great blogger! Seems just when things get stable and I think I can do something in a consistant fashion it gets crazy again. On October 19 we went to see the pediatrician (and to make a long blog shorter) he decided to start Boo on O2. That was the begining of the end for the day because just as we left the office Cleveland Clinic called wanting to know if we could be there in 1 week for his muscle biopsy. Uhhhh sure we can do that. So we started getting things in order, had the ped write up his report and fax it over and did the same at the ENT appoinment the same day. The ENT thought Boo needed a sleep study because he didn't think he was suffering from obstructive sleep apnea due to a throat issue, which was one of the things we were considering as a reason for the O2 need. As we left the office Cleveland called again about the O2 order. They wouldn't sedate him without knowing why he needed it to start with. So they scheduled him to see a pulmo and cardio in Cleveland because the ones here are nearly impossible to get into on short notice. So they canceled the biopsy and scheduled the new appointments for Nov. 1st

This was emotional for me because we had been waiting for the biopsy to be scheduled for such a long time and to have it and then not have it and to be bounced around so much in one day was draining. Because God is always in the details I wondered what we needed to find out before the biopsy.

That was a Tuesday and by the time the medical supply company got it together and delivered the O2, it was Friday evening. They took a monitor download the same day and it showed 33 events over 3 nights. This is not a terrible report, many children will have 33 or more episodes per night but for us it showed that there WAS something going on. After the O2 was delivered we packed up and went to visit my parents 1.5 hrs away. That night we started him on 1 Lpm and the next morning we woke up to a completely different child. The boy we always knew was inside came out. For the first time in his life Boo played without fatigue for FIVE HOURS straight. Normally he wouldn't be able to play for more than 30-45 minutes at a time without a break or a rest and this is in our tiny house where you practically have to crawl over the dining room to get to from the kitchen to the living room. (We placed the O2 concentrator by the fridge and the 25ft of tubing reaches every corner of the house!) My parents home has a flight of stairs and he must have climbed them at least 3 times and ran through the offices, guest space and of course tore up my parent's livingroom. (My parent's home is built over the offices and warehouse of the family business so this is a pretty large running space!) I couldn't believe the change. Day after day it was the same. We kept him on the O2 only at night, naptime and for long car rides and he was doing great! After spending a little over a week with my parents we all left for Cleveland for his appointments.

Since this "update" is turning into an "upbook" I'll shorten it to say that we took the girls with us this time because we were able to confirm a room at the wonderful Ronald McDonald House there the day before, arrived and had a great evening as a family. During the night Boo started struggling with congestion and we had to double his O2 usage. The next morning it was obvious that he was not in the best shape. For that matter neither was I. I didn't think I had much choice other than to press on with the plan though. Hubs was to stay with the girls at the RMH and try and have a fun day together between work phone calls while I shuttled Boo around. Our first appointment was with Cardio at 9:30am for an EKG and Echo. Both of which turned out fine and we were told to come back every year for a check up and not worry about his autonomic heart rate changes unless they stayed high or low "for a long time". Then off to pulmo after a 5 minute coffee break. I have to say, any peds doctor that sports a pink shirt and bright blue polka dot bow tie to his appointments to impress the kids  is a winner in my book. He was really interested in the whole picture and trying to figure out what part he was going to play in it. He also took time to make sure Boo was comfortable during the exam part. He wants a sleep study, a broncoscopy and a chest x-ray when we come back for the biopsy and was all for keeping him on the O2 if it was helping so much. Yay!! Another doctor who trusts parents! During the appointment Boo started screaming in pain and it took me awhile to figure out that he was bloating. I vented his g-port and dark green bile came flowing out. Great, just great, his motility had shut down. I stopped his feeds and dumped the bile and he was much more comfortable in about 10 minutes. The resident had been in the room during this time so got to see first hand what happens when Boo has a cold. I was secretly praying that we wouldn't end up inpatient. We got back to the house and I started him on Pedialyte and he seemed to perk up after a bit. Enough to play in the room while we packed up to leave. I felt SOOOOO guilty having a sick child in the room so we kept him sequestered and after taking him from the room I cleaned, then disinfected every inch and then cleaned again praying the whole time we'd leave no germs.

We went back to my parents as Hubs had more work to do there and ever since it's been like a children's hospital around here. We had to nearly triple Boo's O2 one night and during the times he managed to get his cannula dislodged he'd drop to the 80's. Pudge has also gotten very sick running high fevers and being very lethargic so at one point Hubs considered trying to figure out a splitter for the O2 because Pudge's sats where hoovering in the low 90's but then the motrin kicked in and they went back to normal. So now we know that Motrin has to be kept running for her because if it wears off she goes from sick to very sick fast. Princess has managed to stay fairly healthy and has only developed a dry cough so far.

So that has been the last fortnight here in the Mito Lane. A never ending series of adventures which has required an enormous supply of coffee, chocolate and of course much, much prayer!

Wednesday, October 13, 2010

Rainy days

I am a sun lover. The hot rays streaming to earth and warming my face while a balmy wind blows is my idea of heaven. When the sun is out I'm the energizer bunny. I bake, sew, play with my kids, catch up on all my house work, make plans for the week and just in general feel great. Or....bracing myself....rains. For me, it's like the batteries get removed. I just want to sleep all day. I've started learning how to channel this. My Grandpa always said that a rainy day is too nice to be wasted on anything but drinking coffee and reading next to a hot wood stove. So I start the coffee pot right away on days like this and then put the kids in the bath tub. I catch up on some reading even if it's just a magazine. This usually wakes me up enough to be somewhat productive for the rest of the day and at least feed the children. Because we live in a state that is chronically cloudy in the winter and will often spend entire weeks without letting even a shimmer of sunlight through the gray skies I have to reinvent myself every fall. This fall is going to be no different because life goes on despite dark dreary weather especially with a Mito child. Boo still needs the same amount of care on a cloudy day as a sunny one. The positives are the cooler weather which he seems to tolerate better. Of course cold weather means sick season around here too which is reason #635 why I do like winter (cold being #1 and cloudy being #2). In fact in my opinion there are only 2 positives about winter...the snow is beautiful and I LOVE the Holidays! We spend from Thanksgiving to Christmas baking, sewing, partying, singing and just in general loving everyone. Although, the past two years the party attending has been preceeded with "is everyone there going to be healthy?" and Boo and I have inevitably had to be left out of a few because there tends to be someone every now in then that insists on coming even though they are sick. I'm not resentful though, I was probably guilty of the same at one point or another not realizing the impact it might have on someone else. It's all part and particle to having a Mito child. If I could put Boo in a bubble from October 1st to April 15th and have him enjoy it I probably would.

For today though, I'm going to rally and do some sewing while the kids take their naps. Either that or bake some more fresh bread. With a recipe this easy why not!?!

Rainy Day Bread
Mix together in bowl:
6 1/2 cups flour
1 1/2 tablespoons salt
1 1/2 tablespoons yeast
Add 3 cups of water and stir until mixed. It will be very sticky. Set in bowl for two hours or overnight.

Grease hands and shape into 2 long loaves on a cookie sheet covered in parchment paper and bake at 450 degrees for 30 minutes. Add a pan of water to the oven to give a great crust. Pull out of oven and let cool near completely before slicing to allow crust to turn soft and chewy. Enjoy!

Sunday, October 3, 2010

My Gray Hairs

Actually they are white...about a dozen lovely white hairs sprouted in my bangs about 1 month after Boo was born and haven't gone away. I call it a stress mark. I'm sure after the last couple weeks I'm going to sprout some more although this time I've been chowing down B-complex like they were jelly beans. See this is what happens to you when you have a medically complex child that can't seem to make up his mind about whether or not he is going to be healthy or a bit unstable on any given day. Last week we were inpatient for 37.5 hours because Boo decided to sleep with his oxygen saturation levels (O2) between 90-95% for several hours. This was too low so I was advised to take him in. This was of course at 3 o'clock in the morning, hubby was out of state for business and my two daughters were sound asleep. I called my sister who woke her husband who would meet me in the ER parking lot. I packed a small bag for Boo and I and  woke the girls who handled the situation like champs. (As far as they know doesn't everyone get woken up in the middle of the night because their brother has to go to the hospital?) Of course I carried their half awake little bodies into the car and didn't think about things like shoes or extra clothes for them! Once at the hospital and done with the kid exchange we checked in and were taken back to a room within a couple minutes. Boo was fine once awake of course and the resulting chest X-ray and IV placement was enough to get him screaming. Once he fell back asleep they started to watch him while waiting for the labs. He did fine! After a few short dips to 94% he got up to 97 and stayed there. They thought that perhaps some mucus from the small lung infection they found may have been blocking his airway just enough to cause problems but then got cried out. All the same they admitted him for observation because he has a bad habit of being discharged and then coming back 2 days later to be admitted for a week or two. He was extra sleepy for the next day but otherwise did fine and they sent us home.

At home he continued to do well until a couple days later when he developed a minor cold. Again his O2 was tanking at night but this time we just kept waking him up a little or rubbing his chest. It's kept us out of the hospital. They downloaded the home monitor only to find out NO EVENTS!! I couldn't believe this so after much discussion found out from the nurse that the perimeters for recording O2 events was set WAY too low. The new machine we have is set higher but not as high as I'd like to see. According to an ICU doc he should not have O2 levels less than 94% for more than 3 hours so it would make more sense to me to set it to alarm at 93% than at 90% so we can tell if he is sitting low.

Anyway, this post is getting long so I will summarize it to say that Boo had 2 more terrible nights with frequent drops into the mid to high 80's% which resulted in my husband and I talking about the possible need for night time O2 supplementation and then comes along last night where he stayed above 97 the WHOLE NIGHT! I don't know if it's just  he's getting over  the cold now or if something else set him "off" for a while but now it's gone or what it could be. He's also started to eat cheerios again by the medicine cup full vs 3-4 at a time so something is getting better. We will of course have to continue monitoring him to see if he has more good nights in a row or goes back to what he was doing before which has been an up again/low again cycle for at least a month now.

In other news hubby and Pudge have come down with colds now so we'll see how healthy we can keep Boo since the house is so small "quarantine" is not an option like it was when we had two floors. The good news is that because everyone else needed to stay home just Princess and I went to church this morning...well kinda. She went to Sunday school, I ran the coffee window and we left after she was done. We stopped at our favorite coffee shop on the way home and split a muffin and drink. It was great to spend some one on one time with her again and it gave her a chance to ask me all the questions about Mito that she's been accumulating since we talked last week about a dear new angel named Samuel who had the disease. She's so smart and doesn't even know it! (I mean really, how many six year olds do you know that learn about sub cellular biology?) Well, I suppose this is plenty for now. I'll try to be more consistent with this new blogging thing so my posts don't read like a book all the time! (what can I say...I'm wordy!)

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 :)