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.

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 :)

Worry

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.

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!

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!