Chasing Pavements

I have seriously fallen off the blogging bandwagon. Trying really hard to jump back on. Not even sure where to really begin, so we'll just take it one person at a time.

1. My hubby= AMAZING!!! He really just gets me. He's so wonderful to me, and make me feel complete. He's been super busy with work and this ORI and I really miss our time together during the day, but the exercise should be done soon and I will get to see him again, and have someone to cuddle with at least a 1/4 of the night! The AF ball is coming up and he a POC and doing fundraiser type things, and he found out that all POC must attend the AF ball. Chances are he will be going alone. As much as I would love to go with him, I really don't think its a possibility. The thought of him going alone bums me out and also makes me super jealous, because in all the 7 years we've been married, I've wanted to go to the AF Ball and we've never gone, and now he is going... ALONE! He really wants to work out a plan so I can go to, so maybe we can make it work. We did have a friend offer to watch the boys, I just need to try and get the nursing thing situated (*more on that later) or make her a GT expert over the next couple of weeks. We shall see how this plays out....and then comes into play the fact that I need a dress. and I'm fat and I don't feel sexy and a dress just, um, no way at this point...can I go in sweats? please!!!!!

Which at this point re-directions this to #2...ME! Seriously, how can one person bust their ass working out, eating right and not lose a single pound. Its just some bullshit, which brings me to the whole "It must be stress and lack of sleep" because at this point I don't know what else it could be. I've had all the "REAL" medical issues checked out and cleared ~ so the problem isn't there. I want to give up, but I'm not a quitter. I recently (pretty sure) broke my toe. Still hurts almost a week later. Playing around with the hubby, ninja kicks were involved...my toe suffered injury from a reverse ninja kick meeting a flying ninja kick. (Note to self: we really aren't ninjas and pretending to be one, is hazardous to my toes!)

For the past couple weeks, I've felt very overwhelmed and like my life has been crashing down around me. Watching life just swirl down around me, like toilet water flushing. Things were just bad, I was very depressed and feeling terrible. My house was OUT OF CONTROL. I had to take a step back and ask myself "What the hell is going on here??" I needed to take control back, so I've taken my level down, trying really hard not to yell, and the whole level of the house has gone down. I am breathing, taking very long deep breaths, and just relaxing and the tension in the house has gone down. There is less yelling, less stress and less tension coming from me. There is still a lot going on, but I need to chill out. I can't be mad, angry, depressed all the time. Its no life to give these kids. Life sucks sometimes, and life isn't fair, but ya know what, LIFE IS GOOD! We've just got to live for today, take it all one day at a time. I had to remind myself that. One day at a time. Going to bed at night, "tomorrow is a new day. tomorrow will be a good day." Waking up in the morning "Today is a new day. Today will be a good day" Call me ridiculous, but putting myself back in that place, where I remind myself that each day is a new day and every minute is a new minute to change and make it a better day has really helped me. We can't do anything about the past, but learn from it and move it. I've gotten grounded again and that is what's important. I'm the only mom these kiddos have and I need to keep it together. They don't need the scary yelling, sad, depressed and overwhelmed mom. They need the crazy dancing, silly singing, cookie making, playdoh playing, coloring mom. Life is only what we make it and we've only got this life, so we need to make the best of it....ONE DAY AT A TIME, ONE HOUR AT A TIME, ONE MINUTE AT A TIME!

#3- Aiden- oooooh Aiden, Aiden, Aiden. That boy is sooo darn funny. He seriously cracks me up. He just got his school pictures back and he LOOKS 5! He looks so grown up and so mature. I can't believe in 3 months, my baby boy will be five years old. 5 is big, 5 is huge!! 5 is FIVE!!! AHHH! Right now, he's going through some stuff, we are working through it. Focusing is so very hard for him right now, unless it happens to be about trains. I have made cue cards, social stories to just help him know what he should be doing, and its working for the most part. Its really helping him to stay on task and focus. I've gotten him into feeding therapy to work on this whole gagging, texture issue thing he's got going on. Hopefully he will start some OT too, to help with the focusing, sensory overload aspect in his life right now. Aspergers has been thrown out there, but I don't think so. I see a 4 yr old who loves trains and just can't focus. SPD, ADHD, maybe.....I'm willing to go forward from there, it is what it is, and will be what it will be, but for now we just take it all one day at a time and keep loving him and his hysterical self.

#4- Keegan- Keegy- KeeganMater....Everyday he impresses me more and more. He's coming such a long way. At therapy, a new (but old, she hasn't seen Keegan in about 3 months) came out to get him and bring him in the back, and Keegan covered his eyes and just sunk down on the bench and just when I thought he wasn't going to go with her, something came over him and he stood up said "Keegy school" and went in. He didn't exactly talk to her or interact with her, but he was okay with her being there. Another therapist who Keegy knows well stayed close by, just in case...but he didn't need her. He did great! She made me really realize how far he's come in just the last 3 months. He's got the terrible 2's right now, and he's got it BAD!!! He's jealous of Ollie, he keeps hurting him. He's destroying a lot more things, hitting, biting, all the usual terrible 2 tantrums, screaming, stripping down and running out of the house naked, blah blah blah, times....I don't even know what to times that by, so I will say times autism. ODD much? Holy crap! But it is what it is....and we just keep moving forward. This is a phase, it will pass....to take 2 steps forward and 3 steps back because of the terrible 2's sucks, but once he gets out of these terrible 2's, maybe it will be like 5 steps forward! Have I ever mentioned how much Keegan loves mud. Loves to play in mud, rub it in his hair, all over his body, eat it...you name it, he loves to do it with mud. I love that Keegy and Aiden are playing outside all afternoon and coming in dirty, dirty, dirty little boys. As much as Keegy loves mud, the fire ants love Keegy. Currently he has 29 fire ant bites on him. They don't phase him, he's a tough kid, but his legs, arms, face are covered in fire ant bites. He got stung by a wasp yesterday (thankfully no allergy, but I do have an EpiPen Jr for Aiden's latex allergy. Having that thing makes me feel a little safer when bee stings are involved). Point is, he got stung and even though he screamed, he still killed the thing. Smashed it into the ground. I saw it today. I've got to admit, I am proud of him for killing that wasp. Good for him!!!

Last but not least #5- Ollie. Man this kid. Let me tell you. On this oxygen, he is crawling, pulling to stand, sleeping better, his attitude is better (mostly), his endurance is way up, he is stronger, eating better, just growing in leaps and bounds. I'm amazing. Developmentally he's caught up about 3, maybe 4 months in just 6 short week on O2. His blood pressure and heart rate are normal, he's off of his heart meds! Its like a miracle. Here's the kicker, they still don't know whats wrong with his lungs or him. He's had every test they can possibly ever do with genetics,in 2 years there should be some new testing developed that we can go ahead with, but as far as science/medicine is concerned whatever Ollie has is so rare science hasn't even caught up yet. So our doctors orders are to "make memories." So we take him outside knowing he will get sick and just deal with it, but we only take him outside when its worth it. Going to the pumpkin patch with him was worth it. Did he get sick? Yes. Did he get horrifically ill like he would have in the past? Nope. Did he recover much faster? Yes he did. Thank you oxygen for saving us a week in the hospital! boo-yah! Our other orders "just make it through the winter" Its very, very scary, even for the doctors, to try and get him through this winter not knowing what exactly is wrong with his lung. Something like the flu, RSV, URI could be fatal. So we are trying to make it through the winter and make memories. We re-evaluate in the Spring and see where we go from there, but like I've said many, many times: One day at at time. So if you are sick, then you are not welcome near me or my children...I hope you understand why and you don't think I'm being a total bitch, and even if you do, oh well, get over it! lol

Ollie had his assessment today from the hourly nursing program and he qualifies for 8 hours a day of hourly one on one nursing. I have a lot of mixed feeling and emotions about this. I mean, I've been doing this day and in and day out, pretty much by myself at night while Todd is at work, so why do I need someone to come in and do it for me. He's MY baby, I should be taking care of him, not them. But on the other hand, like right now, I should be making the pump cup, priming the pump, blah blah, but I'm sitting here on the computer....I could have the nurse do it while I am giving baths and then I won't have to do it at 845 at night. It could already be done. I could possibly get a baby sitter and then have the nurse come and help with Ollie and the whole medical side of it and maybe Todd and I could go on a real date. That would be nice, very nice!!! And then there are the little things, like playing outside with the boys and I have to leave Ollie inside, because "its not worth it" to bring him outside everyday and make him sick everyday. I wouldn't have to bounce back and forth between inside and outside. I would at least know Ollie isn't alone inside. I am just so torn. I do this all the time, every day. I don't need help. Help sounds so nice though. I think I am torn because I'm a control freak. I need to be in control. I don't NEED help. I'm not helpless and I feel like I'm saying that I'm helpless if I have a nursing coming 5 days a week. Maybe its a matter of pride. I'm not defeated, but it would make me feel like I'm admitting to defeat or something. I've been doing this for so long. I'm strong enough, I'm tough enough, I don't need help, but I would love it if I got it, but only to a certain extent. I don't want someone else raising my baby. I don't want my "memories" to be of someone else coming into my house and taking over for him. I'm his mom, not the nurse. I'm just really struggling. I was happy at first, but now the more I think about it, I just want to cry about it . And I have to think about Keegan too. What will this do to him. Having this person coming into the house that he doesn't know .I feel like I'd be torturing him . Its so hard being a mom and wanting to do whats best for everyone. I just need to swallow my pride and relinquish a little bit of that control and go with the flow...one day at a time ,right?

"Should I give up, or should I just keep chasing pavements, even if it leads no where?"

-Adele

I CHOOSE TO KEEP CHASING PAVEMENT. NEVER GIVE UP.

Summing it all up

So, I know its been a while. There's just been so much going on, and no time to write. Going to try & do a quick run through now.
We just got back from vacation about 2 weeks ago. We took a road trip from AR to TN to RI. Our vaca lasted a total of 3 weeks. It was a lot of fun...felt really nice to unwind & regroup. Of course I had my one drunken night with out with Todd & Ange~ very much needed. We had a hiccup along the way during our time in TN. Ollie got hospitalized for low oxygen levels (what else is knew!) But this time it was scary. His O2 was in the 60s while he was awake. He got tranfered to another hospital & listed in critical condition. He made a pretty quick recovery though, only 3 days in. Tough guy for sure!
Aiden started school this week. He's already saying he doesn't like school & wants to stay home. He hates they make him lay down and take a nap for 2 hours. Aiden can't be still that long! I feel bad and want to keep him home, but its unrealistic to do so...plus he needs to learn to keep still. On the first day I almost got arrested for walking on school grounds! But seriously I was trying to grab Aiden so Ollie could go to the hospital but the arrogant cop wouldn't let me talk. Assface!
Now, Ollie is back in the hospital for, you guessed it, low O2 levels! He's been poked and prodded so many times. Lots of testing. Doctors thought they knew what it was & did a Ct Scan to confirm and it was NORMAL! Well fairly normal, as normal as lung disease is, but they thought it was a certain type of rare lung disease (chILD) & they were going to send him for a lung biopsy on Monday.  His CT results eft the doctors all speechless. So now we go for a less invasive approach, but still to the OR Monday morning. We'll see what those results show. If nothing impressive, he may get out of here Tue or Wed....and he gets his Oxygen! I never thought I would be so happy to get O2! He will go for a sleep study in a few weeks (they've canceled & rescheduled 2x on us now). Depending on what that shows, our next step may be the lung biopsy afterall because although the CT Scan didn't show evidence of chILD, it doesn't mean he doesn't have it, just means its the kind that even more rare. He's got a long journey ahead of him, but damn it, he's so strong & such a fighter! The one thing I'm the most upset about right now is he is no longer allowed to have feeds by mouth with liquid. So no bottles, no sippy cups...and we've worked so hard to accomplish this goal. He just struggles way too much to breath & eat, even on O2. He is allowed to have real food though, so now we are working on that more & he is doing suprisingly well!
Keegan, that boy! Let me tell you, potty training him has been a breeze. Its all about routine with him. Coming back from vacation was enough to shake up the routine & create a new one. He's done so awesome. He's still afraid to poop on the potty, but he eventually does it. I'm so proud of him!
And lastly, my friends that I've made here are so friggen awesome! They really are there when they say they will be. They have been so wonderful to us this past week. Taking the boys & helping out on short notice! Its been fabulous knowing we have people to count on, that military family. I love ours!

Time Out

I have noticed that I have been yelling, A LOT, lately and using time out less. Time to get back to using time out more effectively, because the more I yell, the worse things seem to get and I don't like that.

I told the boys I am all done yelling and they will be sent to time out more often if they don't straighten up. So far the time out chair has been used quite a bit this morning, but seems they've figured out time outs suck and are acting better as far as the fighting goes. Also doesn't help that I threatened to take away the trains the next time they fight over them.

A good day

Today was one of those days where I felt like my life was normal. It was a happy day. The boys slept in late (which I was very happy about since Ollie was up coughing a lot last night). He was the first to wake up at 7:25, followed by Keegy at 7:45 and then Aiden at 9:00! Ollie had therapy 9-11 and Keegan had therapy 930-1200. I did the drop offs and went to the gym. I ran over 2 miles today, which I am pretty happy about considering I haven't ran in a while, just been doing my Biggest Loser Cardio Max DVD. I miss running. I miss the way it makes me think, but clears my mind at the time same, I miss the natural high I feel afterwards. I just hope that things in our live stay semi settled down so I can hit the gym everyday and go for a run and feel human- feel normal! Todd picked the boys up from therapy today, which was wonderful. I didn't feel like I had to rush back from the gym, I was able to take a nice shower, and get dressed in peace. I baked today. I haven't baked in what feels like forever, but maybe its been a week. I've been craving banana bread so I had to make it so Ollie can try it, and Keegan can eat it. I had a bunch of bananas and I just got more GF flour so I figured I'd make 2 different loaves. Its a good thing too because that GF flour, for some reason, makes the bread fall apart. I cut the loaf with regular flour and it cut beautifully. Cut the GF loaf and its just falls apart, so its just stuffed into a zip lock bag. Keegan doesn't care anyways, he smashes it to pieces before eating it. He doesn't know the difference! I think next time I will just keep the loaf whole and cut it as needed. Lesson Learned!! I made chicken parm sandwiches from scratch today, which were amazing. I sat down and played Playdoh with the big kids today while Ollie napped. (I haven't done that in a long time). I let the kids eat "SpaghettiO's" for dinner because that's what Aiden wanted. Of course I had to make Keegan's look just like Aiden's so I'm cooking, and cutting corn penne pasta into little circles....and he took maybe 2 bites and decided he was "dooooh" (AKA DONE). Ah the things I do for these boys! LOL. I love that I got to sneak in quiet time with my amazing husband today, even if it was only for 5 minutes, Keegan and Ollie were napping and Aiden was watching "trains on videos" (AKA- YouTube- TRAINS). But it was great to just spend a few minutes together without the kids crying, screaming, whining, asking for one of us to play trains.... which I did today. I took the time to play trains. I HATE playing trains. Its annoying, and boring and I hate trains, but I did it and it really was a big deal to Aiden, which makes it worth it to me. Later on Ollie and I even went into the room to just watch Aiden play trains, and even that was super cool. It gave me a break, Ollie was entertained just by being in the boy's rooms and Aiden was telling him all about the darn trains while I zoned out. And forget it when Keegan is involved....its trains, trains, trains all day long. Creaky Cranky, Thomas, Percy, James, Edward, Gordon, Diesel, Toby, Bill, Mavis, Emily, Salty, Oliver, Henry... the list goes on and on. I know all the trains....I hear about them all day, they watch Thomas movies, Thomas TV shows, play Thomas the Train....welcome to the Island of Sodor! Okay, enough about trains! LOL!

Seriously though, its been a good day. I was very happy to get the phone call from the pulmonologist office that they received Ollie's medical records from NM finally. Now I just need to wait and give him time to read them to come up with a treatment plan. They just need to hurry up and get this done before we leave for vacation. I can't have them decided when I'm all the way in RI they want to see him the next day to do whatever they need to do!

Tonight & Monday are the only night of the week I look forward to watching TV now that its summer. Love Bites is on tonight and I save all my laundry folding for tonight, so I can stay awake to watch it, otherwise pretty sure I would fall asleep on the cough. So I'm off to pop some popcorn, grab a tall glass of ice cold water and all 3 laundry basket and watch some TV!

Looking forward to more good days like today!

Oh and if anyone has any ideas on how to single handedly put eye drops into a feisty 12 month old's eye and actually get them IN the eye, it would be fabulous if you'd share! On top of it all Ollie has pink eye! (But would we expect anything less? Nope!)

Frustrated

I'm just feeling so frustrated with everything involving Oliver's medical. I came very close to slapping a resident across the face today, and now I get a call from the pulmonologist at 8pm telling me he STILL doesn't have a treatment plan for Oliver and needs his medical records from New Mexico...WHAT??? You have GOT TO BE kidding me. I have requested those damn records 6 times now. I even had the medical home nurse fax over a request and call for the records, and the pulmo still doesn't have them. How the hell is this possible? This can't be happening. I gave him the info to fax over a request for himself because at this point I am just done. This is what is holding up his treatment plan, I'm pissed. I'm about to fly to ALB myself and get the records. I came to AR with what they gave me, the important stuff supposedly but no info on his NICU stay, when he got admitted and they ran test after test after test on him! No MRI results, no echos, nothing...so what the hell did they send me with that was the "important stuff"?? Ah I hate New Mexico more and more! Its just bullshit is what it is and I'm so frustrated!

Genetics

Today we saw the genetics doctor. Getting there was its own adventure, so I will start there.

Leave the house at 7:15 for an 8:00 appointment. It takes 20 minutes to get there I figure with traffic, since I knew where I was going (I pass "the exit" everyday on my way to the hospital and the directions are simple) and that leaves me time to feed Ollie while we are in the waiting room. Awesome plan that didn't go as awesome as I planned. Apparently there are two exits for Cantrell Rd, 20 minutes apart from each other. No one told me this, I was told take Cantrell, take a left at the light and drive 3 miles and its on the left side. Let me tell you, the directions made sense, I did what they said, until I ended up in the ghetto of downtown, I passed the Salvation Army with lines of homeless people outside waiting to maybe eat breakfast. Surely the genetics office can not be in this part of town. So I called up my friend, who got on Google, trying to figure out where the hell I was and where I needed to be. Turns out I was still 20 minutes away from my appointment. No biggie, get back on the highway, get on highway 630 and go from there. Well, the only place I could figure out how to get back on the highway was the exit AFTER 630. So I just got on the highway after the exit I needed to take, took the next exit and by some crazy ass way, I ended up at the hospital, which was great news because the hospital is off of 630 and I knew my way around there. Somehow I managed to find 630 by totally missing the exit I needed and driving around aimlessly! Eventually I made it to my appointment, so upset I was almost 20 minutes late. We waited 4 months for this appointment, and I was so afraid they wouldn't see us (even though I called to tell them I got lost) or that they would rush us out of there since we were late. I get in, check in, sit in the waiting room and almost right away a nurse comes out to get us and I apologize for being late. Her response "Oh I didn't even realize you were late. We are just ready for you now" REALLY?? I can only laugh I guess.

So, anyways, enough about my wonderful adventure there. The genetics doctors were great. We saw two doctors, we had some serious language barrier struggles going on, but we worked through it, I had them write stuff down when I couldn't understand what they were trying to say, and truth be told, they could have spoken clear English and I still wouldn't have understood the words they were trying to say!! LOL. They think they have an idea what's wrong with Ollie. They are running a panel of test and they should take between 1-8 weeks get all of them back. Hopefully in 2 weeks we will be leaning more towards a definitive diagnosis, and do more testing to narrow it down and hopefully in a few months we will have a true diagnosis. We've waited almost a year to find out what's wrong with Ollie, and now that I know its only a few more months until we know, I just feel like I can't wait that much longer...but we've been waiting 10 months, what's another 3??? Its antagonizing is what it is!!! It makes me sick knowing we are so close to knowing. I just want to know. I have heard the question "what will knowing change?" so many times over the last 10 months that I've been saying "I just want to know what is wrong. I want a real diagnosis, not just a bunch of mystery diagnosis that are part of something bigger that no one can figure out" I want the final piece to that puzzle that's going to pull this all together. I want to know if the outcomes the pulmonologist gave us are realistic or knowing that he has a particular syndrome will change those outcomes. Is there a simple treatment for all of this, or is it worse then expected? We won't know until we get that diagnosis. And as much as I don't want to rush my children's lives away, I want these next few months to hurry up so we can know...

Vomit

Yes this post will be about vomit so if you can't handle even reading about vomit, please don't read...

So since Oliver had the Nissen done (where they tighten the esophageal sphincter so he won't reflux anymore, it also prevented him from being able to vomit. So when he starts dry-heaving, its him trying to vomit. He is the cleanest "vomitter" (for lack of a better word). I stick the end of the big 2oz syringe onto the burping tube and insert into his g-tube and that's how he vomits. Nice and clean, right into the syringe. Dump the syringe into the sink, rinse and we are good to go!

Well, today was a different story. I thought for some reason it would be great idea to rock him after he had a 4oz bottle... BIG no, no!! He starts dry-heaving. I plug him up, vomit starts coming into the tube and I didn't think it would be SOOO MUCH! Luckily I have a bottle close by so I grab it and I'm trying to unscrew the cap so I can pour the vomit in it without unplugging him. In the process, I tipped over the syringe and vomit pours all over the floor. I get the bottle open, he finishes vomitting, I put the syringe into the bottle. Unhook little man, and set him on the floor. Thinking its just a 2oz mess to clean up, no biggie, I hop up to grab a towel and a bowl of warm soapy water...and my FOOT KICKED OVER THE BOTTLE.... DAMN IT!!! another oz of vomit on the floor, in an entirely different spot! GROSS!!

I believe I got the stench of puke out of the carpet, but seriously, I just went from making my kiddo the "cleanest vomitter" to the messiest vomitter! At least when Keegan pukes he knows to do it on the floor in the kitchen, or on an area rug. Aiden knows to go to the bathroom....Oliver, through no fault of his own, "pukes" on the living room carpet. Fabulous! LOL