Never Lonely

Never Lonely

Monday, May 28, 2012

No Whitty Title This Evening..



I realize it has been a week since I updated. Time flies when your having fun? The beginning of the week was rough. Last Sunday night we were in the Emergency Room with Audry. Her fevers wouldn't budge with Motrin and Tylenol. She was inconsolable and heart rate was out of control. [190s.. resting] Fortunately I work in the ER so our wait was short lived. As soon as we got back to the room and in the fluorescent lighting, I noticed Audry had blisters under her tongue, inside of her cheek, and on the tip of her tongue. No wonder she wouldn't eat!! Her temperature was 102.8 when we left the house and by the time we made it to the ER she was up to 104. She had hit her cap for Tylenol, and Motrin. The Motrin also made her constipated. Poor girl. We were in and out in roughly 3 hours. Sent home with "kid quarters" and a follow up with her pediatrician. It took 4 days to for the blisters to go away, and oral feeds to resume. Couldn't have been more secure in my decision to do the proactive g-tube than in these moments. She wouldn't even take her pain meds orally. The g tube I'm sure will save her life more times than not. Aside from the AA diet, this is one of my best decisions for Audry. [The cough assist, and suction, weren't really optionally, they came with the diagnosis.] To any newly diagnosed parents out there reading my blog, or even been doing it awhile, and are on the fence... Get the tube. You never know what life will throw at you and Audry would've been hospitalized without it. Fasting is bad for our kids, but total dehydration is even more detrimental. When it comes to SMA we chose, well I chose, to be proactive about everything. I'd rather have it and never use it, then need it and not have it. The damn surgery was all of 20 minutes and well worth it.




 Random Video of Boog "Moving her Legs" 



The rest of the week, not going to lie, I can't remember. I do remember the last few days. We went to a BBQ, and hosted Game Night over here. The BBQ was refreshing. While I'm a homebody and thoroughly enjoy the confinement of my 4 walls. It was nice to get out and talk with other adults. My right arm did however get more sun than the left. I'm killing it with tan lines this year. At the end of the summer hopefully it's all managed to even out, or at least fade so the random tank top lines aren't as noticeable. The kids had a blast. Emery was relatively well behaved. The last couple of weeks have been a lot of reiterating
who the boss is. Emery seems to think its her. She had a minor meltdown when Michael took away her plate of cake, but we were able to calm her down enough to eat her dinner. Other than that I was very proud of her. After dinner we sent the boys off for some kindling and started a camp fire. The kids roasted smores. Emery was scared of the fire, and spent that portion of the night in my lap telling me she was hot. After 15-20 minutes she informed me she was tired, and was going to stay the night at Bobby's house. She had a blast with those girls and decided she wasn't ready to come home. Fine by me, cause Audry eats by tubey at night, and without Emery here I managed to sleep in :) When I came back the next morning to pick up Nemo she said "Mommmy!, hi!" I asked if she was ready to come home? Her reply: "No I'm gonna stay here for alotta while" Not her most educated statement but still cute to boot. I ended up bringing one of her daughters back to the house because she wanted to "help Emery clean her room"


 I must say I do love well behaved children. When Emery went down for a nap she was begging me to mop my floors, and do the dishes. I finally got the nook done!! Definitely been talking about making it a kid zone for a year. Emery loves her new lounge. It's totally girly, and I'm thinking with the colors it will grow with her til high school. It's very fun! The best news is now I can send her upstairs to watch TV and I can catch up on my shows. No more Dora! When we had game night it was hit with all the kiddos. Definately came to check on them around 1am [yea we went HAM] and all 5 kids were laid in a row asleep. Definitely should've gotten a picture. It also gives me leverage. Emery has one more thing that she will lose for bad attitude. We have been on her, and the last 2 days she really has done a 180. It's been "yes, thank you, and please" as opposed to "what?, no, and hissyfits" I think she's going to be alright. Lol.

Nursing started last night, and honestly couldn't have picked a better night. Not sure why my DME order isn't here but we are out of feeding bags, and as much as I'd love to get up every hour to bolus a feed while she is asleep, I'd rather not. Going to call Olympic Pharmaceuticals in the morning. Of course it would get screwed up over a holiday weekend. I also think I'm going to like this nurse. Audry has to get used to someone being in the room with her. She hasn't been sleeping well at night. She did however nap majority of the day. Sleepy girl. 


We FINALLY got our Support Audry SMA bracelts. They couldn't have turned out better. Lots of people are confused as to how to donate. Here's how it works:

In state within driving distance $2.00
Out of state $5.00
Vanvoucer, WA $2.00 
[If you catch me in town or pick them up from my moms]
Cache, Lawton, Ft. Sill, Tipton, OK 2$
[If you meet my little sister to get yours]
SMA Moms 1 for 1 swap

Basically if you want it mailed to your front door its $5, If you can meet someone to pick it up its $2. Donations can be made online to http://www.gofundme.com/AudryMaxineAgainstSma. If you find me on Facebook I'll give you my address as well. Whichever is more convenient. Donations are going to help us by a panthera micro wheelchair for Audry. The goal is to get her independently mobile. Insurance won't pay for the chair and it's the only one light enough that she can push, only catch is its made in another country. We are looking at about 4,000 to pay for it. The kicker is we have to act fast. With SMA if you don't use it, you lose it. Got to get those arms moving so we can maintain some strength. Anything leftover after the wheelchair fund is met will go towards adapting our home, and vehicles for Audry later down the road. Thanks in advance for anyone who donates, and to everyone that already has your bracelets will be en route as soon as I get a new debit card and mosey down to the post office. 



"Embrace The Suck"

Friday, May 18, 2012

Montezuma's Revenge


Today started as usual, cup of coffee with the roomie, made the formula and went to wake up the girls for school. I walk into Nemo's room and not only was she in a great mood, she was fairly pleasant. After giving her  her clothes I walked out of the room to give Audry her bottle. Only to hear Emery scream "I'm going to throw up" I ran back to her room snatched her up and enroute to the potty, explained we through up in the toilet. I walked out of the bathroom thing she was being a drama queen only to come back and find her bawling her eyes out wrenching, and covered in her vomit. Hair, clothes, toilet. :( I started the bath stripped her down and stuck her in the tub. Grabbed Audry real quick cause she was sweaty. Took Boog's temperature and it was 99.4. Clearly Emery wasn't going to school. Audry has been running higher for the last month. So I wasn't concerned. With "normal" kids, by normal, I mean "non Boog" mood would be a great indicator as to how they are feeling. That is never the case with Audry. Always happy, always smiling. I scooped Audry out of the tub and took her to get dressed. I hear another scream from the bathroom and Emery had tossed her cookies in the bath. She begged me to take her out. Mind you her hair was still disgusting. I cleaned the tub, refilled it, washed her hair and put her in new jammies, and most importantly a pony tail. Lord knows if we were gonna puke we were sparing the hair. It's easier to hose off the body than do a full bath. Took Emery downstairs set her up on the couch, with her "barf bucket" a pillow, blankey, and pedialyte. At this point I was torn between whisking Audry off to daycare or keeping her home in case she had it too. I gave her a bolus of her formula to see if she kept it down. She did and was giggling, so opted to take her to daycare.

I get Audry to school and let the daycare know to keep a close eye on her. Let me know if she has any sick symptoms. God forbid she pukes call me immediately. The last thing I want is for her to choke, or aspirate. I headed home. Before leaving I asked my buddy who was crashing here to listen for any wrenching or cries from Emery and assist where needed. I walk in the door to find the couch empty, my buddy racked out, and "Mommy, help" along with crying, and more wrenching. I fly up the stairs unsure of which of our 3 bathrooms she's in screaming her name. I found her in the master bath throwing up on the floor. I couldn't figure out why until I tried to get her to use the toilet, after all she was standing right next to it, apparently it was coming out of both ends, Emery yells, "NO MOMMY THERE IS POOP IN THERE" [her poop] So yes, she chose the floor and herself over the poopy toilet. Kids. God loves the children. I flushed the toilet and let her finish there. Started another bath and put her in my tub. The ponytail worked like a charm by the way. :) As I'm cleaning up her vomit, mind you I don't do puke, weak stomach, I start wrenching and Emery starts bawling, "Mommy your sick too!!!" No Emery, mommy has a weak stomach I'm fine. As I'm cleaning it I realize somehow she managed to get it on the cabinets, the floor, the wall, the toilet, and of course herself. I decided at this point I needed to bleach the entire house. I poured some shampoo in the water for the bubble effect and took to laundry. When Emery was ready to get out, I got her dressed for the 3rd time and set to cleaning her room. My first stop in my clean spree. My plan was to quarantine Emery to her room, and make sure the rest of the house we disinfected. Her appointment was at 1040 and seeing as how it was now 7am. [p.s. i woke up at 345am] I had time. After finishing the upstairs, I started the downstairs, and it was time for the appointment.

On my way to the appointment I called the daycare to check on Audry and the director was about to call me to let me know she had a fever of 99.8. Which I already knew that. When she told me it was in the armpit, and she missed snack and lunch because she was asleep, I told her I was on my way, but I had to take Emery in first. I didn't have time to pick her up before the appointment without Emery missing hers. After Emery's appointment I set off to pick up boog, I called in advance and they let me know she was "inconsolable before nap time" my happy non moody princess was moody. Yahtzee, had they told me that before you best believe I'd have taken her with us. We get home and I gave Audry a bolus 2 oz of pedialyte crossing my fingers she would hold it down. She did. She then ate 2 oz of her formula. After going 6 hours without food. I put her on a continuous feed for, for the next 24 hours she'll get one oz an hour. Don't want to put too much in her tummy and have it come out. Audry's low grade temperature turned into a 102* fever. After some and a nap she came back down.

Emery's been over compensated, under compensating all day. She's feeling better for the most part. Wish I could say the same about Audry. Currently her HR is 160-180 and after 2 rounds of Tylenol we are sitting at 101.6. She hasn't thrown up yet, and her o2 is holding firm. I am not happy about how hard she is working right now. Definitely going to either sleep in her room on the floor or sleep downstairs on the couch with her. All the equipment is down stairs so if I don't feel like moving it, I'll reside on the couch. Not like it matters, not going to get any sleep tonight. On the bright side I did knock out some unnecessary spring cleaning...

"Embrace The Suck"

Thursday, May 17, 2012

Cranky Babies & Cranky Mommy

First day back at work, in what feels like months. I woke up this morning at 3:45 not a happy camper. My roommate turned on the coffee pot and over our morning smoke I asked how he does this every day. Lol. I'm so used to not working, or having appointments that this 8 hour shift drained the life out of me. It also gives me less to blog about because I didn't see the girls all day...

Picture of the girls from a year ago <3 
I can however share with you how cranky Nemo was this morning. She didn't want to wake up either, and frankly, I didn't blame her. She was in my bed because she peed hers last night. We are back to pull-ups. Three accidents in 5 days, we will try again in a few months. Anywhos, when I woke her up, she looked at me and rolled over. Rude! Doing what any mom would do, I snatched the blanket off of her. She proceeds to throw a hissy fit about being cold and starts bawling her eyes out. Woah. Not the response I was hoping for. After I got her moving she refused to get dressed. "Mom, I'm going back to bed." After some harsh tones, I persuaded her to get dressed. One down, one to go. Prior to getting Emery up, I flipped on Audry's light and gave her a bottle. When I walked back in the room she was so sweetly nestled back in her blankets, and racked out. Jeez O Pete. I tap her and she pushed my hands away and made an ugly face. Fortunately some tickling and snuggling was all she needed to rise and shine and give me that beautiful Audry smile. After changing her diaper and doing her morning treatments. I went to check on Emery, who by the way, was still in her pull-up giving me a dirty look. After dressing her myself, I lugged both kids down the stairs because Emery's "legs weren't working" Trust me it was easier to carry them both down, then to try and convince her otherwise. I got their shoes on and we are out the door. --Almost. Emery was thirsty. I gave her juice and if she drank it any slower, she would've been going backwards. Irritated I asked her if she wanted mommy to get fired, and we'd have to live in a box on the street. She replied with a "no" but didn't drink any faster. After some more dirty looks, she finished the damn juice. I loaded both girls in the car and set out for daycare. Emery fell asleep on the 10 minute drive and again wasn't very pleasant. I grabbed Audry and when I got to Emery's side, she wouldn't wake up. Pretty sure she was being a tyrant and messing with me. She over dramatized getting out of her cars eat and had a full on meltdown in the parking lot. I get the kids inside and Emery is still going. Dropped Audry off in her class, and sat Emery down with some crayons... This was just from 5am-6am. The start of my long day.

I got to work on time, shocker, I know. We seriously had no patients. I was bored stupid. The day dragged on but finally it was 3 and I set off to pick up the kids. The girls flip flopped after school Audry was tired, and Emery was unusually pleasant. "Please, thank you, I love you mommy" Creepy almost. I re-fried leftover fried rice for us. We had dinner and the kids went to bed. Neither of the girls put up a fight. Aside from the fact Audry is unable to walk, and her morning treatments, today felt almost "normal". She's not sick anymore and I'm not on edge thinking "this cold, could be her last" I know it's morbid but i'd be a fat mouth and a liar if I said it had never crosses my mind when her oxygen saturation sucks. It was just a good day of bad moods. I dig it. :)

"Embrace The Suck"

Wednesday, May 16, 2012

Brace Yourself...

May 12, 2012
Audry was feeling better and made it through the night with zero desats. Decided we would go to a birthday party. We went  to target to grab giftcards, and momma spent waaaaay too much money, on little girls close. Thankfully, I bought the girls swim suits because the party ended up being at the spray grounds on post. Emery had a blast. Keeping eyes on was difficult. Seeing as how Audry wasn't diggin the ice cold water shooting at her face, she spent the afternoon in her bumbo with the adults. Emery on the other hand thoroughly enjoyed the ice coldness. After losing Emery a few times, we agreed that she would check in every "15 minutes". Emery having no since of time came back every few minutes which worked better for me anyhows. She kindly let me know as she was running up that she was alive, and no one kidnapped her, and then she was off again. Mama got a wicked sunburn. While I made sure the kids were sunblocked, twice. I neglected myself until it was too late. I also remember sunblock when I see red. Not my brightest idea to date.. After running around all day, water gun fights, and cupcakes, the girls racked out on the way home. Got them home and they went straight to bed. Emery wasn't happy to wake up enroute to her bed. Apparently she wanted to stay at the "water park".Cried herself to sleep. Good thing she was exhausted, it only lasted a few minutes. Audry was in need of a cough so her wake up was a little more brutal. While we took the suction with us, the cough assist isn't portable so we left it at home. None the less the night without incident and after a batch of aloe vera, I set off on google, in search for a real water park with a wading pool. I came up shorthanded, Wild Waves isn't open til after memorial day. I then proceeded to find something wateresque [Im aware that is not a real word.. go with it] to do. We settled on the Spanaway Lake. Which brings me to....

[Mothers Day] May 13th, 2012

I woke up at 1000, breakfast was made, and the girls were already fed. Smiley face. After a cup of coffee and a few self motivating pep talks, I finally conned myself into getting moving. It may have been 1230 and we may have made plans to meet at the lake at 1300. [That's 1 o'clock for the civilians] Jessica arrived and while the kids were getting ready the bags got packed. I took off to Rite Aid to get some tegaderm for Audry's g-tube site. At right aid I got side tracked by beach towels, a cooler, case of Mt. Dew, a bathings suit cover, redbull, and coffee, I checked out only to realize I didn't even look for tegaderm. Go figure.  After another hour at the house trying to fanangle 4 kids into swimsuits and finish packing bags we managed to get ourselves loaded in the car. Only to make it 15 mins down the road to realize I couldn't remember if I shut the front door or not. The whole weekend was pretty much a brain fart. 

After arriving at the lake we claimed our spots and set to sunblocking the kids and oiling ourselves up. I had Jess put sunblock where I was already burned in an attempt to even it out. Not sure where she went wrong, but I definitely have a white "M" on my upper back a midst the bright ride. The water was pretty cold but the older girls didn't care. Audry screamed "Owie" everytime it touched her legs. She's not a fan of outdoor water fun. Every couple of hours I did bolus some water to keep her hydrated, and take her down to the water to wet down her hair and keep her cool. It may have only been 80 degrees, but sitting in the sun was taxing on me, can only imagine how her little body was doing. Yes, she wore the shades for a good chunk of the day. Never met a kid to keep sunglasses on, until this one. :) Emery, being the socialite she is, of course made friends, I caught her terrorizing some family in an attempt to play with their toys. After an hour of watching her "play " with the little girl, I told her to go swim. Of course she gave me lip, after all she is 3, and I explained that "we didn't come all the way to the lake for her to play with her toys, by golly we can do that mess at home. So go swim, or we will go home." She voted swim. Around 7 we decided it was time to rap it up. Emery as usual was crushed that the water activities were coming to an end. The rest was a repeat of the night before. Rack out in the car, and rack out at the house. Definitely my favorite mothers day to yet. 


May 14th, 15th, 16th
These three days are a blur. Its been chaos at the house. Jess, Madison, and Mason have been crashing here and Emery and Madison are giving us a run for our money. A few highlights.... 
Physical Therapy 
                 

Every Tuesday we go to PT/OT at Children's Therapy Unit. Audry works so hard to do the littlest things. Believe it or not this video is an improvement. I'm so proud of boog. She still hasn't mastered pushing the balls in, but her reach has improved. Watch her tounge, its like it gives her that added "umf" she needs. :) She played catch, pick up sticks, and threw a hissy fit when they wanted to do some tummy time. Audry is not a fan of face down activities. It's hurts to see her struggle, and I do my best to focus on her strengths and not her weaknesses. She is a very strong little girl, and to me it's indifferent. I just don't like when the physical therapist say things that are clearly observations, and I take them negatively. Boog cheers me up though. The next video is of her dancing. [please ignore the offkey singing.. really it sounded great in my head] by a few highlights, I mean one. I'm too tired to remember the rest. I do know it has been a really happy last few days.  



                                            

Definitely making the best out of a shittay situation.. 
"Embrace The Suck" 






Friday, May 11, 2012

Desats, Dr's appointments, and Yogurt :P

Yesterday was a bad day. Right around the time I normally to my blog I was sidetracked by Audry's awful stats. It was 11 oclock before the ladies of the SMA community came to the rescue. She sat at 93 for almost an hour, and nothing was helping. She was also wide awake which is unusual. We ended up doing postural drainage and after a few minutes her oxygen saturation was back up to 100%. Happy mommy let baby sleep. Sleep she did and no more desats. I woke up at 9am confused as to why my 2 children let me sleep that late. Audry was content playing with her tubie in the crib, and Emery helped herself to 6 tubs of vanilla yogurt. No worries diabetes is not in her future, they were the small ones ;) None the less I couldn't punish her because had I woken up at a decent hour, I could've made her a breakfast of champions. Yea, right, who are we kidding, it would've been more like, applesauce or maybe even yogurt. [Just not 6 containers, portion control. ha!] I will retract my last statement about the bad day. It was more a bad night. Jessica came over again yesterday and while at Audry's doctors appointments, the crazy women went to town on my downstairs. I would marry her if it was legal. It looked amazing. We had a nice dinner and then I gave the kiddos a bath. Finally got a video of Audry in the bathtub w/her cookies covered. Enjoy :)




Today was a better day than last night. Took Nemo to school and came back to the house to get ready for the pulmonology appointment. With all the issues we've been having with her sats it was time to see the specialist. We've gone back and forth on the bi-pap since diagnosis. I want it, he doesn't think she is there yet. After much deliberation I agree with him she doesn't need it, but stand firm on I want it. He's agreed to getting the DME out here with the mask and when she is healthy doing a 2 day inpatient to play with the settings and get her where she needs to be. It will be used for sickness only, he doesn't want us using it to ventilate. Something about her fighting the machine because her lungs are strong as is. When our kids get sick they work twice as hard to ventilate themselves. They just need rest and bi-pap allows them to do so. It is a non-invasive means of support that can be used in people who are in respiratory distress but don't wish to be put on a ventillator. IE- "Audry Podry". I'm glad we are on the same page. I think that Dr. C is a very good doctor, and one of his best quality is the the ability to listen to the parent, and work with them, instead of against them. We also got to see both the developmental pediatrician, and the gastrointestinal doctor. Audry remembered Dr. Grambling, he did the surgery, she was nice so long as he stayed at a distance. She always flirts with him but prefers if he keeps his stethoscope at a distance. She's not a fan. Slightly traumatized, ever since the surgery she wigs out if you come at her with it. This was the first time the Dev. Ped. has seen Audry since her diagnosis and got to see all of her improvements. I was the proudest mom showing off all her videos, and her vocabulary. It's the little things with SMA. Audry beating the odds brings a smile to my face. We are still working on getting nursing paid for by ECHO. I'd settle for a night nurse, or even a nurse to go to school with her and cough and suction her there. While, I'm perfectly capable of doing it myself, clearly, just saying a little free help is always nice. Will find out more on that in the next couple of weeks. We did get her stander approved by insurance and I CANT WAIT TO GET IT! DME called yesterday to approve the order. My response, "hell yeah!" I'm looking forward to seeing her cute butt upright. Gonna teach the school how to use it and what to look for fatigue wise. I figure at recess they can get her upright and push her around. It will be like "running". :) Plus she'll totally go from being the smallest kid in class to the tallest.. ahahahahah.




One of my favorite things about Audry is her ability to make everyone fall in love with her. She touches more people in seconds than I will in a lifetime. I'm sure I've said that before, and I'll say it a hundred more times. If I had a nickle for every time a stranger stopped me to tell me how special she was, well my house would be paid off. I've started handing out slips of papers with the blog info on it. So hello new friends! Welcome to our world. :) She may have Spinal Muscular Atrophy but she makes it look easy. God love her and her charming self. The last two days have been emotional, hell the last 3 months have been emotional. This life is emotional but its our life. Our life that I feel blessed to be a part of. I thank God for giving Audry to me and not to some crackhead who wouldn't take care of her. The sweat, the blood, the tears, are all worth that precious smile from this joyous little girl.


"Embrace The Suck" 

Wednesday, May 9, 2012

Turn that frown upside down

"But here is what i from the patient point of view...... bad days will exist.... it will always be hard...... no one but you will ever take care of Audry the way you do...... Bad days are ok to have because those are the days that remind us not only why we are fighting but why we dont give up and why we dont stop at im tierd..... We fight We love We cry scream throw things it is ok.... whoever tells you any different smack the shit out of them..... because they are either lying or don;t truly have a f**king clue, I luv ya girl.... you can do this..... You are a damn good woman and mother.... and friend too......keep your head up....."-Kyrs Greenlee 


Today started out pretty rough. No idea what came over me but somewhere between the time I woke up and 11 o clock. I went into "breakdown mode". I havent been there in awhile. Yes, even supermom has breakdowns. I'm really over Miss Audry being sick. The secretions got the best of me to say the least. The looks I get when I take my daughter in for a "runny nose, and cough". If it was Emery I'd tell her to drink water and drive on. For those of you who don't know, let me explain. SMA has a nasty way of taking your every day "cold" and turning it into your worse nightmare. The kids not being able to cough up the mucous it sits there creating bacteria. It also has a tendency to move rather quickly to longs without intervention. We had an earache turn pnemonia in less than 24 hrs. [prior to dx]  Now that we have all this fancy equitment aka torture machines, boog hates, we can for the most part keep her well. By well I mean out of the hospital. When "colds" are prolonged I tend to get a little nuts. Today was that day. I know that I can't change her SMA it's here and its not going anywhere, however I think I'm allowed to hate it. Audry is a blessing, she is amazing, her SMA can lick my toe. In all reality most days are "normal" I may forget her age because she didnt hit her typical milestones, but she reminds me with her cognitive abilities. The girl is wicked smart. Audry being sick gets to me. Really hoping this blows over soon. While work is supportive I fear they may not be so supportive after awhile. I think staying home helps stir the pot. I'm a homebody but I need adult conversation. I start to go cookoo for cocoa puffs if I just hang around my girls.



So after sulking, paying bills, a few self pep talks, and a vanilla dr. pepper from sonic. Jessica came to my rescue! With her help I was able to take my bad attitude out on the master bedroom and Audry's room. She took her good mood out on my bathroom. I'm one of those people who gets moody when the house isn't right. Anyone who knows me knows my BIGGEST fault is laundry. It goes in the washer, the dryer, and then finds its way to my bedroom floor. All dirty clothes hang out on the bathroom floor. [Don't judge me, I'm a single mom!] I hate being in my room and only go in there to get dressed, and sleep. I'm proud to say that I'm sitting on my bed typing this as we speak. Not only did I clean the piss out of it but I also rearranged it and it looks F-A-B-U-L-O-U-S!


Audry of course did amazing today. A midst this awful cold, coughing, phlem nastiness. She is still smiling and her oxygen saturation is that of a normal healthy kiddo. She had a low grade temp and her heart rate was in the 120s. She smiled, she laughed, she slept. She even gave her emotional mommy some hugs. [but no kisses]  All in all when I started my day, I was on a downward path of destruction. I'm feeling alot better, more hopeful, but dog tired from the emotions today. [being depressed=exhausting in case you didn't know.] Tomorrow is a new day. Always thank God for the bad days because at least we woke up, right? ;)


"Embrace The Suck"


Tuesday, May 8, 2012

More Boogies


Another day full of snot, congestion, and crud. God bless her soul she seems to be coping well. I still haven't heard from the doctors about the whooping cough yet. In an attempt to try and clear some of this yuckiness, I've started her on the Zyrtec they gave us when they thought her influenza B was allergies. Willing to try anything at this point. Supposed to go back to work tomorrow instead we will be hanging out with Dr. V.  I also bought a humidifier today. Trying anything to get her to breath normal. After her nap today she was completely drenched in sweat. You'd think she ran a marathon they way she smelled! After nap time was bath time. Before bath time we turned the guest bathroom into a sauna. Let the steam fill the room and then "hot boxed" Miss Audry. It seemed to help a bit during bath time but shortly after during lunch time she was back to ick. We will see if the humidifier helps any. Crossing our fingers!! 

Got a call around 1120 from Physical Therapy. Apparently it's Tuesday, SUPRISE! Needless to say we missed our appointment. They offered to reschedule this week and I said I'd call them back Thursday or Friday, only to realize I don't have their phone number. I know.. Awesome! I think she will be okay without one week of therapy. In 4-5 more weeks Audry will get to do water therapy! I couldnt be more excited! She LOVE LOVE LOVES the water. I attempted to get a video for you guys but the little booger kept kicking the rag off her cookies. I'm all about telling her story, just don't want her cookies plastered on the world wide web if ya know what I mean. So you shall have to settle for yet another boog photo :) 

Managed to get a sneak peak atour pictures from Sunday. Not gonna lie, they are pretty awesome. Thank you, you know who, for setting it up for us. It means a shit ton. :) Also, if anyone in the Ft. Lewis area needs pictures done, let me know. Amanda is a photo genius. Seriously, love her work. 

The rest of our day was filled with more 16 & Pregnant and Army Wives. We seriously lead an extraordinary lives. On the way to pick up Emery from school; we stopped off at right aid to pick up a few things. Ended up getting boog a new pair of shades. Every time I turned right in the car I got a mouth full from the diva. She seemed to really perk up. Everyone at Right Aid thought she was such a ham. When we got back to the car she decided she wanted to drive. Seeing as how she didn't have a license I let her sit there and snapped some photos. Got some weird looks from passerby's, clearly they don't have kids. If they do, they don't know how to use their imagination. Another day doing what we do best.. 
"I got the keys, try and stop me"
"Mom, I'm not playin, Get in the car!"
"Lets Go Mom"


"Embrace The Suck"

Too make a donation to Audrys cause go to http://www.gofundme.com/AudryMaxineAgainstSma 10% of all donations will go towards funding Dr. Kaspar's gene therapy. A potential cure for this horrible disease. Give Audry and all her SMA friends a fighting chance at life. 

Monday, May 7, 2012

Shits And Giggles

So much for getting better. The crud is making its way into her right lung. So now we are double timing her treatments.Every two hours xopenex inhaler, a saline neb, 5 rounds of cough/suction.  The doctor went ahead and ordered a swab for whooping cough. Currently Washington State is having a bit of  pertussis epidemic. She's been vaccinated as have I, and no one else is sick in the house but then again; Audry's immune system seems to beat to a different drum. I've also come to the conclusion that the right side of  Audry's body is weaker than the left. Even in physical therapy she favors her left side. Makes sense because every time she gets sick, and the crud works its way into her lungs, it starts on the right side. Round the clock suctioning and cough assist seem to work it out in a few days. Just got to keep the kiddo out of the hospital. Pretty sure whatever she has is secondary from the g-tube. Perhaps playing in the public play area was a bad idea. While she sure enjoyed herself she's paying for it now. I may not be at work this week, however I'm still working here at the house. On top of boog's treatments I still have motherly stuff to get done. House has to stay clean and dinner on the table. At some point I need to wash my ass, as well as finish my book. Fifty Shades Freed. Its the third book in the trilogy Fifty Shades. [Good read]

Every time I take boog to the doctors office I get the same thing. "She looks great" The kid is a pro at "Embracing the Suck". While visiting with her pediatrician her o2 dropped to 88% and her heart rate shot up to 220. Natural response I start looking around for a cough assist or suction. Unfortunately I had nothing so I picked her up and started doing chest pt. The machine didn't alarm so I'm sure the nurse was curious as to what the hell got into me. I managed to get out in my "panic mode" her heart rate is 207! Her o2 was up and down between 92% and 100% the rest of the appointment. No idea what is going on with her. I do know I wanted to get the hell out of there and cough her! She's been coughing on her own. Not sure if she's getting stronger or if shes really sick. Its hard to tell, because, as always she's shits and giggles. -----------------------------------------------------------> I just want her to feel better. Lord knows I sleep better when she's sleeping without interruption. I've figured out the night time desats its always during or right after a coughing fit. Poor girl. If her muscles got stronger instead of weaker she'd have a six pack when this is all said and done. We spent the rest of the day on something I like to call "What not to do" It was a 16 & Pregnant marathon. :) 


A little about Nemo today. 2 nights ago when we had the "sleepover" her friend who is roughly the same age went to sleep without a pull-up. Ever since than she has decided she is too old for "nigh time panites" I'm excited to report that 2 nights in a row, she has been accident free. Lord knows I hate laundry and was hesitant to let her go memes [night night spanish slang.. We lived in Mexico for the first 2 years of her life, it stuck] in her dora panties. She's doing awesome! I told her if she makes it a week we will do something just the two of us. Thinking about taking the diva for a mani/pedi. She loves everything girly. I'm guessing she's proud of herself too cause she's not been her usual tyrant self. Today she has been exceptionally pleasant. "Please, and thank you, Love you, Miss you" Its kind of weird but i'll take it. No tantrums and no slammed doors. While she is only 3, most days she is going on 30. She even wanted to help sister eat her food via the tube. Look at that face. She looks somewhere between "Up to something, and Sweet as pecan pie" Going to keep an eye on this one. Overall a pretty good day. One day down, and many more to accomplish. With a disease like Spinal Muscular Atrophy every day is a blessing. No matter what happens I always remind myself... 





"Embrace The Suck"

Too make a donation to Audrys cause go to http://www.gofundme.com/AudryMaxineAgainstSma 10% of all donations will go towards funding Dr. Kaspar's gene therapy. A potential cure for this horrible disease. Give Audry and all her SMA friends a fighting chance at life. 



Sunday, May 6, 2012

Meltdowns, Smiles, && Memories

Finally, in what seems like decades, got out of the house today. A really good friend of mine arranged for a mutual friend to do a photoshoot with the girls and I. Pretty sure they turned out amazing. Not only because, well, have you seen my kids?! Also, because Amanda really knows what she's doing. Emery was a bit of a sour puss today. Not really embracing anything. Suppose it was my fault she didn't get a nap. Audry was the complete opposite. Smiling, interested, and living life. Shes got a zest for life and she does it with a big o grin. So all that aside we went to Fort Steilacoom Park. Definately going to go back! Not only is it gorgeous, but there is so much to do. There were a few soccer games which took me back to my good ol days of elementary soccer. Looking forward to Emery getting into sports. Usually I'd get in some mood about Audry not playing sports, but not today. Today the sun was out, the skies were blue, and I was hanging out with my girls. Who better to cheer her big sister on than Audry? I know the optimism is gross. I've been in a rut the last few days and today it seems to have moved on. I'm sure they will come and go, but today no bad feelings just great. While at the dog park/lake portion Emery fed the ducks. It was one of the few times we got her to smile without threatening to take her home and put her to bed. Non the less she met a friend, who gave her some bread, in just enough time to scare off the ducks. You guessed it, as soon as they swam off Emery was in meltdown mode. Fortunately our photographer showed up and I cheered her up by talking about the park.
We did manage to catch a few smiles from the sour puss. During the photo shoot we had to bribe her. "If you don't smile, no park." More about the pictures in a future blog. At the park I had a really hard time keeping eyes on Miss Emery. Its gotta be one of the biggest kid parks I've ever seen and it was crawling with kiddos. Audry didn't get to play much. Not sure if going out into the freshness was such a great idea. After we rapped the pictures she was a congested mess. I rarely leave the house longer than a few hours so bringing the cough assist seemed silly. Well next time at least the suction will be traveling with us. Needless to say the park portion of our extravaganza was short lived. Emery, of course, had another meltdown when it was time to go. We manage to cheer her up by letting her ride a tricycle back to the car. Got the kids home and into jammies. Cough and Suctioned Audry really good and hooked her up via her tubie. She is now resting [as well as eating ;)]peacefully, and she's statting at 100% o2. Maybe the park wasn't such a horrible idea after all. We made memories and at the very least we all have just a tad bit more Vitamin D. Love my life, Love these kids.... 


"Embrace The Suck"

Saturday, May 5, 2012

Sleepover and Boogs Boogies




Mommy and Boog
Mommy and Nemo
Having a sleep over tonight. Wish us luck; 4 kids under 4. What can I say? I'm a sucker for single parents needing time off. It's hard enough being a mom but doing it on your own, while the husband is deployed, or the "babys daddy" isn't interested in helping out. I'm all about paying it forward. I don't charge for overworked parents to get out. Having friends that support you and are there for you are hard to come by. Can't tell you how many times prior to dx, I've attempted to land a sitter only to come out empty handed and sulking in a bubble bath. Post dx I just don't trust anyone with Audry. The roomate is pretty good about watching the kids so I can get out. I still only leave when they are sleeping, and I'm lucky if I get out once a month. Not that coughing and suctioning is hard work, I just want it done my way. Plus it ensures it gets done. The roomate deploys soon and It'll be back to the bubble bath and books for this guy. I suppose its a good thing I like my kids. ;) We spend lots of time together. I wouldn't trade it for the world.  

As many of you already know Audry is battling a "cold". She is handling this one the best and [knock on wood] we've almost kicked it. Last "cold" ended up being influenza B and took several weeks to get over. Not sure if its the "crazy supplements" I've started her on or the proactive g-tube. None the less, boog is junky but the desats have ceased to exit. She is statting at 99-100% oxygen right about now. Her heart rate has also come down to the 130's, so much better from the 190's we experienced day before yesterday. No more fevers either. Nothing worse than hearing the alarm go off in the middle of the night, or during nap time. The first night I had to wake her up a few times for extra "coughs" via "kick in the mouth machine" also know as the coughalater. We call it that for obvious reasons, its a kick in the mouth. The machine shoves air into the lungs and sucks it back out quickly simulating a "cough". This is followed by suction to remove the crud she coughed up. They say that the kids get used to it. We will see. Audry hates them both. Kids with SMA have a hard time coughing due to muscle weakness. Alot have trouble breathing, fortunately Audry's not there yet. Eventually she will be on a bi-pap machine which will help her take full breaths while she's sleeping. It also helps keep her chest walls strong. Her gtube sight is looking less angry. We started a cream 2 days ago usually for staph infections. Even sick she's still that same ol Audry with a shit eating grin on her face. I also learned this week when the nose runs so does the g-tube site. It looks like snot. Yellow, and stringy. Hopefully your not reading this with your dinner.                                                                                                                               


    <----- All cleaned up, told you it was looking angry. Hope everyone's enjoying their weekend. I know I am. Time is precious :) 

"Embrace the Suck" 

Too make a donation to Audrys cause go to http://www.gofundme.com/AudryMaxineAgainstSma 10% of all donations will go towards funding Dr. Kaspar's gene therapy. A potential cure for this horrible disease. Give Audry and all her SMA friends a fighting chance at life. 

Friday, May 4, 2012

Playing Catch Up

While I should've done this months ago, we've been busy. Very busy.


The first 4 days after the crushing diagnosis I camped out in the living room with both my girls. I didn't shower, eating was out of the question, and I didn't leave my couch. When the girls slept I hit the internet for a cure. Needless to say I came up with the short end of the stick. I had nothing but sad stories of babies that lost their battle with this incurable disease, that my Audry has. I ransacked google for hope but couldn't find anything except for statistics. "Number one genetic killer in infants" "50 percent die before age two" "There is no cure" "1 in 40 people are carriers" "It takes two carriers to make the disease" I did my best not to cry in front of the girls. I didn't want them to know. Then again how do you tell a 3 year old she won't get to fight with her sister over boys, clothes, and makeup. How do you tell a 14month old your life is so precious and you have no idea your dying. I couldn't believe this disease that was no where in either family tree was going to take my sweet Audry. On the 4th day I started getting some responses on my Families of Spinal Muscular Atrophy account. One person in particular invited me to a facebook group. I spent the next week "meeting families" with kids who surpassed the 2 year mark. I got out a notepad and started taking notes. If they could beat the odds so could we. I had to. I couldn't let Audry go. Not today, Not tomorrow, there has to be something I could do to make her life longer and better. Proactive, yea. That's it!


Our first post diagnosis appointment was with a pulmonologist. Dr. Caboot, he's pretty awesome, came in checked her out and immediately started talking about our options. My thoughts "YES! Options" Cough Assist, Suction, Nebulizer, Inhaler, Percusser, and later down the road a trach. I listened to what he had to say and decided I want all of them, minus the trach, that decision we could make later. We even discussed gtube and I said I'm not ready yet. Let me let this sink in. A week later Olympic Pharmaceuticals was at my door with all this fun equitment. Fun is an exaggeration, in all honesty Audry hates everything except for the inhaler. I think it has something to do with me singing silly songs and rocking her while we do it. She can't hear the songs over the cough assist and if she had it her way [and the strength] she'd toss the suction out the window.


She got her first post diagnosis cold. The diagnosis immediately hit home. There was a time prior to dx that I would have shrugged off a cold as "no big deal". Truth of the fact is its now a huge deal. We spent 2 weeks coughing and suctioning Audry. Every hour on the hour I was attempting to clear her airway. In over my head, I was doing something right. We kept the gunk out of her lungs. Whew! Post diagnosis I can spot a sick kid from a mile away. I cringe at daycare "runny nose, dark circles, flushed cheeks.. she/he shouldn't be here" God love the parents who dope there kids up with tylenol and motrin before daycare so they don't miss work. I can say that because I've done it. Then again colds were "no big deal" 


I was invited to another facebook group called the AA diet. Let me tell you I thought these women were nuts. I couldn't believe the diets these kids were on. Hell I just tossed Audry a little bit of what we were eating and drove on. I thought I was clever by giving her more protein via baby food meats. The list of supplements these kids were on was long and gave me a headache. I wrote off the diet. Only to come back to it after a testimonial post. These kids were getting stronger, I wanted it! My "best" online friend sent me Vivonex Pediatric so that I could conduct my "trial". If Audry didn't get stronger we were going to go back to her old diet of eating "normal". Needless to say a couple days into the diet I became one of the crazy women who pushes this diet like drugs. Holy cow Audry is still getting stronger! I'm so impressed and glad we "tried" AA diet. After 2 weeks the trial was a rap and I'll never go back. :) AA diet all the way. With the help of creator Mary Bodzo, I too have a crazy list of supplements, which I don't find so crazy anymore. It's definately easier than it looks. 




Audry origionally being diagnosed a type 1 has recently been moved into the type 2 category. She is sitting completely unsupported these days and for longer periods of time. Prior to diagnosis she sat long enough to snap a picture and most were blurry as she was crashing to the floor.



Last  week Audry got her g-tube. She still has her swallow and so far has no issues with aspiration. She took the surgery like a champ even though they wouldn't let her eat for 36hrs. Needless to say mama was pissed. Audry had a fever post op and they worried about infection. The fever broke and they finally let her eat. She couldn't have been happier. She ended up on morphine which also put her feeds off but she was in so much pain. She was terrified when she woke up and saw the tube hanging out. She still 1 week post surgery doesnt like to look at it. When you lift up her shirt she tries to push it back down and says "nooo, nooo"


Through the last two months I've learned alot about myself, alot about Audry, and alot about other people. I've lost a lot of friends, I've gained alot of friends, and Audry continues to touch every person she comes in contact with. [Even before I tell them about Spinal Muscular Atrophy.] I'm proud to say that I no longer life in the "dark days" as I call them. Audry is not dying she is living. She is happy, thoughtful, caring, and bright. While most people say that about their children. Everyone says that about her. :) She seriously loves everyone. Its hard to be in a bad mood around this girl. When I get down I look at my "boog" and how happy she is and how well she is "Embracing the suck" She may not walk, stand, or crawl, but that doesn't stop her from brightening your day. She's my inspiration. At 17 months old she has touched more people than I will in a lifetime. When life gets you down think of Audry and....


"Embrace The Suck"






Too make a donation to Audrys cause go to http://www.gofundme.com/AudryMaxineAgainstSma 10% of all donations will go towards funding Dr. Kaspar's gene therapy. A potential cure for this horrible disease. Give Audry and all her SMA friends a fighting chance at life.