Frugal

Before I had my boys I never realized how much I supported consumerism in our economy. Every penny in my pocket went from hand to mouth, or back, or car. I lived a very one use life style and wasn't really raised to live very environmentally conscious. We had paper towels, Tide laundry soap, and plenty of toys. My mother was just very good at managing money, but never really shared the process with us. When I moved out on my own for the first time at 17 it wasn't so bad. I was working a job as a Switchboard Operator for a local hospital and made decent money. Enough to afford a fancy newer car, whatever food I felt like throwing in my cart, going on with my friends, and shopping for new clothes.

After I met Tim and became pregnant with Ethan, I quit my job as the Front Desk Manager of a local hotel. I was constantly on my feet, under appreciated, and just stressed. It was directly effecting my pregnancy and my baby was more important. Two weeks after my financial contribution ceased to exist, Tim was laid off. We now found ourselves just short of homeless with car payments close to default with a baby on the way no less! We sold our cars and actually ended up staying in one bedroom of a should have been condemned house with no functioning toilet or furnace. Talk about scary. We stayed in the master bedroom, ate as minimally as we could with me being pregnant, and prayed for Tim's unemployment to quickly arrive. We were in the house for almost 5 long months living like this. No A/C, pouring 5 gallon buckets down the back of the toilet just to flush, battling bugs and other "friends." We finally received Tim's unemployment and my tax return, by the grace of God, and were able to rent a small two bedroom apartment that was just a step up above where we were. Tim finally secured full time employment just shortly after I had Ethan, our first born together.

When Ethan was just four months old we found out we were pregnant with TWINS, non the less. After a very complicated pregnancy and a traumatic birth, we were blessed with Gavin and Gabe. Due to being born 10 weeks early after having Twin to Twin Transfusion Syndrome we were now faced with brain injuries, Cerebral Palsy, and a lifetime of complications to contend with. We will still only a one income, now special needs family, barely above the federal income poverty line. We were left to figure it out on our own. Thankfully Gavin and Gabe's Cerebral Palsy are qualifying diagnosis's for Social Security Disability, for without which we would severely struggle for me to stay at home with them. Not that staying home even with SSI allows us to not make sacrifices.

Last year our total family income for a family of 6 was just about 17,000 for the year. We rent a nice 3 bedroom home with a partial basement and nice big yard, own a 2005 Honda Odyssey Van, and a 1995 Ford Escort Wagon. We pretty much pay the bare essentials bill wise with no added extras; electric, water, gas, trash, rent, renters insurance, car insurance on both vehicles, gas, van payment, internet, netflix, cell phones.We spend about $70 a week on groceries to eat clean for our family of 6 but do get supplementation from WIC and friends and family enjoy feeding us as well. :)  We cloth diaper, thanks to gifts from friends and family and for BumGenius's Share the Love Program. We make our own cleaners and laundry detergent. I do not use paper towels. We use a shampoo bar to wash our hair as it is less wasteful then conventional liquid shampoo and its organic and free from all the synthetic and harsh chemicals. I also plan on writing a dedicated post to our house hold purchases monthly and cleaning supplies.

We are very blessed to have immediate family that understands the challenges of raising two special needs kids and a third with a diagnosed behavioral issue on less then 20,000 a year. We also receive some assistance with therapy co-pays and Assistive technology/ equipment from Illinois's Early Intervention program and Illinois Assistive Technology and United Cerebral Palsy for their wonderful lending libraries.

I am growing our first garden this year. It is about a 25-30ft by 15ft plot. I have spent about $60 on it so far between seeds, fencing, and starter plants this year. It has already paid its self off though. I have already harvested 30 bags of spinach, buttercrunch and romaine lettuce this year, an estimated retail value of $65. So if anything else produces in my garden I will have already made our money back. More posts of the garden to come as well.

This is just a little incite on how our family functions on a minimal income. We very much enjoy striving towards a self sufficient and debt free lifestyle. It is not for everyone. Less is More. I will write a dedicated post on how we feed our family of 6 on such a small budget, cloth diapering and our system of doing it, paying for special needs related purchases, gardening, and homemade cleaners soon!

A Day in the Life

I am making a conscious effort to update our story more often then before, not only for my family and readers, but also for my sanity and memory. We are always so busy I love thinking that I can look back and be reminded of all that we've been through and have overcome! 

Many of our days include 2-6 hours or formal therapy for all three of the boys. Gavin is currently getting occupational therapy, physical therapy, developmental therapy, and speech therapy once a week, United Cerebral Palsy's Play to Learn program and seeing his nutritionist bi-monthly, and a vision therapist monthly. Gabe receives all the same therapies as Gavin besides vision. Ethan receives speech therapy once a week and occupational therapy twice a week as well as UCP's Play to Learn bi-monthly. 

In case you don't often read my twins have multiple diagnosis'. Gavin has been diagnosed with Spastic Quadriplegic Cerebral Palsy, Plagiocephaly, Periventricular Leukomalacia, mild Scoliosis, Torticollis, GERD/Reflux, Vicious Cycle Constipation, Casein/Soy/Gluten Intolerance, Strabismus, Ambliopia, Farsighted, and Global Developmental Delay/MR. He also has feeding difficulties and aspirates <70% of the time on all consistances of fluid. He has been hospitalized multiple times for dehyration and pneumonia. Gabe has Spastic diplegia, historically known as Little's Disease, Cerebral Palsy, Plagiocephaly, Brain cysts indicative of Periventricular Leukomalacia (but never formally diagnosed), mild Scoliosis, GERD/Reflux, Vicious Cycle Constipation, Casein/Soy/Gluten Intolerance and sensory issues almost identical to Ethan. Ethan has Sensory Processing Disorder. He is a sensory seeker. He has an extremely high pain threshold, has food, smell, and texture avoidance, has improved eye contact, self abuses (head banging, belly flopping, hitting himself) and has a speech and language delay.

On top of our multitude of therapies we also have 2-3 medical appointments a week for various things, whether a full doctors appointment, swallow study, x-ray, lab work, second opinion, its always something. The boys are currently seen by ENT, GI, Neurology, Orthopedic Surgery, Orthotist, Developmental Pediatrician, Regular Pediatrician, and Ophthalmologist. Everything but our general pedi is located 90 miles south west in St. Louis so I am constantly in the car with three little ones 2 and under by myself.  With Tim, the boys dad, working crazy hours to support us, most days were like ships passing in the night. We are up 7a-10p and he's working or sleeping generally. 


So besides therapy and medical appointments, the rest of our day is full of picking up and dropping Xavier off at school or his moms, trying to maintain my house (mopping floors HA!), trying to spend time in one place as a family, and hanging out watching movies when the little ones go to sleep. 

I think the hardest part of our days is getting everyone ready and out of the house. It's not to often that family members or friends actually offer to come down to visit or to help with the boys/around the house besides a select 1 or 2 (you know who you are :) ). It seems as though everyone is just as busy in their own lives. Getting three boys bathed, dressed, brushing teeth, changing diapers, feeding bottles, putting on the twins AFOs, then shoes, plus coats, hats, making sure I have pediasure bottles and nipples cleaned and packed, the diaper bag full of extra outfits and eye patches for Gavin, some sort of chairs for the boys to sit in (because people ultimately get tired of holding my kids), getting all three outside and loading everything and everyone up into their 5 point harness car  seats,  just to drive to our appointment, unload into the double stroller, strap one of their into the backpack carrier, take the inside to unbundle and pack them alone..... only to stay 1-2 hours.... is freaking EXHAUSTING. 

I am never on time and always late. I am constantly forgetting things and having to stop and spend more money, that we don't have, to buy replacements (pediasure $15 for a 6 pack, Dr. Browns bottles, pacis, diapers, wipes, a new outfit because Gavin threw up on his). And if we're going somewhere further away from home? The drinks and snacks and toys to keep them occupied, diapers, extra clothes, oh it's like packing for a week long vacation every time we leave and most of the time just thinking about the work that goes into it is exhausting enough to make me cancel and say NO WAY. Then just the cost of driving, packing snacks, and more supplies then are typically used at home, financially is enough to make me want to stay home.

I think friends and family that we in our lives prior to having the boys have just settled into thinking we've got it handled and wouldn't use the help, or they are just too intimidated to offer. Thankfully we have settled into a routine and have cut certain corners to keep our sanity. (which is why I now have short hair and half the time you see me I've been in the same sweats for three days and have to be reminded I smell like a donkey lol) My children are provided for the best way I can possibly provide for them and I am just so grateful to even have them in my life after all we've been through, it's hard to complain about the work. I couldn't imagine my life without them. These little boys have taught me more about compassion, love, perseverance, and acceptance in the two years I've had them then I could have learned in a lifetime had then not been a part of our lives.

I may wake up everyday to Ethan ransacking the "root cabinet" with a confetti explosion of onion peels everywhere, Gavin crying because he's back scooted himself into a corner of his crib and got his arm stuck through the bar, or every Gabe finger painting in his own poop, but I wouldn't have it any other way. 

Well here we are.

Well here we are. Just hanging out in the "nesting" room of the Fetal Care Center of Cincinnati Children's Hospital. We had our echo this morning at 8:30a EST. Laying on my back was KILLER. At 21 weeks and some change I didn't think it would be this bad already but I felt like I was going to pass out! I was short of breath hurt. I had to shift probably 5 times and finally succumb to laying on my side. The cardiologist didn't come in to see us this time. The tech just said, "you are free to go and your results will be sent up to your team."

So here we are, waiting again. My stomach is a bundle of nerves, and dunkin donuts (kind of a bust). I've been to the bathroom twice since we've been here. My belly always gets super upset during stressful events. I have to try my hardest not to fart during the ultrasounds when they are pushing all over the babies while my intestines and belly are yelling out loud.

I talked to Tim for a minute. He still hasn't gone to sleep since he shift started last night and is so beyond tired he is wired to go. Ethan talked to me on the phone. He is full of "ga ga ga ga" and "ma ma ma ma" noises today AND has been standing on his own while I've been gone! He had done it a few times before I left, just randomly popping up to stand in the middle of the floor, but I guess he's done it quite a bit the past two days. I feel like I'm missing everything and we've been gone literally like 48 hours.

I am exhausted and going to sit back here in this big comfy chair, close my eyes, and think about the consequences my stomach and behind will face if I eat this extra dunkin donut I got for the road.

Oh the joys of being pregnant.

Well here we go again.

We showed up at Good Samaritain Hospital at 11:05a after driving in circles to try and find a place to park through all the crazy construction they have going on. We finally make it up though the maze of a hospital. I am completely out of breath by the time we make it up to the 8th floor. -JEESH-

....and then we waited 40 mins to be called back to my 11:00am appointment.

After the ultrasound which only lasted all of about 20 minutes because the babies were really cooperating with us! and the results are:

Cervix- long and closed! 4.02cm was the shortest measurement and the doctors said that was beyond excellent for having twins with twin to twin and all the exccess fluid! So bravo cervix! I wish you could give your friend, the placenta, some advice of how to function correctly for a change. Maybe have a sisterly conversation to jump start to into regularity. -in my dreams-

Anyways....

Gavin- Baby A, our recipient is measuring 21 weeks 3 days, I am 21 weeks 1 day so he is a little ahead of schedule! He is 16 ounces so we have made the 1 pound mark! :) He is looking great and plump. He was all stretched out. He is head down already on my right side. His little noggin was touching my cervix and his feet are stretched all the way out to my ribs. He has 12cm of amniotic fluid which is still in excess. He should only have around 4cm.

Enough about Gavin! Gabriel, Gabe- Baby B, our donor is measuring 20 weeks 1 day. So he is still a week behind which hasn't changed. He is only 12-13oz right now which is still good! He is breech on my left side. His little neck is kinked right now against my rib cage, hence all the darn pressure I feel against my lung! and his is in the fetal position with his knees half way tucked up and his little arms were free moving from his mouth, to suck his thumb, down to his umbilical cord. and the kicker is HE HAS FLUID IN HIS BLADDER, but no measurable about around his body, not that it isn't there. The pressure of Gavin's excess fluid is just applying pressure to his amniotic sac. He is just recycling there, my environmentally conscious fetus, is peeing, drinking it, and peeing and drinking it.

On both babies their heartrates and blood pressure in their bodies and umbilical cords are in normal range! Their weight discordance is still only about 15%

So we are still in stage 1.

The ultrasound technician in Springfield just didn't take the time to see if Gabe had emptied his bladder or if it just wasn't there. She just did a quick scan and called the doctor in and off we went. So this trip may not have been needed. We have an echocardiogram tomorrow morning at 8am and if their hearts are still stable and Gavin's leak hasn't progressed we are stable still. Dr. P, we saw today. He said that if we are stable we can just go back home or if it gets worse we will be candidates for the surgery. .

Either way no surgery or surgery I will be choosing to do another amnioreduction. To take some pressure off of Gavin's heart and to allow Gabe to not be so smooshed against my ribs and compressed in his sac. The last time we had a reduction his little amount of fluid nearly instantly doubled because of the lack of pressure!

So now we are back at the hotel, to sit and wait for another 18 hours for my next appointment.

So it all depends on how Gavin's little beating heart looks in the morning to the next step in our adventure.