Explaining my "big babies"

Yesterday we had a family friends birthday party to attend. It was for a little girl who was turning 4 years old. We all got ready for the day and headed out. When we got there we all single filed in only to realize how much space we actually take in someone else's home. Gav man and I settled in with a seat in kitchen with his chair pulled up along side mine while my husband socialized with the other dads and the other kids all played in the other room. Every now and then the birthday girl would make her rounds explaining to the party that she was the guest of honor and that all those presents in the corner were hers.

Every few times she made it to Gavin she would say "how old is your big baby?,"  "you are such a cute baby," "don't slobber on my toys baby Gavin." I let it go a few times and waited until she wasn't distracted and explained to her and the other kids that Gavin wasn't a baby. He was actually 2 1/2. He was a big boy too. She looked at me very confused and asked "well why is he in this?," and "why can't he get out and play with us?" Though it still breaks my heart that Gavin can't just jump out of his chair and run around with the others like Gabe can, I simply explained that every person can do different things. I simply told her Gavin's body doesn't work as well as hers does. Every child and adult is different, we all might look the same but we all have different abilities. Some of us can sing, some of us can paint, some of us can drive cars, and some of us can walk. After this she quickly scurried away to round with the other guests. After our talk she kept coming back offering Gavin new toys saying "You are such a big boy aren't you Gavin?" and "You are big and tall!"

Gavin

I got a few looks of pity from a couple parents and a few dodge glances when they looked over towards Gavin because it just frankly makes people uncomfortable to approach me or him like I am parenting an alien. I finally struck up a conversation with one mom who looked completely uncomfortable at first but once found out my twins cloth diaper, have the same pooping in the bath tub issue as her 2 year old son, and honestly have all the same developmental issues, quirks, and developments as her son seemed to relax into a normal conversation. Gavin and Gabe don't use oxygen. They don't have trechs. They don't have feeding tubes. They don't have severe vision issues. They just have problems telling their bodies what to do physically. They have the same mental capacity as any other 2 year old toddling around and jumping off the couch. Only they can't just off the couch, hop on one foot, Gavin can't sit on his own or stand. Gabe trips himself when he tries to run. Gavin is slow to speak but if you give him the chance can say every word and sentence, eloquent Gabe can. They are the same as your toddlers they just need a little extra time.

Gabe

My kids, family, and friends and their kids have all seen Gavin in a wheelchair or seat of some sort since he was an infant. Questions like this don't often come up when we have gatherings with people we see often. My husband reassured me that there is no right way to explain it to a child and that I did a good job trying to put it in terms that she could understand at 4 but it hasn't left my mind since we left the party. I don't have a go to answer and I know that as we start to do more group activities with the boys with children their own age the question is going to keep coming up. In small town Illinois where there aren't many children in wheelchairs or with servere physical disabilities like Gavin or even mild ones like Gabe, they just don't see it or understand. I suppose it's time for me to hit the web and see how other parents handle this. I have seen plenty of books for children with disabled siblings but my children have never viewed Gavin and Gabe as different. They just are who they are. Never has our now 8 year old ever questioned it aloud and our three year old includes them they Gavin's wheels are just funky looking legs.

They will always be my "big babies" and I am absolutely sure when they are big enough to understand they will tell strangers themselves that they aren't big babies. They're my superheros.

Care Map

Today I found inspiration from another special needs/foster parenting blog. They were trying to find the simplest way to explain to others the extent of care their special needs children receieved so they mapped it out, all in one place, on the same piece of paper.

You special needs parents out there may be more organized then myself but I know I have therapy notes, signed hippa consent forms, patient visit print outs in the glove box of the car, in my bedside table, under the tv, next to the fridge, stuffed in my purse and diaper bags, under the couch. I felt like it was time to put it all down on one piece of paper, exactly who we see. My calendar is chock full of appointments that I know of and understand but if you asked my husband what specialists our sons see he would have no idea! So here I thought the boys are two years old. It's plum time he gets a move on and figures this out. What better way to do that then to spell it all our for him. We sure have an amazing medical support system for our boys. We don't see some very often and we see others more than once a week but they have been there for us through the scary medical diagnosis's and through the bumps and bruises that probably didn't require anything.

When I sat down to do this I didn't realize how quickly I would fill up the paper.

So lets start with our lovely and largest health branch. We will start from the left and go to the right. I am going to give everyone a brief update of our medical diagnosis's for each specialist as well.

Both Gavin and Gabe see the Otorhinolaryngologist. He is commonly referred to as the ENT or Ear, Nose, and Throat doctor. The boys both go every 6 months in follow up to the barium swallow studies they have to do for the Feeding Clinic/ Dietitian on the write. (You see it is a tangled web we weave.

Both boys also see the Dentist. We first took the boys with Ethan turned 3 and the twins turned 2. Ethan needed a routine teeth screening for preschool (which didn't last long thanks to sensory processing disorder but hey we gave it a shot.) Gavin had two chipped teeth that needed looking at. He tends to mouth things and with poor neuromuscular control of his head and neck he tends to really whack his face on things unfortunately.

Every six months my twins go to the Cerebral Palsy Clinic at SSM Cardinal Glennon Childrens Hospital in St. Louis, Missouri. We are truly blessed that we found such knowledgeable and friendly staff that specialize in the disabilities our sons have. They are the ones who diagnosed our sons with Cerebral Palsy at 9 months of age after our PCP suspected it as much. All you special needs parents who have reached the same diagnosis with your children probably waited until around 2 years of age to hear those words but we were lucky to have a very progressive medical team who through our vocalizations and their own findings came to the conclusion and put it on paper for us. (This helped us get in our paperwork for Supplemental Social Security Disability.) When our sons were first born it was found through ultrasound that they head intracranial hemorrhages called Periventricular Leukomalacia. In layman's terms it meant that the area around the ventricles of their brain (which controls gross motor function) was bleeding, causing it to calcify. On ultrasound their brains looked like swiss cheese in the center. This occurred when the doctors preforming my delivery didn't get the boys out in time and they were oxygen deprived. We knew they were predisposed to Cerebral Palsy. In the NICU the director told us the boys had an 85% chance of delveloping some physical and developmental delays abnormalities. This is probably the team most prominant to our boys main diagnosis. They see the Neurologist and Orthopedic Surgeon at the same time in the same room. This helps provide the most accurate and comprehensive care possible because we are all as a team on the same page. The CP Clinic is who put Gavin on the trial of bacofen and helped us finally settle on botox injections for both boys. Gabriel currently gets them in his lower body and Gavin gets them in upper and lower. Because the boys are still so young they do have to be put under iv sedation each time which the more often you do causes more risks in the long run so hopefully soon just a mild sedative will do. Our nurse coordinator here is a freaking rock star. She is extremely cheerful, remembers us every time, and makes sure that all our referrals and paperwork line up before she even calls us for appointments. Truly amazing care and I would highly recommend anyone who lives in within 100 miles to go here. (our drive is just over 90 miles.)

Gabe after Botox 

Gavin after Botox

Next in line we have urology, which only Gavin sees. He recently had to have a bilateral orchiopexy because both of his testicles never descended. Surgery was December 15th 2014 and as of today he  and his "little men" are doing great! This is a common problem among premature boys. During gestational development boys testicles don't generally descend through the abdomen into the scrotum until 35 weeks. Gavin was born at 30 weeks so his little guys never got the chemical signals inside my belly to make the trek.

Gavin before Surgery with the Urologist

And now we have Gastroenterology. Our doctor sucks. I will admit it. He is far older than he needs to be to still be safely practicing medicine and often forgets what he tells you between the exam room and putting it in the computer. He makes promises in the exam room but when you call a few days later to follow up on why you haven't heard from them they have no idea what you are talking about. We are in the process of outsourcing this practice to Peoria with Urology or St. Louis with the CP clinic. Both boys have been diagnosed with Chronic Cycle Constipation due the the spasticity of their muscles due the Cerebral Palsy. They also both still have reflux as toddlers unfortunately. Most people don't ever think about their internal organs being muscles but the entire digestive system is one big string of muscles that is spastic due to their brain injury. They both take Lactolase and Zantac daily still as toddlers.

Now we move on to my FAVORITE part of the entire branch. The State of Illinois Early Intervention Program. We have the absolute most amazing team of women who are not only there for my children but are there for me as mom. Our caseworker is so vigilant to find us all the care possible. Our Occupational Therapist has been with us from the beginning. She is like a member of the family and I will be very sad to see her go when the boys turn 3 and age out. Not only does she help us get all the equipment the boys need, she also fulfills a large part of the adult interaction I get on Mondays. The boys get Occupational Therapy once weekly. Our OT has helped us get a therapy swing, knee and elbow immobilizers, benik trunk support vests, compression vests, hand splints, adapted cups, forks and spoons, and a special tomato soft touch sitter. She has helped my kids learn to cope with the sensory overload that is our world.

Gavin in his Soft Touch Sitter by Special Tomato

Our PT is fairly new. She is the third we have been through in the past 2 1/2 years. She is so sweet to the kids. She is very loving and has a tender touch with the boys who don't usually mind when she contorts them into crazy (for them normal for us) positions. We couldn't be happier with her. We currently get PT once weekly even though the boys could use it 2-3 times a week. I feel like if we had more intense PT we would be further gross motor wise. Their father and I do all the exercises with them but it would be nice to have a professional to guide us and come up with new techniques and equipment. Our PT though has helped us get a Squiggles Stander, a Rifton Gait Trainer, and a Kid Kart Express chair for Gavin and Gabe without we would be lost.

Gavin in his Kid Kart Express

Our DT is fairly new too. She is like the mother figure to me of all our therapists which is probably because she is a mother herself, has foster children about my kids age, and is about my mothers age herself. She is the voice of reason between conflicting opinions within the therapists and has a good ear to listen to my complaints and worries. We do DT once weekly.

Our Speech therapist is probably my favorite and I can admit that. She is more a friend now than just a woman who works for my family helping my kids with oral sensory and speech. She has been with our family since the twins were born and has worked with all three of my kids at the same time. She has helped us get off bottles and onto sippy cups, increased ethans vocabulary and helped Gavin find his voice! Without the help of our SLP we wouldn't be where we are today. I still feel like my son Gavin would cry like an infant and wouldn't have found his voice.  We do ST once weekly.


Vision Therapy is now on consult. Gavin was originally suspected to have CVI or cortical vision impairment. We have sought second and third opinions and finally settled on farsightedness and ambliopia,

The boys least favorite and sometimes mine is our dietician. Though she is a lovely woman with tons of very good weight gain advice she has brought us on the brink of needing a gtube and I though HARD work with Gavin have brought us back to oral feeds. We are still in the 25th percentile across the board but we WILL get there.

The boys also have their regular PCP which we see for regular well child visits and the few and far between sick visits. I am that mom that doesn't bring my kids in unless a limb is hanging off. We fight the colds, little virus's, and poops at home the old fashioned way with natural medicines and good old fashion time. They do know me very well over the phone here though. :) I have to call 1000 times a month for new referrals, equipment request forms, insurance questions ect.

Last but not least medically we have Gavin's Cardiologist. He was born with an open PDA and PFO. While they thought they had closed in the hospital with steroid medication they have heard a few murmurs since then. We follow up once a year and have had EKGs and Echos.


Moving out of medical and on to the others we have the Illinois Assistive Technology Program.
They have equipment loans. You can go in and look through their inventory and find pieces of equipment to try before you purchase it yourself. We have borrowed many adaptive toys and switches for Gavin through the IATP. You get to keep them for 6 weeks.

DSCC for Department of Specialized Care for Children is one of my favorites too. Our caseworker is like my personal warrior. She battles insurance claims, helps find grants and benefits, helps me find reimbursement for travel expenses, DSCC covers cost of equipment that Medicaid doesn't. She is the only I call when I have stretched so thin and tired of calling our GI doctor 1000 times to get the same non answer and she calls and deals with them for me. Godsend. Really. She is also the one who signs our family up for the Angel Tree at Christmastime so when we are too ashamed to admit we can't buy our children more than one or two small gifts they can have a good Christmas. She also signs us up for a Thanksgiving food box every year full of months worth of food to feed my family without even asking me. She is amazing really. Amazing program. Best advocates for family's with Special Needs.


The boys see United Cerebral Palsy for their Learn to Play program. It is when a therapist comes out twice a month and brings toys to leave with the boys that are adaptived or suitable for them to use with their cognitive level and degree of disability. United Cerebral Palsy also gifed our Children with Amtrykes last year for FREE! My boys now have special needs tricycles to ride like all the other kids in the spring. I can't wait :) UCP is a really good resource for familys with children of all disabilities. A lot of their help targets older children and adults though through camps and career workshops ect.

Ethan, Gavin, and Gabe on their Amtrykes gifted from United Cerebral Palsy

Gavin

Public school is the elephant in the room. I blogged about it the other day because I am just not sure what we will do. When we enter the realm of public school we lose all the individualized care we currently receive in our home and in office. We are still undecided but thankfully we have 6 months to decide.

Last but not least is our support system. I REALLY wish I would say it was larger but we don't affiliate with any church organizations, and many of our friends have back off and disappeared since we had children with special needs. Many are uncomfortable or just don't know how to treat us or talk to us. Many feel pity for us or would just rather not face the baby elephants in their AFO's and wheelchairs hanging out in the room. We do have a few immediate family members who have been indispensable offering help watching the boys when we truly need it or helping us with bills when things are unbearably tight because we needed to buy Gavin the right piece of equipment for him or when we had a surgery for the boys and needed gas money just to get there. We hate asking for a hand out and we are lucky to have a few select family members who are really just there for us. It is hard to find support when you just don't have time to seek it. Maintaining relationships as an adult is difficult without the added fact of having children with disabilities. It is lonely sometimes. Even trying to make friendships with another special needs mom. No two children have the same disabilities so hardships they're facing I have no experience with and all I can offer is empathy. Being a young mother I also have the added challenge of having few friends who are even parents yet. Most are still in college or just graduating and trying to find their way in the world. Their responsibilities seem like child play compared to my daily life. I have a few drive by friends. The past couple years have really made me realize how important it is to maintain a friendship with yourself and find time to take care of yourself.

I am VERY grateful that while my husband might not seem like the most reliable man to others, often being between jobs or skipping family functions to clean the house for me instead,  he is indispensable for me! He is currently unemployed and between semesters in college but he is my pillar of strength. He is who picks up the slack when I need a break. He is the one who tells me not to worry and carries the burden for me. He truly is my better half. He may not be the husband every other woman wishes she had but he is the perfect one for me.

This is just a small glimpse into the overview of what we deal with on a daily basis. Don't even get me started on our sensory diet, equipment schedules for Gavin, the diet logs, and special foods we prepare everyday, I will have to save that for another day.

Overwhelming realizations: Public School vs Homeschool

Having a child with special needs is especially trying. Having two children with completely different yet completely the same special needs is stupefying some days. As my twins Gavin and Gabe get closer to their third birthday and graduation from the state of Illinois Early Intervention Program, a dark cloud rolls over. The side line conversations of IEPs, 504 plans, individual classroom aides, and therapy outside the home have begun to become a daily storm of confusion.

Gabe

As "typical" children grow up they follow a "typical" path. They go from daycare or home with mom/dad, to preschool, to kindergarten and beyond. The burden of parenting a typical kid (which I would know, myself and my two sisters all grew up as one,) is really to make sure the lunch money makes it to school each week and isn't spent on 15 ding dongs, to badger their children into getting their homework filled out and turned in, and as they progress to teenagers to make sure they actually arrive to school each day and make it home. When you parent a special needs child, or children in my case, you have to put in place standards for every single aspect of their entire day in public schools. Will they eat lunch with other children or in a special classroom because of their oral and auditory sensory issues (Gabe). Will they need you to have the teacher, or aide if they grant him a personal one, orally read them all their homework because they have very poor and limited gross motor skills (Gavin). Will they be integrated into a typical classroom and be picked on because they have to wear their orthotics and special compression vests and stick out like a sore thumb (Gavin and Gabe). Should they be allowed extra time that the other students don't get to finish their work because the part of their brain that controls motor planning and processing was injured at birth or should they be put to the same standards as the other students because despite the slow speech they are just as intelligent as their peers (Gavin). Do you rally for occupational, speech, and physical therapy in school when you know in your heart it will be in a group setting with therapists stretched too thin with far too little resources that can't provide individualized care (both).

Gavin

Or do you home school. Sink all your time and energy in providing an education at home tailored to their needs with all the accommodations you are already providing and have been since birth. As a parent you are the only person in the entire world that can decipher that special language your child can speak to you either verbally or not. You know when he starts to arch his back and cry like an infant that you need to touch his chin and remind him to "use his words" and give him that auditory and physical cue to remember that he can speak and tell you his problems if you help him slow down. You know you can drive them to therapy a few towns away everyday of the work week for a full hour of individualized therapy with a therapist who develops a personal relationship with you and your family. Do you spread yourself so thin trying to provide a education for them that you feel and know in your heart will be beyond whatever the public school system can do for them or do you give yourself a break, do as much as you can to accommodate them in a public school setting, push, prod, and poke until you get all your goals and individualized needs met on an IEP and hope and pray that while you put your trust into these people caring for your child or children that they will be honest and forthcoming in the realities of meeting this goals and implementing these needs your child has.

emotional Gabe

My husband likes to think the world is fair and just. He would love to put all his faith in the people we send the boys to spend the day with and hope that Gavin is changed throughout the day or given the opportunity to try to use the restroom while at school but I just can't. My heart and gut says that we should pursue education in our home. That we can find a social group outside of public school through activities, organizations, family, and friends.

Gavin trying to master the propped sit 

The biggest setback for us as a team of parents in the financial obligation. Sending our children to public school where the subsidies provide free lunches full of allergens that upset our children's stomachs (wheat, dairy, corn, soy), therapists that seem to operate with way below the funds or more importantly the time needed to provide individualized care in a one on one setting, and its free to us. Or do we spend money from our pockets on gas to and from activities and play dates so our kids don't fall behind as much as possible socially, or for materials to teach lessons in an effective manner adapted to their personal disabilities. 

Gavin standing unassisted for the first few seconds of his life

Thankfully we have six months to decide but as fast as time moves in the special needs world of doctors and therapy appointments it feels like the blink of an eye.

Days 8 & 9 July 11-12th

Well it's been an eventful two days that's for sure. Tim was laid off. Our one income was cut down to zero incomes. This is one of the only times I have ever been thankful for the twins having cerebral palsy. Thankfully the boys get social security disability so everyone will be fed, sheltered, and clothed. For our new readers our youngest two Gavin and Gabe were born at 30w2d gestation after complications resulting from twin to twin transfusion syndrome. When the boys were born they both had traumatic brain injuries due to lack of oxygen secondary to a full placental abruption and massive internal bleeding. 

So our fun frugal urban homestead just took a crash coarse. We now have to cut bills enough to survive until Tim finds a new job, which is hopefully very, very, soon. We are thankful for friends and family's support, advice, and encouragement. It's always stressful for a family when they lose income but it's especially hard for a family with not one, but two special needs children and two other small children in the home. 

Enough about the doom and gloom. 

Speaking of Twin to twin transfusion syndrome, or TTTS, Cincinnati children's hospitals maternal fetal care unit contacted me Friday to ask if we could be a part of an on going medical study. No one really knows the long term effects of twin to twin transfusion syndrome because before the surgery was pioneered the survival rate of children with ttts in utero was only 10-15%. This means without their efforts and trials and error with the complication our boys wouldn't have survived to be here with us. When we were diagnosed Gavin was already in the first stage of heart failure and Gabe was on the verge of kidney and liver failure while in utero. 

Needless to say we said we'd LOVE to be a part of the study. They will be in contact with us on whether they can get us out there all expense paid or if the team of doctors will meet us at a hospital in Springfield. How exciting! I am very proud that my boys and I have survived and made it this far, special needs or not,  and it would mean the world to Tim and I to be able to make the decision to terminate or have surgery that much easier for parents that were in our situation. We took a shot in the dark with the boys and I'm happy everyday that we did.

Garden 

Planning, planning, planning 

We are ready to rock and roll for our fall garden. Now we just need our summer garden to produce it's harvest and then we can turn it over and direct sow and transplant the rest. I am getting antsy though because were just 90 days from our first hard frost. We are slowly running out of time. Thankfully I've been reading up on how to overwinter onions, garlic, and carrots, the longest growing crops. Tomorrow Tim and I are going to start our  onions, cabbages, and broccoli. We are also going to try to build a scare crow! 

Today Ethan and I went on errands. We sold a few things, visited my aunt Cathy and uncle Kyle, who gave Ethan apple juice and a super cool motorcycle toy he's held on to all day. Then we went and saw my mom, granny, at my sister Katie's. Mom got the boys some clothes off the awesome dollar rack at Kokes Kids zone, a local consignment store. I also made my second successful Craigslist sale, selling my twin plus my Brest friend nursing pillow. 

With the silks of my corn browning and the ever blossoming cucumber plants are producing tons of fruit, canning is in my very near future. This should be interesting 

A fire argues? 

Day 5 July 8th

The ants go marching two by two Howrah 

Our yard has been invaded. By these little black creatures that make the still side walk look like it's moving beneath your feet. Yesterday we tried the first of a few all natural remedies we have found successful. We mixed borax and white sugar 50/50 and sprinkled it over the worst of the ant hills. Tomorrow we are going to sprinkle the edges of the side walks with some cinnamon and if that fails we're busting out the big guns; cayenne pepper spray! Ant is now gabe's new favorite word. 

Garden 

Our cucumber plants are exploding with produce! This weekend we will definitely be pickling, slicing, dicing, and canning up some of these bad boys. I am so excited to finally get to try out my canner and use some recipes from my new books. Ethan loves picking the produce out of the garden with his cool cars gardening gloves. 

Tomorrow's project is keeping the squirrels out of my corn and the birds out of my tomatoes! Gavin and I went outside today to check out garden and we discovered this, Wish me luck 

New wheelchair!

Gavin finally has some wheels! Yesterday NuMotion, out of Earth City, Missouri, delivered our first three real pieces of equipment. Gavin received a squiggles size 1 stander, a rifton pacer, and a kid kart pediatric wheelchair. 

First off, the customer service way NuMotion was awesome. They were always prompt to return phone calls and were diligent with insurance to make sure we got what we needed even after a few denials. 

Gav is loving his new chair! It provides the support that he needs. It is easy collapsible, and transports so easily! It is so user friendly, easy to push, and it turns on a dime. It is extremely supportive and very cushy. I would recommend this chair to anyone. 

We also have a special tomato chair we used to use for going places but now it will just stay at the kitchen table as his permanent feeding chair. 

The pacer and stander we have had on loan for a few months now. Gav does awesome in the stander, still no steps in the walker but we will get there. The twins also have the AmTrykes with they absolutely love for use. 

Gav and Gabe just got a new PT. We lost our old one Jackie to the time on the road. Our new PT is Jill and she seems very optimistic and eager to really dig in and work with the boys. 

Ethan and Gabe are both as articulate as ever. Gabe learns a few new words a day at at 23 months is using 5-7 word sentences and has a vocabulary of about 200+ words. Gav is really impressing us lately! He uses about 20 words correctly and in the right context and repeats just about anything besides a few sounds. His Botox injections have REALLY helped and have made a huge difference.

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 have been terrible about updating out blog as of recently. Our day to day life is nothing short of a wild roller coaster ride, the main goal being keeping all four of my lovely boys alive, second to feeding, bathing, clothing, and entertaining them. :)

Having three under three and a sort of big seven year old helper has been interesting. Gavin and Gabe still have therapy daily, Xavier has biweekly baseball games and normal summer adventures, and Ethan is keeping me on my toes with his intent on being a part of everything mama has going on.

The twins are still getting physical, speech, occupational, developmental therapies and seeing a nutritionist all once weekly. It keeps us very busy along with all our specialty doctors appointments and just keeping our day to day life straight.

Gavin will be 2 years old August 2nd. That is when they stop adjusting age. For all the new readers he has Spastic Quadriplegic Cerebral Palsy secondary to Periventricular Leukomalacia. He also suffers from GERD, vicious cycle constipation, diphagia, aspiration, and sensory issues. He is still being orally fed. We are successfully bi-passed the feeding tube for the past 6 months and hopefully we keep on the up and up and can orally eat the rest of our lives. :) He is now 34 1/2 inches tall and 23lbs 8oz. He is starting to sit independently for short periods of time. He is really enjoying his borrowed Squiggles Stander and Rifton Pacer while we wait for our own. Our therapists and doctors have also ordered him his first wheel chair, a Kid Kart. Hopefully having a tilt in space chair with a tray will allow him to work on his fine motor skills while feeling safe in a supported environment. He has definitely mastered the art of the belly crawl and can now belly crawl over objects, turn around, and back himself out of corners. He is starting to say 2 words together and can now spontaneously say about 20-30 words. :) He is still very hoarse and does still have motor planning issues when it comes to his speech so sometimes it may take 2 or 3 tries before the words come out. Today he was crawling around saying "ga... gabe....gabe...break it."

Gabe is everywhere! We are now a walker. He still has lot of tone issues in his hip abductors, knees, ankles and toes. He has successfully over come his upper body tone/ While still there, he can functionally use both arms for age appropriate tasks smoothly now. He still has a lot of balance and coordination issues. We have lots of bumps and bruises. He is still having feeding difficulties as well. We are still on a level 1 nipple and have to thicken to nectar consistency. He still swallows just about everything whole and doesn't have the best sensory control and often overstuffs when it comes to meals. He is growing like a weed though at just shy of 35 inches and 28 lbs. While hes 5lbs heavier then Gav they really don't physically look different. The CP clinic doctors just explained that Gabes muscle mass weighs more.

Ethan is a little turkey. We are about completely potty trained as we approach his 3rd birthday. We are peeing in the potty during the day and wear a pull up still at night. Most days he wakes up dry, but I think he just wants them for security. He gets very emotional with accidents.

Xavier is keeping us busy with his 7 year old antics. We are dawned the age of sarcasm in our home. Xavier just "looooves to do his chores." :) It is bitter sweet seeing our little boy grow up. It is so exciting the skills, questions, and conversations he initiates now but it is sad that he doesn't think he needs our help anymore. It really makes me sad how much kids his age are exposed to and how fast he is growing up. It really makes me think even harder about homeschooling the three little guys.

As for Tim and I, we are getting married June 21st so we are been in the midst of wedding planning. :) We are having a small wedding with about 80 people. It should be a good time. I have also planted a massive garden this year. I am determined to bring the homestead to our small home, even if we are in a small rental. Our Landlord has been very gracious in letting me plant a 14x30ft garden at the back of our lot and scatter by containers and raised frame beds around the property. This year is my first year gardening and I hope we are able to can enough to supplement part of our grocery bill this summer through spring. Tim is currently trying to find new employment and we now make too much money to get assistance with the boys so we are sort of stuck in between a rock and a hard place. Food stamps used to supplement the Pediasure the boys drink. Now we have to find a way to pay for it and food out of pocket with less money then we had before. It all seems so backwards.

In my garden this year I have planted: sunflowers, wild flowers, garlic, pumpkins, radishes, carrots, cucumbers, jalapenos, cherry tomatoes, potatoes, beans, broccoli, spinach, lettuce, strawberries, corn, onions, 4 tomato varieties, red bell peppers, green bell peppers, sweet basil, purple basil, oregano, sweet mint, lavender, a raspberry vine, and a blueberry bush. This month I plan to add sweet potatoes, water melon, winter squash, pumpkins, more corn and beans for a later harvest, and to replant my lettuce. I am also hoping to plant a second fall garden after we harvest and turn over this one in late August. I plan on planting beets, more broccoli, cabbage, carrots, cauliflower, peas, lettuce, turnips, garlic, kale, and a second set of spinach. My spinach is currently bolted to seed so hopefully I can successfully harvest it in order to replant.

We are also trying to cut costs this year by hopefully buying a deep freezer. That way we can can some of our produce and freeze the rest. If we get a deep freezer we will probably also buy half a cow from a local farmer.

I am also trying to work into our tiny over stretched budget a clothesline. We currently have a clothes drying rack we were gifted (from my mom :) ) that we use daily but we really need a large line for the 6 of our clothing, towels, and linens. It would save tremendously on electric and help our clothes last longer as well. I registered for one or if we get money for the wedding that will be one of the first purchases :) fingers crossed.

I am officially down 40lbs since January. My blood pressure is now low to normal and I have a check up today. :)

I am also thinking about updating and revamping the blog. While it is mostly about the boys I would love to figure out how to categorize my posts with gardening, the boys, saving money, living green ect. So changes may be coming soon!

Slacker.

As a special needs family we have been very busy. The last post I put on here about the boys I was coming to terms with Gavin having a feeding tube put in. After our consult with a pediatric surgeon we decided to go a different route and continue working on therapy and weight gain without surgical intervention. So far we are only up about 2 pounds over all since December but our pediatrician is ok with taht because Gav is still in the 30th percentile.

The boys are doing very well over all! We have had two colds, the stomach flu, and a bought of roseola, which was scary, since I last updated. We just finally ordered some equipment for Gavin but now we have to wait for up to a year for insurance to approve and send it. He will be receiving a Kid Kart Express, Squiggles Stander, Rifton Gait Trainer, and we already received our Rifton Blue Wave bath chair (which is AWESOME!).

Since my last post we as a family (minus dad who half participates) have gone Gluten free, all organic, and limited dairy. I have lost 19 lbs since January :) and the kids have a better attention span, Gavin's eczema has improved, and we are over all feeling better and more energetic!

Ethan just tested out of occupational therapy, though we still have some mild sensory issues. His developmental testing put him at 44 months of age and hes only 30 months old. I was one proud mama. :) We are still waiting to hear if he will have an opportunity to test into public pre-k or if he is too smart and will have to try to go to a church provided pre-k here in town.

Gabe is walking! He is finally taking indenpendent steps around the house. He still has a gait and sort of walks without bending his knees but he is doing better then we ever expected!

Gav is finally starting to work with the My First AAC app on the ipad to work on communication. Unlike Gabe who can say over 200+ words and 3 word sentences now, Gav is still only saying 2-3 words total. He just doesn't have the motor planning skills to put it all together. He is also starting to sit independantly for a few minutes if you help him get into criss cross and prop his elbows on his legs or give him a toy to play with! He also has surgery scheduled for March 31st. He has two testicular hernias that have to be repaired. More on that to come!

That's all for now :) I'll just to update soon.

It's 62 degrees out and I'm itching to get outside!

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.