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.

A wedding and Botox

Well Gavin had 18 Botox injections on Monday the 16th and Tim and I got married June 21st. While on my honeymoon staycation, home alone, while Tim works, with all of our boys I promise to do a more thorough update but here's a preview.