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.