Many of our days include 2-6 hours or formal therapy for all three of the boys. Gavin is currently getting occupational therapy, physical therapy, developmental therapy, and speech therapy once a week, United Cerebral Palsy's Play to Learn program and seeing his nutritionist bi-monthly, and a vision therapist monthly. Gabe receives all the same therapies as Gavin besides vision. Ethan receives speech therapy once a week and occupational therapy twice a week as well as UCP's Play to Learn bi-monthly.
In case you don't often read my twins have multiple diagnosis'. Gavin has been diagnosed with Spastic Quadriplegic Cerebral Palsy, Plagiocephaly, Periventricular Leukomalacia, mild Scoliosis, Torticollis, GERD/Reflux, Vicious Cycle Constipation, Casein/Soy/Gluten Intolerance, Strabismus, Ambliopia, Farsighted, and Global Developmental Delay/MR. He also has feeding difficulties and aspirates <70% of the time on all consistances of fluid. He has been hospitalized multiple times for dehyration and pneumonia. Gabe has Spastic diplegia, historically known as Little's Disease, Cerebral Palsy, Plagiocephaly, Brain cysts indicative of Periventricular Leukomalacia (but never formally diagnosed), mild Scoliosis, GERD/Reflux, Vicious Cycle Constipation, Casein/Soy/Gluten Intolerance and sensory issues almost identical to Ethan. Ethan has Sensory Processing Disorder. He is a sensory seeker. He has an extremely high pain threshold, has food, smell, and texture avoidance, has improved eye contact, self abuses (head banging, belly flopping, hitting himself) and has a speech and language delay.
On top of our multitude of therapies we also have 2-3 medical appointments a week for various things, whether a full doctors appointment, swallow study, x-ray, lab work, second opinion, its always something. The boys are currently seen by ENT, GI, Neurology, Orthopedic Surgery, Orthotist, Developmental Pediatrician, Regular Pediatrician, and Ophthalmologist. Everything but our general pedi is located 90 miles south west in St. Louis so I am constantly in the car with three little ones 2 and under by myself. With Tim, the boys dad, working crazy hours to support us, most days were like ships passing in the night. We are up 7a-10p and he's working or sleeping generally.
So besides therapy and medical appointments, the rest of our day is full of picking up and dropping Xavier off at school or his moms, trying to maintain my house (mopping floors HA!), trying to spend time in one place as a family, and hanging out watching movies when the little ones go to sleep.
I think the hardest part of our days is getting everyone ready and out of the house. It's not to often that family members or friends actually offer to come down to visit or to help with the boys/around the house besides a select 1 or 2 (you know who you are :) ). It seems as though everyone is just as busy in their own lives. Getting three boys bathed, dressed, brushing teeth, changing diapers, feeding bottles, putting on the twins AFOs, then shoes, plus coats, hats, making sure I have pediasure bottles and nipples cleaned and packed, the diaper bag full of extra outfits and eye patches for Gavin, some sort of chairs for the boys to sit in (because people ultimately get tired of holding my kids), getting all three outside and loading everything and everyone up into their 5 point harness car seats, just to drive to our appointment, unload into the double stroller, strap one of their into the backpack carrier, take the inside to unbundle and pack them alone..... only to stay 1-2 hours.... is freaking EXHAUSTING.
I am never on time and always late. I am constantly forgetting things and having to stop and spend more money, that we don't have, to buy replacements (pediasure $15 for a 6 pack, Dr. Browns bottles, pacis, diapers, wipes, a new outfit because Gavin threw up on his). And if we're going somewhere further away from home? The drinks and snacks and toys to keep them occupied, diapers, extra clothes, oh it's like packing for a week long vacation every time we leave and most of the time just thinking about the work that goes into it is exhausting enough to make me cancel and say NO WAY. Then just the cost of driving, packing snacks, and more supplies then are typically used at home, financially is enough to make me want to stay home.
I think friends and family that we in our lives prior to having the boys have just settled into thinking we've got it handled and wouldn't use the help, or they are just too intimidated to offer. Thankfully we have settled into a routine and have cut certain corners to keep our sanity. (which is why I now have short hair and half the time you see me I've been in the same sweats for three days and have to be reminded I smell like a donkey lol) My children are provided for the best way I can possibly provide for them and I am just so grateful to even have them in my life after all we've been through, it's hard to complain about the work. I couldn't imagine my life without them. These little boys have taught me more about compassion, love, perseverance, and acceptance in the two years I've had them then I could have learned in a lifetime had then not been a part of our lives.
I may wake up everyday to Ethan ransacking the "root cabinet" with a confetti explosion of onion peels everywhere, Gavin crying because he's back scooted himself into a corner of his crib and got his arm stuck through the bar, or every Gabe finger painting in his own poop, but I wouldn't have it any other way.
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