It's finally all sinking in

After days of research and speaking to friends, family, and professionals the past couple of days, our, well, only option, seems to be sinking in. Our array of therapists have been a great support in encouraging us that this doesn't have to be permanent, that he does need this to gain weight (because we've been stalled for a few months now), and it will just improve his overall quality of life.

It will look something like this.

Our nutritionist thinks that since he can handle large oral bolus feeds, 8oz pediasure bottles, that we should be able to completely forgo a feeding pump and just do gravity fed bolus feeds with a syringe. This means he will not be a slave to the pump, won't constantly have a long tube from his belly to the pump that could be a major cause for accidents.

Plus you can decorate and accesorize! We can make this fun for Gav as well as for the other boys. They make "belly button" covers, which not only decorate but also have added medical benefits which absorb, reduce friction, and protect.

  

They also make binding bands with turtle shell openings to have access that provide added protection and stability

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It's also starting to sink in that the button won't limit his life anymore than his Cerebral Palsy already does. I think it's just going to take a little time to adjust and learn, and for Gavin to heal.

We have our surgical consult on Tuesday morning so I will be sure to update after!

equiptment galore!

So besides the much unanticipated conversations about the g-tube we have some things to look forward too...

Equiptment!

Gavin is finally getting fitted with some equipment that will help support him in order for his body to properly grow, provide support in order to learn new skills and interact with us as a part of the family. Gabe as well! I am BEYOND excited.

KidKart TLC

It will provide lateral side support as well as head and neck (with his optional headrest included). It can be turned around to face me when pushing or out forward. It also has the tilt in space feature to recline! Now when we go places he will have a place he feels safe and secure that can accommodate all his needs.

Squiggles Stander

Obviously not in pink! His will be a little different but this is a general idea. He will be able to lay on his belly tilted up flat, his back tiled up flat, or stand erect in it. It will also have a place to hook on a tray in order to stand and play. Standing and not being in a chair will allow him a "regular" point of few as well as decrease his risk of blood clots in his legs from being stationary.

KidWalk Gait Trainer

His will be a little more involved with a chest support and head rest. But this will give Gavin the opportunity to learn to walk and be mobile!!!! I am beyond excited. I think just having the opportunity (even if progress takes a while) will boost his self esteem incredibly!

We are also getting a Rifton Bath Chair as our infant bath seat is becoming to small for our growing boys :)

Gabe will only be getting a walker. He is doing so well progressing in his skills. We still have a mild delay but he is starting to catch up!

He will be recieving a Rifton Pacer.

It will be about as involved as the picture. Gabe really just needs it to learn to walk correctly with his new AFOs and to provide some stability as his CP causes muscle weakness in his lower body. He bares a lot of weight in his upper body when he takes steps. Our hopes are to one day graduate to crutches or hopefully to walk unassisted! But for now this is it.

We should receive our stuff within the next 4-6 months.

G-tube. The day has arrived.

Well Gavin had his swallow study yesterday. They noted that he has insufficient suck/swallow. He has deep laryngeal penetration on all flow levels and consistencies, and aspirated on all flows faster then level 1. They suggested that we may need to "consider alternative feeding methods (other than oral) for meeting nutritional needs and efficiency of feeding."

What they were dancing around ever so politely was that Gavin was needing a feeding tube, which we have tried so hard to avoid. They stated that we are at a critical fork in the road. We could continue down the path we are on and potentially and subsequently compromise his respiratory system and subject him to chronic illness or we could surgically place a feeding tube into his stomach for liquids and still continue to do oral feeds with solids or controlled bolus's. He passed with flying colors on solids because his neuro-motor control is stronger. The liquids he's drinking are seeping into his lungs and he doesn't/cannot cough to expel them. Essentially he is drowning on dry land a little each bottle he drinks.

They said absolutely no water or thin fluids via bottle or sippy cup. He did excellent with pudding/applesauce/banana/and pb&j while we were there. The attending physician just said that consuming solids would tire him out too much to consume fluids. They recommended only offering the Pediasure in a level 1 nipple *but with fatigue he has at risk for aspiration* until we come up with a plan. So today we set the gears in motor. I contacted the ordering physician, which was his ENT, who said at this point it isn't a structural issue he can fix surgically but one we would have to refer to our general pediatrician to follow up on. I placed a phone call to her nurses, and tomorrow we should have a plan. There aren't really any excellent pediatric GI surgeons in central Illinois, as it seems we live in a pediatric medical dessert, so we will most likely have to go to St. Louis Children's. We still have to follow up with Gavin's Urologist about his scrotum/testicular surgery and schedule his eye surgery. We are going to try to do some combination of them so he only has to be put under once or twice but I just don't want to overwhelm his body too much to compromise his ability to heal efficiently and without infection.

It is the right step for us at this point. Gavin hasn't gained any weight in almost 3 months. Gabe is now up to 27 lbs while Gavin has been hanging tight at 22 lbs. He is also only meeting 50% of his fluid/nutrition needs daily now because drinking the pediasure is either becoming too painful or he is becoming disinterested in drinking 5 vanilla pediasures a day for his fluid needs and then being too tired to consume food.

I will update as soon as we have more concrete information.

Toddler Tantrums

Welp, we've finally hit the age. The age of extreme tears, flopping on the ground like a fish out of water, and little scrunched up shoulders and stomped feet. The times of sweet smiles and funny sounds are in the days of yester. Ethan is now the king of yelling "YES" back every time anyone says "no." He is also getting so bossy to Gavin and Gabe. It is his way or the highway. Just tackling that wouldn't be an issue but now Gabe is the same way! Instead of using his words though we are full of bites, hair pulling, little punches.

I am one frustrated mama.

A Day in the Life

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

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

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

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


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

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

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

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

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