Everything at our home is in a state of constant change. Whether its purging toys, adding more appointments, new referrals and services, every day seems to be as unpredictable and busy as the next.

Gavin and Gabriel are growing like weeds. Gavin is 13lb 11oz and 24in long and Gabe is 14lb 3oz and 24.5in long. Gabe just went through his "5mo/3mo" growth spurt and Gav still has not.

Both the little guys have recently seen an orthotist and we received the diagnosis of moderate/severe torticollis and severe plagiocephaly. The recommended course of treatment- the dreaded cranial molding helmet. These helmets just be worn 23 hours a day except to wash their hair, helmets, and enough time to let them both thoroughly air dry. We go on 02/01 to get their scans for fabrication and then they should be delivered on 02/11. We will go and have a 4 hour appointment to have them "fitted." The upside is that the boys will cosmetically look symmetrical once they are finished and will have avoided further the side effects of the plagiocephaly.

Plagiocephaly can cause vision, hearing, dental, and eating issues. It can also impede mobility and cause uneven jaw growth. We have been referred to have the boys seems by both audiologists and optometrists. Due to their head shape, their eyes no longer align and move in sync. Both boys have one eye that is positioned/aligned to face their nose. It almost looks like one eye is always "crossed."

We have also increased Gavin's physical and occupational therapy sessions from 2x a month to 6x a month. He still sees physical therapy 2x a month but we are discussing bumping him up to weekly. We also saw our nutritionist today who is worried about Gav's eating and weight gain. During his suck, swallow, breath sequence he forgets to swallow. Every 2-3 tries he pauses and just allows the formula to sit in the back of his throat. Then when he goes to breath he is coughing and gagging. We had a swallow study done which ruled out the submucous cleft, but we still need to see an ENT to rule out any esophageal abnormalities. We are also being referred to a feeding team. Early intervention as a whole, all his therapists, believe Gavin would greatly benefit from being fully evaluated by a behavioral developmental pediatrician. We have been referred to one in Champain. So every month/every other month we will have to make the drive. He will still see our local pedi for well and sick baby visits though.

Gabe is doing well. Cooing, laughing, supported sitting, making eye contact, tracking and grasping objects. He is having no eating difficulties right now and is gaining weight like a champ. He just started to roll over from tummy to back. It's very sporadic and not completely coordinated yet but we are getting there. He is still doing physical and occupational therapy twice monthly. He too has to get a cranial molding helmet. His torticollis and plagiocephaly is actually more severe than Gav's. Because Gabe was the "stuck donor" in our TTTS, he was in the same position with his head turned under my ribs through our entire pregnancy and has sustained the head shape and neck position beyond. With therapy and the helmet it is something that can be overcome with persistent stretching and the help of the helmet.

Ethan is doing great! He is now jumping, sorting, stacking, putting together puzzles. At 16mo he is still not saying anything. Not one single word. He makes the "da" noise but does not say it directly to Tim like he's addressing him as "dada." We are trying to incorporate baby sign into our daily life now. Currently we are working on "eat, more, open, bathroom, bed." Hopefully as we sign and say the words he will start to more vocal. His receptive language is outstanding! He understands and responds so almost everything you say to him. He has a lot of babble/jargon so hopefully words will soon follow!

Xavier just started back up at school. He is doing great reading and is making a ton of friends. He has definitely grown and developed into a little man since the beginning of August. Tim and I couldn't be more proud. :)


I am exhausted. Tim is exhausted. All of these medical appointments are overwhelming and exhausted. I'm frustrated. No necessarily with our care but with how fractured and uncohesive it is. It feels like no one is communicating so I have to rely the messages of 10 other therapists and doctors to everyone at each appointment we have. It just feels so disconnected. Then we have all these people giving us unofficial cerebral palsy diagnoses for Gavin but our pediatrician has yet to even bring it up and when I do it is not taken seriously. I'm not sure if its because Gavin is only 5mo. Even with a diagnosis nothing treatment wise would really change. I just feel like it would give me peace of mind for everything that is going on with him to have a name.

I'm also ready to move. I'm frustrated with our lack of space and being on the second floor. We also need a working vehicle that can hold our entire family. it really sucks not trusting what you have to make it down the road, let alone 70- 150 miles to some of our appts. It does put a damper on us only having one income but even if I wanted to work I couldn't. Having two preemie infants, one with special needs, and a toddler makes that an impossibility. I know family always says "put them in daycare and apply here" but I can't. We literally have an appointment every single day! I have no idea how parents do this. Between OT, pt, st, orthotist, bd pedi, reg pedi, cardiologist, nuerologist, nutritionist, I seriously have NO time to clean my
House let alone work.

Well that's all for now. I have two screaming babies who just don't want to take their afternoon nap without a fight.