the charmer

making best buddies with Hank

Aero and I entertained each other in the waiting area for Lab Tests at Children's Hospital this afternoon. We played bouncy, bouncy, the game where momma gets a shoulder and lat workout by lifting him up & down, up & down while he giggles at the sheer delight of being airborne for a few seconds. Our wait was quite protracted as the labs they were to perform took a lot of data- basing into the system so they could print out all the pretty stickers for the numerous vials of blood.

A generation of ladies sat next to us; grandma, mom and daughter. The pretty daughter was 17 and the mom looked like she could be the daughter's sister. Found out that she gave birth to the pretty daughter at 15. Wowie zowie. Also discovered through conversation that the mom had always been a single mom. Wowie zowie.

My most delightful discovery of the day though was Aero's flirting. I had never seen him turn on the charm so bright! He was all smiles and giggles for the pretty daughter. He could not take his eyes off of her and definitely was working on winning her over with his high wattage, luminous grin. I had never observed this part of his emerging personality and it so tickled me.

He was a champ for the blood letting. My oh my did they take a lot, at least 12-15 vials. Prior experiences had been very traumatic with techs not finding the vein and playing poke, poke with my baby's tender arm. This lab tech hit it on the money right away, sweet blessing that was. Aero cried at being held down for so long and immediately fell deep asleep the second I put him the car seat for the ride home.

Waiting anxiously for all the results.

testing, 1, 2, 3....

cheddar pufffs...rich in zinc?

We plan to visit Children's Hospital tomorrow for a CBC (complete blood count). We need to understand if Aero is deficient in micro nutrients among other markers. Children with T21 are usually deficient in many micro nutrients with Zinc being a very important one.

What happens when your body is depleted of zinc?

-thyroid dysfunction which means sluggish and low energy reserves
-immunodeficiency which means repeated respiratory ailments, colds, flu, other viruses
-slow growth of all processes, not just physical growth
-faulty DNA repair

This is just one of the many that are concerning, others; selenium, vitamin d, markers for celiac disease, leukemia, etc.

Please say a little prayer for Aero. Kids with T21 have tiny veins so we pray for an experienced lab tech who makes it easy peasy for Mr. A.

Stay tuned for the results....

bad momma

bad momma 

posting pictures of her darling child's intimate moments of struggle

i give you 

poo face

Roar!!!

the proud moment, roar indeed! and, could the hair be more perfect?

Been working hard to to slash my expenditures. Decided to cut the basic cable, internet & local/long distance land line. Switched to Century Link for reduced internet speed and local land line which is saving us $50/month. Who has land lines these days, eh? Well, single parents who would panic if their child had a medical emergency and they could not locate the cell phone quickly enough or it needs charged. That four years of Girl Scouts paid off in that now I am a parent, I tend to live by the motto "Be Prepared". Oh....wait....I think that's the Boy Scout motto. OK, helped that I 'hung out' at my brother's Boy Scout functions...had a couple crushes on his Scout pals.

The Century Link tech arrived to take care of the installation. I was holding Aero and put him on the floor to hurry down the stairs to let him in. I showed the tech where the wall jacks were and glanced in the living room to make sure A was OK. He seemed contented, sitting up and chewing on a wooden rattle. Wait...sitting up? I distinctly remember laying him on his back. No way. He got into sitting position for the very 1st time on his own and I missed it? Crushed. I applauded and cheered anyway. So proud. Yet, my momma brain could be fooling me, maybe I did sit him up? He has this uncanny move that when I go to put him on the floor he does a little jack knife so he is placed on the floor sitting up. Perhaps I was in to much of a distracted state to properly remember?

Fast forward to this evening. I was in the kitchen doing dishes at the sink so I can easily watch him on his tumble mat in the living room. I looked up from sudsing a bottle to spy him prone, tentatively creeping his leg out to the side, other leg bent underneath him, arms in front, fingers creeping along the carpet to gently bring his torso up on his hips to sit. Wow. Wow. Wow. Beautiful job my little Bubbage (Bubba + Cabbage), just beautiful.

Intuition Wins Again

We visited Dr. Molly, pediatric naturopath, early last week. She held Aero in her lap and introduced herself. Since our meeting, she has emailed me several times to update me on information, resources, testing, etc. She has phoned me twice to clarify and explain info she sent me via email. She is truly a partner in Aero's care team. Dr. Molly helped me out when I first discovered I was pregnant. She got me through the initial shock and discussed with me the road ahead in terms of nutrition and well pregnancy care. Unfortunately, she was not mid-wifing and could not take me on as a prenatal patient. I decided that she would be an excellent care giver for my unborn baby. As we know, Aero was born with a few challenges. At discharge from the hospital, I decided that maybe it was best to take him to a traditional alopathic, western medicine pediatrician given the complexity of his care. I should have listened to my initial hunch. Another lesson in learning to trust your instincts and those little voices that nudge in directions unknown.

Momma Got Mad

I have spent the past few months researching how to create the best life for Aero. I have been diving rather deeply into Down syndrome therapies, science, advocacy, etc. I have just scratched the surface in how I can best serve Aero. I am amazed, awed and inspired by several moms who blog to share their discoveries in teaching methods, neuoroscience, developmental practices, supplement protocols and also, provide a lot of support to moms like me, just starting down this path. Thank the universe for their passion and dedication. Here is a link to just one of the sites if you are interested in furthering your knowledge www.einstein-syndrome.com.

Thursday was Aero's 9 month check up with the pediatrician. She had only met him twice before, in June for an  intial meeting and July, his 6 month check up. The first visit in June, Aero was just out of the hospital and I was dazed and distracted with all that involved his care at home. On the 6 month check up, I had a few questions about vaccines, leukemia (kids with D.S. have a higher incidence of leukemia) and seeking a referral to see a feeding specialist and ENT (ear, nose & throat) at Children's. She quickly answered my questions and wrote the referrals. I don't even remember her touching him. Though, that can't be right? How can you do a check up without an exam?

On this visit, I was prepared. I had done so much research that had created so many questions. I even made a flow chart in excel to prepare myself so my chain of thought would stay fluid and I would not forget anything. I also had a copy of the Pediatric Guidelines for Care of Children with Down Syndrome. According to this resource, quite a few tests that should have been done had not even been spoken of or suggested. This is what I find to be my greatest role for Aero, advocacy. Seriously folks, you think your pediatrician or other caregivers in the medical field would be up on this info but they are not. Perhaps their caseloads are too large, or they don't have other kids with Down syndrome as patients or.....whatever. It doesn't matter. And it does no good to bitch and moan. What I can control is my own knowledge. Parent, PhD as one of the  moms suggested.

Aero is naked, except for a diaper. The nurse just weighed and measured him (19 lbs 7 oz, 28 inches). We are waiting for the pediatrician I had a really hard time finding a pediatrician. I chose this one because she is also a constitutional homeopath which means that she gives credence to alopathic healing as well as complementary. A knock at the door and a young man enters. He identifies himself as Dr. David ??? (can't remember). He says that the doctor will be in soon he is just here to do preliminary.

Preliminary? Great. Aero has a huge medical history and I really don't want to take the time with my naked baby to bring Dr. David up to speed. I try to convey this as politely as possible and also mention that I have a ton of questions for the doctor regarding the Pediatric Guidelines for the Care of Down Syndrome. She arrives 5 minutes later and is pissed. She launches in to me, extremely defensive, barking that she had done this and done that and she does not like this and that and won't let me finish a sentence and basically tries to belittle and humiliate me. I tell her that she is not letting me finish my thought or a sentence and would she please stop talking. "I am a single parent of a child with Down syndrome and special medical needs. I want my child to realize his potential and live the best quality life that is possible (I think this is when I started crying). I have done an intensive amount of research on how I can affect that and I need your partnership. Is this something you are willing to give by working as a team in his care?"

She listened. She made the referrals I needed for tests; CBC (compete blood count) to check many markers for nutrition. Kids with T21 generally have a depletion of zinc and selenium which creates a whole host of problems, under functioning thyroids, celiac, sleep apnia, etc...the list goes on. I also believe it would be highly beneficial for Aero to be involved in a neuro development program. They would be more the drivers of his care rather than the pediatrician.

And, guess what. She did not examine him, again.

Chillaxn~ Aero Style

Would you believe that he just bench pressed the kleenex box 10 times, performed 20 baby crunches, did 6 laps around the living room crawling on his belly and was now taking a well deserved break?
I didn't think so.

Baby Bro Makes Me Cry

My baby brother Joe made this montage of my beautiful one. It made me cry.
"I never knew love before...then came you...."

Aero has a stomach virus. He has had diarrhea for 3 days and today he started vomiting.  I fed him via g.i. tube at 4:30 pm. At 5:30 pm he vomited and just wanted me to hold him. He cried and cried. Aero is not a baby who cries easily or often. When he does, you know he is in distress. I could feel his stomach lurching and churning.
One of the good things about having a g.i. tube is that you can vent out stomach contents. So, rather than wait for another vomiting episode (or two or three), I attached the y-connector, left the port open and out it came with a lot of air bubbles. Tonight, all night, I will administer, via g.i. tube, Ultima (a natural alternative to Pedialyte) every 30 minutes to re-hydrate and bring his electrolytes in balance.

Hope he wakes up feeling better.

Aero & Elvis

I am new to Elmo. I love Elmo. Aero loves Elmo.
Maybe, one day, I will grit my teeth and my eyes will spontaneously hemorrhage when I hear that telltale Elmo chuckle. But, for right now, I am basking in the radiant smiles and giggles that Aero bestows whenever Elmo is around.

sins of the father, part 1

me, joe, dianne, dad, stinker

My father was a single parent, for the most part. He married Bonnie when I was 6, divorced less than 6 months later. He married Mary Ann when I was 8, divorced when I was 11. The time with Mary Ann is what I look to as the most idyllic of my childhood. Home from school, change into play clothes, have a homemade snack, play outside, either on the beach or in the woods, dinner together as family at the dinner table, change for bed, have a snack and sweet dreams. Oh, beautiful consistency and structure. This photo was taken during those halycon days.

My father had a gypsy soul and big heart. He was a career Navy man, his last post being stationed at Puget Sound Naval Shipyard, Bremerton, WA. He enlisted at age 17, retired at 37. His wander lust created a bit of a nomadic childhood for myself and my younger brother, Joe.

At age 8, without my father, he put my brother Joe and I on a plane to live with his parents in southwestern Pennsylvania, coal mining country , land of lush, rolling hills and rabid Steeler fans. To this day, I don't know why. I can't even recall feeling strange about it the move. It just was.  Just a few months later, he showed up, married to Mary Ann and with her daughter, Dianne. We all moved to Norfolk, VA and spent a summer in a house 4 blocks from the ocean and with a real life swamp in our backyard.  We moved back to Bremerton just 3 months later.

I became much more aware of my father as a person when he and Mary Ann split up. He was a gentle, giving soul in his day to day interactions with folks. Yet, I could feel a confused, torn and tormented man lurking beneath the surface. I was 11 years old when I started taking on my daddy's darkness. I began to feel the burden of carrying the emotional weight for our tiny family. 

At age 12, we were once again boarded on a plane bound for P.A. This time, I was mad. I had just hit my stride in junior high and I was loving every moment; pep rallies, basketball games, disco dances in the cafeteria and boys! Every time I talked with my dad on the phone, I begged him to let us come back. At the end of the school year, we flew west to Portland and stayed with a family we knew in Port Orchard. Four months later we took the a Trailways bus cross country, this time with our father. 

My father decided he needed his family's support. He was finding life difficult to navigate with the responsibility of raising teenage 2 kids. He spoke of aunts, uncles, cousins that would be able to help us out. Little did we understand the kind of help that was needed, required. 

Oops!

Totally forgot about posting! I was really wrapped up in doing some online research for therapeutic protocols for children with Down syndrome. Absolutely fascinating. A complete oversimplification of the science, but all the extra chromosomal material creates an overabundance of protein in the system which creates A LOT of oxidative stress on the body, especially cognition (brain development). So, the theory is that if you can arrest the deterioration through nutrition and supplementation of anti-oxidants, you can increase cognitive synapses. Lots more to study. The challenge is that doctors are not aware of all this research and the amazing quality of life that some very diligent moms have created for their kids by being really savvy and smart. Jeez, Moms rule! The doctors just think that that it is what it is. I say phooey on low expectations and not helping Aero realize his potential.

Sol's Visit

We visit 13 Coins Restaurant every time Sol comes to town (mostly for breakfast). On his last visit, it was March and Aero had been a resident at Swedish for over 2 months. I was so in the rabbit hole of having a baby in the hospital. Life for me was extremely stressful and myopic. I felt I was in a time warp vortex, never to escape the existence I was currently experiencing. When Sol mentioned that on his next visit Aero would be joining us at 13 Coins I did not believe his words.

Yet, here we are and Aero is feasting on knuckle sandwich. Aero is a very social eater. He wants whatever you are eating although he has not graduated from puree texture ('cept for those awesome cheese puffs). I fed him a bit from my plate, a little egg yolk and gravy. A waiter walked by and gave Aero a little head massage. He could not resist touching the pixie rocker do Mr. A was sporting that morn.

Aero's new tumble mat, a gift from Uncle Sol. The blanket on the floor was cutting down on his 'moves'. Aero is more of an observer. He seems mostly content dumping out the contents of the plastic bins and then chewing on them. In an effort to encourage more locomotion, we thought this slippy-slidy surface would help.

The entertainer.

Bed time stories?

Bro Love

It was so amazing to have Sol here. He was our first over night guest since Aero coming home. We are living an rather isolated existence because of Aero's feeding therapy and feeding schedule. It made things feel (sigh) a little normal, a little easier. I could exhale not feeling that I was the only one on baby watch. Aero so appreciated being held by Sol and spending time in his company. And maybe because I was a wee bit relaxed, Aero had a breakthrough in his feeding. He is taking breast milk from a spoon. Little by little, drop by drop adds up. It takes about 30 minutes to have him drink 20 ml (one feeding is generally 140 ml). Slow. Steady. Progress.

Happy 9th Month My Bubbage

Uncle Sol is here visiting us from New Hampshire and we are having a grand time. That's why the 2 days of very brief blog posts. Have so much to share and will do tomorrow. But, for right now, at this moment, please take a moment to say a big thank you for this precious love and his 9 months of existence on this earth and for blessing my life with so much incredible heart busting joy.

Best Day Ever!

Sorry for the tease but I am absolutely exhausted and I can't adequately describe what an awesome day this was for Aero. I will tomorrow.

Aero's First Food Love

This imp, baby of popeye'd forearms, mesmerizing blue eyes and giver of sweet as pie chunky monkey slobbery love kisses, is double fisting smart puffs in this photo.

The feeding therapist at Children's Hospital introduced them to him last week. She called them 'crunch and melt' food. I have not been able to pry them from his hands since.

They satisfy his need to 'CRUNCH' while not being threatening to his new found swallowing food skills as they turn to mush as soon as they mix with saliva.

Incidentally, we have discovered a new non-toxic super glue...smart puffs and Aero's saliva. Kind of tough to pry from kitchen floor once dried.

Meltdown = Me

Meltdown. Complete and utter...sobbing hard and deep.

Today was that day. The day where the carefully constructed house of cards, my web of illusions and gentle denial met face to face with hard, cold, reality. 

Somehow, someway I have to got to figure out how to navigate this all because right now I feeling so stuck in my own mud. This is hard. There, I said it. Being a single parent is real hard. I find myself worried over everything; Aero's health, how I can best parent him, how I can best be his speech, physical and feeding therapist, how I can best be his mom, how I can support us, do we need to move, where will we move, what medical tests does Aero need this month, next month, when can I take a shower, why isn't he eating more, what food can I make to entice his eating, and am I doing everything I can, what else can I do......it is tough being my own sounding board, the conversations in my head just go in circles 'cause I am having dialogue with myself.

Zia J to the rescue. She has such a beautiful way of just cutting through and focusing on results. I think we at least have decided to investigate low income housing. Perhaps this option will at least let me worry less about finances. I could really use one less worry. That would be nice. 

Occupy LR

Mr A getting creative with his play gym. Has already sussed how to make a fort. Or, perhaps it is an 'Occupy Living Room' protest regarding his boredom level with his toy assortment. Guess it is time for a trip to our fave toy store, SoDo Goodwill. Seriously great selection, they are clean and why would you pay full retail when Aero's feed me stimuli factor is set so very high?!

Drink

"When will they take out the tube"? This question is asked so often. My answer is, "it is up to Aero". Aero will decide based on how quickly he will learn to oral feed. Aero is progressing nicely at oral feeding. Eating solids is only part of the equation for a child under the age of one. It is the lesser part. The skill that Aero must master is drinking. 100% of his nutrition is liquid in the form of breast milk.

Most babies...I don't need to explain it , right? We know how most babies receive breast milk. If they don't breast feed, they bottle feed. Aero has done neither nor does he have the mouth muscle/swallow coordination to perform either one of them to receive enough sustenance. How are we going to transition him to oral feeding when he does not have the skill set to drink liquid? How does he gain the skill set?

This has confounded me ever since I realized he was not going to breast feed. He just does not have the coordinated negative pressure suck, swallow, breath rhythm because it was suppressed at birth with all the tubing he wore for 3 months.

Four times daily we do feeding practice. Aero's progress is a sight to behold; he is eager, interested and craves variety and flavor complexity in his food choices. His intake ranges from 2 ml to 15 ml at one sitting (perspective, his total daily intake of breast milk nutrition is around 750 ml). Not so worried about intake volume but frequency of trial. Practice, practice, practice with the goal being a confident and strong swallow. And, for babies under one year, solids are not be THE source of nutrition/calories. Solids are about food play; experiencing new flavors and textures.

So, how is momma trying to teach Aero to drink liquids? One tiny drop at a time with a multi-pronged approach. First approach is sucking through a straw. I cut some soft, narrow plastic tubing about 3 inches long. I suction into it a few drops of breast milk and present it on his tongue. The hope is that he will accept the liquid by swallowing (at first, he just let it spill out of his mouth). The next step is that he will close his lips around the straw. The next step would be that he eventually sucks at the straw coming to the realization that he can control the flow. I think this will take us about 2 months until we get to try with a cup and straw.

Second approach is drinking. Filling a small beaker 1/2 full of breast milk and placing his hands along the side with mine over top. I tip the breast milk gently to his lips and right now he darts his tongue in and out of the liquid. This will be the most difficult skill to master as it takes a very coordinated effort by several muscle groups. I am not sure a baby can gain the skill but I think it is a worthy practice because it allows him to swallow small amounts of liquid and that helps in making him more comfortable with liquids. It is a challenge going from a puree texture, something that you can get your tongue involved in the movement of. Breast milk is thin and it quickly moves around your mouth. In the beginning, it was disconcerting to him and he did not know how to handle the thin liquid so he would spit it out in panic.

Third approach is bottle. I purchased some slow flow nipples that allow for flow through biting and we are using a very small bottle he can get his hands around. This one requires some heavy duty psychic skills on my part as he is not often in the mood to try. The best success I have is when he is an intense oral mood, trying to chew on anything and everything (as babies do at this stage). Twice now I have hit this one right and he has chewed at the nipple releasing just enough breast milk that he can control.

Also realize that this is just not about nutrition. This also plays a very big part in language development. Having a strong, coordinated suck/swallow is very important to developing the ability to speak. I am sure you are aware that it is a challenge for children with Down syndrome to speak legibly so they are understood (we are are also working on baby sign language but that is another story). That is why working on these foundational skills is so important in helping Aero achieve his fullest potential.

I love working with him everyday. He is so courageous and  adventurous. I know that one day I am going to watch him gobble down a piece of pizza in 2 seconds flat and chase it with a big glass of milk and find it incredibly funny that I worried that he would never know the joy of yummy food.

Still

Sit still.
My response to online dating surveys when inquiring as to your favorite activity.

For 20 or so years, I have practiced the art of deep stillness. Typically, my sit still sessions coincided with sunrise. I began my day enveloped in darkness, awake, aware, steaming cup of coffee in hand, journal and pen in the other as the sunlight slowly spread itself across the horizon.

I never understood the perpetual motion of some women. Always up and about doing something. Why? Sit. Still, for awhile, I would implore. Can't the dishes wait?

Aero had been home from the hospital not 48 hours when I realized my 'sit still the dishes can wait' paradigm had to do a major shift. When I let the dishes wait, they waited 3-4 days, piling up before my horrorfied, sleep-deprived eyes. Panic ensued because the more I avoided, the bigger the the project became and caring for Aero was all consuming. When would I find the time?

And as the paradigm shifted, the veil lifted. Now I know why 'some' women (read: women with children) are perpetual motion machines. If you don't take the moment, you lose it. Walking around the house with a crying baby and spying piles of dirty laundry, dust bunnies, dirty dishes and overflowing garbage do not lend itself to staying calm and centered in the storm.

Sitting still is still my favorite activity only now I share the time with the best snuggler in the world. And although stillness is now truly a luxury, my life long practice has given me the ability to close my eyes for a moment to feel that sense of peace and calm that stillness allows.

Almost Autumn

Posing with a few first harbingers of autumn

What Is Cryptorchidism?

Emesis
Rummaere
Anastomosis
Gavage
Hypotonic

I have encountered a whole new language immersed in this world, the world of medical-ease. Prior to the c-section surgery that brought my beautiful boy into this world, I had never, ever been hospitalized. Can't say I hated hospitals because hate for me is a strong emotion saved for someone, something that done me wrong. Hospitals, per se, had never done me wrong. Honestly the most exposure I had with hospitals was General Hospital, yes the soap opera of which I was an addict in my late teens. Also, Marcus Welby, Chicago Hope, Nurse Jackie. You get the picture, TV Land fed my paranoia. I truly carried the prejudice of a good vs.evil schema. There were a few good doctors trying to make a difference fighting the bureaucratic bloat of the behemoth for profit hospital. Jeez. Yes, TV was my babysitter and look, I turned out OK except for a few, deeply ingrained delusions.

Emesis, to vomit. Anastomosis, I was able to dissect this one thanks to my origin of words class freshmen year of college (LOVED that class)...' ana is to reanimate, mosis is to make move'. It was Aero's 'big surgery', the reanimation of his esophagus. Gavage, introduction of nutritive material into the stomach by means of a tube, usually threaded through the nose.  It is a method for feeding, typically a preemie newborn who has not yet learned to suckle not do they have the strength. Hypotonic, having low tone, floppy and flexible. Babies with Down syndrome are usually born with low tone. This is why they reach milestones at a later date than typical babies. It takes them awhile to build the coordination of muscle.

Rummaere? I heard this term used quite often in the NICU. It confounded me. I thought it of french origin. My 3 years of high school french were to far behind me to be of assistance. I had to listen closely as it was only used in description of other babies, not Aero. "He is now on rummaere", questioned the nurse? Oh, maybe it is a pharmaceutical? They were talking in particular about Fritz, Aero's toe to toe roommate. Fritz wore a canula (a transparent tubing that provides oxygen delivery). He had been on for quite some time. I know his parents, Heather and James were fervently hoping that his lungs would get stronger soon so Fritz could join Milo, his twin brother, at home. Milo had been sprung a few weeks earlier. That morning the respiratory technician had been fussing at Fritz's bedside. She turned to nurse Carol and replied, "yes, he is on rummaere". Rummaere, rummaere, rummaere...lightbulb flash on and resounding slap to the head. Room air!!! Fritz was now on room air. He was off the oxygen, cannula bye bye, one step closer to  cuddling with Mom, Dad & Milo.

Cryptorchidism? Big word meaning undescended testes. In the laundry list of Aero's challenges at birth, this was at the bottom (that is a really bad pun). Visited urologist today. No testes in the scrotum. What does this mean? Surgery for Aero, again. This is reconnaissance surgery, threading a camera through the belly button to see if they are still in the stomach (where they start in utero). If so, they bring 'em down. If they can't be found, well, that means hormone therapy for Aero before he hits puberty. Your prayers, magic & juju have been so powerful. Please send good vibes that Aero's family jewels are playing hide and seek in his stomach. I have always believed that visualization creates reality. I am envisioning Aero shaving for the 1st time, sneaking my razor. I am hearing Aero with a deeply timbered voice, hairbrush in hand, serenading himself in the mirror. I am envisioning Aero with underarm hair and urging him to buy deodorant! I'll let you know when surgery is scheduled.

comic relief or worry wart?

Late night tonight. Aero did not shut his eyes to dreamland until 9 pm. That is super late for him as he usually retires around 7 pm.  We went for a late afternoon walk and he slept in his ergo carrier with his sweet head against my chest for about an hour. Oops. Late nap = late to bed.

So, that means mommas bedtime will be around midnight. This is why, I have to feed him every half hour after he goes to sleep. Aero does not tolerate large volumes of breast milk via his G.I. tube. He will vomit. In trying to convert Aero to an oral feeder, vomiting is not an experience I want him to have. It would create negative association with oral experiences. Therefore, I do everything I can to mitigate emesis (fancy medical term for vomit, sounds nicer, doesn't it?) If that means feeding him small volume during the day, every three hours, I do it. If that means making up those lost calories at night by feeding him even smaller volumes very frequently, I do it.

Mr. Wiggle Squiggle Worm wore me down tonight with his antics and acrobatics. I had planned to just let him be comic relief and post this video of him reacting to various homemade percussion shakers (dried beans in a empty yogurt cup, ice cream container, etc). He has a very primal reaction whenever I play with them. If he is laying on his back, his eyes get wide, he grins and start to flail his arms and pump his legs. It's cute, funny, a baby Aero disco dance.

 I loaded the video onto my desktop and took a look at it before posting it. It starts out funny and then creates some anxiety-worry for me. At first I think he is just making funny faces. But, one of the faces almost seems strained. I am wondering if he may be experiencing a series of small seizures?

I know, I know...worry wart momma. I admit it. I live in a state of 'other shoe dropping'. Thankfully, it has dissipated somewhat with more time away from the hospital. Yet, it is still a part of me. And, it is my job. I signed up to be Aero's vigilante advocate and I need to question things that might normally be labeled as 'ah, it's nothing'. I will add it to the 9 month check up list.

People First, Please

My 1st post dealing with a sensitive subject. I often want to correct others use of language, especially those in the medical field. If you know me well, you know I choose my words carefully, always have. Language has so much power, the spoken word shapes, defines, manifests.


I cringe when I hear people refer to Aero as a 'Downs' or say Down's kid, child, baby. The proper use is Down syndrome not Down's (no apostrophe s). Aero is first and foremost, a person. Having Down syndrome or Trisomy 21 should not define him by placing the syndrome before his name. Aero is a child with Down syndrome, not a Down syndrome child. Do you see the difference? 

Perhaps Wikipedia does a better job;

People-first language is a form of linguistic prescriptivism in English, aiming to avoid perceived and subconscious dehumanization when discussing people with disabilities, as such forming an aspect of disability etiquette.

The basic idea is to impose a sentence structure that names the person first and the condition second, i.e. "people with disabilities" rather than "disabled people", in order to emphasize that "they are people first". Because English syntax normally places adjectives before nouns, it becomes necessary to insert relative clauses, replacing, e.g., "deaf person" with "a person who is deaf" or "asthmatic person" with "a person who has asthma." Furthermore, the use of to be is deprecated in favor of using to have, i.e. "a person who has a hearing impairment" over "a person who is deaf".

The speaker is thus expected to internalize the idea of a disability as a secondary attribute, not a characteristic of a person's identity. Critics of this rationale point out that the unnatural sentence structure draws even more attention to the disability than using unmarked English syntax, producing an additional "focus on disability in an ungainly new way".

Almost

I was just thinking this morning how Aero has kind of stalled on 'milestone making'. He is multi-tasking quite a bit right now (navigating this whole nutrition by mouth thing, getting into sitting position on his own, hunting down every available scrap of paper in the house within his reach and immediately shoving it in his mouth) and apparently babies are more one trick ponies.

However, later this afternoon, I was washing dishes and glanced into the living room to see this....

The boy is feeling out the whole 'quadruple' view (fancy physical therapy term for on all fours). The rocking motion is pretty advanced stuff for him at this stage of the game. So exciting!! He plays with it a bit and than decides to try getting into sitting by himself. That is hard! Try it for yourself. Sit on the floor from laying on your back and than try to think how you would show a baby how to do it. His physical therapist demonstrated for me multiple times on multiple visits. Finally, I figured out how to coach him and he is almost there.

At the end, he decides to reward his efforts with some 'bunny love'. Wouldn't you?

Parent PhD

I am worried about my sweet munchkin. I think he may be hypothyroid. Thyroid challenges are common in children with Trisomy 21. Knowing that and a whole host of other problems that may or may not occur keep my wheels constantly spinning. In the past month I have dived really deep into researching Down syndrome and the discoveries shake me. Here is a brief laundry list of the things that children with Down syndrome have a higher incidence of experiencing;

-leukemia
-hypothyroid
-celiac disease
-macular degenration
-respiratory infections
-compromised immunity, higher incidence of cold and flu
-ear infections, very tiny ear canal leads to fluid build up
-sleep apnia
-alzheimers

Why do I think Aero may be hypothyroid? Lately, his activity level has dropped drastically. I sit him on the floor to play and all he does is sit and ....nothing. I can engage him to empty a tupperware bin of toys that I have packed full. He dumps it and that's it. No squeals of delight, no excitement. If I leave him alone for a bit, to discover, roll, or whatever he begins a low, throaty whine. He stops whining only when I pick him up.

We have his 9 month check up soon. I have a whole list of questions for the pediatrician. Thing is, I don't think they will be satisfactorily answered. Why? The other thing that I have discovered in my research is that the medical field is very uninformed regarding Trisomy. They have a tendency to fall back on generalizations. It is such a sweeping spectrum of a syndrome that if you don't have a few children in your practice with Down syndrome, why would you take the time to stay current? That is the parent's responsibility. You must become a parent PhD in all things Trisomy...more on that, later.

Buddy Walk, Our 1st

Made a trip downtown Seattle on Saturday because I realized that if we were to have rainy weather for the Buddy Walk on Sunday, all Aero had was onesies or rompers and no shoes. Wanted to get him his first proper pair of pants. Found these cords at Old Navy. Thought they would swim on him but actually, I could barely get them over his thighs. Doesn't he look handsome?

Checking out the Buddy Walk 'all access' armband. Perhaps he is sizing it up as to its 'chew worthiness'. He is so attracted to all things paper, beeline straight to the mouth.

All access arm band swag bag included a Shrek watch. Big hit with Mr. Oral.

Beautiful, every one wants to hold the baby.

Aero's guardian mom, Audra. Aero's bestie friend and momma to be in November.

That's Chris to my right. You know that saying, "it takes a village to raise a child". Chris is our village. She is an amazing support person for us and ....I just get choked up conveying everything she has done for our little family. She is good, good people.

Jemma is wise beyond her 10 years, old soul this beautiful girl. She visits Aero once a week and is such a conscience caregiver. Aero's safety and comfort are always forefront when she is in his presence. Amazing.

Sacked.

Such an inspiring day. Thank you team Aero.

31 for 21

First post on the committed path of a blog for every day in the month of October. The goal of 31 for 21 is to raise awareness for Trisomy 21, more commonly known as Down syndrome. Trisomy 21 refers to three chromosones (tri-somy) on the 21st chromosone. This extra chromosonal material is therefore present in every single cell of Aero. How this affects our life will be the fodder for this month's posts.

It is 9:43 pm and I had thought this would be a good time to post each evening. I am already having 2nd thoughts regarding that decision. I am freakin' exhausted by this time of the day.

Tomorrow we will participate in Buddy Walk which is another awareness endeavor for Trisomy 21. They are held in most major cities and attended by members of the Down syndrome community, their families and friends.

I am bracing myself for an emotional day. I am scared. I love my son with a fierceness that I did not think possible. I worry and fret over little and not so little things, mostly involving his future and my part in laying a solid foundation so he can enjoy an independent life if that is his choice. Tomorrow, I may get a glimpse of Aero's future.

How much of what I see will inspire me or add fuel to my worry pyre, I don't know at this point. What I do know is that all I can do is continue down this meandering, mysterious path and allow my heart to just grow bigger and bigger.