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.