On the spectrum?

I have come to realize that kids are weird. They have all these idiosyncratic behaviors that belie a human of such a young age. Perhaps it is because they have no filters? No on has told them yet that their actions are strange or inappropriate or unsavory.

Quirky ain't just for the old and eccentric. It's also for the 2 year old who likes to sit in boxes of all shapes and sizes, even boxes in boxes. Aero also likes have his face stroked. Not by gentle fingers but by fabric or fuzz or his collection of mardi gras beads. He has no real interest in motorized things; cars, truck, buses. His passion is for bouncing. He is your very best friend if you can bouncy, bouncy him. He is obsessed with shutting doors and putting on lids. He is a dumper. He can locate a container of dumpable objects and dump them into his lap at lightening speed. Yet, his next step is to pick up the strewn objects and place them back in their respective container, put the container back where he found it and then, dump it all again.
He lines up objects as he sits on the floor playing with balls or blocks.

While I giggle at all these seemingly strange behaviors, they also cause me concern. There is a growing trend amongst kids with Down syndrome to also have autism or behaviors 'on the autism spectrum'.

They are behaviors that could be classified as 'spectrum processing/integration disorder'as they are very repetitive. He also exhibits some developmental lags that may be 'on the spectrum' like lack of eye contact, not following simple direction and non existent communicative dialogue. I discussed my concern with a pediatrician almost a year ago and she referred us to the Children's Hospital Autism Clinic. We just had our 'intake' appointment this past Monday. Yes, it took almost a year for them to fit us in.

We will be returning to the clinic in the next month or so for further evaluation. I would love to think that Aero's behaviors are just weird and quirky but I fear they are a symptom of a more complicated condition.

The Challenge

Hi. It has been a looooonnnnnggggg time since I posted on this blog. 

It is National Down Syndrome Awareness Month and many families with children that have T21 accept the challenge in October of 31 for 21; a blog post a day in October to raise awareness for our beautiful kids.

I did the challenge in October 2011. I sat out last year because we had just moved and life was topsy, turvy transition. But, here we are now, stable, safe, secure, warm, happy. No excuses to not let you peak into our day to day life. 

In the pic above, Aero is doing what he has been doing quite often for the past month, trying to figure how to stand up. He is not walking, yet. Therapists tell me he will not really attempt to hurl his body into space until he masters standing independently.

O.K. Only thing is that he is really stubborn. He refuses to let me show him how to do it by squatting first. Aero rarely hangs out on his knees, let alone squat. So, my fear is that he will just hang out in down dog for the next few years letting momma carry him, everywhere, feeling so much the strain on my back and knees.

Kids with Trisomy 21 our definitely on their own timeline. It is a necessary grace to fully realize and accept this. In some ways, it makes the journey that much sweeter because you savor every, single, little micro movement on the way. 

So, if you can not beat 'em, join 'em. Down dog is an excellent stretch for my aching back.

Here me roar

I make the call on the clothes, even pajamas. Case in point, this awesome, elmo-rocker-pixy-inspired P.J.'s ensemble. I will single-handedly bring back donning a stocking cap for slumber. Or, as we do here in the PNW, a bit of fleece (sustainably re-purposed from dryer lint, of course). Cause, I am 2.

I no longer nap. Momma does not need that two hour, afternoon break from being my sole source of entertainment, nor does she need to take time to prepare meals so she can shove a quick bite down the gullet. She needs a steady dose of my cuteness and pot lid banging against the cement solos to stay sane and focused on what is important. Naps are for neonates. I am 2.

I will continuously and constantly beg for sips of Momma's coffee. I need to practice my oral drinking skills, you know. And, I am a Seattle babe, born and bred. Our first beverage should be a fine, shade grown, fair-trad, dark roast with subtle hints of chocolate and ripe berries. Plus, it promotes a regular bowel movement, a topic discussed constantly by all you big people. My logic is not faulty.  I am 2.

All those grueling medical tests, procedures and emergency room visits.
They. Will. Stop.
Today is the last day I will be held down by three big people while some weird substance is injected into my belly, a big freakin' machine is maneuvered over my squirming body and at the end the big people who all wear horrible, green, loose fitting outfits (they should hire me as their fashion consult) declare that I am fine. My intestines work perfectly.

The reason for my every month 48 hour vomit fest?

I am a mystery. I will continue to mystify.

I am Aero.
I am 2.

Too Much WTF

Deep breath....because....because I am going to cry. No, not cry...wail. I keep holding back the tears and keeping the stiff upper lip but all I can do at this moment is weep. I am weary, friends. Weary of so much shit hitting me day after day after day. The latest and greatest just within a 24 hour span;
-scheduled 4 interviews with potential nannies to take over for Aero's current caregiver who leaves on May 11. All four were no show without even a phone call or email.
-Single dad, who owns the house, going through a divorce, sits me down to let me know this shared living situation is not working out for him and I need to find a place to live. Great. I just got rid of all my furniture to live here.
-Caregiver informs me last night that he feels obligated to a friend who is going through hard times to drive her home to Utah. That means his last day is not on May 11, but TWO days from now.
-Aero has been battling a cold for almost 3 weeks. No appetite, losing weight and he is already to small.  Lost all ground on oral feeding and back to strictly g-tube. Started antibiotics for possible sinus/ear infection 3 days ago and not seeming to make a difference. What is wrong? Is his immune system all out whack and why? If you know the genetics of a child with Down syndrome, you understand they have a very compromised immune system. So, please no platitudes about how he will bounce back. I am really worried.
I don't know what to do anymore. I scared, I am confused as to the next step. I can't continue with all this WTF stuff.
Universe, why?

Change is....(gulp) good?

Aero & Auntie Chris

Happy New Year! I hope that 2012 is a sweet, sublime trip for us with our lives intertwining in all sorts of delicious ways. The 1st one will be Aero's 1st birthday on January 15th. I can't believe it! One whole year old...wow!!! It will be a relaxed, casual celebration of good food (thinking potluck) and the traditional ice cream & cake. Only thing is...Aero does not yet eat cake...if he could, what flavor do you think he would request? We will also have a little photo booth to take snaps with the celebrity birthday boy!

On a sad note, it will be our last celebration at 4319 S. Alaska. Yes, the time has come for us to ...well....figure out how to make this all work. I want to provide Aero the very best foundation I can so he can reach his full potential. I know that is NOT putting him in a daycare with his feeding tube and T21 and just hope he gets the attention he needs to thrive (that is the only program that I can get subsidy monies for). I know it IS spending his waking moments with him engaged in meaningful play and devoted care to teaching him to become an oral eater. 

I am reaching out to you for your help. I really need it right now. What would be most helpful to me is for you to just come over and spend time with Aero while I pack up and sell my belongings. It is an arduous task I have before me and honestly, I can't do it without your help. Most days I can barely get myself fed let alone pack up a house and prepare to move.

We would so appreciate the giving of your time, even an hour here and there would help.

Christmas Wishes

In trying to take care of Aero, give him the best possible foundation for a healthy, vibrant life, I have made some hugely erroneous miscalculations. Providing his care giving on a daily basis I thought was the best course of action for him. His care is very intense, feeding 7 times a day via the g.i. tube, pumping breast milk 8 times a day to provide sound nutrition, feeding therapy 4 times a day in which we work on his oral eating skills, shuffling to and fro from therapist appointment, doctor appointments, researching the best protocols for kids with Down syndrome, getting on the floor and playing with him to encourage physical activity as his low tone requires some prompting for being active, being with him in the hospital to provide the love and care that only a mom can provide, etc. However, what might have been best for Aero has placed a severe strain on finances. How does a single mother with a special/medical needs child attend to her child's intensive needs and make ends meet?

The plan is now that I return to work in order to keep our medical benefits. Sounds easy enough, right? But this one decision has made the whole house of cards topple down around me. The fact is that we don't make ends meet now and we live bare bones simple. Returning to work will not help ease the burden of tightly strained finances. In fact, I will be making less than $3 an hour because I have to pay for child care. And as many times as I try to make the numbers crunch, they just don't, won't, can't. I am sinking us into a hole and the ramifications of all this scares the hell out of me. This is how people end up homeless. Wow. 

So, what is my Christmas wish? Oh, if only those lotto numbers would appear to me! However, I need a firm grounding in reality. And the firm grounding is that we need to severely cut expenses, namely housing. I walked down this road earlier in the fall to search for low income housing to no luck. 

What we really desire is a place that is communal. Living with friends or like-minded souls  would be ideal. We need to share expenses in a household living situation. Aero is such an amazing, loving, social child that would so benefit from the presence of others around us. 

Can you help? If you know of any one that is also looking or open to a shared living situation or they have an MIL available, please, please let me know. Our timeline is now!

Much Love,

Brandy & Aero

Overjoyed!!!

A miracle happened this evening. Want to be succinct, shout it out. Yet,  feel the need to give background so you can understand how amazing I feel right now.

I have been wrestling with a conundrum; when should we tube wean Aero? It is a tough call and here's all the reasons why and how I have gotten so twisted in trying to figure it all out.

-Aero is an eater, no doubt. When the stars align, the boy can chow down. Usually, it is in social situations. Like when we have dinner at Nate & Audra's home, both visits have yielded break through milestones in oral consumption (coincidence that Nate is a great chef? ).

-Aero has not shown me to be a drinker. This is the sticky point. He needs to be comfortable with drinking because his breast milk intake by g.i. tube is 120-160 ml. At most, he has only taken in about 10-15 ml by mouth and it is so random. I offer him water quite often at meals and throughout the day. He has gotten stronger but not the level he needs to be to take in the nutrition that he needs. Purees just don't pack the same dense nutrition of breast milk. And, boy can not live by cheese puffs alone.

-I strongly want him to take breast milk his 1st year of life.  I totally have the power to affect his health in positive because children with Down syndrome need really balanced diets to thrive. Has to do with the way their bodies metabolize, i.e. they degenerate cells much quicker. Therefore, they need really healthy diets chock full of whole foods to thrive and reach fullest potential . So, I have reasoned, if I have to keep up with the tube feeding and breast milk pumping past his 1st year, so be it. Maybe we should wait and wean after his 1st birthday? That makes the most sense, right? If he can't drink the bulk of his nutrition right now than I need to wait until this critical 1st year is behind us.

-He has become very familiar with the function of the g.i. tube. Just the other day, he put his hand on his tube and started pulling. I thought he was just finding a new toy until he leaned forward and bit my boob. Oh, you are hungry! During feeding, he has recently started grabbing for the syringe full of milk, spilling it and having momma bite back cuss words. I have been trying to understand that one...does he want to drink the contents? I grab a small cup and offer him some milk, no way...that is not the proper decoding.

Ok, so what happened this evening that gives me so much hope and joy?  It was the last feeding of the day, 7 pm. This is the feeding that he can usually take in the most volume, at least 150 ml. I pushed it a bit and gave him 155 ml based on how comfortable he looked and I had not heard any grunts (I interpret as 'enough'). I unhooked the y port from this g.i. tube and he grunted. Hmm, that was curious. Maybe he is not feeling full? No, that has never happened. I proceed to gather up the  feeding supplies, take them to the sink and wash them. This is what I usually do to give him some time for digesting. He just hangs out and watches Elmo for a few minutes. When I checked on him he was still chowing on cheese puffs. Interesting and odd. His appetite has been nil lately. Maybe he is not feeling full? I grabbed a bottle, filled it 35 ml of breast milk, popped on a nipple and held it gently to his lips. He readily took it, compressed and sucked down 15 ml with no problem. He seemed to time it right, swallow when he needed to and start again. That is a miracle, miracle, miracle. The boy can drink.

Happy Thanksgiving!!!

The 10th!

Happy 10th Month Birthday Aero Lake Leigh

You inspire me every day with your courage and sense of adventure. You are nothing less than absolutely amazing!

                              

Cause & Effect

I have been worrying about this one for quite some time, the relationship of cause & effect. Mr. A has a few toys that work on the principle of cause & effect, i.e. push this button, this light blinks or a sound is heard. It never seemed to 'click' for him. I would continually push the buttons to show him the bells & whistles and ....well, that is it. He did not seem affected. It did not even seem to register. He did not want to make it shoot laserbeams of light or hear the spanish word for cat (gateau). Non issue for Mr. A.

Not for momma. Just add to the entirely long list of things that have definitions, delineations, relations. Child development, I am learning, is a world of so much time line terminology. Your 10 month old should be doing this, this and this...reads my email from babycenter.com. Every single solitary developmental minutia has a term and time line to determine if your child's progress is 'typical'. Groan. Sigh. Cue the anxiety.

I guess that maybe Aero's T21 gives us a bit of a break and I should relax a little. Children with T21 hit milestones, they just hit them later. Fact. Perhaps my attitude adjustment should focus on the 'fact' that later milestones means I experience precious 'babyhood' for more time. I mean, take a look at the above photo. Does he not look like a budding toddler? Sigh. Sob.

OK, back to cause & effect. He understands the relationship. Every time he is in my arms and we pass the kitchen faucet, he sticks out his hands to be washed. He totally trips on the sensation of water running through his fingers. And, he whips his torso around when we walk by my desktop computer. Every morning we do a reading program that creates a rapt Aero sitting on top of the desk, paying very close attention to the images flashing before his eyes.

I also need to remember that his AHA moments seem to happen when I am in the kitchen. As this one did...those butttons were pushed many times tonight, finally. Thank heavens 'cause every 10 month old needs to know 'gateau'.

for Aero addicts only

Nate & Audra visited us on Thursday evening. Aero turned on the charm and served as after soup entertainment (note the "I can feed myself evidence" on the t-shirt). It is hard to see in this video...but he keeps doing this subtle shimmie of his shoulders like he is strollin' all hot and handsome in the big city. Nate is holding him so he can balance his feet on the floor. Seems he is encouraged by my giggles or just surprised that I find it so very humorous.

S.O.S.

"The most important and enjoyable thing in life is grappling with a
complicated, tricky problem that you don't know how to solve."
-William Vollman


Friends, I am hurting. I need help. My energy reserves are fumes.
This is such a big responsibility and my years of doing every thing solo is not doing me any favors. Nor, is it doing Aero good.


Raising a child, rewarding, joyous, heart opening, toughest work you will ever do. 
Raising a child as a single parent. Tougher.
Raising a special, medical needs child as a single parent. Wowie zowie. 


I am trying to juggle all these balls and take care of myself and it is grinding me down. 


This is what is going on right now....


-We are doing feeding therapy 4 times a day. This means preparing at least two different food puree options, a sippy cup of breast milk, a straw cup of breast milk and a piece of soft fruit or veggie for his 'suck' sack, syringe, y-tube connector, breast milk for syringe. Some sessions Aero is gung ho and takes in 15-30 ml by mouth. Most times, he is kind of lukewarm and takes in 5-10 ml by mouth. I make up the difference by holding a syringe full of breast milk attached to his g-tube and gently pulsing it into his stomach (trying to create that uneven way we all take in liquids by mouth). Total intake at one session should be at least 145 ml. Feeding sessions are at least one hour.


-Washing all these items 4 times a day.


-Pumping breast milk 5-7 times a day.


-Washing all these items 5-7 times a day.


-At 7 pm when he goes down for the evening, I have to make up the calories that he is not taken in during the day by 'feeding' through the g-tube. I drip in small volumes, every 30 minutes until 11 pm. 


-I am sure you can understand what this all means...a very isolating existence.   Very short leash to the house during the day, lock down in the evening.


-Feeding myself 3 times a day. Usually, I will bake some type of protein (salmon fillet, chicken breast) in the morning before he wakes up and take bites all day as time permits.


-Speech therapy every morning after the 1st feeding. We do a reading software program and spend at least 30 minutes reading books. I am concerned about Aero's speech/communication ability as he has had very limited oral motor functioning (no sucking since birth which exercises the mouth muscles and readies for speech development). We already know that children with Down syndrome have challenges with speech because of low tone. Not having oral motor sucking skills will slow his ability to communicate. 


-Physical therapy in the afternoon done by me. The P.T. comes once a week to help me asses where he is at and what to work on. Aero needs to be played with and gently encouraged to move as he is not very physically motivated. Again, physical movement is really important for his overall development from cognitive functioning to gross/fine motor skills. He is about 4 months behind his same age group; a combination of 4 month hospital stay flat on his back and hypotonia (low tone).


-He takes an hour nap early afternoon, this is when I make phone calls and arrange for his different medical therapies/needs. We are in the process of 9 month check ups for hypothyroidism, leukemia, nutritional deficiency, supplement protocols, therapies. This really is the only time I am not hyper-vigilant baby watch.


-Trying to decide if we should enter the 'feeding therapy' program at Children's to speed up the tube weaning process. Tube weaning can be particularly stressful for the caregivers (me). Yet, I am feeling like such a prisoner in the house as it is most convenient we are here for feeding therapy sessions. We really can not go anywhere that is not within a 15 minute drive of the house as therapy is every 3 hours.


-Need to decide on a date for surgery for his undescended testes. Hate the thought of back sliding progress with surgery recovery time given that we lost time with our 4 month hospital stay.


-Waiting for 2nd court hearing to take place on December 21. What is being decided? Well, the increased financial needs of a special/medical needs child and childcare costs were never figured into the original computation. Therefore, I have not one single penny to throw towards childcare. In other words, I don't get a break for my own self care (shower, dentist, a run, yoga, ...). Little did I know that requesting a hearing to right the financial mis-calculation would take 9 months to happen. 


-I have obliterated both my savings and my 401K. Penny pinching is the rule as I am only able to work 2 hours a day, in the evening after Aero goes to sleep.


-Hank needs special care, also. He is diabetic and requires insulin shots 2X day. Neuropathy is settling into his hind quarters (not able to walk well). I am trying to prepare myself emotionally for him not being around to much longer.


-Trying to find low income housing in the south end to no luck. Crappy economy has created 'a no room at the inn' scenario.


-Those are the items that are because of our set of medical and financial challenges. I am not going to list all the other things we do that are just 'life' (laundry, car maintenance, grocery shopping).


Please know, my intention is to somehow, someway relay to you how very much is on my plate and that I am stressed to the max. I would so appreciate your help. How can you help? Just come by and sit on the floor and play with Aero while I take a shower. Or, hold him while I vacum or read to him while I run an errand. He needs some different energy than momma's frantic, stressed out state of being. He is such a social baby, he loves people and different vibes than mine. If you can't come by to give me a break, anything that you can do to help with resources would be so greatly appreciated.


I understand why they say it takes a village to raise a child. No one can do this alone and do justice to their child's well being. You are my village. Can you help me make this the best possible life for Aero? 

Finds Voice, Rejoice!!!

Aero speaks.
Momma.
Momma, momma, momma.
Yes.
First words are momma.
This momma is over the moon.

just cutenss

Camera shy?
No way!
BTW...I'm the stylist but he insists on doing his own hair.

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.