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.