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?