CP/QF Crazy: Follow-up On Family of 9 Living in a Garage

How freaking crazy can you be?  No, seriously. 

Lots of people dream of living a completely debt-free life.  In the absence of being independently wealthy, most people decide to manage debt responsibly by restricting debt to secured debt like loans to purchase a new or used car or a house, debt that raises the income of the person like educational debt and limiting the amount of unsecured debt like credit cards.  On a more personal level, people committed to living debt free chose to delay child-bearing until one or both people are in secure careers and often choose to limit their family size.  Homes are quite expensive and large families cost more money. 

On the other hand, a lot of CP/QF large families live in poverty while idolizing families who live in even more extreme circumstances.   A common lament of huge CP/QF families where the mother is reaching the end of her reproductive years is that domestic foster care and adoption has ridiculous requirements like that prospective adoptive families who will be adopting unrelated children can show income over the federal poverty level for their new family size.   For new readers, the federal poverty income guidelines in the US are agreed to be absurdly low by people who work in poverty prevention.  A good rule of thumb is that most families need at least 200% of the poverty guidelines to live a frugal middle class life - so the US poverty guideline of  $20,730 for a family of three should be closer to $42,000.    To size this up to QF families, Kimberly at Raising Olives used to complain that their family of 12 kids and two adults couldn't adopt domestically because the family lived on less than $72,620 per year. 

Back in 2005, Amy at Raising Arrows wrote a blog post about a family she idolized who had nine kids living in a garage for one year so they could build the home of their dreams.   In 2018, I wrote my response to the major reasons I could think of why living in a garage is probably illegal; my more obvious concerns were a lack of exits, too little area of windows,  too little square footage per person, infestation prevention issues and the fact that the taxable value of the land is affected by having a second dwelling onsite.  It turns out that Amy managed to get a hold of that family and write a follow-up in 2017; I'll refrain from guessing as to why it took 12 years to catch up with them. 

Turns out some of my unspoken assumptions were just plain wrong.  Silly me - I assumed that living in the garage would start when the family had all of the money set aside to build the house so that the time living in the outbuilding would be limited to a single building season.  Oh, boy, was I naive!  FIVE YEARS!  The family lived in a garage for 5 freaking years! 

I'm still shocked and horrified - so I guess I'll start with the size of the garage.  The family says that the garage was 24' by 30' and at least partially built to purpose for living in.  The square footage is 720 square feet.   Now, the 1986 guidelines for safe living spaces stated that the minimum square footage could be calculated by 150 + 100(n-1) so a family of nine would need 150 + 100(8) or 950 square feet minimum.

Now, if I was living in a garage, I would be on like 5 forms of birth control - including "we're not having sex until we get a real house or apartment" followed by 4 other forms.  Apparently, I'm crazy because the family happily admits that two children were conceived and born while living in the garage.  That pushes the minimum square footage to 1150 feet - but I'm more horrified at the idea of adding two newborns sequentially to a garage home.   The family mentions that the time they lived in the garage was extended because of unexpected building costs and high medical bills.  I wonder how much of those medical bills were due to two labor and deliveries; childbirth is expensive even when everything goes perfectly.

In terms of exits, the garage did have two external doors that were not garage doors.  Assuming the drawing provided by the family was reasonably accurate, the garage was not compliant in terms of emergency window egresses from the bedrooms.  Personally, I'd be very worried about exiting from the kids' bedroom in case of a fire.  There was one small window, an internal exit towards the main area of the garage and an external exit across the room where the washer, dryer and hot water heater were located.  If anything happened involving the washer, dryer or hot water heater, the kids' fastest exit would be compromised. 

Speaking of the garage doors, the "front" of the garage included a large standard garage door.  This threw me a bit at first; why would a family waste that much wall space on a garage door when they were making plans like building 10 foot ceilings on the garage to make it a workable future temporary home?  Then I remembered - the local tax authority would notice in real time if a family wanted to build a second home on a plot.  Silly me and my beliefs about obeying civil codes and taxation.

Really, the author of post sums it up better than I can.  The 5+ years of living in the garage are great in hindsight.   Looking back at my life, I have a lot of memories that are far more fun in hindsight than they were at the time.  After all, memories allow me to enjoy the fun, exciting or satisfying bits without reliving the pain, frustration or tedium.  For example, I chaperoned a group of teens on a mission trip to Beaver Island when I was around 26.  I had lots of fun on the trip - but I also broke my tailbone early in the trip, one of the other chaperones was having what I can only describe as an untreated manic episode, and I was going on slightly less than 5 hours of sleep a night for over a week.   My memories are of teaching my small group to pain sets and watching sunsets over the lake - not the pain of hiking miles each day with a light pack with a broken tailbone. 

Be cautious of taking advice from people who enjoyed an experience only in hindsight.

Life with One (1) Medically Complicated Infant: The Tricky Bits

In my last post on this subject., I gave a rundown of what an easy day with my son was like when he first came home from the NICU.  Those days were pretty straightforward if exhausting - but I managed to get between 8-10 hours of sleep a day (although none of it was in chunks longer than 4-5 hours), eat three meals, and generally get a chore or two done around the house.

If it was a tricky day, I got 8 hours of sleep, a meal eaten while doing something else, and prayed that my back wouldn't be permanently damaged from any of the gymnastics.  These days also meant that I generally had no downtime between two feeds or I did a tube-feed with Jack in the backseat of the car while one of my parents were driving us to or from the doctor's office.

Here's what I remember from three tricky items: bathing Jack, medical appointments, and in-home therapy visits.

Bathing the Baby:
We bathed Jack about once every 7-10 days.  I'd wipe him down with wet-wipes every two-three days, but eventually he'd get grungy enough that he needed immersion in water.  The tricky bit was that Jack had a feeding tube and nasal cannula taped to his face - well, actually there was a base layer between his face and the tape, but you get the idea.  Removing the wires, feeding tube and nasal cannula was simple especially since we only removed it when the base layer was coming loose on its own.   The exhausting bit was replacing everything after the bath. 

Expanded for details.  The beige layer visible on his cheek is duoderm which had a sticky bottom layer that wouldn't remove skin and a textured top layer that we stuck surgical tape and tegaderm on.  The white layer is surgical tape; it was the adhesive layer that held everything in place.  On top of the surgical tape was a layer of tegaderm which is like a sticky saran wrap to make it harder for Jack to pull anything free.  He's got his orange NG feeding tube in his right nostril.  The small black and white cords are attached to his chest.  The thick white cord is attached to the oxygen monitor on his big toe.

Here's how I'd bathe Jack:

Pre-bath prep:

1. Turn off monitor.
2. Remove taped layers from Jack's face.
3.  Cut the feeding tube and nasal cannula free of the layers of adhesive.
4. When Jack was on 24 hours a day of oxygen, replace the cannula using the slider on the tube to hold it in place.  If he was being bathed during a oxygen wean, hang the nasal cannula on the flow meter or throw out if it needed to be replaced.
5. If the NG tube was >14 days old, throw it out.  If under 14 days, take the NG tube over to the kitchen sink.  Use 10mL syringe to force 5-10mL of whatever pop we had on the counter through the feeding tube to dissolve any proteins that had coagulated in the tube.  Drop the tube into about 1/4 of a cup of pop to clean the outside.  
6. Take off Jack's clothing.  Remove the chest leads and stick them to the diaper wipes container.  Remove the toe lead and lay it in the box of assorted medical items. 
7. Swaddle the baby in a bath towel and lay him in his bassinet.
8. Put the baby bath on the sink and fill it.  Get soap and washcloths ready.
9. Remove Jack's diaper.  Put Jack in bath.

Bathing him was pretty standard; if he was attached to the nasal cannula, that would trail up and out of the bath tub.  I'll skip those steps and start back up with Jack laying on the dinning room table we converted into a changing/medical station wearing a diaper with a large receiving blanket or dry bath towel under him.

Post-bath work:

1) Fish the feeding tube out of the pop and rinse it in water.  Carry it back to the baby.

2) Cut a length of surgical tape about 4 inches long.  Rip in half.  Attach the pieces to the flow meter so I won't lose them.  Tear 3 one inch pieces and attach to the flow meter.

3)Use the towel or receiving blanket to straight-jacket Jack's arms.

4) Measure the depth that the feeding tube needs to be inserted by placing the tip at the nostril that it will be inserted in, run the tube to the earlobe on that side of the head, then to a point halfway between the xiphoid process (bottom of the sternum) and his belly button.  (Jack traditionally thrashed his head around during this part which made it insanely complicated.) Twist one of the pieces of surgical tape all the way around the NG tube leaving two sticky ends free.  Lay the NG tube out of the way where neither the baby nor I will get the tape stuck on us.

4) Take out a sheet of duoderm, a roll of tegaderm, and scissors.  Cut the duoderm into a barbell-shape where the thin bit fits on the skin between Jack's upper lip and nose without touching his upper lip.  Remove the backing.  Pin Jack's head in place while placing the duoderm on his face without stretching it.   (Angry growls from the baby should be ignored.)

5) Lubricate the tip of the NG tube with saliva.  Insert the NG tube by pointing Jack's chin upward and aiming the tube for the dark space in his nostril.  Quickly and smoothly push the tube inward until the tape is reached.  Attach the tape to the duoderm under his nose.  (Counter-intuitively, Jack never put up much of a fuss during the actual insertion - probably because from his point of view I wasn't messing around with his face.)

6) Check the tube for placement in the stomach by attaching a 10mL syringe and suctioning.  When it is in place, stomach fluid or formula will appear in the tube.  (Honestly, you'll know if it goes in the trachea LONG before this point.  It happened once.  Jack's face turned bright red, he started frantically waving his arms and thrashing his head.  We pulled the tube out in less than a second and he was fine.)

7) Lay the NG tube along the tegaderm on his cheek.  Use the 1 inch pieces diagonally across the tube to secure in place. 

8) Lasso the nasal cannula around his head.  Tighten the slider in the back.   

9) Cut a length of tegaderm.  Remove backing and place over the NG tube and nasal cannula on one cheek.  Cut another length.   Use to secure the nasal cannula on the far cheek.

10) Replace the toe electrode.  

11) Replace the chest electrodes.  Cut two short lengths of tegaderm and place over chest leads to secure.

12) Turn on monitor.  Redo toe electrode as needed.  

13) Dress baby.  Look at clock.  Start feeding routine.

Medical appointments:

7-10 days before:

•  Get one of my parents to come to help wrangle Jack's equipment.

Night before:

• Check his medical go-bag to see that it contains an entire NG replacement set (NG tube, duoderm, surgical tape, tegaderm, scissors, 10mL syringe), a replacement nasal cannula, a 2oz syringe for feeds and an unopened bottle water.
• Make sure the diaper bag has diapers, wipes, Vaseline, a spare outfit, a burp cloth, a pacifier and toys (once he got old enough to be interested in toys.)
• Check that the travel tank in the shoulder bag has enough oxygen for the trip.  Replace if needed.

After the last feed before the appointment:

• Put car keys and wallet in pockets.
• Mark bottles with feed times that will occur during the appointment plus one extra. Place medications in the correct bottle.  Place bottles into diaper bag (which is an insulated lunch bag.)
• Place diaper bag into the giant bag.  Bring giant bag into dinning room.
• Put baby on changing table.  
• Detach monitor from electrical outlet.  Verify that the battery is working.  Put monitor in giant bag.
• Use regulator on the travel tank to set the oxygen flow to 0.5L. Detach nasal cannula from oxygen concetrator.  Attach to travel tank.  Place travel tank in giant bag.
• One adult picks up baby.  Second adult secures cords onto the first adult (so that the first adult doesn't trip on them) and picks up giant bag.  Walk out of the house, down the steps and to the car.
• Put the giant bag on the floor behind the car seat.  Secure Jack.  One adult drives; other adult sits in back with Jack and is in charge with dealing with the monitor if it goes off during the trip.

Upon arrival at the doctor's office:

• Adult who is not driving removes stroller from the trunk, arranges the oxygen tank, monitor and diaper bag into storage under the stroller, removes Jack from the car seat, and secures him in the stroller.  Driver watches for anyone who might not see the adult running around the outside of the car and parks the car after Jack's brought inside.

The actual appointments are pretty standard. 

After the appointment, all of the previous steps are reversed.  Tube-feeding in the car was the same as tube-feeding at home except that the adult had to hold the 2oz syringe over Jack's head to allow gravity to feed him so you have really tired arms at the end.

Therapist Visits:
Ok - truth in blogging time.  I like home-visits by therapists.  I get time to talk with an adult besides my parents or spouse plus the therapist is someone who was totally used to babies attached to medical equipment so I didn't have to explain anything to them.  Since I did home-bound tutoring when I taught, I know that therapists aren't mentally judging my housekeeping or organizational standards; it's not part of their job description.

The down-side: Babies can smell a therapist coming from a mile away and work at thwarting their evil aims.

• Jack behaved like his physical therapist was trying to kill him when she placed him on an exercise ball or laid him on the floor on a heap of mats and blankets.  
• He'd go completely limp and pretend that he didn't know how to support his head.  
• Jack had an entire act where he'd slump over while being held in a sitting position and cough dramatically 3-4 times.  Using his last bit of strength, he'd slowly raise his head up and bravely make eye-contact with the PT or OT before giving a weak, deathly ill baby cough.   I would burst out laughing and "verbalize" Jack's performance as "Lisa, I really want to work with you today - I really do.  But PT is making my multy-dwug wesistant tuburkuosis (multi-drug resistant tuberculosis) worse...so I just....can't.  I'm so weak...."  That would make Jack swivel his head towards me and glare at me because for siding with the PT.    

His antics were hilarious - but it's exhausting to have a baby acting like he's being killed for the better part of an hour even if you know he's fine.

Plus, no matter when we scheduled an appointment, Jack would be hungry and cranky by the end and I'd have no downtime between two feed cycles.

 For the first two months after he was discharged from the NICU, Jack averaged 0.5 doctor's appointments between his "normal" well-baby visits and specialists visits to the pulmonologist, cardiologist, neuro-developmental pediatrician, and optometrist  plus two therapy visits per week.

We were lucky.  Jack "graduated" from weekly PT at the end of the first two months and out of SLP at the end of four month into a single monthly appointment with a PT/OT early childhood specialist through Early On.  Our SLP acted as a medical liasion guru who got Jack into specialists earlier so that his care would be transitioned faster.  The optometrist found no signs of damage to his eyes so we just need a single yearly appointment until he's verbal enough to be checked at school.  His lung issues and persistent PDA didn't lead to pulmonary hypertension so his next cardiology appointment is when he's three.  We see the pulmonologist twice a year.

For kids with more substantial delays like Verity and Katie Musser or Lina, Olyvia, Rachele and Avi Carpenter, they could be entitled to three therapy visits a week each until they were enrolled in school (Speech, occupational therapy, and physical therapy) on top of well-child checks, any visits to the doctor for illnesses and quarterly/yearly appointments with medical specialists.  Additionally, if the kids are eligible for Medicare and receive specialist visits, the kids are often eligible for home care aides to help with daily hygiene function which adds an entire different layer of scheduling to the calendar.

Just writing this out is exhausting - so that's why I am extremely skeptical that families with multiple children with complicated disabilities are able to cope with a single stay-at-home mom and whatever resources they can cobble together - especially if they refuse governmental services as many CP/QF families do.....

Life with One (1) Medically Complicated Infant: An easy day.

Being a bit over a year into my son's wild and crazy life, his medical needs have dropped down to "baby who needs asthma-control medication and judicious choice of outings during cold and flu season".  IOW, he's so close to being a normal 9 month (adjusted) baby that I feel like I can breathe.

I'd breathe more easily if I hadn't gone back to child hoarding adoption blogs. 

See, I have no idea how many of these families are even pretending to function.   My single medically complex son pushed my skills at organizing, sticking to a schedule, staying calm, ad-libbing, communicating and not losing my mind to the brink.

I didn't home school.  I didn't work outside the home.  I didn't do more than a handful of chores a week.  I didn't cook meals from scratch.  I relied heavily on my husband, my parents and a few family friends to keep our lives running well enough that we could keep my son healthy and growing.

I don't think people get a clear view of what a medically complicated kid looks like from those blogs - so I'm going to outline what I remember doing at various time intervals.

I also feel compelled to point out that my son was much easier than many medically complicated kids.

• The doctors know exactly what is wrong with him.  
• I live 30-60 minutes away from a city with a level 4 NICU (that's the kind that is attached to a pediatrics hospital that can do all sorts of tricky surgeries), a top rated children's hospital that has an out-patient clinic where my son is being monitored by a series of pediatric specialists, and a family doctor who thinks she's the luckiest doctor in the world to get to have my son as a patient.   
• My son weighed between 8-16 pounds so I could move him without assistance and without being likely to injure myself.
• My son is a super-good, mellow baby.  His personality is as easy-going as they come.
• My husband and I learned how to use Jack's oxygen (O2) and feeding tube (NG) easily.
• I'm really good at formulaic paperwork and I find playing phone-tag with insurance companies vaguely enjoyable.   
• My husband makes enough money that we could simply buy a lot of odds and ends that has made our lives more simple while he was working half-time.  
• Most importantly, my parents were on-board and ready to go with helping out with Jack.  

Here we go.  I'm going to start with an "easy" day.  This is any day that does not include a bath, having to redo taping, out-of-the house visits or any in-home therapist visits.

Average Day Schedule with a newborn Jack:  (Jack had issues with severe choking during reflux episodes not associated with feeding so an adult who could do infant CPR had to be with him at all times.)

9am: Wake up.  Get dressed for day. Stretch legs.   Eat breakfast while getting an overview of Nico's time with Jack.

9:30am:  Take over Jack's feeding so Nico can get ready for work.   Say goodbye to Nico when he leaves around 10am.

10am: Get Jack settled into his Rock'N'Play.   Throw in a load of laundry. Tackle one of the weekly duties.   Nap/ down time for me if possible.

11am:  Change over laundry.  Fold yesterday's load.  Give him his dose of Zanac at least 30 minutes before noon.

Noon: Begin a feed with Jack.
Feed routine:
1) Change Jack's diaper (and clothes if needed).  He's got wires on the toe of one foot, two chest leads, one oxygen cannula and a feeding tube.    I always felt like I was trying to put a diaper on an octopus.
2) Put Jack in safe location while I get his bottle out of the fridge.
3) Put warm water in his bottle warmer.   Put bottle in warmer.
4)Look up what medication/vitamin he needs at this feed.  Measure medication and add to formula.
5) Assemble the Dr. Brown's bottle system.
6) Stack pillows on the couch so that I can feed Jack in a left-side lying position without too much discomfort for me.
7) Feed Jack stopping to burp after each ounce.  Each choke, gag or reflux flinch is "one strike".  After three strikes, we need to stop the oral feed and switch to his feeding tube so that he doesn't learn to associate feeding with pain.
8) Finish by feeding tube.

• Put baby in rock'n'play or his crib.
• Get a 10ml syringe, 2 oz syringe, and a length of string.
• Tie the 2oz syringe to the string.  Tie the string to a piece of furniture that will hold the syringe at a constant height of between 6-12 inches above Jack's head.
• Pull the feeding tube out of Jack's onesie. (This was often the hardest part; I swear that kid wrapped the tube around his legs on purpose.
• Attach the 10mL syringe to the feeding tube. Draw out any air that's accumulated in his stomach.  Detach the syringe from the tube and blow the air out.  Repeat until the syringe shows stomach fluid or formula.
• Attach the 2oz syringe to the feeding tube.  
• Hang the 2oz syringe from the string.
• Fill the syringe with 2oz of formula.
• If the tube isn't flowing, use the plunger to push a few milliliters of formula through the tube.  
• Repeat the last two steps until he's finished the bottle.
• Detach the 2oz syringe from the feeding tube.
• Use the 10mL syringe to draw out air as above.
• Cap the feeding tube.

9) Wash up all of the items used during this section.

Feeding Jack takes between 1-2 hours.  Jack's usually pretty tired by the end and often will fall asleep.

1pm: One or both of my parents would come over.  They would finish Jack's feed while I caught an hour to two hour nap.  I'd need to add medication to his 3pm feed if they were staying before I fell asleep.

3pm: Wake up from nap.  If my parents are staying, I do an out of the house errand or exercise.  If not, Jack's ready for his next feed which will last until between 4-5pm.

4pm: Nico comes home.  He goes to sleep for two hours.

5pm: Eat lunch if I haven't done it already.  

6pm: Nico wakes up in time to take over for Jack's 6pm feed.  I go to sleep in the bedroom until 11:30pm.  

9pm: Nico feeds Jack.  He also gives Jack his nebulizer treatment which Jack has strong feelings about.  He catches a nap on the couch where he can hear Jack's alarms.

11:30pm: I wake up and take over Jack for the night shift.  Give Jack Zanac right away in his feeding tube since it is most effective on an empty stomach.

Midnight: Jack never wakes up for this feed - ever.  Since infants aren't really active participants in physical therapy, I do his PT on him after I change his diaper, skip the oral feeding portion and move right to feeding him through the tube.  It takes about 30 minutes to feed by tube only and 15 minutes to change his diaper and do PT when he's asleep.

1am: Work on blog post if I'm not sleepy.  Nap on the couch near Jack's bassinet  where I can hear and respond to his alarms if he chokes if I'm sleepy.

3am: Question all of my life choices; I'm not a night owl.  Play a bit with my wide-awake baby, remember that this isn't going to help him differentiate day and night, and get down to feeding the baby.  

Between 4-5am: Finish feeding Jack.  Fall asleep on couch.

5:30am: Nico wakes up and starts making coffee.  I wake up, mumble "I love you" and go into the bedroom where I can sleep more deeply until 9am.

That was an easy day with one kid and three-four caregivers.  The next post will be on the repeating issues that cause days to go from "easy" to draining.

Ting Ministries: Special Needs Adoption as Child Hoarding - Background

I feel sick. 

I've been covering the Musser Family (two parents, 15 kids total; one adopted special need child who drowned in 2013 [Tommy], two living adopted special needs children [Katie age 15, Josie age 15], two biological children with special needs [Verity age 7, John Michael age 12], and 10 biological children: [Not available for 24-7 care-taking: Daniel age 22, Joshua age 20, Laura age 18; current full-time caretaker: Jane age 16; everyone else: Stephen age 9, Peter age 11,  James age 11, Ben age 4; Nathaniel 2] since a year after Tommy died.

Good on Laura for getting free of the last four years of full-time care-taking for Verity and assisting with Katie.  I'm sorry to say that Jane's now not being home-schooled as far as I can tell and has been co-opted into Laura's full-time caregiver position now that Laura has a job.    According to the previous pattern, Susanna's adoption itch should be getting pretty bad soon.  Expect a new kid to appear by first quarter of 2019 at the latest.

Through their craziness, I learned about another family - Brian and Stephanie Carpenter - who have no biological children and are working on adopting as many special needs kids as they can. 

Let's take a look at their current family in order of adoption:

1) Sasha - 20 years old.

• Adopted from Ukraine at age 17 months with cerebral palsy (CP); in-country specialists stated that she had severe CP and would never be able to walk.
• Medical outlook: She has mild CP which means she's fully mobile on her own; she's an excellent student at a local college.
• Ministry Purpose: She has been told by her family since day one that "God saved you for a purpose."  Sounds sweet on the outside - but she's the main social media guru for her family's efforts to batch adopt kids on a yearly basis.  The family leads off with her story all_the_time which serves to minimize concerns that people have about medical reports on complicated special needs orphans - e.g., "Ukraine was so wrong about Sasha; I bet they're wrong about (insert name of orphan-du-jour)

3) Ellianna - around 13 years old

• Adopted: from Taiwan in 2007 at age three with moderate CP and profound deafness.
• Medical outlook: The Mussers blog implies that she's nonverbal, deaf and has severe CP (e.g., she cannot walk even with mobility aids).  Based on Ting Ministry's information and photos, a more realistic description is moderate CP, profoundly deaf with little intelligible speech- but fluent in ASL.  
• Ministry Purpose: She's photogenic and capable of age-appropriate interaction with other human beings.  She serves as a handy model for what the family can accomplish.  

3)Avi (Avigayl)  - around 12 years old; functions at infant level.

• Adopted: from the Philippines in 2009 at age 4.  Known diagnosis of severe cerebral palsy.
• Medical outlook: Added diagnosis of scoliosis.  Has severe developmental lags so that she functions at the level of an infant; I don't know if that is from a preexisting genetic condition or she was so malnourished prior to adoption that her body had to metabolize her brain to stay alive.  Until now, I had assumed it was from malnutrition - but in the summer of 2017, Avi and her family got a Make-a-Wish trip.  Make-a-Wish only funds "progressive, degenerative,  or malignant disorders that are currently placing a child's life in jeopardy".   Severe scoliosis can be life-threatening (the treatment is some rough surgeries) - but I am very worried that Avi has an additional degenerative disorder.   She's still a tiny little thing compared to the growth of her other adopted sisters - even ones with similarly severe disabilities.
• Ministry Purpose: She's lovely - and they don't update about her much.

4) Lina (Angelina) - around 10 years old; functions somewhere in the infant to toddler level.

• Adopted: from the Plevin Orphanage in Bulgaria in 2012 at age 5.5.  No notes on any of the blogs about diagnoses prior to adoption - but she was critically malnourished and weighed 12 pound at 5 years of age.  (For reference, my 9 month old adjusted son weighs 18 pounds and is on the skinny side.)
• Medical outlook: It all depends on how damaged her brain is from malnutrition.   She started walking this summer which is good for her body and makes care much easier.  Based on the amount of posts about the fact she's walking, I don't think she's had any other major breakthroughs in terms of cognitive development.
• Ministry Purposes: Did you notice she's walking!  She's walking now!  She looks like a healthy kid in a few carefully chosen pictures prominently displayed!  Now, when you dig around on the site, the candid pictures show that she's easily distracted during family photos - like the fact she's pulling Ellianna's hair in this year's Christmas photo - but did I mention she's walking!  Everyone knows that physical development mirrors cognitive development perfectly......  

5) Olyvia - around 14 years old; probably functions at mobile infant level - but the blog doesn't mention her much..

• Adopted from Plevin Orphanage in Bulgaria in 2012 at the age of 9 with her sister Rachele. Known diagnoses of spina bifida, cerebral palsy, autism, and severe, long-term malnutrition. 
• Medical outlook:  Same outlook as Lina.  She learned to sit and hold her head up within two months of coming home from Plevin -  which is great! There have been no new updates on steps forward for her since then - which is sad, but shouldn't be unexpected.  
• Ministry Purposes: They need one decent picture of her a year as an individual and one in the family Christmas picture.  Outside of that, she needs to stay under the  potential donors radar of how much work a nonverbal child who cannot walk takes on a day-to-day basis.  She can do this by looking in the general direction the camera and sitting independently in some photos.....

Have I mentioned I feel physically ill from writing about these poor kids?

6) Rachele - around 11 years old;  her functional age is of a newborn or less.

• Adopted from Plevin Orphanage in Bulgaria in 2012 at the age of 6 with her sister Olyvia. Known diagnoses of cerebral palsy, epilepsy and long-term critical malnutrition.
• Medical outlook:  Poor.  She grew 15 inches in her first year with the Carpenter family; that's the only update about Rachele so I am assuming she has severe cognitive impairments as well as physical impairments.  She will need extensive medical and daily living support for the rest of her life - which may be shortened by her inability to describe pain or discomfort to doctors.
• Ministry Purposes:  She needs to look good in the family Christmas photo - and not do anything to draw people's attention to the fact that she's severely disabled.

7) Hannah (Annie) - around 15 years old.  

• Adopted from China in 2016 at the age of nearly-14 with moderate cerebral palsy.  Any questions about how fair being placed in a home with four severely disabled sisters and one sister with disabilities who uses a form of sign language Annie's never seen were swept under the rug with "If she's not adopted by 14, she will NEVER be adopted!"  I really hoped the adoption fund-raising would fail for Annie's sake; it succeeded.
• Medical outlook:  Pretty solid.  Based on photos, she's still wheelchair-dependent for long outings - but she may be using crutches or a walker for shorter distances at home.  Educationally, she graduated from 8th grade.  Assuming she's acquired English at an average rate, she's probably comfortable with conversational English by now.  The main educational issue is trying to make up any content area deficits with a teen who is still between 1.5-3 years away from developing  academic English while she receives intensive physical therapy (hopefully, she doesn't need any surgeries) AND before she reaches 21 years of age.  That's a lot to do in six years - and her family has 4 children who need full-time care plus her slightly younger sister who needs a lot of care now.

Once the Carpenters got Annie home, Sasha spear-headed a media blitz to raise $20,000 to refit their family home so that the girls could get around using their adaptive equipment.  Nothing says "good planning" like remembering that the kids can't move around the house until after you've adopted 6 kids who have major mobility issues; Susanna's always a bit more forth-right than the Carpenters......  (Added bonus in the linked Musser post: Susanna decides that she needs to explain to Josie - who has moderate CP herself - that Annie's moderate CP means that she can't get her body and mouth to do what her brain wants them to do - but Annie's still really smart.  Josie replied, "I get it."  I'm really curious what Josie was thinking during that interchange....and what she thinks of her adoptive mother.)

The fundraising bonanza failed; they raised around $7,000.

On a totally unrelated note, the Carpenter Family remembered in April of 2017 that there are two girls with some unspecified disabilities living in China the Carpenters want to adopt - if they can raise $45,000. 

After all, at some magic number of children, people will cough up the dough to get a house that the kids can live in comfortably - so let's keep racking up the kid count.

It's not like the Carpenters - and the Mussers if they wanted to - could fund-raise to help disabled kids in China instead of bringing them to the US into their overextended family.   No....that's too much disinterested generosity and too little praise for the Carpenters.

I feel sick.