Monday, March 31, 2014

Henry Update




Since my last post on Henry, he declined rapidly. He vomited constantly, 12 or more times per day, for 10 straight days and got down to 4.7 pounds. He was 7 pounds 9 months ago, and over 5 pounds in January. I did take him to the vet for x-rays and finally got a good look at just how "mega" his mega-esophagus is. It's enormous and has displaced his trachea. It is rare for a cat to live very long with this condition, none of my vets, in fact, have ever seen this. Because Henry has enjoyed a good quality of life and because he still follows me around and beseeches me to "do something" with his big round eyes, I turned to deep prayer and research and was pleasantly surprised to find that in the 5 years since I last looked, there is more information available, mostly concerning new drugs that stimulate the upper GI tract.

Starvation sets in after only a day of not eating. Imagine throwing up 12 or more times a day for 10 days. The first thing I gained from my prayer was to simplify. Stop focusing on the biggies, like his lungs and breathing, discontinue the medication that's no longer working, and look at nutrition. Ringers Lactate isn't nutrition, it's hydration. So I made my own home hydration solution using water that I'd boiled rice in, then strained the rice out of, to give him carbohydrates, then added carefully measured amounts of sugar and salt and baking soda. I started with just a teaspoonful in a syringe and he held it down. I upped it to 1 tbs. and gave it to him every 30 minutes. When he tolerated that, I added 1/8 tsp. raw egg yolk and upped that after he tolerated it. His appetite has remained vigorous, but he just couldn't keep anything down until I started this regimen. Then, I had to think of calcium. Cats require a lot of calcium, so I continued giving him the Ringers Lactate subcutaneously and the vet had given me an injectable antiemetic to administer to Henry at home, which I did. After 24 hours, I also added 1/4 tsp. fortified baby oatmeal cereal to give him the vitamins and minerals he'd get from eating a rodent with a stomachfull of grains. Giving Henry grains is dangerous since they can bloat his digestive tract, so knowing proper amounts is crucial.

At the same time, he also needed probiotics, which I had in the fridge, so I added them to his tiny meals. Then, the big problem - how to stimulate his upper GI tract? In my research, I found three possible drugs to use and one of them was in my kitchen cupboard, something I used when trying to stimulate lactation when I was nursing Apple. So I gave him the appropriate dosage of that. I'm not sure it's working yet, but there are two more drugs to try, if needed. His original medication might start working again if his health is better.

The most important thing to remember is that when the process of death begins, the digestive system is the first to shut down. Getting the body healthy enough to halt to process of death is paramount, but a starving body cannot heal. This is the catch-22 that cancer patients used to face. How can their bodies heal and fight with the chemotherapy, when the vomiting from it starves them to death? Hence, the new improvements in GI drugs.

Currently, I'm living by the timer. When the bell goes off, Henry is in the kitchen waiting for me to get his next meal ready. He's getting fed every 30-45 minutes. I have tried tiny amounts of his regular catfood, but he can't tolerate it yet. So, it's my own hydration/carb solution, with raw egg yolk, and fortified oat cereal. He has more energy today, enough to start grooming. Hopefully, enough to stop losing weight and start to heal. I've left a message with my vet about obtaining the best prokinetic drug and, hopefully, Henry will respond well and we can address the issue of his wet lungs.

Henry is "just a cat" but he is special in that his talent is giving love. He doesn't know a stranger, and he and I are definitely connected in a special way since he's depended on me for his very survival all his life. I was once told by a vet that I'd know when it was time to euthanize my first cat and I did know when the time came. Henry's time has not come. Through prayer I was able to discern his most pressing needs and found the tools in my own home to address those needs. Henry's life so far has been a miracle. His continued life is a greater miracle and the love and joy and tenderness he adds to my household is beyond measure. One of my favorite things right now is when Apple squats down beside me as I tend to Henry and ever so gently pets him with her casts, and looks into his eyes and then my eyes and knows that we are healing and loving Henry. At the same time, I provided an excellent example to my older girls of how I'm constantly learning new things, too, as I explained how I researched new medicines on the computer for Henry. They think I know it all and don't understand that we learn all of our lives.

Saturday, March 29, 2014

Physical Therapy


These are the exercises that my girls do as part of their physical therapy. For Jie Jie, the focus is stretching, strength and movement of atrophied muscles and muscles that are restricting bone growth. She also works on balancing on one foot, and exercises that work on her walking stride.

Sissy works on fitness and core strength. Her balance is normal now, but her core is still weak. She's quite physically fit in many ways, but does lean toward muscle tightness so stretching is very important for her. Some of her muscles were starting to atrophy when I got her. For example, she couldn't rise up on her toes when she first came home - at all.

Blossom has a very weak core and fallen arches in her feet. All the girls work to help their feet for various reasons. She's quite naturally flexible. She needs to work on her balance and crossing her midline. We will be adding a balance beam to our exercise room as soon as I have time to make one and we'll soon have a bar to add ballet-type exercises to our routine. Remember, we also have rebounders and outdoor trampolines and I'm getting Blossom on them more to help with her core.

The two older girls do their sit-ups like Bethany Hamilton in the movie Soul Surfer, sit-up-stand-up-sit-down-sit-up-stand-up. If you look closely at the pictures, you'll see that Jie Jie's back is more flexible to one side than the other and that Blossom keeps her shoulders up by her ears instead of using her triceps to do her push ups. The pictures are easy to stage and get "right" looking, and the girls have come such a long way that in many ways they are as fit or maybe even more, than their American counterparts. But American children are notoriously unfit and plain unhealthy and that's not what I want for my kids, so we all get plenty of exercise, even me!

Paint & Carpet Progress


These are the four rooms that will be used for my daycare. The yellow rooms are in the far back wing of the house and will be used exclusively for daycare. The gym and little room off the gym will be used for the indoor daycare playground as well as PT room and gym for my girls and I. The little room will be the daycare dining and art/table work room as well as my girls' arts and crafts room. There is another small room that I think will be the infant sleeping room. I'm not sure yet and it's not been worked on yet.

Apple Update


Overall, Apple is doing very well since her hand surgery. She had very little pain so her recovery went very well. She wakes up her usual cheerful self, but she also wakes up several times a night since it's hard for her to get comfortable with casts on both her arms. She also gets fussy by the afternoon, boredom and frustration at not having hands to hold and touch things with. She's quite the mama's girl now, which I love, and her sisters are enjoying taking turns feeding her again. She gets very funny expressions on her face and shows some fun spunkiness and a never-ending sense of humor.

I removed the dressing on her skin graft yesterday. It had surgical glue over the dissolvable sutures. It looks much better today than yesterday and she's rubbed off most of the glue. It must be itchy. It's just as big as the scar on the other side from her first-stage hand surgery in China a year ago. It is hard to see so many scars on my baby, a constant reminder of what she's been through and still must go through, surgically, but it's also a reminder that she'll have a better quality of life.


I've had these shoes for over 20 years, saving them for the day when I'd finally have a little girls of my own.

3 Years Home


We celebrated Jie Jie's third Family Day Anniversary yesterday. We got Chinese take-out from a great place nearby and I made a simple spice cake. After dinner, we watched Seven Brides for Seven Brothers, which Jie Jie and the other girls absolutely loved. It's hard to believe it's only been three years that I've had her. I can't imagine life without her.



Thursday, March 27, 2014

A Mother's Heart

This was written by another mom and I just had to share it because she says it so perfectly and truthfully.  You can find her blog HERE.  She calls this post Upheld.  She is writing about me, and probably about you, too, if you are reading this...

"We are connected, you and I. Our stories different, our kids’ needs unique, but I’m guessing we’re on a similar trek.
 
Is your family being refined and blessed by a medical needs child? Yep, mine too.

Are you worn out, and a bit fragile? Uh, huh.

Feeling deep gratitude for the care of friends and family, but somehow just a bit alone? Yes.
  
Your new journey intensely hard, but profoundly beautiful? With ya.

Worry that you are burdening friends with too much medical talk? Same here.

God is writing such stories with our families. We face heart defects, vision & hearing loss, blood disorders, cerebral palsy, kidney disease, deficiencies and syndromes. Some of us said yes to conditions pre-adoption, and others received diagnoses post adoption. Some have one condition and others have multiple. We are living in different states and our syringes administering different meds, but each of our hearts carry the weight of parenting a child with medical needs.

Connections have been made through Instagram, agencies and adoption events. We share stories and have quicker than customary, intimate conversations. We cheer each other on, pray, grieve, and follow along; carrying each other’s burdens in a tiny way.

Much of our experience is shared:
We are worn out.

Our planes touched down on US soil, and it was game on.

Some test results have rocked us, and others have driven us to our knees in thanks to a great Healer.

Our faith is both depleted and intensified.

Some days we are hopeful, and others, full of fear.

Nurse, advocate, and momma are the hats we wear.

At dinners with friends, we zone out during talk about TV shows or vacations.

We are on our knees more than ever, but have missed lots of Sunday services.

The little bodies we care for carry surgical scars, and we ponder how their hearts will process it all.

Our calendar boxes are filled with doctor appointments, surgeries, therapies and tests.

Our marriages are stronger, but stretched thin.

We need only five minutes to know if a doctor is going to be the advocate we seek.

Late nights are spent researching and typing questions to mentor mommas in FB groups.

We’ll travel long distances for the best doctor.

IVs are dreaded.

Strength is found in the faces of our little people, and we lean in for the lessons.

Weekly, we coordinate babysitters, not for date nights, but appointments.

Ice cream is spooned up post doctor visits, because we must celebrate as we go. 



We know the ins and outs of our insurance policies, deductibles and medical caps.

Our medical needs child has siblings, and we wonder if they are getting enough attention.

Still, we are in awe of the profound work being done in the hearts of those siblings, as they soften with a deeper kind of love.

Our mailboxes usually hold at least one medical bill.

Our kids need to be catheterized, dilated and medicated. They need therapy, glasses, wheelchairs, blood transfusions, cochlear implants, casts and ostomy bags. They’ve had MRIs, echocardiograms, X-rays, scans and blood draws.

We are different, but the same. Many of us are FB, blog or adoption group friends. I read of your surgeries, and stop to pray, checking back later for an update. I grieve over hard test results. I celebrate with you when your child rolls out of a hospital in a red wagon with balloons. I’m humbled that you do the same for our family.

God has given us the blessing of this sisterhood, and calls us to “consider how we may spur one another on” (Hebrews 10:24). So be spurred on, friend, knowing that you are not alone.
I can’t be with you in the waiting room, or sit with you on your bathroom floor as you give a high volume enema, but I can pray. I can give you the name of a neurosurgeon and offer advice. I can tell you that your family is a light in this world, and is making much of God. I can tell you that I see such hard won beauty rising in you. The roots of your faith are deepening, and I’m challenged to dig deeper too. Most importantly, let me remind you that Isaiah 41:10 promises that each of us is upheld.

Do not fear, for I am with you; do not be dismayed, for I am your God.
 I will strengthen you and help you; I will uphold you with my righteous right hand. – Isaiah 41:10


Dear sister, you are also the daughter of a Most High God, and He upholds us. Dictionary.com tells us that to uphold means to defend, raise, support, lift upward and keep from sinking. Um, yes, please.
  
So, as much as we medical adoptive mommas “get” each other, as much as we hold each other up, let’s lean most deeply in, as daughters, to God who is with us. His hands are so much stronger than ours. Let’s find rest first in He who promises strength and help. Let’s give Him whatever hard thing is penciled in next on our calendars. While at it, give Him the bills, the antibiotics and the therapy sessions.

Mentors and encouragers are a gift as we traverse this path, but ultimately this is bigger than you and I, or even you and your child. It’s about Him and us. Let’s let the needs of our little people draw us to God.

Be spurred on, sisters, knowing that we walk together. Pray for my family, and I’ll pray for yours?
 
Take your next step with brave faith, daughters, knowing your Father is actively keeping your family from sinking. You are fully and perfectly upheld. "

Wednesday, March 26, 2014

Good Day Today


Ah, the ending of a day that was a good day! My kids are happy and behaved well all day, nothing got broken two days in a row now, the work on the house progressed as scheduled, I went to a fun evening at church, it's raining like crazy, which we desperately need around here, I got several loads of laundry done, the kitchen table cleaned off, lunch and dinner made first thing this morning, and my little cat Henry is recovering.

Our physical therapy/exercise gym/indoor daycare playground room is now usable. For the first time ever, my girls raced to get their exercises (PT) done before breakfast. The reason, they were so excited to use the new room. The best part of the new room is that it's essentially all glass, so I can watch them from the kitchen, my office, the living room, my bedroom and the back yard. They like when I watch them, but it also means they won't cheat and skimp on their PT.

The work on the house included the completion of carpet installation in the daycare areas and vinyl installation in the daycare dining area/art room for my girls. The paint will be touched up this weekend and baseboards installed where the new carpet went it. Light fixtures go in as soon as I buy them and the same carpenter will also cut the bottoms on two of the doors that need to open over the newly carpeted areas.

Monday, March 24, 2014

Things Break Every Day Around Here


My girls break something every day - usually do to carelessess. Today is was our brand new timer. It's all of one day old. Jie Jie couldn't resist touching it and turning it. An egg also broke in the refrigerator. Sissy's fault. Blossom almost broke the sliding screen door after I said, "Unlock the door first before you push it." She pushed it and pushed it and I ran in yelling, "What did I just say?" Her reply, "I don't know, I didn't understand you." My reply in an even louder voice, "Then why didn't you say so? How many times have I said to ask when you don't understand me? Do you like it when I yell at you?" Her answer, "Yes."

Sunday, March 23, 2014

The Painting Pictures


Sorry, I've only got before and during pictures so far. The finishing happened during Apples surgery and I've not had a chance to take after pictures yet.