Breakfast, Lunch and Dinner (not all the same day)

I just spent the past hour re-reading our blog posts to try to catch myself up on where we were.  Thanks to all of you who are following along!  Every day I talk to different family members and friends and find that I am often repeating some stories and missing others. 

The past week has gone by remarkably fast.  Ainsley has moved on from vanilla yogurt and cheese slices, to cottage cheese and cheese slices.  We crush her pills and put them into a bite of cottage cheese.  Works wonders!!!  We have also found we can put the Miralax in her cottage cheese without her tasting it.  The result:  We are gaining better control of her tummy pain and bowel movements!!!

I'll just warn you that if you are squeamish about bowel movements, that you may need to skip through some of this, because it's pretty graphic.  But there are wonderful miracles and stories that we want recorded, so I'll put them in.  We did, of course, spare you the pictures ;-) 

For a few weeks before Ainsley's diagnosis, she had some constipation issues.  A few hard stools had resulted in a lot of pain, a little blood, and a paralyzing fear of going to the potty.  This is how constipation usually works on kids her age, one or two painful bowel movements results in voluntary holding to prevent another painful experience, which leads to further constipation and more pain with the next bowel movement.  So we had been working with her to get her back on schedule before finding she had Leukemia.  But constipation presents some very unique problems with Leukemia.  Vincristine, one of the chemo drugs she gets weekly, causes constipation.  On top of that, you cannot give suppositories or enemas to chemo patients, because you can actually introduce the bacteria from the bowels into the blood and that can become a very serious infection, even life-threatening, because of their immune suppression. 

So we were down two-strikes when we started:  Ainsley now had over a month of hesitancy to use the potty and already had some bleeding with bowel movements.   She could somehow taste the Miralax no matter what drink we put it in (and no matter how sneaky we were--she didn't know it was there!)  The colace was so nasty to her that she vomited it back up almost every time she took it.  We were at a loss and knew she was getting very backed up!  Her poor little tummy!  Add to that, she is definitely seeing the ravenous hunger side effect from her steroids.  So increased intake and decreased output means over-sized middle!  If the colon gets too distended (overfull) it actually loses the ability to contract, resulting in Mega-colon.  I realize that is far south of where I usually practice (I focus above the collar bone) but I knew it was possible. 

On Monday morning we had to go get her labs drawn at 9:30 am.  Her platelets were once again in the teens and her hemoglobin was 8.  She was tired and lethargic.  They gave her platelets and packed red blood cells, which both take time to infuse (hours).  We finally got out of there at about 6:00pm.  As if that wasn't hard enough on her little body, we watched through the day as her already painful, swollen tummy began to get more painful and more swollen.  By the time we were home and ready for bed, Jenny and I were seriously concerned about her and considering taking her back to the hospital.  I called Trevor over and we gave her a blessing.  She fell asleep and not 20 minutes later produced the largest bowel movement I had ever seen.  I'll spare you the details, but lets just say that it did not look physically possible to have come from her.  The miracle was:  no blood and her stomach was back to normal!  So thankful for the power of Priesthood Blessings and so grateful to be able to provide those to my family and friends, and to have faithful friends like Trevor that can join me at the drop of hat to administer them.  Since then her bowels have definitely been on the up and up!  Yeah!

Breakfast
Ainsley's appetite bears mentioning in detail.  She is always hungry right now because of the steroids.  She loves yogurt, cottage cheese, Tilamok Cheddar cheese, scrambled eggs, Chex cereal, Frito Lay chips, and, of course, Jenny's famous crepes.  Sunday was my birthday and I wanted Jenny's crepes for dinner.  We were all in heaven.  The next day, while getting her blood, Ainsley asked Jenny to make her some more crepes.  Jenny said we would tomorrow.  Well, each time Ainsley fell asleep, she woke up asking for them again.  With as tired as she is and frequently as she naps right now, she was told she'd "have them tomorrow" at least 7 times.  That's 7 days of being told "tomorrow" in a 4-year-old eyes.  So when Ainsley woke up at 3 in the morning, demanding her morning crepes, she just about had Jenny out of bed making them for her.  Thankfully, she was appeased with some of her other favorite foods that are more accessible at that time.   Tuesday morning we did make crepes, and boy were they delicious!

Lunch
Jenny and I got to sneak away to go to lunch to celebrate my birthday (a few days late).  We went to a favorite restaurant, Cheddars.  We had Hudson with us, and he was sleeping sweetly in his car seat.  The waitress came to the table and asked how old he is and we said "two months!"  She looked at Jenny and said "Momma, you look great for having just had a baby two months ago!  Do you have other children?"  She was downright astonished when Jenny told her Hudson is our 5th baby.  I took the moment to brag on my remarkable wife (who does look AMAZINGLY HOT--ALWAYS by the way!)  I said, "the part you don't know is that we also just found out that our 4 year old has Leukemia and this is our first few hours alone together since we found out, and she still looks this good!" The waitress got a little misty-eyed and said, "I'm sorry, but I know that God answers prayers!"  I love that about living here in Oklahoma, everyone is so quick to give God credit and praise Him, even around people they don't know.  We had a great lunch and gave the waitress our card.  She came back with it a few minutes later and said "I'm going to cover this, it is something I feel urged to do, so please let me!"  Now we were all misty-eyed.  We thanked her and walked away touched and once again overwhelmed with the kindness of people around us. 

Dinner
Our ward family has been wonderful!  They certainly know how to love, how to serve, how to help through difficulties, and how to uplift.  Our friend Tiffany was bringing us dinner one evening.  She was putting it all together and found out that her husband was stuck at work.  As she tried to get things together to bring to us, her doorbell rang!  It was the full-time missionaries!  They were both brand new to the area and hadn't met Tiffany before, nor our family.  She opened the door and said "I'm so glad you are here!  Would you be able to deliver some food the Smedley's for me?"  They said yes and she ran back inside to put it together.  As she came back to the door with the food, she asked "did you even know I lived here?"  They responded, "nope, we were just out knocking on doors!"

Those were some of our favorite experiences over the past few days.   Jenny joked that we should have named this post "Crap and Crapes" but decided against it.  I like the title, maybe I'll change it in the future.

A final little update:  We took Ainsley back in for labs and her chemotherapy today (Thursday).  Her platelets stayed above 70k!!!  That is wonderful!  She had been dropping into the teens every 3-4 days since her diagnosis!  It's a little victory but a victory none-the-less!