Thankful

Mila has been in a cast for almost three weeks now.  We are possibly half way through our six to eight weeks in a cast.

Mila is a side sleeper by choice, but with her legs casted and spread 18 inches apart, sleeping on her side is not so comfortable.  Think about having one of your legs suspended in the air.  Not long before the leg that's up in the air goes tingly and numb.  She has slept downstairs with Papa by her side.  She tried sleeping in her bed one night.  (It went horribly bad.  She ended up waking both her sister and brother up.)  She has slept in her child's size recliner in our room.  She slept on the air mattress in our room.  Her worst nights she is up every hour.  Her best nights of sleep are waking one to three times.

We are all adjusting.  New schedules, new routines, less sleep.  Routines seem to take longer.  Getting everyone to dinner and situated.  Bath time- two upstairs in the bathtub, Mila downstairs with her head in the shower and being washed off with a wet washcloth.  We start bedtime routines, and an hour later we have everyone in bed and situated.

This is Mila's "shower chair" while casted.

By the time Doug and I are able to lay down in bed, we are exhausted.  We have been so blessed with a wonderful family, church family, and friends who have brought us meals since Mila's surgery.  Someone has delivered a yummy meal two to three times a week.  These meals allows me time to interact with the kids and take care of Mila's needs in the evening rather than spend time preparing meals and cleaning up after them.  I am so thankful to everyone who has brought us dinner.  Thanks Village Chapel Church and to my sister; Katie who set up a sit on Meal Baby.com for us!

Having people come to the house is also a blessing.  Mila is staying home full time with the exception of a trip once a week to Grandma's for care while Doug and I work.  Her teacher Ms. Christy has been seeing Mila weekly since she is not able to be in school and Ms Robin from church has been out to visit her weekly.  She looks forward to them coming.  We are blessed to have a wonderful friend, Patty; who comes out to the house to spend the day with Mila while she is home so that I can go to work.  Patty is exceptional with Mila and she looks forward to her coming each day.  We miss being out and about as a family and seeing friends!  feel free to visit us!

Though our days are full and some of our evenings are long, the blessing of food and the outpouring of prayers for Mila and our family during Mila's recovery time have been much appreciated.
Thank you, thank you from the bottom of our hearts!

Recovery

I wrote this post mostly as a reminder to myself of Mila's first days home after surgery, since we will have to do another surgery down the road.

Mila has been home for 48 hours.  The last two days have been interesting, challenging, and a great learning experience for all of us. 
The first 72 hours they asked us to keep ice on her incisions to help minimize swelling.  Her cast needs to stay elevated.  She is on two different kinds of pain medication.  Diaper changing is an entirely different experience.
Mila had her hamstrings and abductors tendons released.  She has a 3-4" incision on both of her inner thighs in her groin area.  These incisions are very close (if not on) to where her diaper rides.  She has a good bit of bruising and swelling. 

She tends to cry and whimper when she is going to be moved or have her diaper changed.  I think most of her cries are out of fear, more than pain.  She has a high startle reflex and fears of falling over, so I think the "unknown" of a new cast makes her feel even more insecure.  She will ask to be moved, then when her Papa or I come to move her, she starts to whimper, say she's too scared and she'll just stay where she is.
There are all kinds of things I didn't think about having a big cast on that differs the way we do things at home.  When she's sitting in the recliner, no big deal. 
 

Bed time, she is currently downstairs in the extra bedroom and Papa is sleeping in the room with her, so that is a small adjustment.  Bath time (or lack there of) and meal time has been tricky.

Mila typically sits in a Fischer Price Space saver seat at the table.  With her legs so far apart, she doesn't fit in that well.  We tried a couple things, but for now, we put her kids recliner in the kitchen next to the table and I feed her in that. 
She cannot get her cast wet.  One of the suggestions the hospital gave us to wash her hair was cutting a trash bag, putting it under her head while she was laying on the couch, and make a funnel out of the trash bag so when you poured water on her hair, it would right into a bucket you had put on the floor.  That sounded like a disaster to me, so thankfully I was able to bring a Tumble Form chair home and rest it against the base of the shower.  We used the hose of the shower head to wash her hair. (It was somewhat like a beauty salon wash bowl kind of set up.)
Diaper changing is entirely different. I'm working hard to be gentle since she is so scared that anything will hurt.  When she gets scared, her muscles tense, which sometimes makes her feel heavier and harder to lift.  Diaper changing takes me twice as long as it did before.  We are learning how to improvise, be creative, and use muscles and maneuvers we didn't know we had.

She complains that her knee hurts, and when I ask, she always says it's her left knee that hurts.  Then she asks me to check it, and asks "Mama, what can you do to make it feel better?"  I can't see her knee because of the cast, nor do I know how to make it better.  I'm hoping it's just a swelling issue and it will get better in a week or so.

View from Mila's chair towards the table.

Though the first two days have been interesting, we are all getting into a new pattern of "normal" for the next six weeks.  I'm thankful that Mila is only 30 pounds at this point.  I can't imagine when we have to do the next surgery.  I'm thankful that God has lined up family and friends to help us while we all learn a new way for the next six to eight weeks.

Surgery day

We arrived at the hospital at 6:30am and soon after went back to a pre-opnroom where we were visited by a intake person, a nurse, the Orthopedic surgeon, and the anestiologist. Mila was Dr K's first surgery of the day, so she went back to surgery on time, if not a few minutes early. While waiting before surgery, Milan kept taking about needing to go to the repair shop to get some repairs done. She told everyone who came into the room.

 
 
We gave her one final kiss goodbye and headed to the surgery waiting room. They hospital gives you a Id number and you can continually check on your child's status. Doug and I sat in comfortable recliners while we waited through Mila's two hour surgery. Doug even slept some. (Those that know him aren't surprised! He didn't snore too loudly!). The surgeon came out to tell us that surgery went well and she would be in recovery for about an hour. They gave us Mila's room assignment and we headed upstairs to wait for her.
 
 
We are in the new part of the hospital. This is our first hospital stay, but just om visits to some of my students, I am impressed with how nice the room is. Plenty of space for two parents to stay. The couch unfolds into a bed big enough for 2 people to sleep on and there is a nicer recliner.
 
 
Mila's arrived in her room around 12:30 or so. Boy oh boy are her legs spread far apart! She is pretty groggy and slept a good part of the afternoon. She has two decent incisions on either side of her groin. Anytime she moves, her eyes well up with tears. She had some I.v. fluids that she can get rid of as soon as she has something in her belly. Grandpa (a.k.a. Big Belly) and Grandma came to visit her. Hannah will be devastated. Just in the last week they have instituted the 'No visitors under 12'.

 

Around 3:00pm the nurse and nurses aid, both named Danielle (easy for when we needed someone!) came in to put tape and waterproof tape on the top rim of Mila's cast. She was at the end of her meds and she had swelled some, so tucking pieces of tape into the inside of her cast was painful, not to mention that she was rolled on her side with her right foot sticking about 18" up in the air!! After that ordeal and some tears, Mila was able to focus her energy on Grandpa and Grandma and "going camping". They love to pretend together and Mila always thinks of something they forgot to pack on their trip!
Grandpa and Grandma left around 5:30, and Papa stayed until 6:30. She's had chocolate pudding and is quietly asking me questions, and just told me she needed more medicine.
We'll wait for the evening nurse to come around and ask for a shorter iv support on her arm so that she can suck her thumb tonight, now that they have taken off the iv drip.
Thank you for all you love, prayers and support. We have definitely felt them today and know that it has helped this Mama's heart immensely!

 

Surgery Scheduled

Last Tuesday I took Hannah for a doctor appointment, so I had the day to catch up on phone calls.  One of those calls I made was to the Orthopedic surgeon's office.  Back in August, Doug took Mila to see the Orthopedic doctor, and I fully expected him to come home and tell me everything was the same and they would see us in 6 months.  Instead, he came home and told me the office would be calling us to schedule surgery.  Augh!
The Orthopedics office has called twice and offered us a surgery date less than 7 days out because of a cancellation. One date was about two weeks after Elijah came home, and the other date was on December 22.  So last week, when I talked to the doctor's secretary, she told me that she had two open dates for surgery- January 18th or February 16.  If we chose the February date we needed to know that the doctor would be on call for the weekend, then out of town for the two weeks following the surgery date.  If we didn't choose either one of those dates we would be looking at late March for surgery.  So after weighing the options- considering the options of having a different doctor if something occurred was not appealing.  (There is a doctor I am not impressed with after two of my students' surgery.  I don't want to take the chance that doctor would be the one we would see.)  Also, a later surgery date would mean that Mila would be in a cast for her birthday, and possibly while Doug is gone to Ukraine in the spring to bring Max home.  So though the date was only 7 days out, we decided the 18th would work best.

So today, we took Mila to see Dr K for our pre-op appointment.  He took x-rays to make sure things were as he expected.  Then he came to talk to us and answer any questions we may have.  He plans to make two incisions around her groin area and release the tendons in her hamstrings and abductors.  She will be in a cast for six to eight weeks from her hips to her ankles, with a bar in between her legs. (we had first thought a cast from nipples to ankles.) 

She will have 1-2 nights stay in the hospital to check for fever and swelling.  Dr. K said the hospital team will set us up with transportation and wheelchair options that are best for Mila for the 6 weeks.  No school for at least 3-4 weeks, then it is up to us and the school team to know what Mila and the school team can handle.
Dressing her is going to be interesting.  There will be a bar between her legs, so pants will not work.  The doctors suggestion was to take a cheap pair of sweat pants and rip out  the inner seam, then put some Velcro in them.
Mila has been asking all kinds of questions-- can I go potty with my cast on? (She is finally taking an interest in going potty--figures!)  What can I eat with my cast on?  Can I still play with my cast on?  Mama, can you carry me with my cast on?  Can I take a bath?  Today, she was telling Hannah that she gets to pick the color of her cast!  Dr. K was telling her that there are all kinds of color options--including tie-dye and camouflage!  Because she is so schedule oriented, we have been talking about surgery and casting since last week.  She doesn't seem anxious at least at this point.
So, Wednesday morning, bright and early, we will head to Children's Hospital.  Surgery is tentatively scheduled for 8:30am, needing us at the hospital at 6:30am.  Though it's early, Mila won't have to starve thought half the morning before surgery.  Thoughts and prayers for Mila are appreciated.  Also, prayers for the entire family.  This will be Mama and Papa's first major surgery.  Prayers for Hannah and Elijah and Grandma and Grandpa who will care for them while we are at the hospital.

Sweet Mila

It is the eve of our sweet Mila's 5th birthday.  As I put her to bed tonight, I reminded her that when she wakes in the morning, it will be her special day--her birthday.  Dippy doughnuts (Paula Deen's recipe--her favorite cook!) for breakfast!
Birthdays for my girls are bittersweet.  I am so incredibly blessed that God has chosen me to be Mila's Mom.  He has trusted me with her life, with her care, and given me the knowledge, the skills, and the love to be the best parent I can be for her.  Yet, as every birthday comes and goes, I grieve for the mother that gave her life.  I would love her birth family to see her- to know that she is happy and loved.  That despite her disability, her abilities outweigh the things that hold her back.  If I could bottle Mila's giggle and send it to them, to know Mila's true joy, I would.  I grieve for the misconception of disabilities around the world.  If only her family would have been more knowledgeable, would they have seen Mila in a different way? 
I cannot change life, but I can embrace it.  I can hold my sweet girl, carry her where she needs to go when her legs won't take her.  I can tickle my sweet girl and listen to the pure joy that comes from within her.  I can thank the Lord that HE has blessed me with a wonderful daughter and that we can celebrate birthdays, adoptions days, gotcha days, and many other holidays together.

And since it is sweet Mila's birthday, it only seems right to share a story--to show how far she has come in two short years...
We had decided on purchasing a Power Wheels toy for Mila's birthday--something she can ride outside and feel independent.  We have been looking for one for over a week, with no luck at any of our area stores.  On the way home today from an overnight stay, we tried stopping at the Walmart about 2 hours away from home.  No, it wasn't ideal that she was with us, but what were we to do...
The store had the item, we purchased it and put the box in the car to bring home.  About 20 minutes down the road, we began to talk about her birthday.  I asked her what she wanted for her birthday.  I said "Mila, would you like a tractor?"  She looked at me with a silly grin and said, "Mama.....I have a tractor in the back of the car!" :)  Doug and I laughed.  Two years ago, I could take her to the store and buy things for her and she wouldn't put two and two together.  Now, nothing gets past her!  Hannah told Mila she was going to get her stinky socks for her birthday.  Mila's response-- "Hannah, you're joking!  That's gross!"

Happy 5th Birthday to my sweet, sassy, demanding, cuddly little girl! 

Mila, Mila

Here is what little Miss Mila has been up to in the last few weeks!

Mila's new Kidwalk.

 Mila has a trial on the Kidwalk.  She is loving being able to stand and do what everyone else does.  She likes to push a baby stroller, fold laundry, and play babies.

A couple of weeks ago, Mila got to ride an adapted bike at therapy--and LOVED it.  Again, she wants to do what everyone else can do!

Riding a bike at therapy

(Be sure to pause the music at the bottom of the blog if you want to hear Mila chatter while she rides her bike!)