Cast Off Update

We had lots of appointments today at Scottish Rite.  

Will was first & had a great appointment.  He voiced some concerns to his doctors & was very friendly with all of the team.

There is not a shy bone in that boy's body.

He loved having an audience to perform for!

He did his ninja tricks (above photo: "Kicking Donkey" & below photo:  "warrior pose")

 His doctor, Dr. Herring (chief of staff too) even got out his iphone & videoed Will doing his tricks.  Pretty cute!

Love that he is building relationships with his doctors.

He is ready for new zancos (yay!!!) but, unfortunately, his prosthesist was off today so we will wait about 10 days before starting those.

 Sweet siblings shared silly smiles and laughs 

And...

Ellie had her cast removed!  They used a special cast saw & she sobbed.  

There was some dried poop on her legs (yuck) & a stench.  There is are a few bloody spots where the cotton was too tight in her leg rolls and folds.  There is some skin breakdown - lots of big patches of red, bumpy skin.  She is extremely sore and tender.  I bathed her sort of in a sink in the infant bath room at the hospital but she screamed through the whole thing & I couldn't bear to try to get off the dead skin with her screaming.  I'm hoping in a few days her skin will be less sensitive.

She seems extremely sore and has apparently lost all muscle in her core and her legs.  Pulling her up to a sit or to pick her up causes screams of agony.  Basically any motion brings her great pain right now.  

I've read that this may last for several weeks as she begins rebuilding muscle from nothing.  

Emotionally, it has been very hard on us this afternoon knowing she is hurting so bad.

I think, too, that she (& us) have been so used to the cast supporting her that it is weird to not have that support.  She has no strength to support herself but had become accustomed to the support provided by the cast.

It will take some getting used to and strength building.

( & patience on my part as I want to be able to put her in chairs & bouncers & bumbos & exersaucers, etc.)

 She weighs 16 pounds!!!

Her legs are so beautiful!  Her bottom is precious.  Zerberting her tummy has never been so fun & brings  loud laughter & a reprieve from crying!

The cast has been cast off in the trash below:

While in many ways today was a great "victory" day, it was still hard in that it is not over.  After her little bath & a quick feeding (oh so nice to hold her close to feed her & not have a leg sticking up by my head,) we took her to therapy for stretching, therapy, & taping & new splints.  

Because I would have to remove her tape to bathe her, I have resisted my great desire to really soak in a tub with her.  I just don't have it in me to force her through the pain of tape removal & redoing her tape tonight.  I'm going to wait until she is less sensitive to touch and motion.

It was hard on us because we didn't get her cast off & just come home.  We're back into the routine of frequent hospital visits for splinting, taping & therapy at home daily.  Her legs are once again covered up - 22 hours a day.

Once again, both of my kids were troopers - we left the hospital over an hour past nap time & they both did great - asleep before we pulled out of our parking spot at the hospital & they each slept the entire way home!

As hard as today has been, however, and as much as I hate knowing she hurts, I LOVE being able to hold her close and feel her back and bottom and tummy against me.  I love that she can snuggle up to me as I hold her.  

Thanks for praying us through spica season!

Now, it's back to splint season (& new zancos coming up!)

***by the way, we will be moving into our home during the next two weeks so I will be posting some super fun giveaways!  Stay tuned!!!)

fun times at TSRHC today waiting on doctors

(turn music to pause at bottom of page)

Cast-Off!

Soon...

• I will give Ellie her final sponge bath until her next surgery (10 mts away approx)
• I will cut & tape a Poise pad for the last time
• I will stuff various pads/diapers etc in my daughter's diaper area 
• I will tape and moleskin for for the final time
• I will use a hairdryer on her back and bottom for the final time
• I will check her skin for breakdown using a flashlight 
• I will put lavender oil on her for the final time to mask a fishy odor coming from within the cast
• I will wake her at 11:30pm and 3:30am for the final time

Soon the body cast will be off and I will...

• bathe her!!! (in a sink at the hospital after the cast comes off and before she heads to therapy for new splints)
• put lotion on her  - all over her!  (gently, however, as I've been told her body will be very, very sensitive having not been touched for so long)
• breathe in the smell her when she is clean!!!
• cuddle her with my arms wrapped around her bare body 
• nurse her without a pillow or awkward position
• put her to bed without pillows and burp cloths
• take her outside and not worry if it is too hot
• put her in a bumbo
• put her in a high chair to feed her
• put her in a regular car seat
• wear her easily and comfortably
• hold her comfortably
• change a diaper in less than 30 seconds and without extra supplies
• put her in whatever outfit I want
• sleep all night again
• put her in an exersaucer and jumparoo
• watch her roll over again
• see her leg rolls
• know how much she weighs again
• taker her anywhere easily
• be able to put medicine on her bug bites (I can see three bites down the back of her cast)
• treat her skin breakdown
• not answer stupid questions from strangers who wonder how I "broke your baby's legs?!"  ARRRRRGGGGG!
• kiss her all over
• hold her close and tightly

But, oh, to kiss those legs and that tummy again.  I have really really really missed seeing my baby's little body, smelling her baby smell, nursing her comfortably, bathing her, holding her easily, taking care of her when she is uncomfortable or hurting, zerberting her tummy, watching her roll, and so much more.  I can hardly wait for cast off!

(fyi - Ellie's appt is at 1pm for cast off followed by an appt with her lowers doctor /team followed by taping & splinting with her therapists
Will's appt is at 10:30am with his lowers doctor /team & hopefully we'll begin the prosthetics process for him following that.  Busy day!)

Spica Survival

Tomorrow is Cast OFF Day!!!

In preparing for Ellie's Spica Season, I researched lots of websites & mommy blogs.  I think I have about 4-5 saved on the homepage of my phone for quick reference.  Many of them have been invaluable to me during this season. (& I look forward to cleaning up my phone tomorrow!)

However, while I was researching different issues, I noticed that it seemed uncommon for a baby of Ellie's age to be in a spica.... or at least the moms of babies her age weren't blogging about their experiences.  I noticed many of the sites referred to or showed pictures of older children in spicas.  Therefore, there were some issues that I really had to figure out for our unique situation.  I thought I should do my own post regarding our survival tips just in case another mom is researching right now.

Most of the websites I found were related to either a child being in a spica due to a bad fall & broken leg or a child in a spica due to hip dysplasia.  Ellie's dislocated hip is due to her diagnosis of AMC.  Because of the AMC, her spica cast is a bit unusual & therefore unlike much of what I read.  For instance, there are spica tables and spica chairs available online.  I looked into buying one of these or having one made prior to spica season.  I'm so glad I didn't preorder one as she would not have fit.  Her spica doesn't have a bend in it like a typical spica.  Also, because her doctor operated on her feet at the same time as the hip, her spica extended down to her toes on both legs.  A table would have been great but I would recommend not ordering one until you know if your child can fit in one.

My Spica Survival Necessities:

Ergo Baby Carrier

Ellie doesn't fit in a Baby Bjorn while in a spica.  She doesn't fit great in the Ergo right now but at least it is something to enable me to carry her hands free.  This is essential for grocery stores and airports as she doesn't fit in a stroller.

a wagon for longer walks

(stuff a boppy under baby's head & some pillows or burp cloths or towels under the feet for support)

(* a friend did recently loan me her bug a boo stroller.  This did fit Ellie for short walks if she was on her side (& surrounded with pillows for support.)

A friend found this spica outfit - (www.EllieBearSpicaWear.com) and I love it!  Cute, soft, long sleeved (good for night time when her fan is on so high because she gets so sweaty on her back from the cast but her arms get cold) plus it can snap around her diaper area.  Comes in several colors.

(Thanks, Susan R!)

a favorite toy for distraction during cast care

Ellie loves her glowbaby

(It creeps me out but I love that she loves it)

Burpcloths (or towels) - for support under her feet

I like burpcloths because I can easily adjust how many we need.

head rest-

With a spica on, Ellie can't lay flat.  So, diaper changes & cast care & even playtime on her back can be rather uncomfortable.  I am constantly carrying a boppy all over the place.  (A friend in West TX gave me her old one so actually having two has been great.)    This little headrest stayed on her changing table - which is good since a boppy won't fit up there.

Essential diaper supplies:

waterproof tape (available at pharmacy), flashlight (I do daily flashlight checks down her cast to check her skin & it is also very important when she has had diarrhea disasters as it helps me check to see how much I still need to clean & where to clean), diaper cream (do I need to explain?  She got her first bad rash this week & I hated not being able to treat it very well.  I just reached down her cast & smeared as much as I could of this stuff on her skin.  Can't wait to get some fresh air on her tomorrow!), spatula/soft spreader thing (wrap a wipe around it & it lets you go further down the cast or legs of the cast to clean poop), scissors - use for everything (cutting Poise pads, cutting pantiliners, cutting diapers, cutting tape, cutting moleskin)

Duck Tape!  It's waterproof & way more fun than the pharmacy styles.  (I use plain pharmacy kind for taping Poise pads (thanks to my friends who did diaper prep for us.)  I like the decorative kind for taping around the diaper area and holding down moleskin.

I found the animal print ones at Albertson's.  Haley (a blog reader) found the fun paisley, argyle, & polka dot tapes.  I have no idea where she found them but I ADORE them.

(& am making plans for using the blue & green argyle on Will's casts should we do his surgery next year.)

Wipes

Buy them in bulk.

Sometimes, during diarrhea incidents or when Ellie was ridding her body of anesthesia, we would go through an entire package in one day.  

Infant's tylenol - to help with soreness after surgery & to help with teething now

Tea Tree Oil - just a dab goes a long way but masks odor

Drawers for Diaper Supplies

I found it handy to separate my supplies: big diapers in one drawer (size 2), little diapers for extra stuffing in another drawer (size 1-2) & Poise Pads in the middle.

I stored diaper supplies in one of these drawers along with additional diapers

a rocker

it's comforting to a baby who is hurting or uncomfortable

(& comforts her mama too)

a big trashcan

it doesn't take us long to fill this up!

My handy cast care booklet for quick reference

My travel sized cast care container for supplies on the road

Almost every site I ever found recommended a bean bag chair for kids in spica.  Several suggested that the child or baby would have to sleep in a bean bag chair.  

Ellie HATED it.  Hated it.  It was too hot & whenever we would set her down, she would last for a few minutes before pouring sweat.  Maybe it made her nervous too being at an odd angle.  I don't know but it didn't work for us. 

(Also, maybe other kids are too big in their spicas to fit in a bed.  Ellie can still fit in her crib.)

(So - save yourself the investment & borrow from a friend first to see if your child likes it.)

Play mats.

This keeps her busy for awhile.

I can hardly wait to put her in an exersaucer soon and enable her to play upright (without being held.)  I would have loved a spica table but I would suggest seeing what sort of spica your child is in prior to ordering or making one.

hairdryer - helps dry out sweat down her cast.  Also, helps dry the diaper area/cotton/moleskin

Use on cool, low setting.

My gratitude journal

Helps me find so much to be thankful for every day

Britax Hippo Spica Carseat

Thankfully, our hospital (TX Scottish Rite) provided us with a carseat at no charge.  If your hospital doesn't provide one, you might be able to find one at hipbaby.org.  I think they run around $400 new but many parents buy them and then sell them after their child is out of a spica.

It's a big carseat.

I do like how easily I can see her face though as she is practically laying down in it.

The Ergo - love it

cast cooler

This is AMAZING

(www.castcooler.com)

However, it does not work with a goretex lining.  Ellie's first spica did not have goretex & we would use the cast cooler several times a day to remove odor & moisture & cool the patient.  It was incredible how quickly we could tell a difference in her comfort level (& the smell!)

It is $30 & works with a vacuum cleaner.  And I would never have discovered it if not for a blog reader who mentioned it!  Thank you!

It does not work on Ellie's current spica as it has a goretex liner.  Which means that she is incredibly hot & has recently begun to stink & I can't do anything about it.  (Not a fan of goretex.)

Finally, a little blankee.

I like a little blankee - it gives her comfort in sleep but doesn't fully cover her (she gets so very hot.)

For sponge baths, I lay her on a thick towel by the kitchen sink.  

I use a washcloth to wash her (duh) & a baby towel to dry her off.  I can only wash her head and her arms & upper chest.  

 We love our sponge bath time.

We can NOT wait for real baths .... tomorrow!

 Of course, I love my Noodle & Boo Shampoo for washing her hair. 

I have also found that Mustela's No-Rinse Shampooing Fluid is great for spica as I don't have to use very much & it gets her clean but doesn't need to be rinsed.  Since it is not soapy or sudsy it's less risky to use on her upper chest/arms where I have to be more cautious about getting the cast wet.  Love it.

I've posted here about how I did diapers with Ellie's first spica.  However, I admit that it has been a constantly evolving process.  I've used maxi pads, Poise pads, pantiliners, multiple size diapers, hairdryers,  and lots of tears.  Often,  the time of day (& whether she was having diarrhea or not) determined how I did her diapering system.  I had read what other parents did & I took many of their suggestions.  But, I had to tweak it for my baby - my little baby who is breastfed & therefore has unique diapering needs.  So- you have to experiment here & figure out what works best for the patient... and be patient yourself to changing your methods.
(And give yourself grace - I have cried lots and lots of tears over failed diaper attempts (& poop in the cast.)  It feels terrible as a mother to not be able to adequately clean your child.  It feels neglectful.  Give yourself grace  should you too experience a disaster in the diaper & know that you've done your best to prevent it.  (Seriously - since I was holding her generally I would catch her as soon as she went yet there were several times where it would leak past the pads/pantiliner barrier & into the cast.  UGH!
(***if it soaks through the cast or causes an infection, the cast must be changed.)  Thankfully, we didn't experience this although there were times I called the nurse scared that too much had escaped the diaper area.  YUCK!
(For the record, our longest diaper change was 2 hours & 47 minutes & involved 2 people working the entire time.  We've had some exhausting diaper care days as we've had to clean up a diarrhea disaster and re-tape/moleskin/dry her out.)
Also, you can use cloth diapers with a spica.  I researched this & felt like for us, it would be best to stick with pads & disposables but it is possible to use cloth (although from what I've read, the cast is hard on the cloth diaper so it may drive up the expense some.)  Regardless, you have to use some sort of pad system inside the diaper.
Bottom line (sorry -no pun intended) - figure out what works for you & give yourself the grace to figure that out.

Oh, I am so looking forward to simple diaper changes!!!

These are our survival necessities for a spica cast.  Happy Spica Season & Here's To A Short Season!

Receiving Grace

Serve wholeheartedly, as if you were serving the Lord, not men, because you know that the Lord will reward everyone for whatever good he does, whether he is slave or free.

Ephesians 6:7-8

Your attitude should be the same as that of Christ Jesus:

Who, being in very nature God, did not consider equality with God something to be grasped, but made himself nothing, taking the very nature of a servant...

Philippians 2: 5--7

In the last 4 years, we have been humbled to receive grace from others.  We have been wholeheartedly served by so many from all over.

During this recent spica season, when so much was required for Ellie's care, we received a concentrated dose of extra service.

We are humbled and so grateful.

I have been asked often of late how these months of Ellie in a spica and moving have been.

To be honest, I completely dreaded spica season.

But, my response to that question?

It has been good.  It has been far better than I ever imagined.

Good?

How has having a baby in body cast been good?

Because others have served our family, caring for Ellie, while time consuming and difficult at times, has been manageable.  Actually, it has been more than manageable.  This has been a good season for our family.

Because others have served our family, I have found time to just be mommy or wife, rather than always a caregiver.

Because others have served our family, I found brief moments of respite - time to walk outside with a friend and feel refreshed and reenergized  - because someone was inside with Ellie doing her cast care.

Because others have served our family and provided meals, I haven't fallen prey to the temptation to serve frozen, prepackaged meals or order pizza or carryout every night.  I love to cook but with moving and cast care, I simply don't have the time to cook nightly.  With meals three nights a week, I have been able to count on homemade, nutritious meals for our family.  And I've been able to significantly decrease the amount of trips to the store I would have to make - trips spent wearing Ellie on me as she doesn't fit in a cart.

Because others have served our family and provided cast care, I can spend a little time being a mommy to Will, take a walk with a friend, do the dishes, return a phone call, take a shower, or even just comfort Ellie, rather than always being the one to inflict discomfort on her.  I get tired of always being the one to hold her for shots or xrays, to do her stretches and therapy, to force her into uncomfortable positions, to do her cast care, to do her taping, to hand her off for surgery and be with her upon waking.  It's nice to sometimes just be her mommy and let someone else do the unfun stuff.

Because others have served our family and done diaper prep, I could spend the time I would have spent cutting and taping poise pads with our family.

Because others have cast cooled Ellie, she was comforted and I found a little bit of time to escape cast care - to find a glimpse of "normal" 

Because my mom has helped out with middle of the night cast care, I have gotten more nights of sleep than I anticipated three months ago.

Because people have reached out to serve us and practiced hospitality, we have made new friends and, again, received a respite from cast care.

Because others have served us and come over to hold Ellie, my back and arms have received little breaks!

Because others served our family and packed up much of our home, we were able to survive a move with small children (& one in a spica cast) without killing each other.

Because my inlaws served us by driving a car for us across Texas to  our new home, I was able to fly with the children.... rather than drive alone with two children.  Can you imagine if I would have had to do Ellie's cast care routine on the side of I-20 every two hours?  Not to mention if there would have been a diarrhea disaster!?!

Because my parents have served us, we have been able to live with them while looking for a new house.    They have opened their home to us and helped immensely with children and cast care.  And, they've even partially moved out of their home to the lake (on weekends) so that we can have family time just the four of us.

Because my mom has taken many of the 3:30am cast care times, I have been able to sleep more nights than I anticipated I would going into this.

Because friends have gone out of their way to serve me by dropping off or mailing  little surprises (my favorite drinks, a cd, fun duck tape for cast care, a spica outfit for Ellie, muffins, etc.) we have found ourselves smiling - even on hard days.  And sometimes, just knowing someone was thinking about us and recognized that this was a particualarly difficult season, was so comforting and eased our sense of loneliness.

We have been served with emails and phone calls and texts just to check on us - and no expectations that we return those in a timely manner and grace for days when we completely forget to respond at all.

We have been served by others opening up their homes to host Will for playdates.  This has given me time to do the more time intensive labor of cast care (taping & moleskin) and it lets Will have fun and run off energy.  

I would generally say I am a very independent person.  I don't like to admit to needing help.

But.

For the past four years, I have learned how to accept help.  I have learned how to receive grace.  

I think that perhaps the biggest testament to the love of God we can give is when we serve others wholeheartedly, expecting nothing in return.

The body of Christ has served our family.

We are so thankful to so many who have served us:

those who have lovingly cooked for us

those who have lovingly cast cooled Ellie

those who have lovingly held her or rocked her so I could get something done

those who have sent us fun little surprises

those who have humbled themselves to cut and tape Poise pads

those who have hosted Will for playdates

those who have come over to play with Will and Ellie 

those who have kept Ellie so I could go for a walk with Will and friends

those who have given of their time, their money, their sleep (thanks mom!), their creativity, and their love to serve our family

It's exactly what I think Paul meant when he instructed us to be like Jesus the servant.

(***disclaimer - I've tried to take lots of pictures of those who have served us... but, sadly, they were on my phone that met its untimely demise  recently.  Sorry!)

From the bottom of our hearts, thank you.  Because of you, this time with our baby girl in a spica cast has been far better than we ever imagined possible!

And, just for fun?

Might I make some suggestions?

Perhaps you know a family in crisis.  Perhaps you know a family that could use some practical help for a season.  Maybe you are in the throes of crisis yourself. 

Looking for some practical ways to serve others that we have found especially helpful?

• meals - www.takethemameal.com - my friend, Sarah B., from our church in West Texas found this site & used it to coordinate meals.  It was great!  It emails participants reminders and allows them to sign up online to take a meal to a family.  It also provides participants and the recipients with a menu so you know exactly what you are getting when (& so givers know if you've already had lasagna or spaghetti or taco salad or whatever three times that week.)  When we moved, my mom copied Sarah & used that site with their friends and sunday school class that were offering meals.  We used it also for people to sign up to volunteer time for cast care.  It's really quite helpful!  I believe it is also free!

•    respite care - When a family is in a crisis sort of situation, offer respite. (I hate  the word, "crisis" - I just can't think of another word to describe this season that is even more involved than our typical life of managing life with two kids with medical needs.)  Offer to sit with a patient to give a caregiver a break.  Tell the caregiver, lovingly, that they need a shower & force them to take one!  Force them outside for a walk - it does wonders for the soul and can quickly refresh someone.  Take their children for a little while.  Give them a brief break.
• 
  
• creativity - When a family is in crisis, offer creativity.  Drop off something to cheer them up like a favorite drink, a starbucks coffee, a good book, a hot lunch, a cd, a funny card to give them a laugh, etc.  Running through Sonic?  Grab one for a friend in need & drop it off on the porch - text them to let them know - it's 15 minutes of your day but may bring them a smile to be thought of.  One of my favorite things was when people came up with ideas for Will and I to do together and then made it happen.  When I am too tired and out of creativity, I have depended on others who have come up with ideas for activities for Will and I.  People like Susan or Haley gave of their time to research ( & purchase) clothes made for spicas and fun duct tape for cast care.  I can't tell you how much joy it has brought me to make this spica a bit more fun with colorful tape!  I have been so grateful for clothes that fit her cast and are soft and comfortable for sleep.  Send a card - just a "thinking about you" kind of card or even an email or text.  Sometimes, these seemingly little gestures are so significant - they let the recipient know they (& their crisis) are not forgotten.  They can perk someone up on a hard day and remind them they are not alone.
   These aren't necessary to helping a family survive a crisis.  But, this can help a family thrive in crisis.  
• talents - Use your talents.  Terrible cook and no interest in providing a meal?  No free time or have small children and so unable to offer respite?  But, perhaps you have a skill you can offer?  Perhaps you can sew like our friends Bonnie & Christie who made special spica dresses for Ellie.  
• Help with Life- I've also appreciated people who stopped by for brief little periods of time - willing to just do something - fold towels, pack boxes, quickly do a load of dishes, etc.  A huge help for me has been someone to run errands for me.  I have taken my kids on errands and to the grocery store while Ellie is in a spica.  It's doable.  But it is hard.  She doesn't fit in the grocery cart & her car seat isn't removable so I must wear her in my carrier.  I love my carrier and am thankful to have found one to fit her in spica but it's not a good fit - the spica makes it awkward.  So, while it does hold her & therefore frees up my hands to push the cart, it's taxing.  Essentially, my back pain which is concentrated generally one area from holding her in spica so much, is just distributed more evenly. :)  Going to the store with both kids involves me wearing her & Will wearing prosthetics  and me preparing myself for the idiot checkout girl (sorry - sore spot) who asks how I broke my baby's legs... it's a doable thing... it's just hard.  I have been so thankful for those who have emailed me that they are headed to the store the next day - I email them a list and they drop by my groceries & I write a check.   (A friend once shared with me that she grocery shopped for a friend in crisis for a whole year & her friend wrote thousands of dollars in checks to her that year.)

Even when a family is in some sort of crisis, life still goes on around them - picking up their dry cleaning, groceries, filling the car up with gas or getting the oil changed, taking the animals to the vet, just errands of life, can be so helpful.  Stopping by someone's house to pick up laundry to fold at your own home & at your own convenience  - this can be a huge help.  Many of these ideas can be done on the schedule of the giver.  

• Don't ask.  I am often too tired to know what I may or may  not need help with in upcoming days.   I also don't want to feel like I am overusing or abusing someone's generosity or willingness to help.  Plus, I never know how much someone is willing to do.  I don't want anyone to ever feel obligated to do something for us. So, rather than saying, "Please let me know what I can do to help," and making the recipient think of something while not really knowing how much time you have to offer or what skills you have to offer, tell them what you are willing to do.  Set boundaries for yourself and make a practical offer of help within those boundaries.  I loved when someone would say, "I can pack boxes from 10am-noon on Thursday."  Or, "I can come do cast care at 9am on Monday."  Because they were setting their own boundaries, I never felt like I was abusing someone's generosity in those cases.  Plus, it took the burden off of me to feel like I had to create something for someone to do - or to come up with an idea of the top of my head.  By far one of the most helpful things for me was knowing that people had set their boundaries and were offering what they were comfortable giving.  
• Be on call.  Maybe you can't offer specific help or a specific time frame but you are willing to be on call for someone.  Let them know that in case of emergency or a desperate need (like Ellie's diarrhea disasters - these were obviously unplanned and I couldn't really do them alone.)  And if you get called at an inconvenient time, take the burden off of the person in need by working to find someone else to help.  Just knowing you can be depended on when crisis comes up within a crisis meets a huge need.
• Give grace  - heaping loads of it.  I have been a terrible friend/sister/daughter/daughter in law/church member, etc for months and months.  I have depended on others for so much and haven't really been able to give back to anyone.  I have been tired - so tired.  I have been wrapped up in taking care of my children and have often had little time for others.  I forget to return calls or emails.  I send birthday cards late.

And yet, my friends and family have so often given me grace.  They have recognized our circumstances are beyond ordinary and they have given me grace - they have released  expectations on me and I am so thankful.  Know that there may be days and times when the family needs your help and other days when they don't - give them grace to say no (& know that they may very well need you the next time!)

Give grace. 

There may be days when they have no idea what they need.  Give grace as they figure it out.

We are to thankful to have received grace upon grace upon grace for the last four years and especially during spica season.

Thank you for serving our family.

Thank you to so many of you who have served us as the hands and feet of Christ.

We are humbled and forever grateful.

Isn't that what Easter is about?

A God who lowered Himself to become man.  A God who served a hurting mankind in crisis, man who thought we could do it on our own, who strive for independence and stubbornly throughout history have tried and failed, this Jesus, He came and served us by dying on a cross to save us with His blood sacrifice.

He gave grace and He gives us grace upon grace upon grace.  He offers us Himself - not only a chance to survive but an opportunity in grace to thrive.

Isn't that the crux of the cross?  

He served us.  In grace, He saved us.

Yes, I think this is what the Body of Christ does in serving others.  We serve because He first served us. We receive grace and we give grace because He gives grace.

Any ideas for how you may have received grace or given it to others during crisis that you can share in the comments below?

I have learned so much from our friends and family and strangers.  Thank you for loving us and serving us, especially during this spica season.

bad days better

Recently, I was kind of having a down day.  It wasn't really a bad day.  I wasn't really in a bad mood - just sad.  I just was down about Ellie in a spica challenge & watching Will struggle with feeling left out among other kids because we haven't figured out the bike situation or the rope swing situation yet & trying to find my role in this new sort of place with him...

just down about it all - about the fact that nothing seems simple for us.

Our normal is so far from normal sometimes.

And then, my dad brought home a package from his office that had been sent for Will & Ellie from Kelly.

She is so talented &  had made Captain Will & his first mate pirate tees!

We LOVE them!  This made me smile (although Will was the most excited!)

Thank you Kelly!

And then a long time family friend (who grew up across the street from my dad in MO,) came for dinner & surprised me with something for me!  

A new nightie & robe - ahhhh... how comforting!  (& I spend lots of waking hours in a robe throughout the night with sweet E!) Thank you, Nancy!

And, still on that same no longer so down day?

New tape for Ellie!

A blog reader who I hope to meet someday & become real life friends with, Haley,

sent fun new duck tape!

Did you ever imagine duck tape could come in such fun designs?!?!  I may never use regular tape again!

I couldn't decide which to use first as I did her taping that night...

so I used all three designs!

Doesn't she just look so springy?  And girly?  And fun?

She's making all the other spica babies jealous, I think. :)

And then I monogrammed her.

Because every Southern girl needs a monogram.

Ellie's is just semi-permanent right now.

Thank you, Haley!

I wish you all could have heard the oohs & ahhhs in the hospital last week as I proudly pulled up Ellie's dress to show off her new tape!

I mean, seriously, there could be a lucrative business in the works for people willing to take spica casts & decorate them & make them oh so feminine & actually pretty!

(Did I really just say that a Spica can be pretty?!??!  Yes.  Yes, I did.)

Loving playing with the new tape!  It makes me smile every single time I do her cast care.

And I just love showing off how pretty her spica is right now!

Sometimes I just marvel at God's timing.  I was having a down day & 3 surprises in one night?!?!  It's like he knew I was just kind of struggling & sad & somehow managed to find 3 ways to perk me up & make me smile... & I can't help but think He prompted three people - one a total stranger even - to go to the effort & expense to use their creativity to bless me.... just because... & I think that makes Him happy too.

Serving Her

Often, I read that when asked how they manage life under such unique circumstances, a mom of a child with special needs will respond, "What choice do I have?"

I've said this too.  To some extent, it is true.  What choice do I have?  Of course I'm going to get my children medical treatment.  Of course, I'm going to get him prosthetics.  Of course we're going to sacrifice in other areas to be able to pay medical bills or transportation bills for appointments.  Of course I'm going to make sure they get the therapies they need.  Of course I'll purchase or make the equipment they require.  Of course I'll get up multiple times during the night to do cast care diaper changes.  Of course I'll spend up to two hours of my day doing just one cast care routine.

But, the truth is, we do have a choice.

Though we never considered abortion a choice, it was a choice offered to us by doctors.  We chose to carry our precious babies to term and to offer them a chance at life - regardless of a diagnosis or prognosis.

We have continued to make choices as parents - choices to get second and third opinions.  Choices to get better therapies.  Choices to get new equipment or treatments.  Choices to pursue surgeries or therapies.  Choices to discipline in certain ways.  Choices as to what our expectations are.  Choices about nutrition.  Choices.  Constantly making choices.

I think that ultimately every parent has a choice.  We can choose to parent because we've been given children.  Or, we can choose to parent our children well, because it is our honor to do so.

The Saturday after Ellie's surgery, I was struggling inwardly with God.  I was emotional, sleep deprived, exhausted, and heartbroken for my baby and myself.  Most of those circumstances haven't changed since that day.

But, that morning, I felt like God whispered to me that I had a choice.

(Usually I am in the kitchen when I feel His nudges.  I wasn't in the kitchen this time & have hardly been there since surgery since so many have graciously brought us our meals.  Also, usually He doesn't whisper to me - usually I feel like He is striking me with a giant (soft) brick in order to get my attention.  This time was a gentle whisper.)

My choice?

I could choose to endure this season of spica cast with resentment and bitterness.
Or
I could do it well.  I could do it with grace.  I could use it as a unique opportunity to serve my daughter.  I can serve her in a way few other parents get to serve their children.  She may never know or realize and that makes it even sweeter somehow.  I can serve her as an extension of my complete adoration and love for her.

Since that day, my perspective has drastically changed.

It doesn't make things easier, but it gives it more purpose.  It doesn't mean that there aren't moments I just think, I just have to get through this.
But, I have changed the way I am thinking to realizing that in getting through - I can do it resentfully or I can do it gracefully.  I can serve her or I can just get by.

We used to pray nightly that the months in a spica cast would just go by so quickly.  But, that never felt right to me.  Suddenly, I knew why.  I don't want months 6-9 of her first year of life to fly by.  I want to savor them.  I want to remember these days.  I want to notice every little thing about her & not miss anything.  I want to memorize her and these precious months.  It goes by so quickly anyway.  I don't want to resent the spica.  It's taking enough for me already (sleep, time spent with friends/exercising/etc, bathing her)... I refuse to let it also take these months from me.

We don't pray that anymore.  We pray that we will endure.  We pray for grace to get through it.  But I don't pray for it to go quickly.  Months 6-9 in an infant's life are important months.  I don't want them to go by so quickly.  Even if it means she is in spica.

Months 6-9 are giving me a unique opportunity to serve my daughter.  They are giving me teaching moments with Will as he learns to serve his sister in his own way (bringing diaper supplies, entertaining her, learning that the world doesn't revolve around him, practicing patience, etc.)

We don't have children because life is all about us.  (Or if we do, we quickly learn I think that it is not about us!)  I believe parents generally serve their children.  We all have ways we serve and sacrifice - our bodies, our time, our spontaneity, our finances, our dream home.  What I am learning is that part of the bonus of being  a parent of a child with differences is that I have some unique opportunities to serve my child(ren.)

Three months in a spica.  Three months to simply serve her.  Three months to cast aside much of how I knew life and to spend it serving my family.  Three months to really continue to learn the blessing of allowing others to serve us and to receive grace (just today, a woman from church came to run Ellie's cast cooler & help pack, another took Will for a playdate, a third is bringing us dinner, a fourth volunteered to run to the grocery store for me and a fifth is coordinating all those who want to help so that I don't have to.   We are so thankful to be served by others right now... which frees me up to serve Ellie.)  Three months to take extra time to diaper and care for her unique needs.  Three months to comfort her any way I can.

I believe months 6-9 just might be some of the most precious three months we know as a family this year.

(And also the most exhausting.  But that's ok. :) )

Cast Care... or Spica Changes Everything

10 days into caring for a baby in a spica cast and here's the summary of what I've learned:

Spica changes everything.

It's managable.  It just changes every thing we do.

I hold her differently (one arm between her legs for support.)

I'm cautious about positioning her to avoid blood clots & give her daily folic acid to prevent them.

We get up 3 times a night (11pm, 2am, & 5am) to do diaper care.

She has a specialized car seat.

The Baby Bjorn doesn't work anymore with her but I can modify my Ergo and also use a Moby so that I can carry her hands free.

She can't sit up and this is frustrating for all of us.

I have to be very cautious about foods I eat - little room for tummy expansion for her & immobile legs means that she could experience a lot of pain with gas or bloating.

I'm avoiding introducing her to new foods (don't want to risk reactions.)

She has to sleep with a boppy and her feet propped up./

Most regular baby equipment doesn't work - or has to be modified.

Nursing is kind of awkward.

Cast care is tedious and exhausting.

What hasn't changed? 

Her precious smile & contagious giggle and sweet disposition.

So, 10 days in & here is how we are currently doing cast care.

(Subject to change at any minute, of course, as we figure out new methods or adjust things.)

CAST COOLER

(aka:  Vacuuming Ellie)

Thanks to the blog reader who recommended the cast cooler.  It works with a vacuum and seems to work wonders at removing moisture & odor from Ellie's cast.  After about 3 days, it was pretty stale smelling.  Now, it doesn't stink & I think she must feel more fresh as well.

I highly recommend castcooler.com!

We do this 2-3 times a day for about 25-40 minutes at a time.

I do it on each knee, sometimes on her thighs, and on her bottom and tummy.

See?  She's happy.

My friend, Laura, in nursing school, came over & "vacuumed" Ellie this week.

INDEPENDENT PLAY TIME

One of our huge frustrations has been the fact that there is no way to get Ellie upright independently of us holding her.  There is no bend in the cast to allow her to sit in anything.  This has been frustrating for Ellie too.

Her bouncers don't work.  Her car seat doesn't work (we have a special kind made for spica casts.)  Her swing and high chair don't work.  Her bumbo doesn't work.  All those little things I didn't realize I depended on for putting her down for 20 minutes while I made dinner or tended to Will - they don't work.  And, at 6 months old, she is not content to just lay on her back flat on the floor for her wake times.  (She is not actually flat either - we have to position her using pillows & stacks of burp cloths to take the pressure off since she isn't fully flat.)

While expressing this frustration to her physical therapist a few days ago, she got creative (goodness knows my tired brain has no room for creativity right now) & turned this soft table thing upside down to make a little stand/holder/table thing for Ellie in a spica!

Ellie loved it!

(The downside is that it requires two people to get her safely into it.)

My mom & I got more creative after this & pulled the bucket seat out of her baby Einstein play gym, stacked pillows & her lamb on the bottom to support her & the cast, & (again with 2 people to do it safely), slid her from the bottom up into the thing.  She was a very happy girl & we were happy to see her so happy!

(Just a bummer that I can't do it alone.)

CLOTHES


The cast adds 10 pounds & changes her body shape so I've had to go up a size in clothing to fit around the cast.  Also, pants do not work which is frustrating.  Clothes must go on over her head so skirts work but only if they have a big elastic stretch band.  Onesies work kind of.  Dresses work great.  Baby legs also work.

Two women from church have graciously offered their talents to sew spica clothes for Ellie! So, they came to measure her the other day & are going to create a dress that will fit her in the cast just perfectly!

Precious!   

Lucky girl to get custom made dresses, isn't she?

Another friend sent an outfit called "Ellie Bear Spica Wear" (named after another Ellie!)  that is just adorable & soft & fits the cast perfectly & makes diaper changes easier!  She's worn it several times already this week.

Thank you, Susan!

DIAPER CARE

And now... how we do diaper care.

Setting up supplies:

waterproof tape, torn into short strips for petaling the diaper area 

She doesn't fit very well on her changing table (not enough room to really work there) so we set up a card table (classy, aren't we?) with a monogrammed pink quilt covering it of course, in her room.  The pillow under her head helps with support as otherwise her body is at an odd angle & her feet poke up in the air & that is not good.

(She has to sleep with her head on a boppy pillow for the same reason & her feet are propped up in her bed on stacks of burp cloths.  For skin breakdown reasons, we have to change her position periodically but nursing her makes this easy.)

Anyway,

the 3 drawers are filled with supplies (tape, moleskin, bandages, etc), diapers, & prepared Poise pads.

During a recent diarrhea nightmare, we used various utensils wrapped in wipes to reach into the cast as far as we could & clean her.

Don't worry, these no longer reside in my kitchen drawer.

They have a new home in Ellie's cast care drawer.

Only after a really stinky diaper do I use oil - organic lavender oil - rubbed on the edge of the cast with a q-tip - to help with odor.  

I've read that tea tree oil is good for combatting bacteria & odor as well.  I haven't used it yet as it is a rather strong smell.  I keep it on hand anyway because I use it in my homemade face wash and now it may have another purpose!

A flashlight is sometimes necessary to see inside the diaper & make sure we get all of what we need to get out of there.

During a long diaper change (we've had 2 that have taken 2 hours), entertainment is necessary.

Will or Daddy have taken on this role.

 I learned the hard way that using a hair dryer is essential.  We try to use it at every daytime diaper change.  It makes the tape last longer as it keeps that dryer & it helps keep her cast dry.  We've noticed a significant decrease in odor & it is also supposed to help with her comfort by taking away the itch.

We dry her on both sides.

We only use it on low and cool setting.

We found that Poise pads work better than maxi pads.  

(Yes, I just admitted to using both of those on my baby girl.  She'll be mortified someday, I'm sure.)

Her daddy is, I think.

He asked recently if I was embarrassed to buy Wal-Mart out of Poise Pads this week - I bought several hundred (we go through about 100 a week.)  

Nope.  Should I have been?

In the hospital, they had us using maxi pads but we also kept having leaks there.  With incontinence pads, we don't have leaks (except the diarrhea incident.  Forever more, I shall refer to that event as "The Great Diarrhea Disaster of 2011."  It was awful & required a call to the hospital to see if they needed to replace her cast - I simply can't get it out of the liner of the cast way down her leg.  Disaster.  Lots of tears  - more for me as I feel like some horrible neglectful mom that I can't remove poop completely off of my daughter's leg cast.  I hope this doesn't land her on a therapist's couch someday!

Anyway, Poise pads are too long so we cut 1/3 off & tape the end with waterproof tape.  I learned the hard way that taping is necessary as otherwise when it gets wet (from urine or sweat), the cotton inside starts to come out & then that gets wet & it is a huge pain to clean it off of her.

And by "we" I mean my sweet friends & mom who have put in time to cut and tape hundreds of pads so that it is one less thing for me to worry about & they are already done & prepared.

The Poise pad gets stuffed up inside the cast - front & bottom.

On top of that, I stuff a small diaper - front & bottom - as far as I can get it & as wide as I can inside the cast.

Flipping her over between stuffings is the worst part for Ellie girl.

The diaper area has to be petaled in waterproof tape.  This not only protects from the sharp edges of the fiberglass cast but helps protect the cast from becoming wet or dirty.  If it becomes too wet, we would have to travel to Dallas & put her under anesthesia and have it removed & replaced.  So, when the waterproof tape becomes soiled, I have to replace it in layers.  Sometimes, just from wear and tear of diapers & clothes, it starts to peel up so then it has to be replaced as well.  I don't do this step every diaper change - just portions of it about once a day/day and a half.  It takes a long time as it is a narrow workspace.

After the Poise pad gets stuffed in both the front & back, I stuff a small diaper in the cast.

Finally, we put a bigger diaper on over the whole thing & it's over at last...

until the next one 2 hours later.

the supply table & sweet Girl

this shows the moleskin on the top front of the cast.  There is moleskin petaled all the way around the cast to protect her (& us) from the sharp fiberglass.  It has to be replaced every 48 hours or so.

Getting the moleskin around her feet is very tricky.  Just a small workspace & it's really hard to get the moleskin under her toes.

A basic diaper change takes about 10 minutes.

It seems that about once a day we encounter a "hiccup" in our diaper care that requires much more time. Sometimes, I'm prepared for it and I've planned the time accordingly because I know it is time to tape & petal or moleskin her.  Then, I can plan on spending 45 minutes or so doing diaper care.

Sometimes, as with the "Great Urine Incident of 2011" or the "Great Diarrhea Disaster of 2011,"  it takes closer to 2 hours (or 2 hours and 13 minutes, to be exact.)  These, obviously, we weren't expecting & so that is frustrating when it is bed time, for instance, & suddenly 2 people are required to manage diaper care for several hours.  There may or may not have been a glass of wine poured recently during the GDD2011.  Just saying.

So, generally, cast care is manageable - just time consuming.  It's those unexpected daily hiccups that seem to get us & overwhelm us & exhaust us.

And, they offer us a unique opportunity to serve her.

More on that in a day or two (or three or four.)

Now, I have to go tend to a baby crying.