And Another One Down....

So long Valium.

We can finally add the LAST icky, yucky, potent medication to the farewell pile.  Elena officially endured her last dose of Valium tonight.  Thank GOD!

My poor, sweet girl has been on more medication in this last year than most people endure in their lifetime.  Valium, Methadone, Phenobarbital, Fentanyl, Versed, Hydrocodone.....sick.  It feels great to have closed a chapter and be able to move forward.

Speaking of moving forward, Elena has continued to make great progress over the last month.  Her head control gets better each day.  We've been working on "prop sitting", which is basically the first step to getting her to be able to sit up on her own.  Elena has been spending time each day in her "stander".  It looks like a medieval torture device, but it supports her in a standing position.  We work so hard every.single.day.  She endures so much.  I know all the stretching of her tight muscles is brutal.  I can see her trying so hard to hold her little head up, even when it falls, she works so hard to pick it back up.  My little girl is a fighter and she makes her Momma so very proud!

We're in the midst of ordering Elena some specialized chairs that will help support her during eating and play.  We are hopeful that these chairs can make things a little easier for her, allowing her to focus more on the task at hand and not having to support her body.

Elena's doctor (one of the many!) remains pleased with her progress and effects from the Botox injections in August.  She will re-evaluate Elena's need for more in December.  Until then, we'll keep plugging away with our therapies and pray for continued progress.

Lastly, I know many of you ask for updates with her eating.  She is still doing well.  We have seen improvements in her coordination and speed.  Our therapist just had us order a new "cup" to introduce Elena to some thickened liquids next week.  It's slow, steady progress.  But we'll take it!

Here are some specific prayer requests for all Elena's prayer warriors!
-Continued improvement with head/trunk control
-Improvement in vision, which is still a struggle for her
-Head growth
-Continued spasticity in her muscles so she can endure less Botox
-Continued progress in eating

Thanks again to all of you for your encouraging words and prayers.  As we approach the year mark of Elena's injury, we are reminded of how impossible our situation would be without your support and our faith.  Prayers have gotten us through this last year and we know they are essential for the rest of our journey!

Elena in therapy showing off her sitting up skills

Happy girl in her new purple chair

Wisdom. Power. Love

Today I was reminded of an old song I used to sing in youth group, “Our God is An Awesome God”. 

Our God is an awesome God

He reigns from heaven above

With wisdom, power and love

Our God is an awesome God

Those words rang true as I was playing the events of the last year over in my mind.  I was reflecting on some recent hurt two of my best friends are dealing with.  As I thought about their friendship, and how much they have helped me this year, my phone pinged with an email.  I moseyed my way over and checked my email.  It was an email from one of the very dear friends I was just thinking about.  This is what she wrote:

“I've been meaning to tell you a few things. First, it struck me on Monday night at Bible study that you are a good, good friend. I mean I knew that before, but the fact that you felt my loss so much that it made you cry, made me realize again how much you care about your friends and feel for them. It really drove home to me what a genuine person you are and I feel so lucky and blessed to have you as a friend. The second thing is that I wanted to say that your leap of faith in starting a Bible study is totally being blessed by God. I know that personally, not only the content of the studies but also the friendships that are being made and experiences that are being shared is nothing short of divine, and since you "submitted" to facilitating that in your home, God has done all kinds of things in people's lives. In some way, I think a lot of that even goes back to Elena...the experience you've had with her may have prompted your desire to seek God and get your friends to do the same, which in turn helped us get closer to God, which in turn will affect each of our own families and husbands and kids...there are ripple effects to everything, and I hope you can see the good effects that have come with Elena's injury, not just the bad.”

I’m not sharing this to dote on my awesome friendship skills, but to begin to pull together pieces of this grand symphony God has been writing all along.  I remember feeling very early on that great things were going to happen as part of our family’s tragedy.  And while there most definitely has been a lot of hurt and sadness as a result of Elena’s injury, it is impossible to deny seeing the good.

I didn’t just suddenly want to start a Bible Study.  This friend and I had been discussing this possibility for at least a year prior to us taking the plunge back in March (totally God's timing).  We had no idea that our small group would share in the tough life situations that several of us are going through (again, totally God's timing).  The studies that “we” chose have perfectly met our needs.  Both studies we’ve been working through seem to have flashing lights with my name on what seems like every page.  God has been fulfilling my desire for the answers I have been seeking in a not-so-subtle way.  

All of this has been a confirmation of what I’ve known since that very moment I received that call on November 3^rd….I am not alone.  I (literally) cried out to God the entire drive to the hospital, the entire time I was “alone” in the ER, those heartbreakingly long days at Riley, our difficult days at home.  He heard me.  He was there.  Always.  God has carried me through the deepest, darkest, scariest time of my life.  With his “wisdom” and “power” He has orchestrated people, events, cards, emails, emotions that have alerted me to His presence through all of this not only to bring me comfort, but to prove He is in control.  What a “loving”, caring God.  I find it completely humbling that in a world filled with problems much bigger than mine, He has sent me comfort, love and encouragement, purposefully guiding me through each step.  How miraculous is that?  It is so beautiful to actually see what God has done in our lives and those who have been touched by our story.  Our God IS an awesome God.   

Coming Through the Wilderness

I've been meaning to sit down and write an update now for a couple weeks, but somehow this month time has continued to escape me!  It's officially the last week of September, and the beginning of fall.  A new season.  

This month we have been consumed with therapy.  Literally, not a day has gone by where we haven't had a doctor appointment, therapy, or commitment on the calendar.  It can all be exhausting but it really is paying off.  We've been so happy with Elena's physical progress this month.  She has been working SO hard.  She is gaining new strength each day and changing right before our eyes.  No longer is she a little baby.  Our Laney is getting so big, so fast!  She is making strides with each of her therapies.  Everyone has been pleased!  

God has been SO good to us this month.  We have experienced some real answers to prayer.  The first being that one of Elena's doctors (who follows her most closely) called me to discuss the results of her swallow study.  She wanted to know what I thought of the test, how I thought Elena had been eating and what my goals were.  ?!?!???!?  I had NO idea what they were trying to get me to say, so I was completely honest, gave my thoughts and said that I trusted her recommendations.  We chatted back and forth for about 10 minutes, when she said, "Well, here's what I was thinking....". 

"I know your speech therapist and I have the utmost respect and trust in her to do her job.  If she thinks Elena is ready to move forward, then I'll take her word for it.  We trust her judgement."

This was not expected, but absolutely the best case scenario we could have imagined.  She didn't cut us off.  She didn't hold us back.  She gave the power to our wonderful therapist who is in the trenches with us every week, working towards Elena's recovery.  YES!

We had another PT start a couple weeks ago, giving Elena therapy an extra two days a week.  From the first five minutes she was here, I knew she was going to be awesome!  She came right in, stretched the crap out of Elena and put her to work.  She was like the missing piece to Elena's "Dream Team".  She has been so helpful in showing me what to do, what to work on and why.  She is a true answer to prayer.  

Looking back at what we have experienced this month, it's obvious to see that God has continued to work in our lives.  We've had so much encouragement this month, little assurances that He's still there holding the reigns.  

My Bible study group just started a new series and our latest lesson was on God leading the Israelites out of slavery in Egypt through the wilderness to new lives in a promised land.  I can so relate to being in a "wilderness".  I've spent almost a year in this wilderness, my faith depleted, my faith renewed, but never abandoned.  I am learning every step of the way, to give thanks, to enjoy, to reflect, to seize every moment, to rely on God.  He continues to give me strength when I need it and most definitely encouragement along the way.  Because my hope lies in God, not in science, nor doctors, ANYTHING is possible.  I know that we will come through this stronger, happier, more loving, compassionate people with a purpose straight from Him.

We are praying for more victories and more YAYs! this next month.  And definitely more kisses for this awesome girl!

The Latest

Oh my goodness.  What a whirlwind the last couple weeks have been.  We rounded out August with a lousy test result.  September began with a flurry of doctor visits and more tests.

We opened last week with a visit from Elena's Nutritionist.  She continues to be very pleased with Elena's weight.  For awhile there, we were really pushing the scales!  Thankfully, we've been able to find the right caloric balance for E and allowed her height to catch up with her weight!  She's still maintaining the 22lb + mark, which still keeps her in the 70th percentile but is nearly 31 inches also in the 70th-ish percentile range. We are so grateful to have found a formula that really seems to be working well for Elena.

Last Wednesday, Elena had an endoscopy.  Basically, they take a camera and go down her throat into the beginning of her small intestines looking for clues as to why her reflux has been so brutal.  They had to give her anesthesia for this procedure, but thankfully Chad and I were able to be in the operating room for the entire procedure.  It was a serious refresher course in anatomy!  She had some major irritation in the back of her throat and the beginning of her small intestines.  They took blood and tissue samples and we should hope to have those results and more information at the follow up appointment this week.  We are praying for some kind of answer that has a medical resolution and not just something that Elena will have to continue to endure.

On Thursday we had a follow-up appointment with Elena's Physiatrist (her rehab doctor).  She was so, so happy with the Botox results!  Elena went from being able to move her leg (out to the side) to a 30 degree angle to over a 70 degree angle.  That's pretty much the best result that we could have asked for.  She was really pleased with Elena's continued progress, awareness and mobility.  She has started us on a weaning schedule of Elena's Valium, which we are thrilled about.  We have wanted to start coming off that for some time now.  We're hoping that we see more awareness, and less fog as she weans.  We just pray that there's not an increase in irritability...it is a pretty hardcore, dependent drug!

Even though we didn't get the result that we were looking for on her swallow study, we have had really great encouragement from her other doctors and therapists.  We are beginning a huge push in working on Elena's head/trunk control, oral work and visual processing.  These really are three very critical pieces that we MUST have improvement on.  We had a new PT start yesterday and I'm already excited to have her on Elena's team.  She came in very encouraged by Elena's muscle tone and ready push Elena to work even harder.  We're so lucky to have the team of therapists that we do.  They all are vested in Elena's recovery and mean so much more to us than just a therapist who comes once a week.  They are our cheerleaders, our encouragement.  This journey would be so much harder without them!

Please continue to pray for Elena's head/trunk control.  This is such a critical piece that so much of her recovery depends on.  I would welcome a few prayers myself.  With our new therapy schedule and new therapy goals, it all can be a bit overwhelming.  Our days revolve around therapy and me ensuring she gets a good nap so that she can make the most of each session.  That can make for VERY long days!  We'll make it work, we might just need a little patience along the way!

As always, thanks for all your love and support!

One Step Up...

Firstly, I want to thank all of you for your diligent prayers over the last week.  I know there were a lot of you praying for us and for a good day today.

It's been a really tough day.  Elena aspirated on her third swallow.  It wasn't a large amount, but any aspiration is not good.  She did fine for seven more swallows and did fine with her puffs.  They didn't even want to try liquids.

This is a huge disappointment.  My heart broke for Elena.  She has worked so, so hard over the last eight months, relearning how to eat.  To get a big F on the third swallow is just heart breaking.  She was such a big girl today, not intimidated by all the people and big machines.  She took her bites so well.  I'm so proud of her.  I just wish the outcome would have been different.

I felt like I had prepared myself for some level of bad news, but both her therapist and I did not expect her to have trouble with the food.  She's been completely healthy for eight months, never coughs during feeds and has improved drastically with the amount and time it takes her to eat.  We just don't know what happened.

I'm so thankful that Elena has the best speech therapist.  She was there every step today, supporting and encouraging me despite the bad news.  She is determined to make Elena an eater.

I KNOW how far Elena has come since November and I KNOW there are certain to be disappointments along the way, but it still hurts.  I just can't help but think how hard it is for Elena to eat...something we all take for granted every day.  It just isn't fair.  One step up, two steps back.  My poor, sweet baby. We don't think the doctor will cut her off food, which would be worst-case scenario, but we certainly won't be moving forward.  We'll just keep working with her and praying that she'll continue to get stronger every day.

Finishing Strong

Here we are, another month gone by...the last week of August.  What a wild month it has been.

We started the month praying the Botox would do great things for Elena...and it has!  We continue to see such an improvement on her legs.  We've prayed and prayed that it would be a "game changer" and it's too early to call but we've been ecstatic with what we've seen.  Her legs are so maneuverable now.  It must be such a relief for her not to constantly be in extension, tiring those poor muscles!

She is now in therapy five days a week.  It's a bit exhausting, having something every single day.  I'm constantly watching the clock to make sure she gets good naps each day, so she can be ready to work hard in her therapy sessions.  It's pretty limiting, too, on what we're able to do outside of the house but seeing that her recovery is our absolute priority, I'm willing to do anything for her.

As of today, we've officially said goodbye to the three-hour eating schedule!  Woooohooooo!  Since those last few days at Riley, we've spent hundreds of hours with Elena on our lap every 2.5 hours for a 30 minute tube feeding.  I'm afraid to actually calculate the actual amount of time we've spent feeding her over the last 10 months.  Our lives have been on an 8am, 11am, 2pm, 5pm, 8pm schedule for far too long!  She's been tolerating her toddler formula much better so we have bumped up her volume and are now on a 4-hour schedule which is going to be GREAT!

We met with Elena's Neurologist last Friday.  It was a bit better than I had anticipated.  She was happy that we haven't seen any problematic seizure activity, so Elena will continue to stay off her seizure medication for now.  She is still at an extremely high risk, so we'll pray she'll continue to be seizure-free.  We are still disappointed that Elena has yet to have any head growth.  It's certainly one of the harder things we've had to accept.  It doesn't mean that she won't ever have any growth, but the doctors would have liked to seen some by now.  But, all we can do is continue to pray, rejoice in every bit of new progress that she makes and savor every smile and giggle she gives us.

This week rounds out our big month.  We see a new GI doctor and have her swallow study at the end of the week.  Please continue to keep us in your prayers this week.  Friday will be a very anxious day.  Elena has had a bad cold all weekend, so pray that it's all cleared up by Friday so she won't have anything else complicating her eating.

I want to end on a good note and show you some huge progress Elena has had in the last week or so.  She's had a sudden burst of head control/strength!  I remember putting her on her tummy one day and her little head shot right up to watch her beloved Tigger do some bouncing!  Since then, we've noticed a huge leap in her ability to hold her head/torso up longer and higher.  This is HUGE for her development.  Little prayers like this, that we've been praying for months are being answered!

 (Excuse the bed head, we were just up from a nap!)

 Hard to see them here, but she's sporting her first pig tails!

 Playing with Daddy before bedtime

Trying to sit up like a big girl!

Yay for new skills!

P.S.  Thanks to those of you who sent us messages/notes this past week.  You blessed us beyond belief.  I'm always amazed at the lives (even of those we've never met!) Elena continues to touch.  God has given her such an amazing story with a purpose!

Being Grateful

This roller coaster we have been on for the last nine months is constantly sending us soaring high and dipping low.  Often times, all in one day, I will cry because I'm happy and because I'm sad.  I'll be so excited about something Elena did that day and full of sorrow the next because I'm reminded of how far she has to go.  It's such an emotional ride.

In the midst of sorting through all the emotions, I find that most the time I feel so very grateful.  I'm grateful that Elena is here, alive.  I'm grateful that I get to spend my days with this precious child.  I'm grateful that we have so much love and support always surrounding us.  I'm grateful that despite the horrible things we have had to face, God has blessed us with His grace and mercy every day.

Even more simply, I'm grateful that Elena looks at me, making eye contact.  I'm grateful that she smiles and coos at me when I'm silly.  I'm grateful that she laughs when I tickle her or the most recent fave...when we make animal sounds.  I'm grateful for the simplest of things, because I know that there are parents who live without these tiny gestures from their children every day.  Elena continues to be one of the happiest, sweetest, most loving little babies....not to mention so cute!

For this, I'm grateful.