Happy Birthday to TWO

One reason I love this blog is that it allows me to sit and capture exactly where we are at at different times in our life, and today, we're celebrating a birthday over here! Our sweet Meghan is 2. Oh, how my heart ached last night as I gave my baby a bath, knowing it is likely the last time I will bathe a one year old. We are entering full on into toddler-ville, and let me tell you, Meghan is excited to be two. Our neurologist told us by the time she was two we would have a pretty good idea of where she will fall on the "spectrum"- something you cling to when you are the parent of a neurologically challenged child. It's a birthday that I have looked forward to not only because it would mean that we get to celebrate another year of her life, but also because I thought it would bring some degree of certainty to all the "wait and see's" we heard over the first year of her life. Now that we are here, there are a few things I am certain about. I love this kid beyond my wildest comprehension (and her big sister too). She loves singing more than just about anything, except maybe the dog. She cannot walk at 2- and that is totally ok. She knows her ABC's. Her most favorite thing to do is open and close- anything, repeatedly. She trusts me to clean her feeding tube, repeating "almost" as I do it because I always tell her I'm almost done. She says "I'm sorry" or "It's ok" when she's hurt, mostly because it's what I've always told her when anyone has to do something painful to her while she's awake. She loves to be outside, and to feel the wind on her face. She knows most all her animals, and Meghan saying "ee oo ah ah monkey" is maybe the cutest thing, ever. Her big sister got to take a "walk" with her last week- for the first time ever. This was big big stuff. She loves to dance- especially since our version of dancing is me holding her in my arms and skipping and twirling around the living room. She also loves to hug- if you see her scrunching up her face, pursing her lips and leaning into you, feel blessed. This is how she hugs. There are so many things about Meghan at two that I want to bottle up forever, and this is the bittersweet adventure of parenting. It's our job to help them grow, and we celebrate each new adventure, all the while wanting to cling to what is passing for just one more minute.

So she's two. Now that we have arrived at what they said would be an important birthday for developmental reasons, I could honestly care less what that means. More important than discovering where she's "at" at age 2, we love her just because she's Meghan, and that is more important than letting 2 be defined by her abilities. Here's to another year of adventure, of love, and of having the privilege to watch her grow!

Swinging with Daddy

This folks, is my cheese face.

Trying out the big kid stuff!

Safe:)

New transportation! We just ordered one (pending insurance approval) and are very hopeful to be taking some "walks" this summer!!

Had to add one of my big girl. Meghan wouldn't be Meghan without her Addie.

You have searched me, Lord,

    and you know me.

2 

You know when I sit and when I rise;

    you perceive my thoughts from afar.

3 

You discern my going out and my lying down;

    you are familiar with all my ways.

4 

Before a word is on my tongue

    you, Lord, know it completely.

5 

You hem me in behind and before,

    and you lay your hand upon me.

6 

Such knowledge is too wonderful for me,

    too lofty for me to attain.

Psalm 139: 1-6

Thank you Lord that you know Meghan completely, and love her more than we will ever be capable of loving. Thank you that you have gone before her this next year. You know what is ahead for her, and what she will need. Thank you for the blessing of having this sweet life in our family, and in your wisdom, changing us to fulfill your purpose for our lives and hers. We praise you for your faithfulness.

AMEN!

Say It's So

Happy New Year! We're inching through these last weeks of winter, and ever closer to Meghan's second birthday. Apart from being cooped up in the house other than outings for therapy we've had a really great few weeks. On the medical front, she just saw her GI and dietitian and we're upping her calories to see if we can get her to put on some weight (she's still in 12 month pants!). She is so active lately! We're also looking into a blenderized diet for her (whole food nutrition through her g-tube), but we have to work closely with the dietitian to make sure she gets exactly what she needs. Other than that we've been working hard in PT to strengthen her legs. She's very motivated to stand, and reach objects that were previously unavailable to her- including- joy- the toilet lid (why does every toddler find fascination with this??). She also got to try out a gait trainer (think walker, for very tiny people), but as you can see, Meg was not exactly a fan...

We are told she'll get used to it:) 

The last couple months Meghan has continued to add words to her vocabulary. She can name more objects now than I can count, and has several phrases such as "hold you", "sit on the couch", "hi sweetie", and "more chicken!". Last night I had given her a bath and was holding her while we brushed her teeth (well, I get one swipe and she says "you try!" and grabs the brush). Out of the blue, she looks at me, leans in and gives me a Meghan hug (the arms aren't part of the hug just yet:). Then she looks up and says "I love you so much". Quite possibly the first five word phrase I have heard her say. Be still my mommy heart. For this sweet little girl who has the scariest brain MRI report I have ever read to be able to say that to me is a miracle. Every single child born is born with a purpose, regardless of their given abilities. So much of Meghan's life remains uncertain, and I don't know what plans the Lord has in store for Meghan for her future, but I am now absolutely certain that Meghan's purpose includes having a voice- and with that voice, we will teach her to praise the one who gave it to her. 

"I praise you Lord, for I am fearfully and wonderfully made"

Psalm 139:14

Here's a little sample of what she's doing recently. This is Meghan's Grammy:) Thanks to ALL our family who are in her face teaching her just as much as we are! 

Standing on Hope

December has nearly come and gone, and with it, the end of another year. This month has been remarkably good for us. Meghan’s surgery on the 10^th went well, and we already see an improvement in her breathing. The morning of her surgery began a little rocky. I had gotten up early to get myself ready to spend the day at the hospital. I heard Meghan cry out in pain- unusual for her. When I opened the door to her room and saw that her feeding tube extension was uncharacteristically far from her body, I knew what had happened. Unzipping her jammies confirmed it- the extension had wedged between the crib and the mattress and when she rolled, it pulled her intact g-tube balloon out through her stoma (the opening where the tube goes through from the stomach to the skin)- think water ballon through a straw, only the straw is her skin. Ouch. I quickly grabbed the spare we have, and attempted to replace it. Time is of major importance, and they were not kidding when they said the stoma closes quickly. I couldn’t get it back in. We packed up pretty quick and headed downtown, where the surgical Nurse Practitioner and resident met us and tried to replace it. No dice. After a half hour of torture (I’m pretty sure everyone in the room was sweating), they called it off and hoped for better luck once she was under anesthesia and more relaxed, the alternative being that they would have to create an entirely new stoma. Many prayers were lifted, and thankfully, they were able to replace it through the old one. Major relief is an understatement. Despite the stress and rough start to the day, the morning’s events turned out to be a blessing in disguise. The tube we’ve had since September had been leaking- not enough that I even thought it was an issue, but enough that when she developed the infection and granulation tissue it was probably preventing it from healing. After battling that for almost 2 months, she got the new tube and her stoma quickly healed and is back to normal. I am still sorry that I didn’t put that together for her, and so grateful that Jesus was watching over her. When that tube came out I thought- “Lord! We have been praying for healing! Not more drama!” Little did I know.  Sometimes the answer to prayer means enduring something harder, to get to what is ultimately better. I am so grateful for a God who knows better than I do, and is always in control.

Since then, we’ve had an easy month! Only one follow up, and therapy has been light with the holiday break. We’ve enjoyed some great days at home, and the girls enjoyed Christmas with our family. Addie was especially fun this year, fully comprehending the season and celebrating with exuberance and joy. You should see her rendition of Joy to the World- it comes complete with interpretive dance! Meghan has been itching for new toys to play with- things that would encourage her development. She’s really outgrown most of the baby toys, but finding things to occupy her developmentally while accommodating for her mobility can be a challenge. Fortunately the Christmas season was upon us, and Fisher Price had a solution (or ten).  Her big gift this year was the Fisher Price Laugh and Learn Learning Home (parents of toddlers…this is one toy that is worth it!! Well designed, and lots of funJ) Recently she has begun to bear weight on her legs for a few seconds. We’ve been encouraging this like crazy. It’s far from standing on her own, and she has a long way to go but her two feet are ON THE FLOOR. Today she noticed that a toy on her new little home was accessible, but out of reach when you are sitting on the floor. She looks at me, reaches up her arms and I helped her to stand and reach the wheel. Elation! She knows. She knows, and she’s fighting to get there. I am so fiercely proud of this little girl. No matter how small, these are the moments that I am sure I will remember for the rest of my life.

2013 is coming to a close, and we are filled with hope. Hope that does not depend on circumstance or season, because it is tied to our Savior. May your holiday season be filled with joy, and your 2014 filled with the kind of hope that never fails.

Surgery Day- game face;)

Looking very grown up at our annual Christmas tea.

Polar Express!

Playing with her new toys!

Sitting like a big girl:)

Hello World!

But I will hope continually, and will praise you yet more and more.

Psalm 71:14

The Eyes Have It

I have this little window of time after the girls go to bed in which to accomplish all the tasks that take 100% of my attention, like for instance, writing- which is why I can't seem to get around to doing it as often as I would like. At any rate, tonight is one of those nights where I actually feel semi caught up on things and can sit down to give you all an update!

Meghan has had a decent month, apart from hitting a little rough patch with her feeding tube. About a week after she was in the hospital, we noticed that the skin around the tube was very red, and the site itself began to drain. With similar circumstances landing her in the ICU this summer, I wasn't taking any chances. Being a weekend, we headed to the ER where after a thorough evaluation we left (yay!) with antibiotics and some really fantastic care from the Pediatric ER staff at Fairview (love you guys!!). After a couple days of antibiotics, the infection was clearly resolving but she began to develop granulation tissue as a reaction to the infection. So, we've been back and forth a little bit with that, but in the last week it is finally settling down- thank goodness! Waiting on healing is an exercise in patience and trust, is it not?!

Meg has been hard at work in therapy this month, and working on her independent mobility. She is finally beginning to attempt to bear weight on her legs. It's for seconds at a time, with major support, but SHE is initiating the movement. You have to start somewhere, right? She tried out a version of crawling that involved keeping her head on the floor. This led to some major rug burn on the forehead, and the discovery that you can't see very well when you have your forehead on the floor so she's back to rolling, with the occasional scoot to change direction. She is ALL OVER the house now, and her new favorite thing is to open and close doors (and by that I mean she closes them, and yells "OPEN CLOSE!" until someone opens it up for her to close again).

The really fun news is that Meghan's ophthalmologist is putting eye surgery on hold for now, in exchange for glasses. We've been patching her daily for well over a year while they waited to see if her eye muscles would get stronger. At the last visit we were expecting to schedule another surgery, and instead left with a prescription for glasses. I almost cried! The greatest part is that she is adjusting to them amazingly well. Given her recent reactions to all things medical, I would have never expected her to keep them on the way she does. She has started to notice more details as well. Some things are fun- like snowflakes! She is also happy to point out every speck on the carpet, and the dust floating in the air.....

Next week Meghan is having tubes put in her ears, and her adenoids removed. She has had fluid behind her ear drum for months, and they want to protect her hearing in her non-deaf ear. We are thankful for a "normal" toddler surgery for once (if that makes sense) but with all Meghan has been through it is becoming more difficult to help her through the trauma of the medical setting. She has absolutely figured out who doctors and nurses are, and has become intensely fearful of interacting with them, even if what they are doing with her is not painful (case in point- exam by her neurologist a couple weeks ago. He basically presents her with toys and talks to her. She cries and yells "ALL DONE!". At this point, I can't blame her.) If you could once again keep our sweet girl in your prayers on Tuesday, we would appreciate it!

We hope you had a wonderful Thanksgiving. Ours was quiet, at home, and and surrounded by family. We have so much to be thankful for, and believe me when I say that we didn't take one second of a day like that for granted.

Get on your feet!

Excessive cuteness.

The girls enjoying the first sled ride of the year!

Finally big enough to play dress up:)

The tree is up! We are ready for CHRISTMAS!!


"Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God". Philippians 4:6

Between a shunt and a hard place.

As usual, we can plan, but we can't promise. This Tuesday, Meghan woke up acting pretty much herself (which lately, is a little on the feisty side). During her morning tube feeding she began vomiting- not totally out of the ordinary with a tube fed child, so it didn't worry me too much. However, over the next hour, she became lethargic, irritable, and continued vomiting. We have known for a few months that she has fluid behind her ear drums, so I thought maybe she had developed and ear infection and this was her way of telling me. I had to head to work, so after a quick call to the pediatrician Daddy packed her up and took her in. Our doc checked her out, and not finding any source for infection decided that a visit to the ER was appropriate. When you have a baby with a shunt like Meghan, who begins vomiting and acting differently than normal it unfortunately is cause for concern that the shunt might not be working. Thankfully, after the ER evaluated her, it appeared that her shunt was still working, but we discovered that her white blood cells were significantly elevated and she was already dehydrated so they admitted her to the hospital.

Because of her elevated white blood cells, her primary team of doctors were concerned that her shunt may be infected, and prepared for her to have a lumbar puncture. I am so grateful for a team of specialists that know her well, and are willing to be cautious and observe her before jumping in and risk causing a potential infection where there isn't one. They agreed to wait, and so we spent the next 3 days watching and waiting. On day 3 she finally perked up, her fever broke, and we had our feisty Meghan back. She woke up asking for Addie, so after lunch her big sister got to come say hello. Addie jumped in the bed with her and gave her the best medicine possible- lots of sister snuggles and a few laughs:) Being Halloween, the play room at the hospital was having a carnival. Since Meg was still on isolation precautions, the child life specialists at the hospital came to the room with "reverse trick or treat" bags for the girls. I think Addie suspects that the hospital is mostly fun and games now...

 We're hoping for an uneventful November, since she has surgery planned in December for tubes and adenoids (finally- a "typical" surgery for Meg!), and her wheelchair should be delivered! This month, we are THANKFUL for so many things, but most of all for healing, for mercy, and for the blessing of our family. Weeks like this make you appreciate cooking, dirty dishes, laundry, and cleaning up messes- because it means you are home to do it.

Getting some snuggles. 

Perking up!

Happy to be headed HOME after a doctors appointment...

A well deserved Friday family night of ice cream and movies in front of the fire:) Chase was on stand-by in case of any accidental spills.
"Blessed are those who have regard for the weak; the Lord delivers them in times of trouble. The Lord will protect him and preserve his life; he will bless him in the land and not surrender him to the desire of his foes.  The LORD will sustain him on his sickbed and restore him from his bed of illness."
Psalm 41:1-3

D-Day 2.0

October 7^th and we are in the full swing of school days around here! Preschool has changed a lot of things for our family, and it has been so fun watching Addie grow- she LOVES school, and that makes me a happy mommy! Meghan came through her MRI and surgeries with a great report (thank you all for praying!), and no surprises, which is the best thing that can happenJ We are waiting to hear from our surgeon in Salt Lake City. He usually reviews her images, following her progress until he decides it’s time for surgery. We are hopeful that we still have a lot of time left before we have to tackle that hurdle with her.

Today is special. October 7th for us is a milestone day- one of those days in your life that you will never, ever forget the date, what you were wearing, what the weather was like, and exactly how you felt at the moment you knew your life was changed forever. It’s Diagnosis Day, 2 years later. I can still feel tightness of my maternity top, damp with the remnants of ultrasound gel clinging to my belly as I began clinging to hope the day we found out Meghan Grace has hydrocephalus. 2 years later I let myself sit in that moment for a while, and look back with amazement at how far we have come since that day. The grainy black and grey scale of the ultrasound pictures are replaced with brilliant color memories that have a precious smile, deep hazel eyes, and the brightest sunshine in her voice. Today was hard 2 years ago, but I would walk through that day a hundred times over again if that’s what it means to have this little girl as a part of our lives. Overwhelmingly, because of God’s great faithfulness we have grown as a family in this time and I am flat on my face grateful for every second of hardship as it has meant seeing His work in our lives. I love being able to reflect on a period of time, and see how tangibly His presence is woven into our experiences. It is evidence of a love greater than I can fathom, and infinitely more than I will ever deserve- but thas is the greatest miracle of all. That regardless of where I have been in life, where I am at now, and whatever the future may hold, His love is unchanging, and His grace covers all. Which is a really, really good thing since I KNOW that I will need a lot more of it in the years to come.

Two years later we are still piecing together the Meghan puzzle. This month is a marathon of follow up appointments, and this first week proved that we are still in for some unexpected surprises. We met for routine follow up with Meghan’s nephrologist. She has cross-fused renal ectopia (which is really fancy for her kidneys are snuggled up together). We were expecting a “she’s been fine from a kidney standpoint, see you in a year…”, but instead we found out she has distal renal tubular acidosis (which is fancy for her kidney’s won’t excrete the right amount of acid into her urine, so it backs up into her blood…can you tell Addie and I have been reading a lot of Fancy Nancy books??). As diagnoses go, it’s not a terrible thing, but it does mean that she will have to take another medication 3 times a day for the rest of her life. The up side is that it may actually help her to start growing, and have more energy overall. Trivial as the diagnosis may be to some, hearing that there is “something else” wrong always lands us back into that familiar place of diagnosis day, stirring up those old feelings of dread. This time though, as I was driving home from the hospital (covered in pee by the way…they really need to figure out a better way to do urine collection in un-potty trained kids. I mean, who cuts a HOLE in the diaper and expects whatever doesn’t make it into the bag to somehow miraculously stay IN THE DIAPER??...I digress…)….I was mentally processing what the diagnosis will mean for Meghan and starting to feel anxious over the whole thing when I felt in the quiet of my heart, “I already knew”. 

     Anxiety turns to praise, sadness to thankfulness as I remember that nothing is a surprise to the one who knit her together.

So onward we go, trusting in His goodness, and singing of His love.

Looking very grown up!

Getting into trouble...

Helping little sister with some sitting

Even 4 year olds can tube feed!

One of her favorite toys:)

"The LORD your God is with you, he is mighty to save. He will take great delight in you, he will quiet you with his love, he will rejoice over you with singing." Zephaniah 3:17

Running with Purpose, and a Little Bit of Sunshine

Summer’s winding down, and we’re squeezing in the last few days of freedom before preschool is added into the mix of therapy and doctor’s appointments! We’re definitely transitioning into a new phase of our lives, and Meghan is ready to move on too. 18 months old now, and without a doubt her last couple of months have been so much fun to watch as her parents! She has continued to make amazing strides in her development, and fights so hard to make her body do what she knows she should be able to do. We’ve been working on sitting for a LONG time, and just in the last couple of weeks have we been able to help her into a sitting position, and she is finally able to maintain it without support. Now, that doesn’t stop her from turning it into a game of “let’s fall backwards to see if mom’s still going to catch me” (in which she gets the cheesiest smile on her face and says “mommy” when I do). How can I resist??

She’s also been talking. And talking. And talking. One day I was lying on the floor with her playing and I think I said “one”. I heard her little voice say, “two, three, four, five, six, seven, eight, nine, ten”. I really didn’t believe what I was hearing, and since we have not been “working” on counting, I said it again, “one”, and off she went. It didn’t stop with counting. Since she has been born, we have been trying to stimulate her growing brain as much as possible in order to give her the best chance at developing. We have discovered that nearly every song, book, rhyme, DVD, etc- you name it, she has been listening. When you sing a song, she can fill in the words at the end of the phrase, and I have started to catch her singing entire phrases to herself when she thinks we aren’t listeningJ It is absolutely amazing to hear her little voice. A voice that we weren’t sure we would ever hear. My favorite words lately? Mommy, happy, sunshine, and “lub you”.

Want to hear a little duet? How about You are my sunshine!

We are still working at getting her to bear any weight on her legs. I am hopeful that as her neck becomes a little stronger each day, she’ll find it easier to focus on a new position. Lately she has been getting used to a jumperoo and has finally allowed her feet to touch the floor! It’s another start, and in the meantime, she’s been motoring around in her “zoom zoom chair” (don’t be fooled- the thing only goes about 1 mile per hour) and figuring out all the things she can reach now that she’s three feet off the ground! We have a loaner chair for a little while to see how it fits into our lifestyle. So far, it would be a chore to transport the thing (man oh man is that thing HEAVY), and isn’t really set up to “push”, and Meghan isn’t exactly precise with her driving or directionality yet (like most toddlers, who, if given the opportunity to run, will undoubtedly run in a million directions, and all of them would be AWAY from where their parents would like them to go) so it seems taking it out and about would be tricky. But what’s important is that she really knows that she is in control of the chair, and seems to love being in it for short periods of time here at home. So we’ll see. We are hopeful that someday she will be able to walk, and we will do everything we can to help her get there, and at least in the meantime she has a way to be in control of her own mobility.

Speaking of mobility, this fall, I am going to be running the Nationwide Children’s Hospital Columbus Half Marathon again in Meghan’s honor. Both of my girls inspire me to better every single day, but being Meghan’s mom has made me committed to work, and push myself as hard as she does to achieve what comes so easily to others. I am grateful to God that I am physically able to take care of her, and help her toward her own physical goals. So in turn, my goal is to run this half marathon every year until she can walk, or I can’t. If walking isn’t a part of God’s plan for her life, then she will be rolling across a lot of finish lines with me.

There are three charitable organizations that are near and dear to my heart: CURE International, The Asher Foundation, and Oasis of HopePregnancy and Parenting Support Center. Would you consider making a donation in Meghan’s honor to one of these charities for this year’s race? Or would you like to be on Meghan’s team and run in her honor? We would love to hear from you! Email us at milesformeghan@gmail.com. You can donate by clicking on the links above. Any of the organizations would all appreciate any help you could give.

Tomorrow Meghan is scheduled for another sedated MRI of her Brain and entire spine, a g-tube change, and a minor surgical procedure. Would you all keep her in your prayers for the day? Although some procedures may be easier on her than others, it never gets any easier to hand your baby over to the team and kiss her sweet scared little face as the tears fall around the anesthesia mask. This will be her 6^th procedure with sedation. God has been faithful to bring her through each one, and we entrust her to Him tomorrow.

We'll keep you posted! 

"Don't you realize that in a race everyone runs, but only one person gets the prize? So run to win! All athletes are disciplined in their training. They do it to win a prize that will fade away, but we do it for an eternal prize. So I run with purpose in every step...."

1 Corinthians 9:24-26

          Showing off her sitting skills!

          Getting into a little trouble...

        Hanging out with her big sister:)