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:)

Figure Me Out

Yesterday was Meghan's 6th session in the power mobility clinic at the pediatric rehabilitation hospital. We have long known that she clearly understands the concept of cause and effect, which is instrumental in the ability to operate a wheelchair. First we tried head controls, which didn't work well because the degree of scoliosis in her neck made it difficult to maintain an upright position for very long, which meant that even when she looked right, the left side of her head would still maintain contact with the left head control, making it pretty confusing for her, and incredibly difficult to actually turn right. So next we moved to switches, which were placed on a tray, and activated just by light touch. While she has the ability to voluntarily touch a button, the forced use of her hands was creating a major problem with her sensory processing issues. Meghan likes to be in control- if it's on her terms, she will do what she is able to do with her hands. Force her to do it, and she's not a happy camper. Our Occupational Therapist has been working with her since she was 7 weeks old, and from very early on, we have had to consistently ask her to use her hands instead of her feet. It's pretty clear that she learned to use what she has:) Usually, she prefers to play with toys like this..

When you can't sit up, apparently you learn to use your feet to hold the objects, and manipulate what you can with your hands:)

 So, at her clinic yesterday we first tried going from switches to a joystick. After 10 minutes, and completely refusing to touch anything, she had a mini meltdown and it became clear that we weren't getting any further today than we have for 6 weeks. So we took a break, and our therapist brought out a swing to let her calm down. As she was rocking with Meg, she asked if Meghan ever played with toys with her feet. To which I of course replied, "all the time!". So, she rewired the chair, and put the switches at her feet. And then this happened:
It's go time! (Excuse the geeking out and the sniffles. It was kind of a big moment!)

The look on her face when she first realized we weren't asking her to use her hands, was one of surprise, and then elation! She was clearly relieved that we had finally figured it out for her. I exclaimed that I never even considered that using her feet would be an option! Our therapist replied- "ANYTHING is an option". I can't describe how thankful I am for a person so invested in the success of a child.

We are so excited at what this will mean for Meg and her independence, and we are praising God for his continued provision. Without a therapist who was willing to be creative and unconventional, Meghan might not have had this door opened for her.

Onward! Yeah!!

Sweet Summer

This post is a happy post. This post is shared with complete joy as we have had an awesome few weeks. Once Meghan recovered from being sick, she pretty much let us know that she was ready to move forward, and has taken some really big strides in her development! We met with her neurologist who said that she is cognitively making great progress. Because of her motor developmental delay, he diagnosed her with cerebral palsy. We knew that that was probably coming, and it's ok. At the end of the day, Meghan is Meghan, no matter what diagnosis they choose to assign to her- and we are totally amazed by her, every day. Here's a little glimpse of what she's doing:

The video quality is terrible- why? Because she has figured out that there are GAMES on my phone, and if she sees the phone, it's over. So I had to be sneaky with the camera to capture her doing something we didn't really even teach her...Meghan's Voice.

So she can count! Who knew?? The words have been pouring out of her lately. Animal sounds, water, bath, light, love you, and her personal favorite, baby signing time. It is so sweet to hear her little voice start to take a place in the daily soundtrack of our life.

Thankfully, we've been enjoying our summer! We even got to take a vacation a couple weeks ago, and it was one of the best weeks we've had in a long time. Relaxing. No therapy or appointments. Ice cream on the menu every day. A little bit of awesome, that couldn't have come at a better time.

September will resume the craziness- Meghan is scheduled for another MRI, combined with two minor surgical procedures, and a g tube change to start out the month, and then it's full speed ahead with the usual therapies, and appointments, and likely eye surgery sometime this fall as well. And oh yeah- PRESCHOOL. How on earth did my little girl get so big? I know every parent asks this question, but I am still amazed at how fast her 4 years have gone. So we'll throw in some more crazy to the mix. Bring it on:)

Want to see what we've been up to?

A little snuggling...

 A little learning...

 A little swinging...

 A little sweetness...

 A little exploring...

 A little relaxing..

 A little smiling...

 A little munching...

 A little roaring...

 And a lot of loving. This past week we had the opportunity to meet up with two other "hydro families". I got to meet the handsome Grady, and sweet Zoe (pictured here) who has been through quite a lot herself. With life being as crazy as it is for families of children with special needs, taking the time to meet up is difficult, but a precious thing happens when you get to connect with people on a similar journey in life. It was a blessing to get to spend a couple hours with such great families.

We are so thankful that we have had the opportunity to meet such amazing people- connecting with the kids, and with each other. These moments mean so much, and it's because of them that we have learned to appreciate these simple little blessings.

 A friend loves at all times, and a brother is born for adversity.

                                       Proverbs 17:17

Anointed

For all of you who don’t know- we are home, and have been home since the 13^th! Sorry it’s taken me so long to get this update out. I never know when I will have time to sit, let alone sit and try and put some thoughts together.  Between appointments, work, and enjoying the kids it’s busyness as usual, and since coming home, we are even more keenly aware of how grateful we are to have our normal, busy days.

Part of our busyness included Meghan’s second appointment at the wheelchair clinic! She was able to get in a power wheelchair for the first time and try it out. She did great! It was a lot of work for her, and she really has to work hard to sit up for an extended period of time, as well as move her neck and head to operate the chair. BUT, she showed signs of understanding the cause and effect of being in the chair which is a really big step in her being able to use one independently. It’s so funny how at one point I might have looked at a wheelchair as something difficult to deal with. Upon receiving the “hydro” diagnosis most people are very concerned about whether their child may or may not be in a wheelchair, or be able to walk- I know we were at first. Now, all I see is opportunity and excitement and independence for my little girl.

 It’s taken a couple weeks to process all that happened during that week, and settle back in to our routine. This was the first time since Meghan’s shunt failure last year that we have faced the unexpected, and were suddenly reminded once again that we are not in control. After 3 days of testing, and antibiotics that should have eradicated any causative bacteria she continued to spike high fevers, without any other symptoms to suggest a viral illness. All of her lab work was pointing to a bacterial source of the fever, and the Infectious disease specialists were “stumped”, and concerned that she was not improving. We have always trusted that God is in control of Meghan’s life, but we also know that He desires for us to be active participants in believing that He is capable of doing “immeasurably more than we could ask or imagine”. James 5:14 instructs:

 “Is anyone among you sick? Let them call the elders of the church to pray over them and anoint them with oil in the name of the Lord. ¹⁵ And the prayer offered in faith will make the sick person well; the Lord will raise them up.”

So we did just that. We called our pastor, who came along with one of the elders from our church, and we gathered around her delicate, feverish little body and in obedience offered prayer for healing, as our pastor anointed Meghan with oil. Placing our trust in the one who never fails, we prayed, and waited expectantly.

I put a lot of faith in “medicine”, and I want the answers to be black and white, to arrive at a diagnosis, and even if there isn’t a medicine that can “fix” it I at least want know the reason for the suffering. There’s control in knowing the answer, and security in that knowledge. But this time, there were no answers. There are a million explanations for why Meghan could have started to get better that night. The doctors can’t agree on what caused her illness, or what caused her to get better. I choose to believe it was the Lord’s way of teaching us that in accordance with His will, belief leads to faith, faith leads to obedience, and obedience leads to blessing- this time that blessing was in the form of answered prayer for healing.  At other times, it seems it’s the difficult experiences in our lives that end up being blessings in disguise, when we look back and see how we were carefully brought through them. Perhaps God allowed Meghan’s illness because it the end, my faith was increased because of it.

           

And maybe, just maybe, yours was too.

Thinking about it!

Contemplating her first wheelie.

Dream night at the zoo. A night out for kids with special needs and their families. Hands down, one of the most fun nights I have ever had. The Cleveland Metroparks Zoo did an amazing job of making this a very special evening for everyone.

Catching some pool time!

The music therapist at Childrens. She was amazing, and after some silliness, she sang Meghan to sleep.  We were so grateful she visited us!

For the LORD is good and his love endures forever; his faithfulness continues through all generations. Psalm 100:5

Progress

Today started by waking a sleeping Meghan up with a blood draw, and thankfully that was the last painful thing she had to go through today (besides having her vitals taken- she apparently thinks that is no fun either). We had a really good day, and she was mostly just Meghan, hanging out getting her IV antibiotics. The Infectious Disease team took her off of droplet precautions which means she was allowed to leave the room, so we took a stroll to the rooftop for tea time (I am not joking), played in the playroom a bit and had dinner in the cafe downstairs. It was good to leave the room for a change of scenery!

This evening she developed a rash, so we gave her some mediation and it seems to be getting better. She still has a fever, but it hasn't been as high. All in all she was so much better today. We are hopeful to come home tomorrow, but we'll have the final word after rounds in the morning.

We are hoping and praying for a quiet and restful night! Thank you all for continued prayers for Meghan.

Grateful.

This will be a quick update as today left me really wiped out! Meghan endured multiple lab draws and a second IV start today, not to mention a LOT of visits from the physicians- who I am really thankful for by the way- we have some really compassionate, excellent people caring for Meghan. Some even came by just to say hi, even though they weren't on service! She also had a CT scan of her abdomen. She continues to have fevers, although today they haven't spiked quite as high. She started eating again, and they felt she improved enough to move us out of ICU! We saw a lot more of "Meghan" today than we have the last couple days, with some really good smiles! This is the best indicator that she is starting to heal, from whatever this may be. So far, still no answers.

We also saw a lot of God today. Bright moments in the midst of a difficult walk. Addie got to visit, giving Meghan some sister snuggles and some pretty amazing songs, artfully crafted on the spot just for her. We had a music therapist come in who made her laugh. A child life worker who helped make a double poke lab draw more bearable. A CT tech who just happens to be the priest at my parents church. A visit from a dear friend. So many things to be grateful for in all of this.

Thank you all for continuing to lift Meghan up in prayer. It's working!!

Isaiah 58:11

And the Lord will guide you continually and satisfy your desire in scorched places and make your bones strong; and you shall be like a watered garden, like a spring of water, whose waters do not fail.

Waiting Expectantly

Today was another long and uncomfortable day for Meghan. She continued to spike high fevers throughout the day, and her white blood cell count remained very high. She had a few other tests, including more blood work and the echocardiogram of her heart, which we were told looks "preliminarily good"- medical speak for not the source of her fever. We are still waiting on the results of the blood work and cultures.

The plan right now is to see what we learn from the additional information, and see how she does. If she continues to have fevers tomorrow then they are considering other tests. On the bright side, tonight she started to perk up a little, giving us some smiles, and even taking a bottle despite some episodes of what seems to be pain.

We are so grateful to all who have offered support, and prayer on Meghan's behalf! We are stronger knowing everyone is behind Meghan, and our entire family. Today she was covered in prayer by our Pastor and members of our church. Tonight, I am lying down to sleep, praying for answers, and waiting expectantly to see what the Lord will do.



I wait for the Lord, my whole being waits,
and in his word I put my hope.
I wait for the Lord
more than watchmen wait for the morning,
more than watchmen wait for the morning. Psalm 130: 5-6



Meghan was feeling the love from some of her hydro buddies today!

ICU

You never know what life will bring you, day to day, moment to moment. Last night I had just hit post on that update and I heard Meghan throwing up through the monitor. Rushing up to her room, I found her still gagging, and looking pretty out of it. Even after she was done, she was very lethargic. After a couple more episodes of vomiting I took her temp: 103.8. After giving her some Tylenol, I headed to the ER with her. This past week she had a blood culture that grew some bacteria, and they instructed us to come in for a fever greater than 100.5. She qualified. The ER began her work up where we found that her white blood cell count was extremely high (26k for my medical friends) so they gave her some medications and we were transferred to the Pediatric ICU at Cleveland Clinic Children's. She was seen pretty quickly by a lot of specialists, including neurosurgery and infectious disease. After running some tests, imaging, and giving her fluids and medications, I wish I could say we have answers or that she is better, but I can't. Her fever continues to spike, and she's been lethargic and irritable. It's heartbreaking.

We are worried, but we also know that none of this was a surprise to The Lord. He is ever in control of her life. So we pray, count on his faithfulness and mercy, and continue to walk by faith, despite any feelings that rise up to the contrary.

Pray for wisdom for her doctors, healing for her little body, and peace and rest for her sweet spirit.