Covered

As I sit down to write this post, I realize it's been almost a month since my last one! There is a lot that has been going on these past few weeks, and we have been pretty overwhelmed with appointments (16 to be exact). So I'll do my best to catch you up:)

Meghan's surgery was almost a month ago, and she has been doing really well! Her back is pretty well healed, and the feeding tube is looking good. We have even been able to use some cute custom made g-tube pads that we got for Meghan that help to secure the tube, and look a whole lot prettier than a boring old medical sponge. She's back in therapy, is getting stronger, and has even started to hold her head up independently for a minute or so at a time before she needs a break!

In addition to therapy and follow ups with the surgeons, she had a full scale developmental test called the Bayley test. Her results were more delayed in some areas than others, but she has what's called a "global" delay which means that she is behind in every area they tested when compared to her typical peers at the same age. I have mixed feelings about the test, especially since we are so proud of how far she has come, but it helped us see where she is at, and where there is still room for progress. It also helped our developmental pediatrician decide that she should be evaluated for speech therapy. We had that done, and we'll be adding that into her weekly therapy regimen. We visited her ophthalmologist who is keeping a close eye (he he!) on her muscle weakness. He wants to make sure her shunt is working optimally, and if so, plans to do corrective surgery on the muscles of her eye in the future. Finally, we had a follow up with her audiologist who fitted Miss Meghan for a hearing aid to help her overcome what we learned was profound deafness in her left ear. We are so hopeful that this might help her speech develop even further! And it will have polka dots. What could be better than that?!

In other exciting news, we were referred for an evaluation for the power mobility clinic. Essentially, if she does well, Meg is getting her very own wheelchair, that SHE can control. Our developmental pediatrician thinks that cognitively, she is able to understand so much, and is a good candidate for the chair. The research has shown that children who are unable to make their bodies do what they know they should be able to do, have amazing success with both increased development and decreased frustration when they were given the opportunity to be in control of their own mobility. Our doc showed us a video of a little girl in the chair for the first time. We were bawling. It is such a profound feeling to see a tool that would give your child the opportunity to do something she can't yet do on her own....get a toy she wants across the room...play in the yard with her sister...I can't hardly wait for that appointment:)

Now for the really awesome stuff. Just this last week, we have started to get medical bills with pretty intense numbers attached, a denial letter from the insurance for a piece of specialized equipment for Meghan (that has been on order for almost 6 months...) calling it a "convenience item" and not "medically necessary", and we found out that our insurance does not cover anything related to a hearing aid for Meghan, including the hearing aid itself. We also have another piece of equipment on order, and now we are looking at possibly getting a wheelchair in the very near future (any and all of which have a 20% copay with our insurance plan). The best part? It's covered. Covered by the hearts of 230+ dear family and friends that love Meghan. Covered by the hard work and generosity of a community of people that care, and a sacred brotherhood of firefighters. Covered by people we have never even met, who were moved by Meghan's story, and her sweet spirit. Covered by one incredible young lady, who has one of the biggest hearts I have ever encountered, and who I am blessed to call my friend. Covered by a God who provides, and who has continued to be faithful. Covered by the hands of people who organized, donated time, effort, and resources to overwhelm our family with love. We are forever grateful, humbled and honored to be the recipients of a love such as this. Our most sincere thank you to everyone who was involved in Meghan's benefit. You have blessed us beyond measure.

Couldn't resist sharing this one:)

Working hard at PT!

Patiently waiting for the doctor!

Caught in the act of snuggling.

Getting fitted for her hearing aid! Daddy's turn to be the bad  guy...

"Bring the whole tithe into the storehouse, that there may be food in my house. Test me in this," says the LORD Almighty, "and see if I will not throw open the floodgates of heaven and pour out so much blessing that there will not be room enough to store it." Malachi 3:10

It's a Good Friday.

Writing this post with joy, since we are HOME! Meghan did well last night with her continuous feeding, so they let her have an actual bottle this morning. She chugged the entire thing, and looked at me like, that's all you've got?? I guess she was hungry after not eating anything but pedialyte via g tube for 60 hours! She had only needed oral pain medication, and since we were not new to the feeding pump and already had it at home, they decided we were able to handle the first formula feeding run at home.

We were happy to be on our way, since Meghan had clearly begun to associate every person she encountered in the hospital as someone that might try and hurt her. She would cry as soon as any medical staff entered the room (except for our awesome PT who timed her visit just right enough the second day to get a smile:), and even small things like removing monitoring patches provoked her to cry. Once I picked her up, she didn't want to be put down, and it is safe to say that I think she was scared, and in pain on top of that. She was restless and irritable and it was heartbreaking to watch. But, when we put her in the stroller, she instantly lifted up her arms and smiled! She KNEW we were getting out of there. It was awesome. Once we arrived at home, it was like someone had flipped the Meghan switch and she was herself again. She still whimpers with position changes, and is completely not a fan of hooking up the feeding tube since it is still sore, BUT she was relaxed, playful, and we got some serious smiles.

It is amazing to me that her little body can go through so much, and she can still smile, and trust us despite the painful things that we have to help her go through. It goes against the very nature of a parent to ask their child to endure pain, even if it is necessary to live. Today being Good Friday, it reminds me of what Christ endured on the cross, at the direction of his Heavenly Father, that was infinitely more painful than we could ever imagine, yet he was willing to walk there because he trusted it was his Fathers will, and he knew he wouldn't be alone. How much love does it take to walk your child through physical pain? Infinite amounts. More than I can ever comprehend. But the end result, is LIFE, and renewed understanding of His faithfulness, and depth of His love, and a humbling understanding of the kind of trust my daughter has in her parents.

IV tubing is no match for a hungry Meghan....

Holding my sleepy lady.

Seriously happy to be home!!

"looking to Jesus, the founder and perfecter of our faith, who for the joy that was set before him endured the cross, despising the shame, and is seated at the right hand of the throne of God".

Hebrews 12:2

HAPPY EASTER!

Recovering

It's post op day 1, and we are definitely recovering:) Overnight Meg was pretty restless and uncomfortable, but the pain medicine allowed her to sleep enough that by this morning, I managed to get a smile out of her. That was by far the longest I have seen that sweet girl without a smile. Today she had a semi busy day- she was seen by neurosurgery, pediatric general surgery, and the pediatric hospitalist team for rounds this morning, and besides having pain was doing well, so she got to have her arterial line and catheter removed which made life a little easier. They started using her g tube for feeding and she has been doing well with that so far. We were moved out of the ICU, (yahoo! No more monitors!), and into a private room (DOUBLE yahoo!!). I got to hold her for the first time today and once I had her in my arms she made it quite clear that I wouldn't be setting her down anytime soon. So we snuggled all afternoon, and that's exactly how it should be. Tomorrow she should get to have her IV's out (she has one in each hand- to a one year old that's no fair!), and we are going to start her back on formula feeding instead of pedialyte.

We are very hopeful that if all goes as planned overnight they may release her tomorrow. She will be much more comfortable at home, and I think we all miss her big sister:)

I'm off to try and nap! Here's a few pictures from today. ..thank you all for your continued support. It means so much!!

Mercy

What a very long day it's been! Just a quick update to let everyone know that Meghan is doing well. She is in a decent amount of pain, but they are giving her morphine and it seems to make her a lot more comfortable. They don't want us to hold her, so we have been doing our best not to climb in the crib with her:) Both surgeries went very well, her new hardware is settling in, and we should be able to use the tube tomorrow.
Our neurosurgeon said that because of Meghan's specific abnormalities, she was able to gain access to her spinal cord without cutting any bone, which is the usual method. Some may call it luck, but we call it mercy, and are so thankful for a talented surgeon who is able to think outside the box.
We are so grateful to everyone for keeping Meghan, and us, in your prayers. We'll keep you posted!

The LORD is good to all: and his tender mercies are over all his works.
Psalms 145:9

Carry On

Tomorrow is a big day for Meghan! We're headed in early to Cleveland Clinic Children's Hospital for Meghan's 2 surgeries- the tethered cord release, and g tube placement. She will be getting a mini-ONE g-tube, which we hear is the bees knees in the g-tube department. If you are really interested in what that is,  you can click here.

We are told that total time should be about 5 hours for both surgeries to be completed, and she will be in the Pediatric ICU (PICU) for about 3 days after. It is no less than terrifying to hand over your sweet baby to a surgical team, but we are confident that her doctors have made decisions that will give her the best chance at continuing to progress- and she IS progressing, and showing us every day how hard she is working to accomplish things. She started rolling completely over a couple weeks ago, and I now have to watch where I put her down because it is likely she will not stay there! She is also starting to mimic behavior, and even some different sounds. She knows the sign for more, and "all done", and in the last few days, we even got to hear her little voice...

Talk about amazing! We are cherishing every little thing she does. And she has, hands down, the most awesome hairdo's ever.

This week we had some Easter pictures taken. We had a lot of fun, and our amazing photographer even photo-shopped Meg's NG tube out of the picture! We love you Sarah-Marie! Check out her website...she really has a gift....Sarah-Marie-Photography.

It takes strength I don't have to walk through the harder days, but we continue to walk, carrying this sweet girl, knowing that her story is being written and this is only one chapter. A chapter that will hopefully lay the foundation for her to write a happier one....one that includes her running perhaps? We're asking God for big things. 

"being confident of this, that he who began 

a good work in you will

 carry it on to completion until the day of Christ Jesus." 

Philippians 1:6 

Surgery Plans

Quick update. Meghan has been sick the last week and a half, her first real illness, and the last couple days have been pretty hard on her. She’s had a high fever, and to top it all off, she pulled out the NG tube for the first time today. I tried 3 times to get it back in, and each attempt was met with malfunction. First it was in too far, then she threw it up, and finally, it was coiled in her throat. I threw in the towel. Her poor little cheek needs a rest from the adhesive anyway.

Thankfully, she won’t have the NG tube much longer.  Meghan is going to have surgery in 2 weeks. Our neurosurgeon reviewed her case with several other surgeons who feel that Meghan needs to have the surgery to untether her spinal cord. We hope that this will prevent damage, and it might even help one of her brain malformations, the Chiari, to improve. Since she was going to have the g-tube eventually anyway, the surgeons decided to coordinate her procedures. Once the neurosurgeon is finished, the general surgeon will do the surgery for her g-tube, with our neurosurgeon there to supervise the movement of her neck. It’s going to be a big day for Meg. She will have to lie flat for about 2 days afterward, and we anticipate being in the hospital for about 3 days.

If Meghan is on your prayer list, please pray that she is well before surgery, that the two procedures will go smoothly, and that she will be protected from infection. There is risk of infection with both procedures, unfortunately more than the average child because of her shunt.  We know that none of this is a surprise to God, and no matter how anxious it makes us as parents, He is sovereign.

I am optimistic that once this is over, we might see some improvement in her ability to use her legs, and maybe catch a break for the summer and get back to therapy and the usual appointments. I am clinging to that optimism and to His hand. Walking through this is hard as a parent, but I know that perseverance brings forth a completeness that He intends for us. We will be there to carry Meghan through, because He is leading, and wherever Meghan is led, there is sure to be joy.

“He tends his flock like a shepherd:

He gathers the lambs in his arms

and carries them close to his heart;

he gently leads those that have young.”

Isaiah 40:11

Addie helping Meg with some fine motor skills!

Somebody forgot this was "work"....

Did I mention she needs a break from the adhesive??

My sweet girls:)

Celebrating

Meghan’s First Birthday. Oh my. I can hardly believe that I am sitting down to write this post. I am not sure if I will be quite so sentimental about all the other birthday’s, but this one is big. A baby’s first birthday is certainly cause for celebrating, and with Meghan Grace, we have lots of things to celebrate.

Meghan’s birth was shrouded in uncertainty, and her first few days of life were filled with a discomforting welcome into the world- standing in stark contrast to the quiet, calm blissful hours of newness that most babies are swaddled in. Beeping monitors, hours of time we weren’t allowed to be by her side, brain surgery, so many tests, a few answers and many more questions were the hallmarks of those first days. We had no idea what would be in store for us this first year, and the way in which we would be changed, stretched, and formed into the family we are today. There has been constant worry, sometimes to the point I thought my heart would break. But…I can say with overwhelming certainty that it has all been a gift. Through this first year we have experienced some of the purest joy we have ever known. We have loved harder, cried harder, and been more aware of how blessed we are than we can ever explain. Our faith has increased beyond measure, and that is priceless. We have seen miracles, and measures of God’s faithfulness have been abundant. We have never walked alone, as he has brought people into our lives that have each been there exactly when we needed them. He has strengthened the good, and taught us to let go of what’s unimportant. Best of all, we have watched Meghan grow. Her hands have gone from tight little fists, to ones that are able to relax, clap, and hold up for declarations of “so big!”. She has finally, finally doubled her birth weight, and her thin little legs have started to acquire a layer of kissable baby fat. She has worked so hard, and can sit up against my chest. She can bang a drum, eat her toes, and roll completely over when she’s really trying, despite the fact that she cannot lift her head off the floor. She loves, loves, loves her big sister and studies her every move. But my absolute favorite thing is her smile. She smiles with her whole face. You simply cannot look at her sweet smile and not have every trace of anything other than joy washed out of you. She has endured more than 120 appointments for specialists, therapy, and various tests, and she smiles through everything. She has learned a lot, and so have we.

I have in the past repeated a phrase that I have heard repeated back to me so many times this year…”God never gives you more than you can handle”…. It sounds like good, supportive advice, however as Meghan’s mom, I now feel that the statement is completely and utterly wrong. It implies that we can handle whatever “it” is on our own. I have learned that sometimes He allows us into situations in which we are in so far over our heads that the only way we can possibly walk through them, and be blessed by them, is by clinging to His hand.  I am so far from strong, so far from able to handle this on my own.  It’s situations like these that allow us to see who God is, and what He can do through you, if you let Him. Because of Meghan, my faith has been refined, and I’ve been given a place to stand to give the glory back to Him. That has changed my life more than I can explain.

We still don’t know where we will be in a few months, let alone a few years. Meghan makes predicting the future impossible, and forces us to live for today, and that in itself is a precious gift. So Today was a very good day. Today, was a day of celebrating life, Meghan’s first birthday, and 365 days of being her family.

Happy, happy birthday my sweet love.

We had a music therapist come to Meghan's party....she LOVED it!!

So did the kids! Thanks for some spectacular guitar playing Brittany, and bringing so many fun things for the kids:)

Singing!

A big smile for her first taste of frosting! Thanks Diane, from Sweet Blessings Bakery  for making her a special treat!

Finishing up her treat:)

For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future.

Jeremiah 29:11