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.

Valleys

So many people were asking for an update on Meghan, so here it is! May and this first part of June have been completely overtaken by appointments. So many in fact, that Addie even started muttering, "Cleveland Clinic, again?!". It's not easy being Meghan's big sister sometimes, but Addie is hands down Meghan's favorite person. Having just turned 4, she is starting to vocalize a little bit more about her experiences as Meghan's big sister, and is starting to realize that Meghan's experiences are different from her own (she was pretty convinced for a while that she had a shunt, and went to therapy when she was a baby!). However, she has been quite a little trooper, helping Meghan through some tough times these past couple weeks. 

First the good stuff! Meghan has done a great job of healing from her tethered cord surgery, and is back in therapy. She's been getting stronger and stronger, and has learned how to bring her head to a midline position when you tell her to "fix it"! This past week we had our first appointment of many at the "seating clinic". Over the next 6 weeks, Meghan will be learning to use a power wheelchair. If she does well enough, we will be ordering one of her own! It's a process, and we look forward to updating everyone on that. It's pretty exciting to think about her gaining some mobility in a way that will work for her. Also, this past month she became the proud owner of a new hearing aid (complete with purple and white polka dots), and we are learning that while it helps her, she is very aware that it is there- meaning she likes to pull it out and throw it. We are evaluating how we can best help her get used to it:) Meanwhile, she has been learning signs like crazy, and can proudly blow you a kiss!

With all that's going on, we've been a little overwhelmed lately. Appointments have been almost daily, and balancing phone calls to insurance, financial services, doctors, medical equipment vendors, and case managers could probably land someone a part time job (anyone interested??). On top of that, Meghan has had a bit of a rough go- getting a stomach flu and then suffering through some complications with her feeding tube. Quite overnight, the tube started to bleed, drain, and cause her some pretty bad irritation on her skin. We have been back and forth to the hospital and the surgeon, who has cauterized some tissue and put her on some new medications.The feeding tube has been such a good thing- she was up to 17lbs before she got sick, and while she was ill, it kept her out of the hospital since we were able to give her fluids in the tube. We are really hoping to get this under control quickly! It has put her through a lot this week- lab draws, cautery, and a lot of poking and prodding. I cannot describe what it feels like to watch your child in pain, terrified, and be completely helpless apart from wiping away alligator tears, and snuggling her close until the last heaves of sobbing have left her sweet little frame when its over. These are the moments you simply endure, and cling desperately to the knowledge that the Lord is in control of her life, and ours. These are the valleys. Some are harder to walk through than others, but when you are in the midst of the walk, they are all hard. But, they make getting to the other side that much sweeter, and if you pause long enough along the way, you can see there are little bouquets of God's mercy and grace along the way. A sweet Meghan smile. A familiar face in the hospital. A sister who gently, compassionately rubs a tiny little arm. A friend who is just there without being asked....and a day like today, where the peace is greater than the pain, and we are all together as a family.

Trying to stay busy at the docs..

"I have a diagnosis. You have Meghantosis. "

Getting stronger in the bumbo!

Finally feeling better.

Enjoying her first campfire!

Joy!

My new accessory:)

The Lord is my shepherd, I lack nothing.
     He makes me lie down in green pastures,
he leads me beside quiet waters,
     he refreshes my soul.
He guides me along the right paths
    for his name’s sake.
Even though I walk
    through the darkest valley,
I will fear no evil,
    for you are with me;
your rod and your staff,
    they comfort me.
Psalm 23: 1-4