Emmie got a free cone. We didn’t think her nine month tummy really needed full on dairy just yet.
What next?
We were actually having a bit of trouble keeping her occupied and keeping all of her various monitoring cords out of her way. The neurosurgeon who came in to see her thought she looked great but said Dr. C would be in that afternoon to make the call about when we would leave next.
Eventually, after a bit more play and eating (like a whole pancake and half a banana), she managed to get all of her monitors popped off and her nurse decided to just unhook her. She told us about the playroom and off we went. Emmie had a blast before getting sleepy again. So, back to the room we went.
Dr. C came in while Mark was getting lunch and Emmie was cruising the room. He first looked for her in her crib and then started asking where she was. He was so shocked to see her walking around and smiling. And he told us outright that he really didn’t see any reason why she couldn’t go home that day. We agreed!
Orders were put in and Emmie got her final iv dose of antibiotics and we packed up and headed home.
But first…a nap was needed.
So, what’s next? Are we done? Will she have more surgery? Is the kyphosis corrected? Stay tuned for another thrilling blog post in the Adventures of Super Emmie and her fight against Neurofibromatosis!
Guest blogger here…. Hi, I’m Mark. The dad type around here. I got the opportunity to visit the San Francisco area on business early in February. The work side of the trip was pretty uneventful – your typical conference with presentations and then some hands on demonstrations & discussion. The really interesting parts included the travel experiences, good food, and interesting sights to see.
Food: After 6 hours in the air and only a sandwich and a smoothie all afternoon and evening, I needed a local, late night filler. So I stopped at In & Out Burger on the way to my hotel in Livermore. They make their fries fresh in the store and your burger on demand. Yum.
The other special treat was a visit to a place in Berkeley called Skates in the Bay. Can you guess why it’s called that?
That’s right – it’s actually in San Francisco Bay. They have great seafood and an amazing view of the Golden Gate Bridge and Alcatraz Island. I had salmon.
The various configurations of the ship over her years of service. She started with a straight, wooden deck. Later, additions were made so that the deck was angled and metal plated.
This is the spot where President Nixon stood and waved to the Apollo 11 astronauts as they exited the helicopter which had retrieved them after splashdown in the Pacific.
The modified travel trailer which was home to the astronauts for several weeks after their return to Earth. Officially, the “Mobile Quarantine Facility” – actually, a modified RV.
We did venture into downtown San Francisco one evening via the BART and saw the tall buildings and made our way to Fisherman’s Wharf via Chinatown to see the sights. We got in a ride on the trolley that uses an underground cable system for propulsion.
This is a shot of the Bay Bridge as we crossed it from the Oakland side heading back in toward San Francisco. I was heading toward the airport for the red-eye flight home.
One text from Mark after almost two weeks of trying to pin down a date. April 29th is confirmed.
And suddenly, what was just a far off something unknown is now a very real, very near present thing about to happen.
A week and a half.
A week and a half until we take another step in our NF journey. Until we see what so many parents have had to face numerous times and sometimes way more scary.
A week and a half until of being reminded that this beautiful girl is not our own. That we don’t control her future or her present.
A week and a half and the reminder that only God knows what our daughter needs. How long she will walk this earth. That He is in control. It’s very present and real right now.
And though I can’t control the shaking at times. I can’t tell my body that everything is going to be alright and I can relax and be calm. I can rely on my God and know that He alone is in control and He is not only holding Emmie in His hands. But me. And our other children. And my amazing rock of a husband, Mark.
When our kids are born, we give them a verse that is our prayer for their lives. Emmie’s verses were Matthew 26:6-13 when the woman poured perfume out on Jesus’ feet. Jesus spoke beautiful words about her saying “Truly, I say to you, wherever the gospel is proclaimed in the whole world, what she has done, will also be told in memory of her.” We want Emmie to make an impact for Christ in the world and this was and still is truly our prayer.
However, as we’ve walked this first year with her and learned more about how God has made her unique, we felt the Lord leading us to a more fitting verse to pray over her.
Proverbs 31:25
She is clothed with strength and dignity,
and she laughs without fear of the future.
If you know our Super Em, you’ll know those verses fit her to a ‘t.’ Our prayer is that she continues to face the future without fear and that her beautiful silly laughter will help us also to face it the same. Thank you for the prayer and understanding as we take time to spend with our family this next week and a half.
Neighbors! Usually when a few of us come out, we call come out and the kids draw with chalk (on themselves or the sidewalk) and play. The adults get to visit too. I love our neighborhood and our street is a wonderful community!
We spent much of February and some of March with at least one if not two or three children sick at a time. Well, Mark and I were sick too. It was definitely a tough month. We survived with very little antibiotics and healthy. While it was tough being sick. I so loved the cuddles that came with the yuckies.
When Mark traveled to San Francisco (he promises he’s working on that), we loaded the kids up to take him to the airport. When he checked in the clerk made us all wait and ran in the back and came out with a box of goodies for the kids. They were so nice. I know people can say a lot of things about Delta but this customer service won my kids for life.
Working on the stone. This was lightweight stone facade called Air Stone. It was easy (don’t ask Mark…he was the cutter), to cut and went on with their adhesive glue gloop. Once we got in to a groove, it got easier and went faster. I placed, marked and handed off. Mark cut and sometimes installed or would hand back to me to put the glue on and stick up.
I really do love it! It makes the room so much more inviting It wasn’t expensive either. We paid around $75 for the whole facade and had plenty leftover.
We’ve created a page specifically on our blog to link to fundraiser and adoption updates. But, I wanted to update on the home page as well.
We have an awesome friend who just happens to be a graphic artist. Okay, she’s really just a great artist who does graphic design as well! She agreed to design a t-shirt for us for a fundraiser and here it is:
The verse is one we felt led to use for Y the Brave’s coming home!
Psalm 145:5-6 On the glorious splendor of your majesty, and on your wondrous works, I will meditate.6 They shall speak of the might of your awesome deeds, and I will declare your greatness.
T-shirts are $20. Plus shipping when applicable. Orders can be placed via our Paypal account. This is a pre-order. We will take orders until May 1st and then place a bulk order locally with Big Frog.
We are so excited to be able to buy locally and work with some amazing people over at Big Frog.
To order via Paypal, you can go here:
| Delivery or Shipping |
|
Delivery $20.00 USD Shipping (up to 4 shirts) $25.95 USD |
| Adult Sizes |
|
None X-Small Small Medium Large X-Large |
| Youth Sizes |
|
None Y-XS Y-S Y-M Y-L |
While we were there, Papa & Grandmere hosted two young ladies with Life Action Ministries as they came to minister at their church. Not only were these two ladies homeschooled, they also were from large families. So, being around our crazy kids was second nature.
I’ve been trying for two days to come up with what to say here. An update for Emmie. Something I definitely don’t want to type. But, I know that we have so many friends from all over who are praying for her and us that I feel I need to update you all too. I just really have no idea how to put a title on this one.
Thursday morning we received a call from the neurosurgeon’s nurse practitioner. She told us that Dr. C had consulted around and wanted to talk to us about surgery. Obviously, if a doctor wants to meet with you, it’s not good. We’ve learned that pretty quickly. However, because Dr. C is two hours away Mark set up to talk over the phone. We were supposed to talk Thursday afternoon but after not hearing from him at the appointed time, Mark called the office and they told us he was in surgery.
So, we waited.
This is the interesting part.
I was out getting Easter clothes for the boys while Mark was cutting grass. One off the kids was in charge of watching Emmie. And that child was watching her. However, the child had set her on the couch, while the child was watching her…she fell off. Thankfully, the child caught her before she fell all the way on the floor but she led with her hands. I got home ten minutes after the episode and she was still crying and not using her hands too much.
A quick call to the pediatrician and I whisked her up and got her there faster than I will admit. Dr. B sent her on to x-rays next door and called the radiologist to let him know about her NF. They also gave her a bit of motrin. Quick x-rays and we were back to Dr. B to await results. Thankfully, by that time, she was finally settling down and with her arm braced against me, went to sleep. Over an hour of pitiful painful crying. I was heartbroken and Dr. B was getting worried.
Thankfully, the x-rays showed nothing was broken. The best that Mark and I can figure is that she sprained her wrists. She continued to favor her wrists the rest of the night but did use them some. Saturday was a bit better.
So, on the way home we got the call from Dr. C. He had consulted with ENTs, general surgeons, and everyone else in between all across the country. They were all in consensus, something needs to be done sooner rather than later. The reasoning is that the worse the kyphosis gets, the harder it will be to repair it and the less successful it will be. Dr. C looked at other options besides surgery but Dr. W confirmed that chemo would not be good at her age or for the type of plexiform neurofibroma.
That leaves us with one option…surgery. A general surgeon and Dr. C will both be working on Emmie. We should be hearing from the scheduler within the week with possible dates. We do know that it will be within this next month. Because the kyphosis hasn’t gotten significantly worse in the past six months, we don’t want it to keep heading in that direction.
The hope is that the surgery, which will remove as much of the plexiform as possible (called debulking), will significantly correct the kyphosis. Again, the goal is to try and delay the kyphosis correction as long as possible because her bones are so soft (due to age).
I feel like I’m typing somebody else’s life right now. Not ours. But here it is. If you ask how we’re doing, we’ll be honest…not good. We know God is in control. We definitely trust Him. But this is so hard.
We will update when surgery day is scheduled. For now, if you feel led to pray, here is what God has laid on our hearts:
1. For steady hands and wise doctors.
2. I am feverishly trying to plan out the rest of the kids’ school so that they can work on some of it while we are in the hospital and recovering. Please pray I can get it all done and getting all the normal travel things ready.
3. Peace for the kids and us and our family.
4. Good coordination of schedules with grandparents, aunts, or other childcare volunteers. We have expressed to both our sets of grandparents that we would like for them to sit with us during the procedure. That means we’ll need childcare for the children who won’t be at the hospital.
