While I was enjoying the beach, Mark made sure everyone enjoyed 3.1415 day!
Pi Day
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Tag Archives: The Kids 2015
Beach Bum
I was blessed, blessed, blessed to be able to go to Fripp Island, SC in March on a retreat with other ladies from our church. It came at the right time as we had just found out Emmie was going to need to wear a neck brace and surgery was looming in our nearer future. The time was definitely filled with crying out to God and feeling His peace wash over me.
God reminded me over and over again who was in control (Him) and I enjoyed soaking up His presence and hearing how He worked in the lives of the other amazing women at our church.
The view from the deck of the house where we stayed.
Emmie and I got our own room.
Wildlife was everywhere!
One of the most precious women in our church and I decided to take a walk to see if we could see any deer up close and personal. Besides the island just being gorgeous…
We also got to see the deer we so wanted. Several of them, in fact!
On the way back to our house, a beautiful bird swooped down in front of us and we followed it to a tree across a pond. Look for the orange beak in the picture above.
While we were engrossed in taking pictures of the bird, we realized we should watch out for the gators. At about the same time we realized that, we saw this…
Yep. A baby gator. We snapped a few more pictures and took off before we saw a bigger gator.
Emmie enjoyed some Bible study time.
And some cuddle time.
I caught the sunrise on the last day! It was just beautiful!
And I also managed to get a few cute pictures of our Ems!
Emmie decided, on the way back, that she wouldn’t mind hanging out with Miss G.
And we got to watch a “drawbridge” rotate at the same pit stop.
Happy 6th Birthday, Ceili Rain!
My middle girl turned six in March. We celebrated in style with a glow party.
And a horse cake. Let me say that again. She requested a horse cake. My dear daughter has never been on a real horse. Ever. She has a few My Little Ponies but horses have just not been as interesting as dolls. But, this is what she asked for. So, I obliged. We scoured Pinterest, found the perfect tutorial and then she dictated the colors to decorate.
All decorated up in her glowing cutieness.
She requested Krispy Kreme for breakfast and when we arrived, they gave the kids donut decorating kits. They were in heaven! (Yes, we have an honorary member of the bunch. James got to spend the night with us the night before and partake in the festivities).
Emmie thoroughly enjoyed the donuts as well! Her first Krispy Kremes.
Happy 3rd Birthday, Malachi!
Malachi turned 3 in March. I can not believe he’s actually 3! He has grown so much. We enjoyed the day as a family since I was pretty sick and had to do a doctor run.
The kitchen helpers to make birthday cupcakes.
Birthday cupcakes. Malachi changed his mind about every hour trying to decide what kind of cupcakes he wanted. I got these cute monster cupcake toppers after Halloween last year and when I showed them to him, he finally made up his mind! It was afterwards that he reminded me that he hasn’t had an actual real cake in two years. Here’s hoping for next year.
PJ Day
Our annual Bruster’s tradition! This year we were not at our home Bruster’s and had to make due with going to the one in Ge and Granddaddy’s town. It was in a bowling alley. Across from the bar. Yeah.
Well, regardless of the location, which did throw us off for a small bit, we all got our free ice cream and we loved it!
Emmie got a free cone. We didn’t think her nine month tummy really needed full on dairy just yet.
Super Heroes Unite!
Super Emmie started her most recent battle getting fueled for the journey to Atlanta. Krispy Kreme’s Superhero Day. Donuts energize every time. Okay, the sugar does.
Then it was off to pre-op.
Super Emmie surveying the land for evil lurking below.
Ah, all is well with the world.
She did great with pre-op and only had one stick to get a blood draw. Then it was off to get Greek pizza and a quick view of an art museum before it closed and then we were out for the night.
The next day, bright and early…actually, it was really early and really dark, we made our way to the hospital.
Mark and I both were at peace. We knew that God was in control and we were trusting Him above all else. We were constantly getting messages throughout the morning and day with beautiful verses and encouraging words. It was hard not to feel His presence through one of the hardest things we have ever had to do.
Sock play was a good distraction but didn’t keep her occupied for long.
Before they took her back, they gave her versed to calm her and help her not remember leaving us.
Let’s just say it did the trick. At one point her neurosurgeon, Dr. C, was talking and Mark was holding her. She reached over to me and started laughing hard. Then she started squeezing my nose and laughing. It was so hard not to laugh while he was talking about the serious stuff. At another point, she started singing and laughing.
Soon it was off to surgery and mommy, daddy, grandparents and Zoe all waited.
Surgery took about two hours. When we went to the consult room to meet with the surgeons, we looked up on the whiteboard and someone had written,
“You are the God who works wonders;
you have made known your might among the peoples.” Psalm 77:14
Another reminder that our God was in control.
Dr. C, the neurosurgeon and Dr. R., the general surgeon came in and were very positive. They were able to get in and do what needed to be done. Dr. C., feels that he got all of the plexiform neurofibroma that was causing the kyphosis but we’ll know for sure after her MRI in June. That tumor was about the size of a grape or walnut but given the size of Emmie, is pretty good size for her age. Dr. R was able to work at getting some of the plexiform neurofibroma that is in the soft tissue area. Because that plexiform is not causing any issues, Dr. R didn’t want to risk any damage to the nerves and so, only did very little.
While we waited for Emmie to finish up in recovery so we could get settled in PICU (where we were told we would go), we grabbed a bite to eat. As we were settling in, to eat we got a call from Recovery. Emmie was doing so well in recovery, Dr. C saw no need for her to be monitored so closely and would be going to a regular room.
We quickly finished eating and headed to her room as fast as we could.
She had been crying and was sobbing when they brought her in. I’m pretty certain that was Dr. C’s first clue that she didn’t need extra monitoring. As soon as they got in the room, she saw me and started crying. They asked me if she would calm down if I held her….um, yeah.
And mommy’s heart was full.
After getting settled in. Emmie was able to nurse and get some undisturbed sleep.
And when supper rolled around, she perked up and stole our fries.
The other neurosurgeon who was also in surgery popped in and said he wouldn’t be surprised if Dr. C would let Emmie go home the next day. What?! We were first told 3 to 4 days. Then two to three and now we were looking at leaving in about 24 hours. Ah, we were excited but cautiously so. We knew things could change and a lot needed to happen before we could go home.
Also, the day of surgery brought a new brace. She had broken the second brace (the first was broken after four weeks…the second only took a week of Super Emmie before breaking). Dr. C was gracious and didn’t make her wear it right away though.
She had morphine at 2 the day of surgery but after that it was all ibuprofen for pain management and she was tolerating foods so well.
At some point during the afternoon, while I was holding her, I felt a warm spot on my stomach. Her catheter had come loose and her diaper leaked a bit on me. Another step towards going home.
While Mark and I didn’t sleep well as we rocked her and kept our eyes on the monitors, she was relatively comfortable through the night and able to sleep some.
The next morning brought a very happy and very alert Emmie.
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.
(FYI, the right side of her face is a bit swollen but one of the neurosurgeons told us that that can sometimes happen and should be gone in a week or two).
She was so happy to be home and rewarded us with this (36 hours after surgery):
This girl. She is a fighter. A super hero. And she continues to amaze us every day!
God has blessed us with one amazing little girl. We praise Him for her quick recovery and her fighting spirit.
From what we’ve been told the rest of the kids fared well! We had some amazing volunteers who willingly gave their time and watched our kids or cooked meals for them (and us). We received such amazing blessings of gift cards and snacks to prep us for this time! It was such a blessing and warmed our hearts to know others were thinking of us and willing to help. Now, when we are home, those blessings are continuing and making it so much easier to relax and enjoy my family and focus on Emmie’s care. Thank you so much to everyone!
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!
February Randoms
Here’s an eye-ful of February for all of ya’ll!
Warrior Josiah putting on his war paint.
Eek! Those smiles!
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!
Zoe made cinnamon rolls for when we hosted our friends, The Rensburgs from South Africa. The hosting was fun. The rolls were awesome!
Ace. Yeah.
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.
Bryant thought he’d try out a mohawk.
This is what 20 pounds of green beans looks like. I can safely say that we have enough green beans put up for the rest of the year.
The Sitters
Papa and Grandmere graciously offered to watch the kids while Mark and I were at Emmie’s appointment and our quick getaway.
Of course, the kids were ecstatic.
Emmie managed to get quite a bit of cuddles and loving from them too!
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.
No Words
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.
Three Ring Circus
Well, actually, only one. In January, we happened to be at the library when a friend walked in and said she was there to pick up their free circus passes. Free? We like free. I moseyed up to the desk to find out what the free was about. If the kids read a certain number of books, we would mark it and take it back to the library to get it certified and then we could get free tickets to the circus. But only three per paying adult. That works for me. Especially since Emmie was free and we had Ceili Rain’s free baby ticket. For the price of two adults, we got ten people in to the circus. The kids were so thrilled!
We made sure to head there early for the pre-show activities on the floor. However, only Zoe was brave enough to check out what was going on.
She got to try on cute costumes.
And meet several guys from King Charles Troup.
And tight walk. The rest of the crew really missed out but Zoe had such a delightful time! She’s teetering on the edge of trying to do adult things and still enjoy little kid things. Her eyes lit up the whole time and it’s safe to say that the little kid things won out this time!
The excitement of the circus overwhelmed Malachi to exhaustion.
