June Randoms

Here is a feast for the eyes of our June and kids…DSC_1808 My reminder that they can get along.  At least when a camera is out.DSC_1830 Bags were the theme for this little lady.  She had a bag at every waking moment…and a few sleeping ones too.DSC_1835 DSC_1850 Y the brave is home…and it’s back to running around everywhere.IMG_20150605_165056_095 We were blessed with a load of curriculum from a graduated homeschool mom.  She wanted to bless a family that could use it to raise money.  This was our curriculum and hers combined.  With what I sold at our local used book sale and what I sold online, I made a good dent in our curriculum budget.IMG_20150607_105451_121 Sweet Emmie hugs.  If you had to have me name the number one negative thing about the halo it is not getting these.  We still get cuddles but they are nothing like this now.  Definitely something to look forward to next Spring.IMG_20150607_180446709Zoe met a storm trooper.
IMG_20150608_200534_279 More cuddles.  More bags.IMG_20150610_192537_430 And more  bags.IMG_20150610_193148_315 Did we mention she went through a bag phase?IMG_20150612_165918212 Ah, no bags…Water!  Another favorite.IMG_20150613_122440_494 And chocolate.IMG_20150613_122450_356 Chocolate is good.IMG_20150616_214413_582 With a couple of weeks before her new brace was complete, we had to go to desperate measures and try to mend some parts that were tearing (fyi, it didn’t work).IMG_20150617_140732_285 Snuggles.  Ah.  I loves them.IMG_20150618_164851_305 And Cindy Lou Who.IMG_20150619_131225_673 Learning to dip.IMG_20150620_182651_314More chocolate.IMG_20150626_085000_527 IMG_20150626_091223785

Learning to climb stairs.

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Enjoying some splash pad fun.

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Halo Procedure: the Summary

I’m still trying to process this month.  The whole entire month.  I have spent more days away from home this month than I have at home.

I know I have been absent but there has been a lot going on and several things that I probably won’t share for quite awhile.

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Waiting on the versed. That medicine is awesome in soothing her and giving us a few laughs before we had to say “see you soon.”

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I am learning the fine art of glove balloons. They worked this trip!

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Ah, versed! Emmie was relaxed and had to show her grandparents and daddy her belly button.

Emmie went in on August 13th for her halo procedure.  Surgery went smoothly with no complications.  After she went to recovery, they sent her to PICU.  She had to go there because of the sedation meds they kept her on while she was in traction.  We were told to go to PICU waiting room and that we could see her once she was ready.  Mark said we waited ten minutes but it felt like an eternity because we could hear her crying (okay, screaming) while they were getting her settled in.  The charge nurse came out to reassure us and let us know we could cuddle with her in bed.  That soothed my worries about not being able to hold her for three to four days (which actually turned in to more than that).

Once we got to see her, I climbed in to bed with her and grabbed her hands.  She calmed down immediately.  And that’s where Mark or I stayed for the next six days.

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Traction days were long and hard.  I had her during the day and Mark stayed with her at night.  That way, we were able to also divide up time with the other kids.  The time in the hospital was mainly spent soothing her, finding things to entertain her, and scooting her down the bed.

She was on sedation and pain meds.  The sedation meds were mainly to keep her calm not put her to sleep.  The pain meds helped tremendously when she would get another weight (five pounds in the end) added to her traction.

Whenever she was awake, we would get about ten minutes before we would have to call a nurse to hold the weights as we scooted her down the bed.  The weight from the traction and her wiggly self always seemed to find a way to the top of the bed.

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Before ipad contraption…she made do with our Kindle Fire.

By the second day, the nurses and I had decided that the white ceiling was not entertaining enough for a child who was stuck on her back.  We quickly dug through my hospital bag and grabbed the gel clings I had.  While the nurses spotted me, I stuck them up on the light over her bed.  That helped a bit.  By day four, my arms were sore from holding up the Kindle Fire we had brought.  Child Life Specialists came to the rescue with an iPad on a stand that flipped down for her viewing.  That thing saved all of us and for once, I cared not about how much screen time my kid was getting.  We passed the rest of the time with puppet shows, stuffed animal kisses, and bubbles.  If you’re really curious, Emmie’s go to videos on the iPad were videos about dogs with music included.  I think we watched ten hours of 20 Dog Breeds.

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She couldn’t eat while in traction because of the meds and her position but she got lipids and tpn that helped fill in empty calories.

Her PICC line was not successful in going in which meant daily blood draws were done quite painfully and often with two sticks before a good draw was done.

Our most memorable events included the iv.  Her PICC iv was actually used as a peripheral iv.  That just means that it was only used for meds.  It was basically a deep line iv.  I think on Saturday (days ran together), the iv connections snapped.  This was outside her body and caused her no health issues, but it did wake me up and cause a major mess.  Meds leaked all over her and the hospital bed.  It’s not particularly easy to change the sheets of a baby who has three pounds of weight attached to her head.  Our nurses worked for about thirty minutes to figure out exactly what needed to be done.   It took four nurses and me to get the sheets changed.  We also had a bit of help from the valium.  The nurses wanted her to be as comfortable as possible so she got a tad bit of valium to calm her while she was suspended above the bed.  One nurse held the weights.  One held Emmie’s head while another held her body.  That left two of us to quickly take the sheets off the bed and put new ones on.  Teamwork.  Important.

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Totally chilling. She loved crossing her legs and just relaxing.

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Snuggled time with a doggy that made it’s way in to our room.

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She made sure I didn’t go anywhere after Mark went back with the kids.

The other most heartbreaking and painful thing included her iv in her foot.  She had two ivs the PIV and then a standard one.  This helped her get all of her meds and calories from the tpn and lipids.  She started out with the regular iv in her arm but that one came out on Saturday.  So, they had to place one in her foot.  That iv was for her pain and sedation meds.  It worked great.  Until Monday.  As our nurse was finishing up her vitals and heading out, she happened to look at her iv site.  She had already checked it when she came in.  But, thankfully, she looked at it before leaving.  Emmie’s ankle was red, angry looking, swollen.  The iv had come out of her vein.  And gone in to her muscle.  That meant the sedation meds which were on a continuous drip, had gotten in to her muscles.  This could, potentially, cause a pretty serious infection.  Thankfully, after a lot of calls to the pharmacist and doctor, it was determined her sedation meds could also be given intramuscular.  We stopped worrying about a muscular infection, but, unfortunately, her ankle was deeply bruised and sore.  A week later, and she is finally not flinching and screaming when we barely touch it.  I think seeing her poor foot swollen and so hot to the touch was harder than the vest.  By the time this had happened, we knew the halo wasn’t hurting.  We were so grateful, though, for a very attentive nurse.

Emmie did great getting her halo on that Thursday afternoon.  She laughed, smiled, and pinched noses through the whole thing.  There were lots of loud noises and things going on that she couldn’t see.  We were so proud of how brave she was being.  She was helped a long quite a bit by a little bit of ativan.  It definitely calmed her nerves.  After the vest got on, we were working our way out of the PICU and down to a regular room and then out the doors to home.

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Super Sidekick R rocked it getting the brace on. I think we caught Emmie in a blink.

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Almost ready for Mama’s arms.

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A day later and just relaxing with the Graham. Cracker that is.

Nothing made our girl light up like watching her brothers and sisters on skype.  She truly loves her sidekicks and the feeling was definitely mutual.

I’ll share a bit more on her hospitalization over the next few days…what the plan is now, and a few pictures and thoughts on the whole thing.

 

 

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How We Worship

DSC_1266Mark tries to use our family worship time as a time to not only teach from the Bible but also to train them how to act during worship.  He occasionally reads  Bible events from the children’s Bibles to help the younger ones understand it more.  Lately,  he has been using The Rhyme Bible to teach from.  As we get to familiar stories, the kids have decided that they need to act them out.  Before our eyes, we get to witness Esther, David and Goliath, Joshua and the walls of Jericho, etc.  I love their enthusiasm to show us what they remember about those events.

 

 

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Zoo Fun

I wanted to take the kids to the zoo one day before school officially was released.  I thought it wouldn’t be crowded.  I was wrong.  But we had fun as always.DSC_1539 My phone serves as their tourist camera.

DSC_1540 DSC_1543Snake petting.
DSC_1551 Watching fish.  This was a day I was eternally grateful for the Lillebaby carrier I invested in.  I knew we needed a carrier that she could face out in and be comfortable in after we got the brace.  This one just fit the bill.DSC_1558 DSC_1568 DSC_1613 DSC_1615 DSC_1617 Emmie fought the nap all day but finally gave up while the kids rode the train.DSC_1623 DSC_1626 Ceili Rain decided she could climb the rock wall.  She did very well.DSC_1629Malachi’s choice of seating on the merry-go-round.

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More Running…

Like of the real kind…Liam doesn’t really enjoy running but he’s fast.  Well, he’s fast short distances.  I decided in May that he should try a practice with our local cross country team.  He liked it okay, but his endurance was lacking and hard for him.  If or when I have time, I want to work with him on building that up and possibly trying again.  Running, is not my thing.  But, I can see a big potential for this to be a sport he can focus on and excel at.  We’ll see.

Anyway, while he was practicing, we decided to hang out and walk the trail they were running.  The canal and river were right around it and the kids asked to take pictures with my phone.  This is what they got…

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Grand Finale

We’ll close up Emmie’s birthday posts with some fun pictures we took a couple of weeks before her birthday.

With surgery looming, we knew we didn’t want to miss out on anything. For the first time, we decided to do a series of pictures for her first birthday.  The result…absolutely adorable.

DSC_1062 DSC_1066 DSC_1067 DSC_1072 DSC_1074 Of course, a few kids needed to photo bomb.DSC_1077 DSC_1080 DSC_1082 This was her first big cupcake.  And she devoured every single part of it!DSC_1086 DSC_1089 DSC_1097 DSC_1101 DSC_1115

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Running…

DSC_1054This is a marathon.  This neurofibromatosis journey.  I wish it was a quick fix and easy answer but unfortunately it’s not.  We are slowly coming to terms with the fact that there will be surgeries, MRIs, specialists in our future.  I’m pretty sure we’ll learn all of the roads in downtown Atlanta in a very short time.   We’ll know all the “good” nurses who can get the iv in on a first stick.  All of that.

It’s so easy in today’s society to expect a quick fix.  Easy answer.  When people find out she had surgery to remove “some” of her tumor they automatically assume that everything is good now.  She’s cured.  She’s healed.  Truth is, she’s not.  Genetic disorders just can’t go away with a surgery.  We know looking at the history of her plexiform and looking at the history of plexiforms in a broad scope, that it will grow.  Our prayer is that she grows faster than it but that is something we won’t know.

Sometimes I hate running this journey.  I get angry and frustrated and just want to hit something (wishing we could join a gym for that very purpose). Some days it’s a constant battle and constant reminder that I am not in control. I have to remind myself countless times that God is in control.  I know that He knows what Emmie needs. We know that nothing for our Super Em will happen without Him knowing about it first.  Yes, this is a marathon, but we are so grateful we are not running it alone.  Our God is in the lead and we have some pretty amazing people who are helping us take that next step.  And the next.  And the next.  When we grow weary there are others who are picking us up and running with us.

And sometimes, I don’t even realize we are running this race.  She is laughing and smiling and trying her best to talk.  She loves her cat and dogs with passion and is starting to explore away from me every day.  Then, we get her MRI report and the words are there.  Staring at me.  Taunting me and making sure to remind me that Emmie on the outside is a rockstar but inside, we are waiting and watching very closely.  Severe kyphosis and large plexiform neurofibroma.  A year ago we would have told you those were made up Dr. Seuss type words.  Today, we know better.  Yes, we focus on what a super girl Emmie is, but those words are always in the back of our minds and we know we are just waiting and watching to see.

We actually forget about the brace.  Like the time we were in the hardware store and the cashier asked Mark if there was an accident.  Mark, who was working on paying, was a bit embarrassed because Malachi had an “accident” and he thought the guy could smell it.  He just shrugged it off and said something about it happening sometimes.  He didn’t even think about Emmie in her brace.  Thankfully, we were able to recover and explain her brace!  It’s amazing how, now, that is just a part of Emmie.  It’s what makes her the super hero she is.

As an update, we are on hold for the clinical trial since the plexiform was stable after three months.  So, we’re praying we don’t see Dr. W (as outstanding as he is) until December. And that the plexiform does not cause any issues.

Emmie’s added another running partner.  I  admitted a need for help in getting her closer to independent walking and requested a referral.  She can cruise with the best of them.  She can also let go and walk a good distance.  But she’s missing just a few things.  She can’t stand up without using mama or daddy.  She can’t stand from sitting.  She can’t roll over in her brace (there are screws sticking out and it’s quite painful or her).  And I’m tired, ya’ll.  I needed someone to come along side of us and give us clear guidance on how to get Emmie to be as independent as can be.  So, she had a physical therapy evaluation with an awesome therapist and wonderful long-time family friend.  He did see areas where he could help her.  Help me.  He doesn’t think it will take her long to get going and neither do I.  We just need a little guidance and she needs a good kick in the pants boost in the right direction.

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Party On

We celebrated Emmie’s birthday a couple more times with Papa & Grandmere and then with Ge & Granddaddy.  DSC_1531 DSC_1533 DSC_1535 DSC_1536 Malachi was serving us “apples.”DSC_1537 Music and animals are her current loves.  Ge and Granddaddy found the perfect gift that fit both!DSC_1316 DSC_1323 DSC_1325 DSC_1331 DSC_1338 Books and Grandmere just go together.DSC_1350 Grandmere sweetly offered to help make a dress for Emmie.  We were looking for a few that she could wear over her brace and after sending a link, Grandmere came up with a beautiful one!DSC_1351 Emmie approved.

DSC_1356I know I have said multiple times but it is completely true.  This year would have been even harder had we not had these four people walking this road with us too.  They have prayed and cried and dropped everything to do what they could for us and their grandchildren.  I would not trade them for anything!

 

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Happy 1st Birthday, Emmie!

Emmie turned one in May!  We thought we had a rough first year with Bryant.  While Emmie’s first year has been full of a lot of shock and awe, we have been able to savor the beautiful moments.  The sweet first smiles and laughs.  The way she dives for me whenever we say “mama’s milk.”  Her resilience and goofiness and her love for animals.  Yes.  It’s been hard.  But it makes her normal babyhood moments just as beautiful.

To celebrate, we knew we needed to invite her people.  Her sidekicks.  So, invite we did.  All told, we had about thirty people come over for ice cream and cake.  She enjoyed the people, a bit.  I think by the time cake time rolled around she was ready fro bed and didn’t want people staring at her enjoying her sugar fest.

We decided to give her the birthday gift from the family before the crowd came.  She was more than happy about that.

DSC_1357 Yes, animals are instant smile hits but splashing water also brings a smile.  A water table was just what she needed!DSC_1360 DSC_1364Bunnies seem to be Emmie’s animal.  She has her Babbit (Shel Silverstein’s Runny Babbit…Such a billy sook to read to your kids!) as her cuddly.  About halfway through her year, we found the book Audrey Bunny from a suggestion in our NF Moms group.  Once I found out what it was about, I ordered it really fast.  It’s a beautiful story about a little girl who chooses a stuffed bunny with spot on it.  She knows the bunny has the spot but the bunny doesn’t realize it and tries to hide it.  In the end, the rabbit realizes the girl loves her spot and all.  It is written by Angie Smith who walked a hard journey with her daughter Audrey Caroline.  As soon as I got the book in the mail, I read it.  In tear.  It is Emmie’s special book.

With all of that going for her, bunnies had to be the chosen theme.

DSC_1381Bunny rear cupcakes for our guests!

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Josiah requested strawberry cake with strawberry cream cheese icing.

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Present time!

DSC_1370I found a tutorial on Pinterest for a fondant bunny.  It was in another language.  Thankfully, there were lots of pictures and google translate almost helped.  I think I did an okay job on it.  I added an “Emmie” touch by putting pink polka dots on the bunny (with enough fondant to make a number 1).DSC_1377
DSC_1410 DSC_1424 DSC_1428 She thought the bunny was cute!DSC_1435 But preferred eating the marshmallow and gum drops to the actual smash cake.  Don’t worry, a few days later we pulled out the smash cake and devoured it!DSC_1437 DSC_1441 But birthday night, she thought it looked better in her hair.

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Just Down the Street

We have discovered a wonderful trail system just five minutes from our house.  It’s beautiful and has several different trails to walk and explore.  The kids enjoy climbing the low hanging trees and giant rocks.  It’s a fun after dinner trip and we headed over there in May.  The only complaints I have are the mosquitoes were vicious and we met a baby copperhead.  The mosquito attack was thwarted by our bug spray and the copperhead made sure he stuck to the side of the trail far from us.
DSC_1631 DSC_1634 DSC_1640 DSC_1654 DSC_1663 DSC_1665 Saving the day by retrieving the bug spray!DSC_1676 What’s this?!  A raging river?

DSC_1686 Nope.  Just a bunch of rocks over the creek.  Low enough to enjoy exploring.DSC_1688For the past several years, we haven’t take the dogs with us anywhere.  Mainly, because our goal is to not lose a kid.  But, the kids are older and they enjoy running with the dogs.  Ginger is our “nervous” dog and gets carsick so she can’t really go out much.  But Sunny, is always up for a ride.   Our Sunny girl loves to run with the kids and explore.  She will be 14 in November and doesn’t have a problem keeping up with even Malachi!

 

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