Thursday, June 25, 2015

A "Good News, Bad News" Kind of Day

Heading back.

The orthopedic surgeon came in and told us that the ER doctor and nurse practitioner were wrong.  Her hip IS out of its socket and all her bone is there but her round part of the hip is not smooth like a normal hip.  He said that there is nothing that his department can do at this point.  This is a problem that started years ago and could have been a non issue today. Neurology should have been on top of her spacisity which he says is the cause.  I told him that is all the years we have been going to neurology (twice a year for 13 years), NO ONE has never said the word spacisity. He immediately gets concerned.  We ask a few more questions.  Basically, it needs to be treated with 2 Alieve twice a day and therapy.  He leaves the room and a nurse walks in and says she is with neurology.  Her name is Bonnie.  Bonnie says that Dr. Mooney (Orthopedic surgeon) is really upset with neurology and wants her seen today.  Apparently someone has dropped the ball.

We meet the neurologist, Dr. Kingsman (came from John Hopkins University) and he is visibly upset. There must have been a quarrel in the hallway.  Pointing fingers.  I guess neurology and orthopedics  are supposed to go hand in hand.  He examines her and says that she needs to have her pain managed before any therapy.  No one can even touch her at this point.  He prescribed Valium for at night along with other medicines.  He wanted to admit her to get her pain under control, but with Obama coming into town tomorrow, it might be crazy.  I said we would try to manage her pain from home for now but if we couldn't, we would come down and be admitted.

Having seizures isn't helping either.  We have to get her on stronger meds that will give her ZERO seizures.

Lizzy has cerebral palsy and that, unfortunately, comes with spine and hip problems that she will have to deal with.  I would give anything to have my "normal" Lizzy back.  I miss her.

I was relieved but anxious thinking surgery was an option.  It was a fix to the problem.  We are driving back with her hip still out of joint, she is still in pain, and I am not sure how I feel.  We saw to physicians that are at the top of their field and I am blessed and thankful for that.

I am so thankful for your support.  Having encouraging notes, texts, emails, phone calls, and messages have helped us.  We have been put on many prayer chains and I know how many of you have been praying.  We are thankful for modern medicine.  We are thankful for a neurologist that spent almost an hour with us today without having an appointment.  We are thankful today that we still have our Lizzy.  She will laugh and smile again. That is my prayer.

Tuesday, June 23, 2015

How We Got Here Today

Disney World was just a glimpse of what this week was going to be like.  I would give anything to go back and have the Lizzy from a week ago. These last few days have been so difficult and I would not wish them on anyone.  I've been in a panic since Saturday.  My sister posted my text but that was two days after our frightening ER visit.  Yes, I sat for two days without telling barely anyone.

Damon and Emily left for FUGE camp with our church youth group Thursday morning. Lizzy had spent the night with nana and papa because I had to work that day.  She came home later that day and we had no problems.  She went to bed as she does every night.

I decided that on Friday I wouldn't give her any pain medicine.  I wanted to see where she was with her hip issue.  We had an uneventful day with no issues.  I could never prepare for what was to happen the next day.

Lizzy woke up as normal and ate her breakfast with her daily meds.  She takes two anti seizure meds and a birth control pill everyday. She started getting fussy by mid day, which I just assumed was her being tired.  When she woke up is when I started getting concerned.  I decided to take her into the pool with us.  Jack was in the pool already and I knew I only had a few minutes before he got out.  Hates to be by himself.  He is such a social kid.  So I put her Lizzy in her swimming suit and said "let's go girl." She cried out in pain in such way that immediately brought me to my knees.  I looked her over in a panic.  Maybe her foot was asleep.  She was crying so much that the tears were just streaming down her face.  I said to her, "hey, mom will go get your stroller and we will get to the pool that way." Lifting her left her legs and feet dangling and the weight of them was hurting her.  I got her in her stroller and rolled her down the ramp to the pool.  I lifted all 85 pounds of her and got her in the pool.  The water was so warm so I knew it would help.  It didn't.  I never want to go back to that day, the pain in my daughter's eyes was so heartbreaking.  She was looking right into my eyes.  I got her out, put a diaper on her the best I could, and threw a t-shirt on her.  I did this very quickly.  I'm not sure why, I had no plan.  I was panicked.  I texted my friend, DeDe, who is a nurse and also our family friend, Brandi, who's mom is a also a nurse.  They told me to take her to the ER.  NOW I have a plan.  By this time her knees are pulled up to her head and screams out if I try to straighten them.

We get to the ER and check in.  She is quiet and content if no one is messing with her.  We get called back into a room and I explain that Lizzy is non verbal and blind.  I also state that wherever she goes, I go and there are no exceptions.  We go through medical history, current medicines, reason for the visit, when it started, any recent falls or trauma, etc.  She asks for a height and weight, knowing she wasn't able to get accurate numbers at that time.  I tell her that I also noticed that Lizzy had black chunks in her stool the night before and she said she would give her a rectal exam.  Oh joy......sorry I opened my mouth Liz.

We sit for a bit. Playing songs on my phone or singing to her.  Talking about what is happening.

A nurse practitioner comes in and asks to examine her.  Sure, have at it but don't try to straight........ok so you're going straight for the pulling of the leg.  Lizzy just screamed and she let go.  She poked a bit at her hip and then asked if we could get her to try and walk.  I said "yes, lets!" Ever taken your kid to the doctor telling them they are sick and you get there and they act fine?  Lizzy walked (with assistance and some resistance) and even hopped once.  I felt like a big fat liar.  We put her back on the bed and she said she needs x-rays.  She felt something in the hip and it concerned her.  

We waited for a bit and finally got in for the x-rays.  One thing I want to say here is even though I am not an expert on much, nor have I had any medical training at all, they asked for my opinion at every turn. When I walk into a situation that pertains to Lizzy, I give off a "she's mine and I am an expert on her. I have had extensive training and education in MY field." I have been training for 15 years.  My training is unique.  I know my child.  And to be honest, they want to know about her too, so I am very open and willing to offer any information they need.  I use the same advice that I give my children.  In life, you be nice until you can no longer be nice.  Everyone has a line they need to draw in the sand.  I remember taking Lizzy to the ER once and they wanted to do a spinal tap on her to test for meningitis.  Damon says what will you do if she has it?  Is the medicine harmful?  Let's do this, treat her as if she has it and skip the test.  The ER doctor said ok.  Not every test is necessary.  Lizzy had been through so much that day that we were done with tests.  We said no and they said ok! 

Back to the x-rays.  One of the worst experiences of my life.  I was praying she would just pass out from the pain because it was so painful.  A woman got down to hold her legs and I said, "I will hold her legs."  I could be somewhat gentle with her little leg.  When they were done,  I sang to her some more.  Then they asked me a question that made me feel just awful.

"How long did you say this hip thing started happening?"  It's worse than I thought.  Darn.  One of the techs walk me down and says it looks dislocated.  I cannot imagine being forced to stand on a dislocated hip.  Oh. My. Gosh.  

After her recital exam, they found no blood in her stool.  Praise God for that.  They did find a little something about her hip. She started by saying that the hip looks like it was never really formed but her other theory was that it is deteriorating.  Being on all different seizure meds for all these years have created brittle bones.  She has osteoporosis.  She was diagnosed with that about five years ago. So her hip continues to slip out of the socket and if not taken care of will become dislocated.  She says you need to get an MRI and see an orthopedist.  We are given a pain script and a recommendation for a orthopedist.  

On the way home she cries because the pain is so bad.  I have to physically take the script to the pharmacy because it is a narcotic.  I get her some and she is shaking from the pain.  I feed her and give her all her meds.  She tosses and turns most of the night.  

The next day is worse with pain and I am in tears all day. I can't get on top of the pain.  The prescription pain meds aren't working.  The nurse said that I could add ibuprofen with it.  I pace all day and try to comfort her.  It is time for bed so I feed her oatmeal with her meds and she throws it all up.  I mean she is face down in it throwing up.  I lift her up and off her bed and I just cry out.  I am so angry with you God.  Help me. Now would be a great time to show me you are here.  I strip her bed and take them outside and hose them off.  Then put them into the washer.  Lizzy is still sitting on the floor waiting for me.

I clean her up and put a beach towel on her bed before putting clean sheets on it.  I lay her on her bed and she lays her head down on her pillow.  She is exhausted. She has no medicine in her body now.  I decide to wait a couple hours and see what happens.  She is still up and I feed her some medicine with a Tylenol pm.  It stays down and she is finally asleep at 11:30.  

I wake up Monday morning feeling completely helpless.  I need people to pray for us and I desperately start texting family and friends.  Her pain is worse Monday and I feel out of control.  I call her doctor that calls a pediatric orthopedic surgeon and sets up an appointment for us for Thursday.  My only thought is that I need to get her pain managed until then.  I have got to get a good combination of meds and timing right today!  

I hate that I didn't ask for prayers immediately.  Lizzy has many followers and are concerned for her.  I am sorry but I need your prayers tonight, tomorrow, and for the rest of her days.  I have no idea what her future holds.  Surgery frightens me just because she has never had it.  

Today is Tuesday and I have been able to get her pain managed.  She still winces when she is moved or is being changed but she is no longer is constant pain.  I am so thankful for your prayers.  I am also thankful my husband is home.  I tend to not panic or spiral when he is here.  

She doesn't move from her room.  I feed her there on the floor.  

I will keep you all in the loop with what will happen next.  

God bless.


Tuesday, June 16, 2015

Our Ten-Day Disney Trip (With Lizzy) In The RV - Days Eight, Nine, and Ten

Day Eight

We went to the pool early this morning.  It was great.  There was barely anyone there. Lizzy has to be held the entire time so Damon and I take turns.  I sing to her and she squeals, which draws attention and stares. One kid came up to me and asked, “Are you attached to her?”  Ha ha, that was a funny one.  I have said it before; I really don’t mind people staring.  It doesn’t bother me.  I do notice A LOT more of it when I am wearing sunglasses.  We spent about an hour or so at the pool and then walked back.  It was so crowded when we left.  It was about 11:30 when we got back.  I fed Lizzy some mashed potatoes and veggies and she fell asleep for her nap around 12:15.  Jack and I went up to the Outpost to get our golf cart.  Very simple process.  We got it for two days and we will wear the heck out of that thing.

Lizzy slept until 3:30!  We went riding for about two hours. We played for a bit and had dinner.  Went for another ride and she went to bed…well, not really.  It’s 10:59 and she is still up. 

Day Nine

Lizzy did not sleep very much last night.  I am not sure why, but I was so frustrated. She does this back and forth swishing with her chin on her pillow and it is loud.  Sometimes she does it so much her chin will bleed. I made her wait until it was light out before getting up.  So that is around 5:30!!! 

She is yawning by 7:00.  We do about an hour of golf cart riding before I notice that the battery is just about dead.  We head back to the camper and plug it in.  Lizzy eats and plays for a bit and then WE lay down for a power nap. 

We wake up and head back out on the golf cart.  The battery light is blinking at me so we head up to the front.  I can’t have Lizzy’s main source of entertainment be unreliable.  They give me a newer cart and we are back in business.  Damon and the kids come back from Animal Kingdom and act like they are starving.  Remember the snack bag?  I packed it and it was loaded.  It is now empty…and they are famished!! 

Lizzy went down great tonight.  I lay down with her for a bit every night.  She likes that and is super snuggly with me.  I feel like that is when we “talk” about our day.  It is difficult having a child that can’t communicate.  When you have a child that is crying in pain but can’t tell you or show you where that pain is, it’s heartbreaking.  We have all been there with a baby.  Lizzy is our baby.

She is sound asleep, so we head to the pool just up the street.  Our last night here.  I have cleaned up and prepared the camper for tomorrow. 

We are officially out of drinks.  We brought a case of water (40), a case of green tea (30), and a case of Gatorade (24). I go to the market and get a 2-liter of soda for $4.99!!!! That’s Disneyworld:-)

Tomorrow should be fun.  Remember on the way down?  No power. No power means no air condition. I saw that tomorrow is to be one of the hottest days of the year. Should be a great ride back home, can’t wait.

Day Ten

Damon said last night that he wanted to leave around 5 am.  I was like, Lizzy isn’t up that early and in order for us to pull in the slides, she has to be up.  She sleeps on the floor.  So, we decided that she would be up early enough so we will just wait for her.  The one day we want that child to wake up early, she doesn’t.  We end up leaving around 7:30.  Just in time for the Orlando morning commute. Unbelievable! 

Damon unplugs that camper and we have power!!!!! For about 10 minutes and then the generator stops working.  What the heck!!!!! I am over this dang camper. It takes us about 10 hours to get home.  Lizzy had two seizures from overheating.  She was so hot we had to strip her down to her sports bra and diaper.  We make it home around 5:30.  We give Lizzy a bath, feed her, and she goes right to bed. 

Damon did a wonderful job driving the camper.  He used to drive buses for athletic games so he knows how to handle the bigger vehicles.  Thanks babe for getting us there and back home safely. I love you. You took Em and Jack all day to the parks and gave them the best memories. You lifted and carried Lizzy so much this week and I know that your back was hurting.  I love you for trying your hardest to keep her going.  You really are a wonderful father and husband.  

 See how warm she was?  Her little face was as red as a beet.  Moved her up to the front with us.

She loves the bouncing in the back of the camper but she cooled off quickly up front. Jack...still warm.  

At this point, I want to get into bed and go to sleep.  So I do!!!

We have talked about a 6-week trip around the country next summer.  Yes, you heard that correct.  We are still talking about it.  I could barely make it 10 days! 

Thank you for joining us on this trip by reading and supporting us with your prayers, encouraging emails, texts, phone calls, and comments.  We are so blessed to have all of you supporting us. God bless each of you.


Friday, June 12, 2015

Our Ten-Day Disney Trip (With Lizzy) In The RV - Day Seven

I am so thankful for your prayers.  I woke up after 5 hours feeling great.  Lizzy woke up WITHOUT a barnyard smelling, room clearing diaper.  What a great morning.  We decided that Lizzy is done with the parks.  She did most of the shows and is happier going for a walk or playing with her toys. When we were in the park, we had to stop and wait for people to move and it would make her upset.  She likes to go and we can do that at the campground. I went to the Outpost (the office up front where you check in/out), and explained our situation. Lizzy used 4 out of the 7 days on her park hopper pass.  We will get a $31.00 credit.  Gosh….thanks!

We reserved a golf cart for the next two days. I can’t believe how expensive they are.  They were sold out today. The campground covers 700 acres so you kind of need one to get to the pool, the trading post (market), tennis courts, and other places unless you bring a bicycle. There are buses running but it is more fun with a golf cart. Plus Lizzy loves it so that $62.00 a day is worth it.  The rental fee went up $2.00 from last year. It is outrageous, I know.  Our next purchase will be a golf cart. We would like a used one if possible, so if you have one you want to sell, we are looking for one.

We went for two walks today and talked to the squirrels.  I did some laundry.  Not a real exciting day but it was without a schedule and slow moving.  Just the way I like it with Lizzy.  Lizzy did poop the couch.  It wouldn’t be close to a normal day without something like that happening.

I was sitting at the table and watched Damon pick up my phone and read something.  Turns out, he was reading the blog.  I asked him if he were to write about the experience over the last few days, would he have a different view of it all.  Jokingly (I hope), he says, “Yeah, Lisa snapped!” We laughed. It took some years, but I can laugh at myself. That was funny babe!  

We really just want Lizzy to be a part of all family experiences. We are still learning how to do it.  Will Lizzy remember these times? I don’t know and I don’t care because we all remember her with us.  The memories won’t all be the greatest but at least we have them with her. 

I have no pics from today.  Unbelievable, that never happens. 

God bless!

Thursday, June 11, 2015

Our Ten-Day Disney Trip (With Lizzy) In The RV - Days Five and Six

Day Five

We are half way through this vacation and I could go home today and be happy.  I really don’t like waking up to the smell of a dirty diaper. It doesn’t start the day well.  Lizzy sleeps on a mattress on the floor of our room in the camper.  She sleeps very well so I shouldn’t complain but it is absolutely disgusting to wake up this way.   Everyone else knows that this is my job so they get to sleep in and it is bothering me at this point in our vacation.  Unfortunately, this is how I wake up while staying in the camper.  She stinks up the ENTIRE camper and it eventually wakes up the rest of the family.

She eats her breakfast and we get going.  Damon is already starting on Em and that she woke up last and is making us all late to the park.  It is getting on my nerves and I am already irritated.  A gentleman is sitting across from us making small talk and says something about getting to the park and Damon says something about Em getting up late (Animal Kingdom opens at 8 and we get there at 8:20) and bless this guys heart, he says to Damon, “It’s alright man.”  Thank you, sir!

Damon took Jack to get some fast passes and I went through the bag checking line.  He sends me a text to have Em run to Everest to ride with them.  Lizzy and I go to the Lion King show and she loves it. We are sitting in one of the handicap spots so we are in front.  I notice one of the female dancers paying special attention to us.  Turns out, she asks to be a part of the show.  I did take a video (will post to Facebook) and I immediately noticed that this sweet lady wipes Lizzy’s drool with her bib. Just like I do.  It made me feel all warm and fuzzy inside. Just like last year with Chip and Dale, she made this whole experience special.  As we get up to leave, a young lady sits next to me as says, “I took some pictures for you, can I send them to you?”  How sweet.  I didn’t know her but I know that she has a very sweet soul.  Thank you. 

 We leave there and go to find Damon and the kids.  We meet up and the kids are so happy to see…the snack bag!!!!  This bags carries about 30 snacks packs and drinks (Gardetto’s, Rice Krispie treats, goldfish, combos, Chex mix, peanuts, sour patch kids, Gatorades, waters, and Lipton Tea’s). It is a very heavy bag in the morning and lightens up around noon!

"The Bag"

We do the safari again and Lizzy enjoys it…. again.  It is the last thing we do before coming back to the campground.  Lizzy and I didn’t do a lot today.  I am getting worn out and need a nap.  We get back and eat lunch and we all lay down.

Damon takes Lizzy and Jack to the pool and I get all her food ready with medicine. Em and I head to Hollywood Studios for a couple of hours.  I really need a break.  A break from Lizzy and from Damon’s schedule. We had a great time.  Emily is really a great girl and I love spending time with just her.   I really don’t get a lot of time with her and I feel bad about it.  I try to squeeze time in when I can.  It was raining but it didn’t dampen our fun.  She rides all the fun rides alone.  I can barely handle the swing set in the backyard.  I used to be able to but since the kids came along, I get light headed and nauseous. Damon is her Disney partner and has always been.  I’m okay with that.

Damon says Lizzy ate and went down great.  We are still carrying her and using her stroller. We are trying to keep her from weight bearing on that hip. I know that if she sits for a while, her legs and feet fall asleep. That happens quite a bit.  I try to massage her thighs and legs but it tickles.  Thank you for your prayers.  See you tomorrow.

Day Six

For crying out loud, Lizzy!!!!  Up early for an UNPRECEDENTED dirty diaper. You know, the kind where you have to use half a pack of wipes?  I am going to have to clean all her linens. Great.  Blech. 

Three days to go.  We leave on the 15th. Who the heck added more days this year? I’m ready.  Damon and Jack leave for Magic Kingdom around 7:45.  Em, Lizzy, and I leave around 8:30.  We take the boat over and I am just amazed at what I see when we get off the boat.  Does Disney have a maximum capacity at these parks?  My anxiety level just goes through the roof.  I tell Em to go to her first ride and I will meet her there. She runs to spaceship earth and I take my time getting there.  I stop and ask a family if they want me to take a photo, you know, I am lollygagging because I know she will have to wait to ride and because there are so many doublewide strollers that you can barely move through the park.  It’s a little frustrating. 

We all meet up and I do a few rides with the kids and then I get this text from Damon to meet him up in front of park to take the monorail.  He is so frustrated and says that he was watching the parade with Lizzy and people just walk up and stand in front of them.  They completely block them from seeing the parade so he just leaves.  If they didn’t reach maximum capacity today, they came very close. 

So we head to Epcot and it feels wonderful to not bump into people or trip on a stroller wheel.  Em, Jack and I ride spaceship earth.  It is a great educational ride.  We go to meet Damon at Nemo and I start to feel light headed and dizzy.  I instantly get a headache too. I rarely get headaches.  I ask Em to hold my hand and we get to the Nemo ride. After that, we head back because I’m not feeling well. 

Lunch, nap, same thing as every other day we have been here.  We plan to head to the pool and swim for a bit. Lizzy’s swimming suit was in the shower but was on the floor and so it was still wet.  I became immediately mad.  Yes, mad. Why can’t we hang it up so it dries?  I have to put Lizzy in one of Em’s two pieces and I can’t stand it.  We walk the 15 minutes it takes to get to the pool and swim for a bit.  I tell Damon, Lizzy can’t wear a wet suit and take a 15-minute walk because she will be cold.  He says, “Mine was wet.” Really?  Damon and Jack to back to Magic Kingdom for a few hours.  Lizzy eats great and goes to bed.

I know that these last two days have a different tone to it.  Everything is irritating me.  I really am ready to go home.  I have been calling it a vacation but it really isn’t.  There is no real relaxing and I am doing everything in a smaller space that I do at home.  Pray for me.  I need a better attitude for these next four days.  Still have memories to make.


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