Friday, May 26, 2017



I know that if you read my Facebook post you are angry. If you're anything like me, the anger will deepen as days go on. I want to share with you everything. Starting from the day I met her teacher.


It was nearing the end of the school year in 2015 and we scheduled a transition meeting with her new teacher. Lizzy was going from the middle school to high school. I walked in and he stayed seated. Most of the time, the men in the room would stand and greet me. As we started the meeting, he took full control while I tried to jump in with concerns. We discussed everything we needed to from Lizzy's eating to her medicines. When we got to the aide, adult support staff, one on one, etc, I usually have the floor in discussing what type of person we would need for Lizzy. In fact, you may remember in my Facebook videos, there is one of a woman teaching Lizzy to say "mama". She was the one we wanted to be with Lizzy. She was at the school already and was willing to be with Lizzy. He cut me off and says "I have someone for Lizzy." And that was that. We ended with someone that I would have never put with Lizzy. I find out just this year that teachers are not able to pick aides. They are selected at the district level.


Lizzy was at this school only a year and a half. He started with the time outs immediately. It was always because she was too loud. He would take pictures and send them to me of her in a time out and it broke my heart. I repeatedly told him that Lizzy doesn't go to time outs at home and he said she needed them and it worked at school. He would tell me about time outs she would get on a field trip and he would tell her "you're going into time out when we get back to school." He would tell me that she would rub his arm to avoid going into time out. I would say she never does that at home...rubbing my arm. Are you cringing yet? I started to get that gut feeling.


Flashback. I remember when the other female student arrived. Lizzy had been the only one. In years actually. I let about two weeks pass and then sent this email January 30, 2016.


Good afternoon. I want to thank you for a smooth transition for Lizzy from the middle school into high school. I truly believe that Lizzy has enjoyed everyday she has been in Mr. XXXXX class. I appreciate that very much.

I was excited to hear about the new student in the classroom. Lizzy has a girlfriend she can look forward to spending time with each day. Mr. XXXXX tells me that they communicate with each other. I think that is just awesome.

I want it to be very clear that Courtney was hired for Elizabeth Viele. I understand what assistant student support staff is. However, Lizzy has several pieces of documentation stating that she needs someone with her and by her side every minute of the day. We have had meeting after meeting about it. There is a doctor’s letter in her file stating reasons for this. We have been in the district for a long time now and have fought for her to have this. If we had not pushed, the school district would never have given her one. That is just the way it is. We attend every meeting that is required of us and stay involved. Let me be very clear in that I have 100% confidence that Lizzy is well cared for and that Mr. XXXXX and his two additional support are competent in the classroom with the kids. I do not want to visit the classroom and see that Ms. Courtney is being used for the other female student. Her parents are responsible to fighting for her to get a support aide. That is not my responsibility.


If we need to meet and discuss this, I am available. If this is something that needs to be rectified, please do this very soon. As parents of Lizzy, we don’t tolerate issues like this. We are her advocate for EVERY area of her life. Her life is as important as your life is.


This issue has not been discussed with anyone until now.

Thank you,

Lisa Viele



Mr. XXXXX was very upset with me because the district (women) came into his classroom. He was angry with me for a while. I told him that it wasn't about you, and he didn't take that very well. The other girl in the class received an aide. Then there were two female aides!


Back to this year. Her teacher had to go out for heart surgery and would be absent from school for three months. Not a single time out was given to this class full of non verbal teenagers. It was amazing. This class did great with out this punishment. This IS a punishment for doing something wrong. So Lizzy is non verbal and expresses all emotions through squealing and grunts. He tried to take these kids voices away.


We would tell him to take Lizzy out of her chair for about 20 minutes of every hour. Her stroller is for transportation and isn't meant for sitting all day. He ignored that.


Damon was giving Lizzy a bath one night and noticed a fresh bruise (Lizzy bruises easily and has 10-15 mini bruises on her at all times) and asked me about it. So I texted her teacher and he didn't know. That isn't a big deal to me that he didn't know. But when he said he had been thinking about where it came from for two days, I was like, "really, it's fine." When I dropped her off the next day, I had Em with me. I get Lizzy out and he said to me "I figured out what happen to her back." He then says "When I lift her shirt off, her back bangs against the back of her stroller." I get in the van and say to Em, "why the heck is he taking her shirt off?"


Then March 21st happened. He thought it was so funny that he had to tell me.


"I took Lizzy to a room for time out today and she was really quiet and looking around."


I get home and tell Damon and I start getting angry. I email the assistant principal and meet with him the next morning. He is concerned and said he would call me after addressing this with her teacher. He calls me two hours later and says he met with him and took care of it.


We immediately start the process to transfer Lizzy to Damon's school. The next morning her teacher texts me "is Lizzy coming to school?" Damon says to just say no. I did. He then texts me "is she sick?" Damon says "he is fishing for information, don't respond."


The following email was sent March 24, 2017. I sent this email because when I called her high school, the principal had no idea anything had happened. I called asking for him to complete the waiver immediately.


My name is Lisa Viele and my daughter, Lizzy, is a student in Mr. XXXXX class at Socastee High School. Lizzy has a female paraprofessional whom I never see. I never speak with her about Lizzy. Mr. XXXXX uses time out with Lizzy because she is loud. Lizzy is non verbal and uses squeals and grunts for her communication. I have never agreed with him putting her in time out. He once sent me a photo of her in timeout and it made me very upset. Just this week he told me that he took Lizzy to a separate room for time out. What on earth did my child do to even have to be secluded from her paraprofessional and classmates. And an even bigger issue is why was he allowed to take her. Mr. XXXXX has been teaching for years. He knows what to do and what not to do. He took my non verbal, legally blind daughter into a room where it was just him and her. He even told me that she was looking around and being very quiet. This was Lizzy being scared. Mr. XXXXX thought it was funny. Further, why didn’t ANY of the female aides try to intervene and say “whoa, let me take her”. You have no one in that classroom that stood up for Lizzy and protected her. Since being there (2 years), I have noticed several times his aides leaving at 2:45-3:00. Where is Lizzy’s female aide then?? I am extremely rattled and upset by this. We have completed a waiver online for her to be transferred to SJHS effective MONDAY.


Dr. Browning asked for this issue to be in an email.


Lisa Viele





We received this email in return from the district office. (3/24/17)


Ms. Viele,


Thank you for sharing your concerns in this email. I have spoken to Mr. XXXX (AP). I will continue to be involved with Lizzy. I will be visiting SJHS on Monday. I know Ms. XXXXX is working with staff. I have made contacts with district leads.


Again, thank you for making me aware of your concerns.



The next day they had district people at Lizzy's new high school and in the classroom at her old high school. Someone, and I really do not know who, decided to bring THE OTHER female aide over with Lizzy and NOT her aide that has been with her for a year and a half. How weird. Something else, I didn't even know this aides name. No idea. Mr. XXXXX apparently didn't think it was important. So when I brought Lizzy for her first day and she walked up to us, we just looked at each other. She was telling me something with her eyes. I spoke first. "Hi, I am really sorry but I don't even know your first name". "Karen" she says. I said "apparently Mr. XXXXX didn't think that was something I needed to know". She looked at me again with her telling eyes. Lizzy knew her though. Karen bent down to talk to her and Lizzy hugged her and squealed with happiness.


I am going to tell you something that Karen told me. Yes, aides are not allowed to speak with parents. Blah! How cold. This district has created a very lonely environment for us parents. We can't connect with the ones that take care of our child for 8 hours a day. The person that feeds and changes Lizzy isn't allowed to give me information on anything. They muzzle them. Make them afraid of losing their jobs. The district has done a very good job of creating fear in these aides. We did have a meeting with district level staff about this a few weeks ago and finally addressed it.


Getting back to Karen. She was fired on day three. Lizzy started on Wednesday and Friday afternoon, I was greeted by the AP and the district person in charge of aides. Apparently Karen wouldn't change a male students diaper. She had just gotten there with Lizzy. Could she of had a few more days to settle in? Something didn't seem right. On Thursday, when Karen came to the van to get Lizzy for the day, I spoke with her. Candidly.


Karen: I don't get this district. I'm probably going to get fired.

Lisa: Why, because of your mouth? Haha"

Karen: Well yeah, that too. I am still good friends with my daughters aides from when she was in school. My daughter had an IEP and was in special education and I was so close to her aides.

Lisa: Do you know why we are here?

Karen: Yeah, the time out. I would watch him take her in there and think, he's gonna get in trouble. I told him when he came out "that's not cool" but he walked right by me and ignored me. He really never talked to Courtney and I. He really doesn't like women. Actually, I worry more about the boys than I do the girls.

Lisa: (trying to hold it together) We plan to open an investigation.

Karen: Good. I will tell the truth.


She took Lizzy in and I got in the van and immediately texted Damon. I always text or talk to Damon after something odd happens just so someone else knows.



We sent an email on March 27, 2017 to the assistant principal over special education at the high school.


Good evening. We wanted to follow up with you on the issue we had concerning our daughter, Elizabeth Viele. We wanted to touch base with you as soon as possible to discuss the outcome of the your investigation of Mr. XXXXX use of seclusion of Lizzy in class. We think that this is highly inappropriate and have begun to the process to move Lizzy to St. James High School starting this week. Please, respond at your earliest convenience, your “findings” related to the use of “timeout” or seclusion in Mr. XXXXX class. When did this take place? How long was she in there? What was the room like? Was anyone else involved? Where is this room? Are there windows in the room? Why was XXXXX, her paraprofessional, not involved? Can we see the room? Why was she put in this seclusion room? How many times has this taken place over the last year-and-a-half?


After speaking with other special education instructors the use of a “timeout” room is not protocol and we certainly never gave permission for her to be put in a “special” room to correct behavior or for any other reasons. We consider this a major problem and a violation of best teaching practices. Other teachers were surprised to find that a non-verbal and blind special needs girl would be put in a room with someone other than her female paraprofessional for any reason. This is certainly not part of her IEP or any other documentation. We would like to give you an opportunity to respond to these questions before taking any other steps in this situation.


Thank you for your time,

Damon and Lisa Viele



He responded the next day with his findings and we could meet. We met on a Friday afternoon. He took us to the seclusion room. It is located right after another teachers room and right before Lizzy's classroom. There is a window in the door. It is a room used for testing. He had generic answers. How long was she in there. All staff said 90 seconds. Why was she in there? She was too loud. We went through all of it and Damon looked at me and said "well?" I shook my head and started to raise my voice "is he stupid?, really, is he that stupid?" The AP just shook his head. I sad to Damon, "no, I'm not satisfied." He said ok and we left.


We sat on it for awhile. Maybe two weeks and then sent this on April 28.


We were made aware of an incident that happened with our daughter, Elizabeth Viele, on Tuesday, March 21, 2017. Her teacher, Mr. XXXXXX, put her into a time out where he took her into a seclusion room. This is and was a highly inappropriate and unprofessional behavior. Our daughter is blind and non-verbal. We went against our attorney’s counsel, which was to immediately contact the local sheriffs office and report the incident. Instead we asked for an investigation from Mr. XXXXXX , who is the VP at Socastee High School. While we appreciate his efforts, we came away unsatisfied with his findings. We are now requesting a district level investigation.


We want to be clear why we are asking for this investigation. Our 17-year-old blind, non-verbal handicapped daughter who is defenseless and not able to speak a word was wheeled into a room in her wheelchair with a man who thought she deserved a time out away from other people. We understand that the room has a window in it but that is irrelevant. Our daughter can’t speak or defend herself and it is up to her mom, her dad, to do just that and us. We feel that she was not in the best care when this happened. Mr. XXXXX has been putting her in time out since she arrived at Socastee High School a year and a half ago.


Mr. XXXXX never did what we asked him to. We told him that Lizzy was not to be in her chair all day, as her chair is just for transportation. He would let her lean over in her chair and fall asleep, leaving towel (for her drooling) mark impressions on her arms. When we would ask, he wouldn’t have an answer other than, “I don’t know.”


We are asking that Anthony, Courtney, and Karen (was terminated) be included in this investigation. We are asking for information on all things Elizabeth is addressed.


1) Her time outs. Why would she have a time out? How long did her time outs last? Where was she was for time outs (location)? Who was with her? Where is the documentation for the time outs? Where is the seclusion room located? Do many people walk by that seclusion room?

2) Field Trips. Where did she sit on the bus? Who sat with her or next to her? Who fed her? Who would change her? Who would be with Lizzy at the destination?

3) Her adult support. Courtney. Did Mr. XXXXX request her? (He refused to entertain an aide requested by Lizzy’s mom that had known Lizzy for years. She taught Lizzy to say momma.) When Mr. XXXXX brought in Lizzy in the morning, what role did she play? Did she feed Lizzy? Did she always change Lizzy? When she would leave early, did the other female aid take over? When both female aides left early, who would have Lizzy? Did you ever feel like Lizzy wasn’t safe? If not, why? Please give details. On most days, did you get Lizzy for arrival? If not, why? On most days, did you bring Lizzy out for dismissal? If not, why?

4) Aides in classroom. Did anyone other than females change Lizzy? When Lizzy was taken into a time out, did anyone question Mr. XXXXX about it? Why would you be allowed to leave so early? As early as 2:45. Did Lizzy receive any time outs during the time Mr. XXXXX was away due to his surgery? He was gone for sometime. Was there anything about Mr. XXXXX that bothered you when he was dealing with Lizzy? Do you have many people walking into and out of the classroom? Did you ever feel like Lizzy wasn’t safe? If not, why. Please give details. Mr. XXXXX behavior. Did you ever see Mr. XXXXX push Lizzy’s head (including “playful” pushing)? Did you ever see Mr. XXXXX pull Lizzy’s hair (including “playful” tugging) Any kind of behavior from him that made you feel uncomfortable about it? Mr. XXXXX would tell us that she would receive time outs on the bus during a field trip. He would say to Lizzy “you going into time out when we get back.” He would then tell me SHE would rub his arm to “get back into good graces” with him. Is this true? Would she rub his arm? Would you ever see Mr. XXXXX in a time out with Lizzy? What would he do while she was in the time out? Have you ever seen Mr. XXXXX with Lizzy in a seclusion time out? What did you see? Did you ever say anything to Mr. XXXXX about taking her into time out or into a seclusion time out? What did you say? What was his response?

We understand that this will take some time. We also understand that it is in your best interest not to find anything troubling. Once the investigation is complete and we have had some time to review it, we will contact you.


Damon and Lisa Viele



We then get an email about receiving the request. (5/1/17)

I call Ms. Wilson in charge of the investigation and leave a message with her administrative assistant. I also call the superintendent and leave a message with him as well. (5/24/17)


We receive the following email that night. (May, 24, 2017)


Dear Mr. and Mrs. Viele,

Horry County Schools is in receipt of your May 1, 2017 email correspondence requesting an investigation of your concerns regarding your daughter, Elizabeth Viele a student previously enrolled at Socastee High School. We have completed a thorough investigation, which included a review of documentation and interviews. Based on the information obtained during the investigation, we have determined there was no inappropriate use of “time-away” and/or “time-out” as a behavioral intervention. With regard to the additional items outlined in your correspondence, our investigation further concluded that no other inappropriate or unprofessional behavior occurred.


We trust this information will provide you with a response addressing your concerns. Should you have any questions, please feel free to contact us at 843-488-6808.


Sincerely,


Kristin A. Wilson
Executive Director, Federal Programs Horry County Schools





My thoughts go to Karen. Was she interviewed? If she was, there should be a different outcome here. But, she was fired so she doesn't owe the district anything. Karen really is the key to this investigation. The other aides still have their jobs and are still in the classroom with him still.


We did go to the Sherrif's department who sent us to the police department. I was put in contact with the resource officer at her old high school. He is a police officer. He took everything I said and spoke to several people including his sergeant. He called me back the next day and said nothing criminal happened. Honestly? How would we ever know with Lizzy being non verbal and blind.


He did say that we could file a civil suit.


That teacher takes away the only voice these kids have. Non verbal kids have a voice! They are human beings with the same rights as you and I.


I did request all records and documentation regarding this "thorough"investigation. The superintendent, Rick Maxey emailed me and said he was giving the request to Teal Britton.


We do plan on contacting Ken Suggs at Janet, Jenner and Suggs for his advice. He has helped us through the years and is the only attorney we trust. He has been with us since the beginning.


Lizzy is doing well. She is with her dad and sister at St. James. He checks on her and gives her love everyday. She does have an aide that is wonderful with her. I feel so good about her. She is loving and has made this transition easier. The whole staff at her new school has been amazing. Thank you to them!


Thank you for all your support.







Monday, January 16, 2017

The Epitome of Special Needs

A lot has changed in the last two years.  Lizzy has changed.  After our Disney trip when her hip went (or was for a long time) bad, she became a different Lizzy.  I feel like we, as a family, became more handicapped by her.  We couldn't take her places like we could before.  Now, I wish she had gone everywhere with us because I see now how "easy" she really was.

She doesn't seem as happy as she was.  She doesn't sleep as well as she did.  She is on more medicine. She is heavier.  Harder to move. I'm exhausted from changing her diaper.  If this is even possible, she requires MORE attention than before.

You know when you realize when someone is really smart you say "wow, he is really intelligent!" or "dang, she is really fit!" We found out just how disabled Lizzy was a couple days after Christmas.

Lizzy is able to pick up toys and put them back down.  Sometimes she throws her toys and sometimes she collects them in her lap. So she can have a pile of three or four toys in her lap.  We also find that she crawls over her toys and may sit on them.  My point is she has the mental capacity to pick and choose which toys she wasn't to play with by reaching or crawling to them.  We have a space heater for her room.  Her wing is approximately 1,000 square feet and we have the capability of heating/cooling all or some of that.  We have a mobile thermostat and if she is playing in the gym, we take the thermostat in there.  Wherever the thermostat is, it reads the temperature in that room and heats or cools to desired temperature. So we have a little space heater that was on her floor a couple days after Christmas.  We have had several over the years and we have never had an issue with it.  Until now.  I heard her in her room that morning.  She sounded a little fussy, but that isn't abnormal with her now.  She used to wake up happy. I walked in to find the space heater leaning against her knee.  Right above her knee, really.  I was like "Lizzy, you can chuck a toy across the room but you can't just push this heater off you?"  I then realized just how "special", "handicapped", "mentally retarded" she really was.  Call it whatever you want, my kid is REALLY disabled and I was slapped in the face with a dose of reality.  Her skin was bubbling and falling off.  It was a second degree burn.  It was bad.  Just push it off.  Move it!  Doesn't that hurt?

I was treating it best I knew how. A few days after, a friend from work, who used to be a paramedic, told me to take her to the doctor and just get her checked out.  I didn't realize infections and burns go hand in hand.  I called immediately and got her in that afternoon.  We love our pediatrician.  When she walked in the room, I said "before you look at it, just know this momma has tried very hard to treat it." She looked at it and said it looks exactly as it should and that she would just prescribe a different cream than I was using.  No infection.  Em was with me and before the doctor came in I said to Em, "look at Lizzy's feet when she crosses her legs.  Her feet get purple because her circulation is bad." I then pulled off her sock and found her big toe had a huge bruise under the nail!  Really? So the doctor prescribed an antibiotic for that.  It literally looks like it got smashed!  My goodness.  I might need to take her in once a month for them to give her an all over check up.

I am thinking of changing the name of my blog. I'm not enjoying life with CP right now.  I don't think she is either.


Wednesday, July 22, 2015

On the Verge

Thank you all for your continued and constant support.  You have been amazing.  We also know that you love our Lizzy and want to know how she is so we will keep you all in the loop.  Continue to pray for us as a family please.

Lizzy is on Valium and needed a refill.  I called it in and knew it could take a full day to get it.  I still had a couple days on it so we were good.  Plenty of time.  Lizzy is on Medicaid and they are pretty firm on filling controlled substances every 30 days and not before.  I got a call that it was too soon to fill it.  I called down to neurology and told them we would need a new script for it anyway due to needing a 1/2 tablet more at night.  Plus, I needed the neurologist to write a script for pain medicine. I didn't think the over the counter meds were strong enough.  Her hip was hurting still.  I was told Wednesday that writing a new script for the valium was no problem but would have to talk with the doctor when he came in that afternoon.  Great.  We ran out of valium Saturday and we had our first seizure since taking it.


I didn't stop and take a picture when I walked in.  I dropped to my knees and prayed for her.  It lasted longer than I expected.  I am used to her having seizures but I will never get used to the feeling of being helpless to my daughter.  I. Can't. Do. Anything. To. Stop. A. Seizure. 

When she was finished, I was so angry.  I have received no phone call from the doctor.  I understand he is a very busy man and there are lots of children who are patients of that clinic.  BUT, my kid is different.  We came into the clinic with a hip OUT OF PLACE and you admitted that she has been overlooked over the years.  Do you really want to skip over this child again?  Apparently, yes, because I called Monday morning at 8:30 to a surprised nurse. Apologizing and telling me she was going to take care of this.  I called back at 4:00 furious.  Lizzy hasn't slept very well and has been in pain and now I'm ready to spit fire!!  Bonnie (the nurse) is upset because I'm angry and taking it out on her but remains calm with me and lets me abuse her verbally.  Then she says "I'm not sure what happened here, I know he is on vacation this week...."  She is still talking and it's all mumbling because all I heard was that this professional went on vacation without taking care of his patients before leaving.  Well, I hope you have a wonderful vacation.  I know you need and deserve it but when you get back, you are going to have to deal with the wrath of this mother.  

Now what? She is his nurse and now has to take care of this mess because her boss took off for the week.  I get it and understand he probably had this vacation planned.  Sure, I understand.  But I called and was diligent with her medicines last week giving plenty of time for refills.  She had to call the on call neurologist who had to take a couple hours to review her records and come to a decision.  Thank you for being thorough but by the time I picked up her medicine, it was 9:00pm.  Too late for Lizzy.  

I hate that stuff like this happens.  I know the whole hip situation screams negligence.  I know that.  If neurology had connected us up with orthopedics years ago, we wouldn't have this situation.  I know this is what a lot of you are thinking because I am thinking it too. 

So here we are on Wednesday.  Let's see how Lizzy is.



Praise God for her wanting to get up on her knees and wrestle with momma.

I did get a call back from her physical therapist that worked with her years ago.  Her name is Christy and she is a Christian woman who love the Lord.  She was instrumental in getting Lizzy to walk at 7 years old.  She would sings all the songs I would to Liz.  Sunday school songs.  All of them for the entire hour of therapy every week.  I love and respect her and her opinion tremendously.  So when she called and said I don't feel comfortable working with her at this point with her being in pain, I said "thank you."  I am not really sure how PT twice a week for 6 weeks is going to help.  We have to get the hip back into place first. So on her recommendation, I called another hospital.  I think God knows our breaking point because I was there when I called.  On the verge, I called and was able to get Lizzy in for an appointment on August 14th.  They have a clinic four hours away, so we will spend a night or two.  I didn't mean to be in tears but I really couldn't control it.  I tried to stay strong and it just came across like I was incompetent.  I finally broke and I know the Lord placed the perfect person on the other end.  Compassionate. I felt blessed.

I did apologize to Bonnie and explained where I was emotionally with Lizzy and she remembered us when we were there back in June.  So I think I good with Bonnie now.  I am not sure if I am going to keep our August 27th appointment there.  It would really be to just shred the doctor and I don't think that would benefit anyone so......I may cancel it.  Or not!  They will wonder where Lizzy is and call to check on her.  Is she ok? Has she sought a second opinion?  Oh no! Yeah, that won't happen.  I'll cancel it.  

We have increased the valium and she is no longer on 2 alieve twice a day. I have learned that every doctor is different and feels like their recommendation trumps all others.  Aspirin (325 mg) throughout the day.  Says it is more gentle on her stomach.  This was the orders from the on call neurologist.  I guess if her current neurologist has an issue, he should have taken care of this before........forget it.  Move on Lisa. 

God is good all the time and all the time God is good.  Amen?





Wednesday, July 15, 2015

Frustration: Our New Normal

Something slapped me in the face the other day.  Hard.  The realization that we have lives too.  I have a job, Damon has football during the summer, Emily has camps, and Jack wants to get out and do stuff too.  It isn't just Lizzy. It feels like we are all consumed by her every minute of the day.

We are having some trouble getting her settled at times.  For example, she loves to shred magazines.  She has always loved to do that.  It is such a mess.  She drools and paper sticks to her face and arms, it ends up in her diaper (?) and she shreds it into pretty tiny pieces.  So here is a picture of her shredding a magazine.....it's probably the swimsuit issue from Sports Illustrated.  That one she can shred for an hour and your won't even know what magazine it was! 


Before she has any issue with her hip she would be sitting upright.  She heard me at the door and put her head up.  This is how she looked when I first walked up.


So you can see her entire body lays almost flat.  If I try to lift her to an upright position, she winces like she is in pain. I called the neurologist today to see about a stronger pain medicine.  The Valium at night stays in her system throughout the day apparently because she isn't having seizures.  Found the blessing!!

I am very frustrated.  To put a diaper on her is painful.  To left her into the tub is painful....for us.  She is 80 pounds of dead weight.  We have a lift but it's hard getting her into it.  We need to make a call to get a sling for it. To carry her to the van is so difficult.  We have to carry her with her body sprawled across our arms with her legs banging to the door frames......it just stinks trying to maneuver her through the house like that.  This is our new normal and we are still getting used to it.  

She cries out in pain when she tries to move herself.  She used to love car rides.  She can't sit upright for too long now.  We can't wrestle with her and that hurts.  She loved to wrestle around on the floor.  Not WWE style, but Lizzy style.  I miss that.  She doesn't smile very much and that breaks my heart.




We have an appointment to see orthopedics and neurology on August 27th.  Seems like it's so far off. I have called for a Physical Therapy consultation and am just waiting for a call back.  Her pain isn't 100% managed but we need to get that hip back to where it belongs.  Pray for our zee zee.  Pray for our family.  The support has been amazing.  

We are open to any suggestions you may have.  As hard as this is right now, we get that it's not as bad as some may have it and we are thankful for that.  We look for blessings that keep us going daily.  

God Bless.



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.

Lisa




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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.

Lisa


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