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ALL ABOUT PRINCESS NIA

( Desiree )

August 2008

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MISS INDEPENDENT

Aug 03, 2008 05:52am (EST)

I came downstairs yesterday to find Nia walking to the table with a bowl of cereal. I stopped and asked her who got her the cereal. She said she got it herself.

I stood there for a minute looking at her. I knew the cereal had been on the fourth shelf of the pantry and there aren't any bowls laying around on a low spot. I have 12 foot ceilings here so my counters and cabinets are very tall so I was stumped as to how she got a bowl. I asked to show me how she got her bowl. Sure enough she pulled her toy over to the counter to give her a little extra boost. It wasn't a very tall toy so she still had to most of her own strength to get her up on the counter. She then stood up on the counter pulled down a bowl and climbed back down. I know this doesn't sound like a extraordinary task but my daughter has cerebral palsy. To me this is just another small miracle in her life. She is determined to do what she wants when she wants. She is only four years old so I only imagine what mountains she will climb when she is older.

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Posted by ( Desiree ) | Comments: (11) | Permalink

THE THINGS MONEY CAN'T BUY

Jul 18, 2008 03:30pm (EST)

I have been posting over the last year and a half about all of the frustrations I have had since moving to Florida in finding good caregivers for Nia. The lack of pediatric care in south Florida is horrible. To add to my frustrations is the lack of coverage that my insurance provides. My daughter has a official cerebral palsy diagnosis yet my insurance only allows for 20 physical and occupational therapy appts a year. TWENTY! That is used up so fast. Then we are left trying to figure out what to do to help our child. We are a middle income family. Without insurance her PT and OT visits are $90/ session. That is over $700 per month if she gets each once a week. I can't pull that off. We don't qualify for SSI benefits and she on a waiting list for Medicaid for the diabled (for years). She does get thirty minutes a week at preschool of physical therapy but that is for what they feel is educationally relavant. We are still fighting for the occupational therapy. That is a whole different post in itself. So I have spent the last year feeling like such a failure as a mother. Not only did my body cause my child the harm she will have to live with for the rest of her life, but I couldn't even get her the help she needed to manage it. Well recently I have posted about the angels at Shriner's Hospital in Tampa. I feel like they were finally the answer to so many of my prayers. They gave us first class care and at no charge to us. They are even more than what my prayers asked for. I finally had one load off my shoulders. I at least found a place where she could get her Botox and all of her orthapedic needs taken care of by a wonderful caring group of people......FOR FREE. Today I have had another prayer answered. THERAPY! I recently applied for help through the Elk's Logde! Who knew! Shriners and Elks...God's gift to special kids. I sent in a application for therapy services for Nia and today I got the approval phone call. I get 26 free therapy visits with a occupational therapist in my home. Next year I will have to reapply if I need more. We are waiting for word on the physical therapy but the lady on the phone said that if the budget allowed they would provide for her to get therapy with her old PT who we love. I swear I am waiting to wake up from this wonderful dream. I have shed so many tears for the money I don't have to pay for this therapy and the thousands of dollars I pay a year for insurance so they could continue to deny my child benefits. Now here is another wonderful organization who is here wanting to help these children. A little history, the Elks in Florida began helping children with orthapedic needs in 1933. They founded the Harry-Anna Crippled Children's Hospital to serve children with orthapedic needs for free. In 1999 they implemented a new program to provide for therapy for children in their homes free of charge. My insurance company gets millions of dollars a year to give as little help as they have to. All the money we give them can't buy my child the help she needs to lead a functional life. Yet here are two organizations who are giving these special children all the help they need free of charge. These places are kept alive by donations and volunteers, not greed.

So I guess it's true that the best things in life are free.

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Posted by ( Desiree ) | Comments: (6) | Permalink

SHRINER'S PART 2

Jun 29, 2008 08:00am (EST)

We went for Nia's Botox injections this week at Shriners. The experience was wonderful again. We got there at 1 pm and were instantly taken in. We were still signing papers at the registration desk when the nurse came up behind us to take Nia for a motion analysis study. In the three years since Nia's CP diagnosis she has never had a motion study. It was so cool. (Hhttp://www.shrinershq.org/Hospitals/Greenville/links/Special_Programs.aspxere is a discription.... ) Then she was taken to get final fitting for her new afos. They did some quick preop testing and then she was talked to by the child life specialist. I can't even describe in words how wonderful every person we came in contact was. Even the maintenance engineer who came into the room to fix the temp stopped to wave to Nia and say "Bye Baby" as he left the room. A doc that wasn't even Nia's stopped as she was getting wheeled to preop to wave at her and say "HI Honey". Usually when we go to a doc we are left sitting and waiting for the doctor. Here we walked in for preop and there was a room full of people waiting for us. The anesthesiologist sat down in a little chair next to Nia and talked to her about what flavor mask she would want and about how pretty she was. She loved that. I couldn't believe that the child life people came and sat on the floor with Nia to talk to her about her botox experience. They brought a doll and all the equipment that she would see. They even had a book with pictures of every room she would be in and asked her if anything in the picture scared her. If she said yes they would tell her what the machine did so she wouldn't be scared. I couldn't believe this. Every other botox injection she has had has been us holding her down and the shots just given. Nobody ever thought twice about what she would be feeling. This whole experience at Shriner's was about how she was feeling. They had activities for kids of all ages to keep them busy. It is really a different setting than most hospitals. They don't want them sitting in their rooms. They even have food in a special area so they kids aren't served in bed. They had rooms for every age level for kids to hang out. There were pool tables and xbox for the older kids and a huge playground for the younger kids. There was a volunteer that came in Nia's room just after the shots who played a guitar and sang to her. She didn't enjoy it though since the lady came in and shut Dora off to sing to her. Not good. As the lady was singing Nia was looking at me out of the corner of her eye like "What the hell mom?". It was so funny. When they took her for botox it all went pretty quick. There was another girl in pre op with her parents and the mom gave Nia beanie baby which Nia loved. I talked to the parents for a minute and the first thing out of their mouth was "Isn't this place amazing?". I couldn't have agreed more. I sat in the waiting area and a little while later and had a experience much different than what I am use to. The mom with the beanie baby came to me crying and wanted to explain why she gave nia the toy. Her daughter was 13 and going in for a 8 hour back surgery. She had used the excuse of the toy to leave the room so her daughter wouldn't see her cry. I tried to comfort her and take her mind off the surgery if even for a minute. A few minutes later another mom bolted from preop into the waiting area crying horribly. She started apologizing for the tears and said that her six year old was getting a amputation. My heart sank. I am use to being the crying mom. I am use to feeling as if the pain is all heaped on my child and all of a sudden I am feeling as if my child was dealt the easy hand in the group. A few minutes later they came and got me since Nia was done. As I walked to recovery I could see through the glass window that Nia was in the arms of her nurse being rocked. She was standing up holding her while Nia rested her scared head on her shoulder and melted into her arms. Nia had woken up scared and she instantly calmed her. It warmed my heart. Our day was over quickly. We picked up our AFO's and left. I think my only unhappy moment in the experience came when I asked her care coordinator who I should give Nia's handicap permit paper work to and she told me that she wouldn't qualify since she ambulates. What? I believe this woman is very misinformed. Nia had a permit from when we were in KY but it expires this month. I asked the lady if she has ever watched the people who park in handicap. I'd guess that 90% of the ambulate. My child qualifies for medicaid for the disabled, walks with two braces and was just given a renewed prescription for PT for gait training so I would imagine that this would be exactly who should get the permit. She told me I should put Nia in a stroller to make it easier for her. If that is the case should people with a wheelchair not use the spots since they could wheel themselves the distance? Anyways I was tired and had a head ache so I didn't go searching out the doc to fill out the papers. I will just give it to Nia's ped this week. Oh and a interesting moment came in the morning of the shots. They had a fire drill! They actually had a fire drill for employees AND patients at a orthopedic hospital! I understand having one for employees to do but having these kids struggle to get out for a fake fire was so weird. Anyways, all in all it was another wonderful experience and I thank God everyday that I found Shriner's and the wonderful people who work there.

Posted by ( Desiree ) | Comments: (7) | Permalink

REMEMBERING...

Jun 01, 2008 04:55am (EST)

Have you ever gone back and read your old blogs? I did yesterday. I swear I wasted like a hour doing so. I am so glad that I started this blog because I forgot so many things that the kids would do and say that were so funny. They brought me back to all of my old emotions, good and bad. Some of the experiences that were so huge in my life back then, I actually needed reminding of. I read the blogs of Nia using the tall kneel as her mode of transportation. I remember it seemed like a million years that she couldn't walk; now it seems like a million years that she has been walking. I blogged about the first time she walked. I am happy to have that memory in writing so someday Nia can read how proud I was of her. It was one of the greatest moments of my life. A lot of the emotions that I wrote about are still within my heart and I certainly still shed tears. I think some the emotions have changed some over time or maybe I have changed and they effect me differently. I have less desperation in dealing with Nia's CP because I see now how amazing she is (as I am typing she is going to break her neck trying to use my laundry basket to get something of the counter that she can't reach). As I read about my fears in my pregnancy with Cade I can laugh now at what a little firecracker he is. I actually forgot about my very scary experience with Cade's velamentous cord and vasa previa issue. How in the world did I forget that. I can now see Dr. L's face when he walked around the drape to tell me the actual danger my baby had been in. I forgot about the cruel comment that my dad's boss made in front of my dad as he was talking about Nia's AFO brace. He had been telling his friend about her brace helping stablize her walking and his boss said "Run Forest Run". It makes me feel good to know something that stung so much at the time can be forgotten. I hope someday Nia will be able to put cruel comments out of her head (incidently the day my dad retires my husband is going to kick his boss's a$$ so we all need to start pooling money together for Scott's bail when they arrest him).

As I read comments from my share friends over the last three years I came across names that were literally a daily part of my life but haven't seen in years now. I wonder how their children are and am glad to know they have moved on in their lives. I wonder if I will ever move on. Will I ever decide that Nia's prematurity is something I need to put behind me? I doubt it since it left behind CP and she will never be able to move on from that. I realize in my reading that my Share friends know more of my inner thoughts and emotions than any other people in my life. Maybe you already knew my thoughts and emotions without me having to say a thing because all of you have had to feel the same things with your children. I guess that is why I find it so easy to say what I am going through. I don't have explain much because you already know. I have been a member of Share for three years. I think I became a member officially right about the time Nia was diagnosed with cerebral palsy. She was 10 months old. In three years I have shared with you all my stuggles, guilt, saddness, happiness, pride and pain. In honest thought though I don't think my daily visits are about me anymore as much as they are about wanting to be there for new Share members. I wish Share had been around when Nia was in the NICU. I remember feeling scared and just wanting to talk to people who understand. I was lucky that my best friend had a 25 weeker six years earlier and I could talk to someone who knew. Sometimes it's calming when somebody says "my child went through that" and made it out of it. Sometimes it helped to see my friend whose life was now normal and that there is a end to the nicu. It helped to see her daughter running around like a wild child and know that someday there was a chance that Nia would be able to just be a child. I think it is theraputic for me to give other families the same hope that my friend was able to give me.
To all of my Share friends, old and new thank you for sharing such a huge part of my life with me. You were comforting when I was hurting and happy for me when life was good. I hope that I did the same for you.

I wanted to Share a picture of my best friend's daugther and Nia together at xmas.

Gabi born 25 weeks 1 lb 9 oz and 12 inches. Two and half months in the nicu.

Nia born 29 weeks 2 lb 2 oz 15 inches. Four months in the nicu.

The other is of all of our kids. Hard to believe all of these kids came from two girls who met when I was 18 years old. It has been over 16 years that she has been my support system. Our lives have way too many heartbreaking similarities as well as many differences. We both gave birth to beautiful boys in our first pregnancies and both suffered miscarriages for our second pregnancy. We both only have one girl and both of our girls were micro preemies. God put her in my life when I was so young and couldn't image what my future would hold. She was there when I graduated college, when I got married, got divorced, when I met Scott and had my babies. So on top of showing my graditude to all of you for your support I wanted to thank her for all those years. Kim, I know there were many times that you probably wanted to shake the sh** out of me (those young years were rough on her as my friend) but had to smile and be supportive and for those years that you held my hand through the pain....THANK YOU.

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Posted by ( Desiree ) | Comments: (5) | Permalink

SHRINER'S PART 2

May 22, 2008 03:49am (EST)

Well I scheduled Nia's Botox appt. for late next month. Since they are going to put her under general anesthesia they have to do pre op testing before the procedure. Normally patients come in two weeks before the shots to get their testing done. Since I live three hours away they said that they would do it the day before. The scheduler on the phone then asked me if I had wanted to stay at a local hotel or if I wanted to just have her admitted. I was a little confused at first, afterall this is only botox injections. She told me that I could have Nia admitted into Shriner's hospital on the day before her shots and they will do her testing, we don't won't have to pay for a hotel then and since she will be admitted they will have her procedure done early in the morning so she won't have to go too long without eating or drinking. I swear I feel like I am in a dream with these people. Can they try any harder to make my life easier?? Also since we will already be there they will have her new AFO's waiting for her to pick up. So I will be happy with that. I am having my mother in law come in town to stay with the boys and I am going to make it a 'Mommy & Nia' adventure. I plan to spoil her rotten since her daddy will be out of town and not there to hold me back.

Oh on another note, I figured I would share with you my 'MOMMY MOMENT' to go down in history yesterday with Cade. He was standing on the kitchen chair while I was making him lunch. I started to hear water so I looked up and he had taken his diaper off and was peeing all over the top of my kitchen table!

He must have been whipping 'it' around because he had it all over the top of the table, two chairs and the floor. I have no idea where that even all came from in his little bladder. I swear I almost died!!! (Hey James, want to explain this 'man' moment to me???)

Posted by ( Desiree ) | Comments: (9) | Permalink

SHRINER'S HOSPITAL

May 09, 2008 05:09am (EST)

I have been complaining about not being able to find Nia the care she needs since moving to Florida. We live in southeast Florida which definately caters more to retired people than children. We tried two physiatrist here, one pediatric whom I thought was awful and one who wasn't pediatric. That wasn't right for us either. Our hunt for Botox was so frustrating. Nobody locally would give a child Botox. We found a neurologist at Miami Children's hospital and all I am going to say is that I would travel out of state if I had to before I would ever go back there. It was horrible!! So I then found a orthapedic surgeon for her next visit who specialized in CP kids and he was a very nice man. He didn't believe in Botox though. I found this to be so weird. As the mother of a child with mild CP I have found Botox to be almost a miracle drug. It has fast results and is least invasive. So even though I thought he was a nice man he wasn't right for us. I can't even tell you how many tears I have cried over not being able to find someone to care for Nia. I felt like a failure as a mother. Every doctor was a huge disappointment or a huge frustration for us, not to mention the compounding medial debt. After feeling that I exhausted every option on the east side of Florida I decided to travel. I found a Shriner's hospital for orthopedic care in Tampa. It was a three hour drive for us but I felt as if I had no options. So I called.

Now my Shriner's experience......

From the first phone call I was welcomed with a warm voice on the phone. She took our information and we were called for our appointment. We took our first trip there yesterday. After so many disappointments in doctors I was not expecting much. As I walked up to the hospital doors there was a huge twenty foot statue in front of the hospital of a Shriner holding a little girl with braces on. It was breathtaking. I didn't realize how effected I would be by this statue at the end of the day. We walked in to the hospital and there were volunteers everywhere. The place had tons of computer games and toys for the kids. A volunteer with a orthapedic issue of her own came up and began passing out activities to do with the waiting children. EVERY PERSON I came in contact with was warm and helpful. EVERY PERSON! From the time they called us in for our appointment we were greeted immediately with the team there to help our child. No waiting. One after another came in the room and talked with us and each other about Nia. They talked to her and brought gifts (toys) for all three of our kids. The first thing every person said to us when they came in was "What is your concerns and What do you want from Shriner's for Nia?" Nobody talked AT me. Nobody ignored Nia as a person. I told them how I hated the new AFO's Nia had from her last doctor but insurance wouldn't let me get a new pair for six months. I told them how I would like night braces for her since AFO's are impossible to keep on her if she is at home. I told them that I wanted botox for her again. After the nurses, doctors, and therapist were done we discussed our immediate plan. They simply said "OK". That's it. No talk of insurance coverage or noncoverage. No unnessary come back appointments. They put the orders in for Botox. They also told me that they would lightly sedate her since they don't want her to feel any pain. It wasn't about getting her in and out so they could get their appt schedules as full as possible. They didn't want her to feel the pain of injections so she will get a little gas by a anesthesialogist (sp) for the shots. She has been given Botox by four other caregivers since she was two years old and nobody has ever given us this option. We do have to go back for the shots since there is a six week waiting list for the orthapedic surgeon to do the procedure. They told us to come the day before for her presurgery checks and that local hotels give great Shriner's discounts. They then immediately sent us down to get her casted for her braces. She got to pick the designs and colors (she loved that). The orthapedic talked to Nia the entire time with gentle care. She even told me that they would provide the cute little gym shoes that are especially for kids with AFO's. Did I mention we NEVER sat waiting for anything. They were always there waiting for us. Scott even told our care coordinator (did I mention we got a care coordiator to handle everything) that for Scott and I that this place was a 'Disney World' for us. At the end of the day Scott and I were very quiet as we walked out. We were shocked. We kept expecting the bad part of the day. There were NONE. There won't even be a bill. How in the world can all of this care come to my child and it's free. EVERYTHING! We kept waiting for someone to tell us it was a joke or a dream. I walked out of the hospital and looked at that statue again and began to cry. It symbolized something that I experienced. Here was this huge statue of a Shriner holding a little girl with braces on her legs. For us, it was exactly what they did for Nia. The people at Shriner's welcomed her in and gave her all the help she needs. They picked her up and held her in their arms to help her. They were more than I could have ever dreamed of for her. They were the care that I have always wanted for my child but thought never exsisted. They were not there for a profit, they were there because they wanted to be there. They wanted to help these children whose lives have been hard since day one. They wanted to help these parents who have had so many struggles, frustrations, heartaches and helpless moments with their precious children. As I walked away from that statue I called my mom and cried. She asked how it was and I said "It was the most wonderful place in the world".

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Posted by ( Desiree ) | Comments: (12) | Permalink

WONDERFUL STORY

Apr 14, 2008 03:37pm (EST)

http://wcbstv.com/sports/miss.usa.cerebralpalsy.2.697090.html

I heard about the beauty queen in the Miss America Pagent who has CP and I can't describe how it makes me feel. I have never doubted that my daughter could do whatever she set her mind to. I am sure she will never win a marathon but I hope she never lets her limp stop her from running in one. I look at this beautiful women and she is going to be inspiring for my daughter. To me, her parents are my heros. I always worry if I am say or doing the right things with Nia in helping her understand that her CP is not something she should be embarressed about or let it stop her from doing things. I hope I am doing it right because I hope someday another mother of a young child with CP can look at my daughter as inspiration for her child.

On another note, Happy Birthday to my beautiful little boy! Cade is two today!!

Posted by ( Desiree ) | Comments: (6) | Permalink

HANDPRINTS ON MY HEART

Feb 14, 2008 02:16pm (EST)

Wow I haven't blogged since November!

Anyways, today Nia brought home a cut-out handprint she made at school. It was taped to a valentine card she made for me. I then went and pulled out the very first valentine I ever got from Nia. It was made exactly four years ago. The little print was taken when Nia was one month old and just shy of three pounds. Looks at how far my miracle has come.......

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Posted by ( Desiree ) | Comments: (6) | Permalink

OPINIONS PLEASE....

Nov 12, 2007 10:17am (EST)

Nia starts school this week. She will be going to preschool five days a week from 8:00 until 12:45. We have a tour of the class in the morning but I am already excited by what the admistrator has descibed as their preschool program. Her school is at a elementary school two towns away. It is the only school in the county with the preschool facility. She said that the kids basically have their own wing of the building. They have their own side of the building for drop off. They even have their own playground. They have the kids very seperated by age group. Nia will be in a class with kids whose ages are 3yr 7 mo to 4 yr 0 months. She is 3 yr and 10 months. This all very comforting for me. Off the bat I said I wanted to drive her. I just couldn't imagine putting my three year old on a bus. I didn't even want to put my five year old on a bus. Anyhow they provide free busing. So the other day I went to her school and it takes 15 mins to get there and 15 mins to get back. I will have to do that twice a day. Lets set aside the fact that gas is 3.22/gallon right now because it shouldn't matter (but it does on a tight budget). So I asked some questions about the bus. The bus has only preschoolers on it. It has a driver and a aid. It also has car seats for the children. I was shocked! So now the what do I do?? I need opinions. I am a bad mom if I put her on it? Am I too protective??? I was kicking around the idea of driving her the first week and letting her get adjusted. Then working it out with the school that I could take the bus with her for a day or two to get her comfortable and see how she likes it. I don't know. Help???

Posted by ( Desiree ) | Comments: (11) | Permalink

SO FAR SO GOOD.....

Nov 08, 2007 04:18am (EST)

Well so far Nia has been doing great! I can tell the food is still slow moving since she bloats up a lot shortly after eating but it comes back down. No vomit! She has been stooling like crazy but formed stool (Sorry for TMI). She is hungry all day long to the point of driving me nuts. So we go for a follow up with the GI next week to see what he thinks.

I had our IEP meeting this week for Nia. It went great! They surely don't play around here when it comes to school. I thought it was crazy when Devin started kindergarten and it was full day, well Nia is starting preschool in the public school and it's FIVE days a week from 8-12:25! I am a little weary about it. It seems like a little too much. We'll see how it goes. Her PT at school will see her once a week to start and his plan seems right now with what we think she needs. I am going to kill my bank account in gasing up my car. Her school is two towns away and that means back and forth twice a day! They do offer busing but I am not ready for that yet. The preschool is in the elementary school but they keep the little kids very seperate from the rest of the school. They have different buses, different drop off points for parents, their own play ground and pretty much their own side of the building. That gives me comfort right now as I try to let go a little of my baby.

Thanks everyone for the well wishes for Nia. They seemed to work! Oh and I dressed the kids up in their costumes so I could get pics. So here is that pic. The other is her new car. Cade loves riding in it but he refuses to sit on the seat. He sits on the floor so he can play with the radio stations in it. He was in it by himself yesterday and he was sitting on the floor playing with the radio. All of a sudden the car took off in reverse. He found the peddle. As we ran to stop it he rammed into the curb. It was funny!

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Posted by ( Desiree ) | Comments: (6) | Permalink

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