Saturday, April 27, 2019

Abbyworld 2019. Begin again.

Wow. Over a year since I blogged. So much to say, so many stories to tell.

There were many reasons I stopped blogging. So many reasons. I thought it was just me until I saw that many of us who used to blog weekly or some had just kind of faded away.....

Why is that? I know for me there were personal reasons. Truthfully as tough as I come off I cannot handle criticism. Never have been able to. When you open yourself up like this you get as many trolls and keyboard bullies as you do supporters. That was tough for me. In my day people just didn't say hateful, snarky and disrespectful stuff without getting their butts kicked. Today people have no fear of that.

I live in a world where I love every day. I spend every moment caring and loving someone with everything I have. People I know or don't know feeling the need to spout off about that gets to me.

I started to slow down when I discovered we...or Abby has a few unsavory fans. That made me sick to my stomach. I felt the need to protect her.

The biggest reason had to just went on. Things changed. When our (our being us bloggers) with kids in the same age group were young we often wondered why mothers of older girls were so angry and bitter and easily set off. We don't wonder anymore. And sadly older can mean anything over 12. Do you remember what it was like to have a young baby? The up all night? the diaper changing? The carrying and lifting? Imagine that never ending.  I'm not saying she's a baby before anyone jumps down my throat. But physically…..those needs didn't change. She just got bigger. Adult size and I am still up all night, still lifting, still feeding, still medicating. still watching her breathe. Still walking up in a panic....every time I wake up for fear that I didn't hear something. that I will find her.....

Abby went from Miss Cutie that could walk and eat and talk in her own language to..... not so much anymore. She's still cute. More than cute. The list of people that just go away got longer and I am tired. I AM SO TIRED.

Abby is 14 now. Yes. 14. She's a little over 5 ft tall. As we speak she is drugged and in her bed to help with the screaming pain she is dealing with right now.

This Tuesday will mark 3 weeks since I handed her little body and life over to a surgeon to fix what had become her mangled hips, legs and feet. Rett Syndrome had already taken her spine. We had that corrected 2 yeas ago. Since then her hips they insisted needed rebuilt before the spinal had completely come out. Her left shin bone started to bend and her feet dangled like marionette feet. She had completely lost the ability to walk unassisted and even standing made her pat her hips and look at us with her pleading eyes.

In December the decision was made to fix both her hips, lengthen her adductor muscles, correct her left leg and feet. It was a lot and a big decision we didn't take lightly. I struggled if this was putting her through this because I couldn't except that she couldn't walk anymore. After several therapies and visits it was obvious that she was in pain. In pain every day. I needed to fix that. Even if she still never walks again I cant let her hurt.

So on April 9th they took her...for 8 hours. She ended up with 9 places they either cut bone and plated or cut and lengthened muscles. She no longer has crooked legs and hips and feet. She is miserable though. We haven't heard her voice except to whimper and cry. My little singer is silent. I used to joke that the silent on my angel was broken. What I bet most of my friends would give if their daughters made even some of the noises Abby did.

She is having an incredibly difficult time. She has lost weight....she didn't have much she could afford to lose. at this time her stomach will only process Pedialyte so there will be more.

My hope is to get her back on her feet one wish is that no matter what she doesn't have to deal with the pain she was having every day. Until then Every breath I take is for her. For as long as I have her it will be. Because to me this is Abbysworld. I am but a humble servant to my Princess and always will be.

I am also a Mom to her Bubba...when he lets me. But he's grown. He will always be my Prince.

I will try to be better. To do better. To be worthy of her.

I will try to get some rest. One day. Some day so I can be a better......everything. I am sure many of you miss my incredible wit and I know I do.



Thursday, February 22, 2018

Rett Syndrome. One year Post Surgery

One year already. Only one year?

We all know I had pretty much given up on blogging long before Abby's Full Spinal Fusion One year ago today.Yesterday I sat and wondered when the last time I updated on blogger and was quite disappointed with myself that it was before Abby's surgery. I have taken the no computer lazy route and just been updating on Facebook. For those that have always followed us here I apologize. For those younger Rett parents that look to me for guidance.....Rett causes memory loss in parents. Prepare yourselves.

I usually blog with pics and build my story around them. There are just way too may pics in a year to do that in this first post so I will end with pics and captions.

Feb 20th 2017 we traveled from Kansas City to St Louis for her surgery. Her father and I were a bundle of nerves to say the least. Feb 21st she was fitted for her pic lines and we were sent back to the hotel. That night her Aunt came in and stayed the night with us. Thank God or I may have killed her father. You know cause he insists on being the most annoying person on earth when hes nervous. Her Aunt ended up staying the entire stay with me.

Feb 22nd we arrived at the hospital just before 6 am. Everything is a blur but they let me hold her until they wheeled her away from us unconscious. We were expecting a 8-10 hour surgery being that she was having fusion from T2 to Pelvis. It was somewhere around 4.5 hours when the doc was suddenly standing there after we had not had our hourly update and it was almost 45 minutes late. I jumped up and let out a little yelp for him to tell me it had gone well and she had done great. There was minimal blood loss and they had been able to transfer her own blood back into her.

Almost a 2 hour wait until they took us back to recovery because they were waiting for her to come around. That didn't happen and she was transferred to the PICU. It took almost 32 hours for her to regain consciousness and open her eyes. She was not coming out of anesthesia well and for Rett that can sometimes be expected. When you are living it it is absolutely terrifying. The only girl I knew that had had the surgery was awake when we went in to see her. Abby is stronger than that girl for the most part. At least physically. Abby could walk and the other girl never had. As the hours ticked by and the heart rate and blood pressure and o2 monitors went off almost constantly I came as close to losing my mind as I ever have.

I have actually sat here for a good long while trying to decide how to describe the next part. I'm going to do it the best I can without being an ass, hurting the wrong peoples feelings or leading anyone in the wrong direction. Please be aware these our our experiences and our experiences only.

We had her surgery at this hospital, 5 hours from home for good reasons. Our hospital in Kansas City just didn't know Rett Syndrome and St Louis had opened a Rett Clinic that we had been attending 2-3 times a year for several years. It made absolute sense to have the surgery there. Where there was a Rett Clinic right across the street. Where her Neurologist did rounds. Where we had discussed our anesthesia fears with the team for years.

When Abby wouldn't come around and then when she did and she was tachycardic and hypertensive with low o2's I begged for the Neurologist. Even for just a consult. Something wasn't right and I needed someone that knew Rett to look at her and for people to quit saying standard protocol because there is nothing standard protocol about Rett Syndrome. I was shrugged off time and time again. I finally called the Rett Clinic myself and they didn't seem to get why I was calling them or have any knowledge that Abby was even in hospital. As calmly as I could I begged for someone to come talk to us or take a look at her chart and they were completely oblivious to why they would need to do that, It was scoliosis Surgery and that wasn't their specialty. What!? It was Neuroscoliosis caused by Rett Syndrome and there are several precautions that need to be taken. Long story 9 days we never heard from the Rett Team and they never called until it was time for the next appointment. Absolutely unacceptable in my book. My daughter is not a number in your cattle line for your grant funded clinic. She is my daughter, My flesh and blood. My heart.

Once we got home Abby was basically unable to leave the bed and developed Paralytic Ilius. Which at the time we referred to as unable to poop and keeps puking. With each episode she would get tachycardia again and hypertensive which meant great pain. At the end of March she had an 8 day stint in Children's Mercy and it was determined that the condition was caused by Propofol InFusion Syndrome. The one drug we had absolutely forbade her to have during anesthesia because of its risk in Rett Syndrome. It turns out that telling 3 clinics every time for 3 to 4 yeas that if there is ever a surgery that your child is not to be given Propofol means nothing. It also means nothing when you tell the surgery anesthesia team in the pre surgery visit and they tell you that they are aware and there are other meds they can give her. I can go into all the letters and emails and phone calls and meetings but it doesn't matter now. The hospitals have no obligation to have any ethics, standards or knowledge. Therefore will will not be returning to St Louis Children's. On that note we had and still have absolutely no problem with the surgeon that did the surgery. He is one of the best in the nation and spends half his time working out of Shriners. I only wish we had had her surgery there. This is the complete carelessness of the Anesthesia team and what I believe happens when doctors and teams work out of 4 different hospitals. That and the Rett Clinic. I don't know that ill ever take her to another one except that I have thought over and over that this wouldnt have happened if she was with Percy, Glaze or Djucik,

The one good thing about this stay was that out attending was  former student of another Rett Mom in Arizona. I knew immediately that he had some connection and on his second visit I looked at him and asked what his connection was to Rett Syndrome. He looked at me in surprise and told me his former favorite teacher from his youths daughter has Rett. I asked here he was from and he told me and I immediately named the teacher. We had her on messenger within minutes.By the time we checked out that attending made sure we had the best of every specialist at Childrens Mercy and made sure that each had experience with Rett. He was even able to get us in with a Neurologist that did all his studies at Texas Children's and had worked with Glaze and Zogbi.

Fast forward one year...I thought about taking your through the whole year but its been rough. A ton of therapy, Standers, walkers and gait trainers and she can just now take baby steps. No longer than a minute or so before her legs give out. Pre surgery she was walking 20-30 minutes at a time with up to 300 steps in distance. There is an ongoing issue with her left leg and foot that we cannot figure out except that that side is very stiff and she drags the leg and or foot.

But its our Abby and she is a trooper. Happy as a clam. Demanding as all get out. A big gigglebox. She is in school full time...that didn't happen until Mid October and its her favorite place to be. She's officially a teenager now. I know right? When did that happen? She is mastering the art of sighing and rolling her eyes.

Thank you to everyone for your love and support. I don't know what I would have done without those of you that have continued to follow us and have stuck it out.

God Bless

Friday, February 10, 2017

7 years.

 Yesterday we went to see Abby's long time PT with Children's Mercy Hospital. She has been in the PT program since before we had a diagnosis. All in an attempt to keep her as strong as possible as she is so low tone. For the last seven years she has had the same PT. Her name is Wynde.

Abby has almost always given Wynde a very hard time. Years of dirty looks and huffing and puffing if not pretending to fall asleep all together so she didn't have to work. Wynde never gave up on her. Our goal with Wynde was always Abby's back. She worked to keep her flexible and as strong as possible and to hold off the inevitable....Scoliosis surgery. We went yesterday as a final exam and assessment to see where she is before the surgery as we will more than likely still receive most of Abby's therapies through Children's Mercy in some way or another. I tried to keep it together as best as possible because I know that Abby will not return to least not for a very long time.

I warned Wynde when we got there that Abby had worsened a great deal since we had not not been in to see her on a regular basis. I think it was as hard for Wynde to see as it was for me.

The standard I am not going to cooperate look.

Wynde asked her where she hurt and her hand immediately went to her hip.

Wynde keeping her as straight as possible but you can still see the crookedness of her spine.

We used to be able to stretch her best in this way. She was not having it and attempting to stay off her left side. The alternative was to be on her right..where her hip is out of place.

This is where I think we realized therapy was not going to happen.

We took a break at this point and talked about the surgery and her future and what to start in the way of therapy once she has recovered enough. We decided on swim or hydra therapy. It is standard with post op Scoliosis surgery to start with pool therapy.

As I write this we are 12 days out from surgery. 10 days until until we drive to St Louis. We are trying our best to come to terms with it. As always I am not nearly as strong as she is. She continues to amaze me every moment of every day. I bitch and moan and whine over my back, my neck, my lack of sleep. I don't think even if Abby could complain that she would. She is the strongest, happiest little girl in the world. I know the Rett Syndrome gives her an incredibly high pain tolerance. I just hope it doesn't keep her from being able to express how much pain she is truly in.

I  have been attempting to explain what is happening to her. Every time she just smiles and kisses me. I tell her that we are going to be going to the hospital that is far away soon. I tell her that the doctors are going to help her so her back and legs don't hurt all the time. I tell her that at first it is going to hurt very very bad but Mommy will be there and I will help her all the time. This is when  I always get a smile and a kiss.

She is a very tiny Superwoman. I am in complete awe of her. Every moment. Every day.

Thank you all so much for all of your support, prayers and well wishes. They are appreciated more than I can express.

Friday, January 27, 2017

Abbys Rett Syndrome Journey with Scoliosis

If you have kept up with this blog in the past you know that one of our biggest concerns with Abby has been her scoliosis. We first noticed in when she was at 15 degrees and still in pre-school.

Over the years we have done everything the specialists and other familiars have suggested to keep her strong, keep her walking and keep her spine from bending. As per usual we sometimes get to living our lives and forget that Rett Syndrome is in charge and we are helpless. Though it has never stopped us from swinging at the invisible monster, it has won once again.

When Abby started Middle School this year she became so much more mobile. They followed the IEP to a T and Abby was up and out of her wheelchair as soon as she gets to class. She had to walk to her classes, with an aide and a gait belt of course. She participated in PE three times per week as well as her scheduled PT sessions. I thought there was no way her back would get worse. She was getting so strong.

Then it happened. One day as we were leading her down the hall to the chiropractors table she seemed to be limping. At the time we thought it was because both her aide and I had ahold of an arm and she tends to lean in and not try to carry herself when she gets too much support. The next morning her PT called me and said she really thought Abby's hip was out of place because she was limping and flamingo(ing). She absolutely would not bear weight on it.

We called the specialist in St Louis not knowing what to do. We knew she needed to see an Ortho but we have been seeing the docs in St Louis since they opened the Rett Clinic and hadn't been to Children's Mercy for anything but PT appointments. They sent her to the Ortho here locally and we got xrays the very same day. Unfortunately they showed that Abby's curve which had measured at 45 degrees for a year and a half was now at 55. Her Curve goes to the left in what they used to refer to as an S curve and were now referring to it as a C curve. Her right hip was also out of place and she had stress fractures on the top of her femur. So basically her curve had pulled her hip up and out and the femur has been rubbing on bone. Thank God for a high pain tolerance but I felt like such a horrible Mom because I hadn't noticed.

Within a few days St Louis Ortho had received the xrays and the report and we were on our way to see their hip specialists. A five hour drive and 5 xrays later we were told that there was nothing they could do for her hip until her spine is straightened and that she needed to see the Spine Specialist. As our luck would have it he wasn't in that day so 5 hours back home we went with a note to limit PT and physical activity. I was probably as frustrated as I have ever been.

Flash Forward a few weeks and the Spine Doctor called to let us know surgery could no longer be avoided. She had progressed to 61% from 55% in a week and her lower organs were starting to be affected. The surgery date was set and Preop appts scheduled.

We drove back to St Louis last week and has her pre op appointments. Seven more xrays were taken. 7 tubes of blood. A meeting with Anesthesia and a meeting with the actual surgeon performing the operation. If I tried to pretend, even for a second that I wasn't scared out of my mind Id be lying to you. I did learn that I didn't do this to her. It is the Monster. The nature of the beast.

When Abby was first diagnosed we had someone high up in the Rett world tell us,"People are going to try to tell you to put her in every therapy there is. They will try to tell you you it is a must to keep her strong. Well I'm here to tell you none of it will make any difference and you will be wasting your time. The word you need to remember here is respite. Respite, Respite Respite...."

I remember what an asshole I thought she was for telling me that. I still think it was a shitty thing to say but 10 years later I now know where it came from. The Spine specialist told us that the errors in the connection between brain and body is what causes the scoliosis problems so all the PT and muscle building activities, the swim therapy, the chiropractic and massage,while good for her as a whole were never going to be able to stay or reverse her curve. Even with a very strong core the spine is going to do what the brain tells it to. And the Rett Syndrome brain is kind of a jerk.

I will never regret all the years I kept her in activities. She loved nothing more than riding a horse, except maybe for swimming. She loved the PT sessions and her therapists. These things were her normal. Ive said time and time again that our kids don't get to go outside and play. They don't get to do ballet or cheer. Therapies are their play and socialization. Id do it all again.

So Abby will be having full spinal surgery, rods and spacers and hardware from T-3. 3 vertebra down from her neck clear to her lower lumbar on February 22nd in St Louis. She will also have her hip relocated if that's what you call it and pins set to hold it in place. I can't tell you if she'll walk again but I am sure she'll give it all she has.

As of now we will spend 2 to 3 weeks in the hospital if everything goes well. She will spend the first few days in the PICU. I will be able to stay with her through everything but the surgery. They offered to have her transported, which is customary to a rehab clinic from there for a few weeks before we go home but since I wouldn't be able to stay at her bedside there we will be returning home upon discharge. Once home Abby will be out of school for 8-10 weeks minimum which pretty much ends the school year for her. We have already applied and have been approved for Homebound schooling. A teacher will come out for 5 hours a week and the school nurse will come once weekly to check on her. We will meet after she is home to decide if she will get any therapy at home and that will all depend on doctors orders.

A friend has set up a Go Fund Me Page to assist with the costs of traveling back and forth, hotel stays, funds for me to eat while she is in the hospital and for all the extras we will need to keep her home and in a sterile environment while she recovers.

We have also set up an Amazon Wish List page for those that would rather help with supplies. Those will be delivered directly to our home.

Since October we have had Nursing for 5 hours a week and 6 hours every other Saturday. We are approved for 35 hours a week and will be approved for 12 hours a day once she has the surgery but Home Health in our area is apparently lacking in staff because we have 2 companies that can't seem to staff us for months on end. After Abby has this surgery there is no way I can do this on my own. At least not at first. So if anyone local would like to volunteer to help out we would be eternally grateful. My neck and back will owe you forever.

I will keep everyone updated here and on her Abbysworld or AbbysworldKC Facebook page.

Prayers for all of us would be greatly appreciated.

Friday, January 6, 2017

And We Are Back! Hopefully!

Coming back to the blog is something I have thought about often. There just never seems to be enough time..... But too much time has passed and there have been so many changes I'm sure people will want to stay updated. But first, a little catchup.
its been nearly two years since Ive made a decent post so I wont bore you to tears with every last detail. Here is just a few snipits....

Abby 4th grade, Still such a happy girl.

Abby saying goodbye to aide of 7 years
 Still the coolest kid at Hippotherapy
 Chilling with her new aide
 Always better to ride with RBF
 In the 6th grade now. Watching the sunset in our backyard
 6th grade trip to the pumpkin patch
 Halloween Princess
 Princess and the Peasant
 Flirty Magoo
 Christmas Elf
 So Bubba grew up! Mom and her babies at Christmas!

There are many things going on with Abby. I didn't want to just launch right into them without first letting everyone know that above everything else she is happy and loved. She is flourishing in Jr Hgh and has made the Principles Honor Roll for the first two quarters!

Another blog soon.

Thursday, October 22, 2015

Things to never say to this Special Needs Mom

Sunday, September 13, 2015

Oh she acts just like you-Great! Where can I hide?

As I mentioned in my precious post Abby will be 11 soon and has just started the 5th grade. You know what that means?

Prepubescent attitude. Mood swings. General bitchiness..... Yah I said it, Deal.

So what do you do with a kid like mine who's getting too big for her britches? She cannot speak for the most part. She can't use her hands. She can't sit down by herself or climb in her own bed.  She can't go out with her friends or be left unattended. So taking away her phone she can't hold or speak into wouldn't work. She can't make it to her room on her own and if she did what would I do?  Can't take away anything from a kid that lives trapped in her own body .

So I guess I just let her be pissed and bitchy and deal with it right? Except here's the thing. She's mean. And brave. Just like a typical kid these days. There is no fear of consequence. In my day I was scared to death of my parents. I did what I was told or there were consequences. Bad ones. Typical parents just don't discipline these days so most of her peer models don't mind either. This kid....the one who has no purposeful hand use? She can  pull your hair out or snatch and eye ball with deadly, ninja like accuracy. I'm not gonna do it back . I do the full Ally Mcbeal visual of it though. Makes me feel better anyway.

The best move ? She bites. She is totally sneaky about it though. Even if she's not mad or being pissy. She loves to lean in for a snuggle and come back with a chunk of boob or arm. Leans in for a big wet kissy and bites your lip till it bleeds. Then her evil ass just smiles like,...."You're  welcome."

Ummm thanks?

I guess what I'd like to know from you other Special Needs parents is what do you do? I've tried taking away whatever show she is watching at the time and making her sit. I guess that's one of those stupid time out things the younger generations think works. Yah not so much. My kid doesn't wine and cry. She doesn't stomp her feet. She goes into full you have broken my heart I can't breath, self harm nuclear meltdown. Ever seen one of those puppies? Picture this...her eyes dart back and forth in a total panic...real fear. She starts to rock and tremor....I say tremor because it's not a nervous shake. Something closer to Suge knight is holding me upside down over a balcony type response . Then she screams and cries. Real tears as she hyperventilates and turns colors. Then she will drop and plank out like an abortion protester and start to pull her hair out and bite herself as if..hell I don't know.. Then she will get so upset she will vomit and choke, she is actually that she may die because I've turned off Dora or the Wiggles. There is nothing about it that appears like she's playing me.  I promise I don't say, "just for that I've set off a poison and turned off the oxygen in the room."

But you would think I'd said just that.

So I'm sitting here typing and she's sitting here next to me watching. Looking at the screen then looking at me...searching my eyes. I told her I was writing a blog about how bad she was. Faster than I could  take my next breath she rolled back, growled and kicked my right upside my head.


No seriously. Stop laughing and help me!