Poor Kendall has been sick since Tuesday. She spiked a pretty high fever, her sugars were wacky, and she was extremely cranky. As always, high fevers combined with high blood sugars result in pretty nasty seizure activity. That makes me sad. And exhausted.
Turns out a UTI is the culpret. She gets them all the time, but her reflux contrast study and bladder ultrasounds don't show anything out of the ordinary. I guess little girls tend to get them more, especially when they are 3 and not potty trained, and sit with a pommel everywhere they go.
They were also concerned her throat was red. (I mean, what's a visit to the Dr. without a strep swab?!) I could be wrong, but I think her throat was red because she was screaming so much. Either way, she's on an antibiotic, and we are enduring the waiting game to find out if her urine grows cultures that require us to change up the medication, or if her strep test comes back positive.
She's mostly just groaning and looks miserable. But I'm sure she'll get better. Eventually.
Please keep her in your thoughts. Poor thing can't catch a break!
Last month at our Spacticity Clinic appointment, Kendall started a medication to help with her Dystonia. She began Artane and slowly increased the dose. Today she will be on the max dose which is a half a tablet three times a day, totalling 3mg each day.
Almost immediately we started seeing results. Her left hand opened up a lot more than normal. She almost immediately stopped all the arching she does when in a sitting position. Her toes aren't as balled up anymore, and she has been making a lot of new sounds. She's also back to using her pointer finger to touch things on the iPad.
At first, I thought I was crazy thinking something would work so well so quickly, but others have agreed with my observations!
This is a video of Kendall clearly crossing midline multiple times with a purpose. That purpose is being a little stinker and throwing the washrag I was using to clean her face off onto the floor. Justin and I are totally guilty of using reverse psychology on our ornery 3 year old. If you ask Kendall not to do something, she does it! I think it's kind of cute accompanied with her smile right now....but I'm sure that will change in the future.
We're just proud of her for interacting the way she does, and enjoying being a little girl. She's also back to loving listening to her brother play guitar, so he doesn't have to go outside in the 115 degree heat to practice anymore. Hopefully that will last.
Can you tell who runs the show around this house?!
We've all been walking around in a bit of a haze the past few days. On Saturday morning we woke up to a crime scene one house away. My mom called early in the morning and told us our street corner was on the news due to a shooting. Of course, Kamden was sitting next to me, so we rushed outside to find crime scene tape and police vans in the road. Turns out it was at one of Kamden's best friend's houses. Out of respect for the family, and considering all of my information is hear say, I won't go into detail. Kamden's buddy's dad was shot in the house. It is such a tragedy, and a reminder to hold those you love close, since we never know what tomorrow will bring. One of the sweetest kids I've ever met (who has spent almost every day at our house this summer) lost his dad forever on Saturday. His mom lost her husband, his parents lost their son. And it has rocked our neighborhood. So, please keep their family in your thoughts and prayers.
I woke up this morning to a phone call from our Director of Nursing in our School District. His assistant informed me when I called back that we are now entitled to use our private duty nurse next year at school with Kendall. I'm not sure why this took 6 months, and loads of e-mails to get the answer we wanted...but it did. And I don't want to question anything at this point! I'm thrilled. This is going to be an awesome year for Kendall!
These next few weeks are filled with getting the kids ready for school. We are going on vacation and returning the day before school starts, so I'm trying to get everything in line this week! On Wednesday Kendall is having another examination under anesthesia for her eyes. We hope to get an even more accurate prescription for her ginormous glasses, and discover that her pressures are within a normal range. She will also have to be admitted due to her previous issues with anesthesia....
I've kind of gotten out of the habit of blogging. I guess living life has taken over writing about it, but that can be a good thing :)
I get big ideas. I also have the fire inside me when I get these big ideas, to make sure they come to fruition. If I get a big idea, and someone tries to tell me it's not going to work, I will find every way possible to prove them wrong. I've been this way since I was a little girl. Just ask my mom. It's who I am.
Unfortunately, this last big idea didn't go as I had planned, and I quit. Now, I'm struggling with the fact that I gave up.
So, let me back up. About two months ago, I watched the documentary "Including Samuel." It definitely had me sold on inclusion, and had me convinced that I should join arm in arm with my fellow moms of children with disabilities, and fight the good fight. The view is that this is somewhat of a "Second Civil Rights Movement" I was geared up and ready to challenge all who passed me. About a month or two ago, I attended a small (free) seminar on Inclusion at the ARC. It was a great meeting. The presenter was very knowledgeable based on her own personal journey with her son, and everything there was extremely black and white. I left thinking that full inclusion (with support) was the only way. Someone actually asked if the presenter thought there was ever another way. She basically said no, if the district is equipped with the resources to make it happen.
The combination of these two things really sent me into over-thinking mode. I weighed every option. If I was convicted in the thought that Kendall would and should only start out with full inclusion, it means she wouldn't be in Public Preschool for Children with Disabilities. (the program she's in now) The district we live in believes (and my personal view is EXACTLY the same)that the pre-school programs are for children with disabilities or children who are economically disadvantaged, or have English as a second language. These are public programs designed to give extra special kids, some extra special help. I'm all for it, and grateful we have such programs. But the view I found myself trying to adopt meant, I'd better walk the walk and talk the talk. SO, where would my daughter be going if she were three and didn't qualify for one of the free pre-school programs? She'd go to the same pre-school program my son went to at the church around the corner. (Then, we'd be able to have our nurse there with her full time, and she'd be learning a typical curriculum with other typically developing kids) It was an exceptional program, and he was more than prepared for Kindergarten....
Anyway, I thought Vacation Bible School would be a great way to test the waters. Needless to say, VBS ends at noon, and it is 11:00, and we are home. It didn't work out. But we tried.
There was nothing the church could have done differently. They have a great program director with loads of experience. They have caring volunteers with loving hearts. But they don't have teachers who have been trained on working and adapting things for children with disabilities. Therefore, Kendall was crying at the loud unexpected noises (other 3 year olds were too...) and she wasn't following along with the Bible stories. When I walked by her room with my group of pre-schoolers Kendall and her nurse were in there alone. That broke my heart.
The seven kids in my group were playing with markers, running around, coloring, listening, and full of excitement. They told you when they needed to go to the potty. They interrupted and blurted out answers. They were normal, typical, children. And Kendall is not. Period. There is no way to hide that. She's not like everyone else.
She was stared at. The kids asked questions about her and then moved on to playing with the other kids. The adults stared some more. She wasn't having fun. I wasn't having fun. And our incredible, awesome, loving nurse, would never have said she wasn't having fun. But I'm sure she wasn't.
So, this sunshine and rainbows view I had, and the fire in my belly to make sure this was a great experience for everyone, failed. Miserably. All it did was make me leave thinking this whole idea looks fantastic on paper. But it doesn't work. It doesn't matter if Kendall understands everything going on around her or the other kids all want to try and include her. It wasn't happening.
I came home and had a really good, long cry. I cried because I couldn't bring myself to have a genuinely happy heart helping the kids in my group. (Kendall was in a different class around the corner...maybe if she had been in my group it would have been different) I cried because while the other kids were learning of God's love and the message, all I could think about was why He couldn't have made Kendall like the rest of the kids. When the kids were doing arts and crafts, Kendall was in a room by herself with her nurse because she couldn't get a grip and would have been disturbing the other kids. It sucks. It isn't fair. And all inclusion did for me today was make me (and Kendall) sad.
The ARC seminar mentioned that all special education (and self contained classrooms) does for our kids is put them in "a very special room with very special people." And that only ends them (when they are over 22) in a "very special place with very special people" and as she said "those places aren't so nice." But today I think I like the idea of a very special place, where Kendall doesn't feel so different. And I don't feel so sad.
Don't get me wrong. I'm not giving up on inclusion as a longer-term goal for her. I hope for her to have a plan for inclusion in her next IEP. But I no longer long for her to be in a regular pre-school class. Kendall's happy where she is. And I'd like to keep it that way.
So, sorry this post doesn't have a picture of Kendall smiling, holding hands, and singing songs with other kids her age. I don't have one. I'm giving up on the week at Vacation Bible School after the first day. I'm quitting. It sucked.
I will; however, leave you with a picture of Kendall playing with her "very special" brother at the splash pad last week. None of the other kids would play with her. One mom even moved her child (by the arm) away from Kendall. That wasn't really a fun day either. But we tried.
I guess that's just it. We try. You never know when something might actually work out. And we owe that effort to Kendall. It isn't my job to change the world's view on disabilities. I think I've been blessed with these experiences so that I can work with "extra special children" and understand their "extra special parent's" emotional roller coasters. So, I'll forgo my picket lines for now and continue the course I'm on. Good thing I passed that braille class with an A :) :) :)
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ I wanted to update this, because I tend to rant then move on....I'm bad at responding to comments (actually...I don't even know how to do it on Blogger!)
Thank you all for your comments, e-mails, facebook comments and thoughts. As always, this blog served it's purpose today. It helped me re-cap a situation, so I didn't have to tell the story to my family ten times! It also helped me get out emotions that would have otherwise consumed me.
I heard from friends who I think about often, and my spirits were lifted almost immediately. Thank you to all of you for your support. Thanks also to those of you who can empathize and know these exact feelings. It helps to know you're not alone.
I've said it before, and will continue to say that I feel so blessed that we have such an amazing team of people working with Kendall. I witnessed in my own teaching career people who should not be in education. I also hear horror stories all the time of IEP's gone bad.
Every student is different, ever family is different, and every educator is different.
I wanted to attach the e-mail below (with permission of course!) that I received from Kendall's TVI. (teacher of the visually impaired) It kinda just brought everything full circle for me today. I'm new at this. I'm learning as I go. I'm also a very emotional person and react quickly. And I am so lucky to have people in Kendall's life who can balance that out. It takes a village. And thank goodness I live in the one I do!!
oh, and Angie...our beautiful, smart, compassionate nurse, I would be a crazy person without you. Thanks for being my silent partner in crime :) xoxoxo
Jocalyn, I read your blog a few minutes ago, and I wanted to tell you that I am sorry you and Kendall are having to go through this. I know you know this, but just remember that "inclusion" isnt an all or nothing thing. Just because she may not be ready for all the preschool activities NOW,doesnt mean that she wont be more ready in a year from now. Kendall progressed a lot in the few months that she was in PPCD with tolerating other kids, learning to be a student and dealing with the typical chaos of a classroom. She has 2 more years in PPCD and that really is a long time. The inclusion seminar that you went to was good information, but that doenst mean it was exactly what is best for Kendall. There are extremes in every situation. If you look at inclusion as a spectrum and not an "all or nothing" or a "pass/fail" situation, then you can see that Kendall DOES fit into the inclusion game. I taught kids in "those special classes" for 12 years before I got into the vision program, and I am telling you that as long as the program is run the way it should be run, that a lot of ground can be covered more efficiently than in so-called "regular classes". I am sad that our educational system has not evolved enough that we still consider "special education" classes as somehow 'less' than regular education. Kids of all ability levels deserve a classroom that fits their needs, and those classrooms should NEVER be counted as "less": than the regular ed programs. I wish with all my heart, I could change that perception. Jocalyn, I want you to know, that I do believe that Kendall will continue to learn and progress in whatever setting she is in. I see her someday in a classroom using technology to express her ideas, needs and opinions. Will she learn "differently"? Some people might say so...but I have to wonder... who is she being compared to? There is no other Kendall Briggs to compare her to,,, so the way I see it, she is learning the way Kendall Briggs was meant to learn. The point is SHE IS LEARNING. :) I cant wait to see you both tomorrow. I just wanted you to know that I am thinking about you both and praying that whatever you decide for Kendall, that you will have peace and know that you are an amazing mommy... Sincerely, Terri
I'm super excited to officially announce I am back to the land of the living! My braille final is tomorrow. I have busted my butt studying, practicing, and missing out on all things summer-fun related.
I may seem a little premature posting this until my actual final is complete, and the class passed (with an official A!) but I'm kinda at the point where I don't care! If I bomb the exam tomorrow, it certainly wasn't because I didn't give it my all and prepare, study, practice, and dream braille! I think in dots and have been tapping my fingers like a crazy person. And I am sooo thrilled that stinkin class is over tomorrow.
Like I mentioned before my "blog idea" part of my brain is bursting at the seams. I have so much to share about Kendall and so many fun pictures to share of both my kids. I've been thinking a lot about school/nursing, inclusion, ipad scams, VACATION, new equipment, my daughter's silly personality and sense of humor. I absolutely can't wait to get back into the blogging world! Kendall will be attending Vacation Bible School next week (she's a few months shy of the age limit, but I promised to teach a class if she could go!) So after tomorrow, officially, I will be back to enjoying life. I may even be able to keep up with my grocery shopping and remembering to feed my dogs.
So tonight I am able to put my braille books away, file all my notes until I need them again to study for the State Exam (which...by the way is the Saturday morning after a much anticipated Friday night TRAIN concert with my sister...go figure) I plan to enjoy the rest of the week working on my tan, playing with my babies, and living happy! Without a textbook or flashcards next to me!
We are very open about our journey with Kendall. We're happy to answer any questions, and welcome all your comments! The one thing we don't want is to be isolated from our friends and family. I've been that person who thinks it is easier to just ignore a child with special needs and their family. I've feared hearing their story. I've been guilty of looking through a child with special needs. I've also thought and said "how on earth do you deal everyday?" Although it certainly isn't easy, we are a normal family...celebrating all the milestones our daughter hits (and maybe cheering a little louder in the process!) Let me tell you...it's been a long road with many bumps but the love and support we receive daily is what keeps us truckin'! Click here for the full story on our precious baby girl Kendall Ann, or scroll down for the quick recap! Thanks for visiting!
more music please!
clearly before keto diet and diabetes
Kendall Ann has blessed our lives in so many ways. She is truly a gift from God and has proven herself to be a fighter from the beginning. She was born with many neurological and optical abnormalities, which we now know is due to a stroke in utero...probably due to her Factor V Leiden mutation and two copies of the MTHFR gene (1-14-09).Oh, and NOW she has Type 1 Diabetes (8-19-09) And NOW (12-16-10) she has problems with her Mitochondria ... and NOW (2-11-13) a neurogenic bladder resulting in a vesicostomy. Of course there is apossibility of a Mitochondrial Disorder, and a possibility CDLK5 caused all the problems and Mito secondary...but we will never know, because we've decided no more testing! When she was born she came right home...no NICU stay...and we had no idea anything was wrong! She has undergone numerous hospital stays and a number of surgeries, but through it all, she has maintained a smile that wins the hearts of everyone who meets her. Please join us in our journey of life with a special little girl full of spunk and personality who happens to have multiple disabilities.
I like to say I'm a party- girl-turned-career-girl-turned-stay-at-home-mom to a son who's gifted and talented, and a daughter with special needs. My hubby levels me out, and I'm a lucky girl to have found him.(I kissed a lot of frogs!)
I love my life and all it's chaos. My family and close knit group of friends help me get through every day! I'm getting better accepting that God's plan isn't always my plan...and alcohol sometimes helps :)