Summer Fun!

School is wrapping up, and we are excited for the end of school year festivities as well as our upcoming busy summer!





We braved the pool with Kendall this past weekend, and she did great! I thought the water was a bit cool, but she didn't flinch.

As you can see, she loves, loves, LOVES, the water. I think she will be a true water baby this summer just like her brother.







This last photo was my attempt at letting her splash on her own terms...she wasn't having it. She wanted to be in the big pool with all the action! Once again, I was guilty of underestimating her!

My Boy

My sweet, all-grown-up, snake catching, rough house playing, 10 year old boy made me very proud again last night!

He showcased his original song "Family" at his Spring performance. It is a song he wrote about a month ago for me. Basically, it is a letter written to me about his life, and the trials we've overcome together, and a promise that everything will be Ok, even when he's all grown up. When he first read the lyrics to me, I cried. When he put it to his own guitar music, I sobbed, and when I heard it last night live on stage, with a microphone under lights, I was beaming!

Of course, my camera wouldn't cooperate with me, so I didn't catch it on video. But we have ordered a professional copy. I was able to record his second performance, Davy Crockett and I will share it below.





This weekend with my sweet boy came just in time. I was reminded of his kind, boyish spirit. It almost made me get over the two office referrals (one for fighting, and one for cussing) he received this year, and the constant nagging he required on a daily basis regarding homework and practicing guitar.

He's still my little boy! And since he's been grounded from video games for 2 weeks, he's actually talking to me. Who would have thought?!

Independence...

These past few weeks I have felt sort of lost. Let me explain.

Kamden will be graduating 4th grade this year. He'll be entering the new world of intermediate school next year. Lockers and changing for gym class. We live right across from the school he will be going to, so he will be walking there and home. It is so weird to me. It still feels like he's my baby.



This week he went on a 4th grade school trip for two nights and three days. He had a blast...but I've had to drag the details of the trip out of him. He doesn't want to talk my ear off like he always has!

He gets his advanced brown belt this month, and will be a black belt candidate in 3 months.

This weekend he has a guitar recital. He picked the song he is going to play and sing, and also wrote his own song to perform.

He doesn't want my opinion. He doesn't want me picking out what he will wear, or critiquing his tempo. He wants me to leave him alone!

I don't know how to do that.

Since Kendall started school, even though it's really only 3 hours a day 3 days a week...I kind of feel left out. For the first three years of her life, I've been the coordinator of everything. I've talked to every therapist and person working with her. I've trained every care giver she's had. It's always been my way.

This week when she was at school and I came home I didn't know what to do with myself. I literally walked in circles around my house. I'm not sure if that was in part, depression, or just that I really don't have an identity anymore without my kids.

Fortunately, they are still very young. I know I won't have to have that empty nest feeling for a long, long, time (if ever.) But it has definitely made me think. Lately I've been feeling unimportant. And I don't like that!

I'm thankful for the help I have in our nurses. Very thankful. It has enabled me to be there for every detail of Kendall's care, but at the same time, given me time to spend with Kamden and his extra curricular activities. They have also given me the time needed to invest in my studying. So, I definitely do already do things for myself and away from Kendall (thanks to nursing.) I have been very blessed to be able to be there for every new (sometimes tiny) accomplishment she has.



I know this is the way it should be. I should "spread the love" so to speak, with Kendall's care. It is entirely too much to fall on the shoulders of one person. She has made friends at school that she wouldn't have made at home. They sing to her, push her, and make her laugh. When we talk about school she always has a huge smile and tries to vocalize how much she loves it to us. I wouldn't trade that for anything.



I guess I'm just being selfish. Every parent essentially just wants their kids to be confident and independent. I want both my kids to be happy. So, I will try, REALLY TRY, to loosen the reigns a little bit. It's just not very easy :(

Updates

Life has been crazy busy as usual around our house.





Last weekend we attended the Grand Opening for the Randol Mill No Barriers Playground. It was a beautiful morning for visiting with our friends, playing, swinging, merry-go-rounding, and see-sawing. We also cheered on our friend as he coached a Miracle League game. After that, Kendall spent the night with her Nonnie and Poppy and Justin, Kamden, and I had a wonderful afternoon sitting by the pool and going out to dinner. But, of course, it wasn't at all the same without Kendall :) Justin and I would have enjoyed a full night of sleep if it weren't for our Lab Chloe knocking over the smoker and carrying our brisket for Mother's Day lunch across the yard.





Kendall has had a great week at school so far. She loves going. Her afternoon naps are phasing out, and she is wiped out after dinner. I like that added benefit of school!

The latest broken record I'm hearing (or, rather, reading....on District Letterhead attached to an e-mail and cc'ing each and every decision maker in the District) is that our school District is required to provide Kendall a Free and Appropriate Public Education. (no freaking kidding?!?!) Somehow that translates to some people that the only option is to provide Kendall with traveling nurses and not use an agency the District is contracted with. Whatever. I know I heard (and others in our meeting heard) her say there was a District Policy that reads it isn't allowed. Through a lot of research, I am now armed with a plethora of examples and information that will be attached to my grievance. I spoke with 2 board members off the record who think this is worth looking into. Everyone is concerned with budgets right now. I'm not afraid to keep on until I have decent continuity of care for Kendall. IF the District could offer that, there wouldn't be a problem.

I learned from here on out, I WILL be bringing a tape recorder to meetings, since some people have selective memories. And apparently our District has a CYA mentality, so I guess I'll join in. Game on.

I also learned how frustrating it is to watch someone talk out of both sides of their mouths. If accepting private related services and equipment puts FAPE in jeopardy...how is it OK to do it for 45 days with our nurses, and bring the iPad we own for communication evaluations, and floor chairs so Kendall can participate, and her stander (which we haven't brought yet, but plan to) In an ideal world, we would not worry so much about the laws, and focus more on what is best for Kendall, her teachers, and the rest of the classroom. But I get that we don't live in an ideal world...and our District is way better than most.

I learned this week that when I get back into Education (like when the stars align with Kendall's life and I finish my Master's Program...hopefully in the next 3 years) I will not treat parents condescendingly. I will not use the "learned" dialogue. You know, where you repeat their concerns by saying "what I hear you saying is..." then turn it around and say something completely different. And I definitely won't comment on how young they look.

Ugh..sorry for another rant. I promise I'm finished going public with these things...

Today we went to the Neurologist. He went over her EEG again and said how good it looked. He said there is definitely much more "good" brain activity than there was before. He doesn't think we need to change any meds or get back on the Ketogenic Diet. Thank goodness. He was concerned about the increase in her UTI's, and since she was on the Ketogenic Diet for so long, has ordered another Renal Ultrasound. I'm sure everything will be fine.

So that's all. Still working on taking it one day at a time :)

Neurology and School Update...

Um, Yeah...

I wish I could honestly say that my daughter doesn't hang out in her p.j.'s all day, my husband doesn't wear these tank tops (aka.."wife beaters") around the house after work, or do toe touches on the trampoline... But she does. He does. And it makes me smile. EACH AND EVERY DAY.

Already Absent

Ho Hum. Kendall had a great first day of school. I was told the second day was even better.

She didn't have a fit until music therapy at the very end of the day. This is somewhat surprising to me since she does love music. She did very, very well when we had one on one music therapy last year. However; in the past two months or so, she has developed a huge fear of the guitar. Kamden has to practice in his room with the door closed. Even then she can hear it and freaks out. She also doesn't like groups of people singing or loud instruments...one of the big reasons we haven't been to church!

It's hard to tell what is going to set her off. Somedays she's fine and surprises us, but other days a dog bark will send her into a downward spiral.

She had a runny nose on Tuesday but no fever, so we sent her to school. When I picked her up she had just had her fit, and had snot running down her poor little face. She cried the whole way to the car, but calmed down as we drove to pick up her brother.

Wednesday she woke up and her sugars were off the charts high, so we kept her home. I've been blaming the nose thing on allergies and praying it won't go to her chest. But the fact that her sugars were high made me think she could be fighting something.

Last night she woke up a bunch, and had a ginormous seizure this morning. It was different than normal. Lots of twitching from the right side and big jerks from the left. Very unnerving. I was too tired to video it, and just laid there holding her after her emergency meds until it subsided...45 minutes later. I HATE SEIZURES. Her last one was exactly one week ago.

She's back to herself this morning. I'm planning to follow her lead about school today. It is field day, so our plan was to just drop in for a little while and let her visit with her friends. (I really like the way that sounds!)

So, she's ruined her perfect attendance already! By the way, this is also another reason I think we should be able to use our nursing agency...that way when Kendall's out sick (which will likely be a lot) the district wouldn't have to pay someone to be there the whole week! Just saying.

First Day of School

We woke up this morning to terrible thunder storms which lasted all day. The weather was unseasonably cold. Of course this happens on Kendall's first day. That's how we roll.



Kendall started her day with OT. She's been very eager and a little apprehensive about going to school. Throughout the weekend any time we asked her if she was ready, she said "uh uh" for no.

This morning on the drive there, you could tell she was nervous.

When we got there, she seemed to soak it all in. Her vision team, teachers, and nurses were all ready to go. Daddy met us there too.



And Kendall had a fabulous day. I mean a FABULOUS day.



I expected her to throw a big old fit. She didn't. I expected her to freak the heck out at the singing and music making. But she recovered.

Her teachers sent me pictures through text messages throughout the day. That eased my mind a lot. (Have I mentioned how grateful I am for such an amazing principal and school for Kendall to start her education in!? Well I am. So.Very.Grateful. It has been such an answer to prayers.)

Kendall was making friends and having fun.




I couldn't have asked for a better first day.

Her daddy and I went out for lunch and I had a much needed visit to the chiropractor.

And we are all looking forward to doing it again tomorrow!

Thanks for all the kind words :) IT TAKES A VILLAGE.

Gearing Up!

It is a very cold, rainy, lazy day around here. Justin is sick. The kids are just hanging around playing video games, listening to music, and relaxing.

I've spent the last few hours getting organized for Kendall to start school tomorrow. There has been such a build up for this day...I feel a little sick about it.

I promise I won't be that mom who hovers around the classroom and can't say goodbye. I think it's healthy and wonderful for kids to go to school! I have complete trust in everyone who will be interacting with Kendall. I know this is for the best.

I know she will love it. Maybe not the first day, or second, or tenth. And I would not be surprised to hear that she cries the entire time tomorrow. But eventually she will love it, and I know that.

Her outfit is picked out. Her lunch is packed. Her medications are labeled and organized. Her emergency stash of feeding bags, tubes, Glucagon, Diastat, and Klonnopin are ready to go. Her back pack is stocked with a change of clothes, diapers, gloves, anti-bacterial hand sanitizer.

We are totally prepared.

But how do I prepare myself for the longest afternoon of my life?