Ramp and Switch Toy Fun!

Since the seizures have decreased, Kendall has been playing like crazy. She wants to be engaged pretty much ALL the time. She absolutely loves her switch toys. Its great to see her having fun on her own too. Our new OT has been great for Kendall. She told us to scrap the old hand splints and she's creating new ones for her. Having OT twice a week has been great and we're seeing huge benefits from it. Kendall will even hold her sippy cup on her own (and drink from it!) just for this OT!

The ramp Poppy made was a bit frightening for Kendall at first. I think she's warming up to it now though. We had to decrease the incline to prevent her from sliding down it! Now, she has to work a little bit harder, but she will (with the help of gravity) scoot down it. She gets very proud of herself when she does. She just has to be in the right mood.

Feeding continues to be an issue. She has been getting her calories...it just takes a while.

Nursing has worked itself out and I'm getting used to it. We have a delightful nurse who is so kind and compassionate with Kendall (and me!) She comes on Tuesdays, Fridays, and some Saturdays. Hopefully we will be able to continue having her. She cooked a wonderful Lebanese dinner for us tonight (yes, she cooked and I watched! Totally not in her job description, but I think I scarred her last week when she watched me make a meat loaf...she probably thinks I need help...but I'm open to free cooking lessons!) She's fluent in German (guess that doesn't really have anything to do with anything...I just think its cool!), and really clicks with Kendall. She gets her to eat, and also participated in therapy today. She's definitely an answer to prayers. I think we make a pretty good team during the day!

My mom has started her treatments, and she has been very run down and ill. This is just the beginning, so please send some extra prayers her way. I know if anybody is tough enough to live through this its my mom...I just hate to think of her feeling badly all the time. I'm sure there will be good days and bad days. Hopefully more good than bad.

Fun Weekend

We had a fun weekend. Kendall, Kamden, Justin, and I went to Dave and Busters Friday evening then to get ice cream. Kam and Justin played enough video games to last a lifetime, and Kendall and I enjoyed watching. Thankfully Kendall likes loud noises, lights, and chaos so we were able to tag along.

Saturday we went to the Mansfield Pecan Festival. We had quite a walk to get there from where we parked and it was a little too hot for Kendall, but Kamden had fun.

I thought I needed to participate in something positive for our city...since I've been a thorn in the side of pretty much the entire School Board and City Council this past week. Thankfully, my persistence seems to have paid off. There was a nice article in the paper regarding the parking debacle in the front of my house due the poor planning and development of the school. I spoke at the School Board meeting early last week too...and I guess they listened. They are now encouraging parents to pick their kids up in the front of the school so walkers and bike riders can safely cross the street. (now whether or not the parents follow the request is another story.) They put no parking signs across the street and will be adding more to my side of the street as well. I can't tell you how happy I am that's over. It's been an uncomfortable situation because I know a lot of the people who park on our street... Hopefully they know I'm just looking out for my family...and I KNOW they would have done the same thing... If not, I don't really care!

Kendall has been eating better. We were right. She's over the bottle and KetoCal. We've been giving her fluid out of a sippy cup, and she's eating 3 250 calorie meals a day...like a normal person! We will need to add some supplements since she's not getting everything she needs witht the KetoCal, but I'm relieved. She's been taking her cream and flavored water beverages like a champ. She still likes her egg-nog like ice cream, but isn't crazy about the fruit smoothies. Probably because they have KetoCal! So I feel encouraged with her eating. And I pray this continues.

Tomorrow night....My sister is taking Liz, Theresa, and I to the Cowboy's game! I'm super excited to see the new stadium and be there for the first Monday Night Football game!! Pictures will surely follow!

Hooray!

It's Friday!

Enjoy your weekend...we plan to.

Pluggin Along

The past few days have continued to be "trying" to say the least.



Kendall fights us eating, and is going through this phase where she wants to be held AND bounced all the time. There have been a few days where I've been at my wits end with this...



Thankfully, Justin is such an amazing dad. He comes home from work at completely takes over. I don't know what I'd do if he didn't. It is physically exhausting holding her and bouncing her and singing and walking miles outside with her in her chair. I feel like all I do is feed her, move her, sing, and repeat. ALL DAY!!!



Yesterday I had to remind myself the progress she's made. She hasn't had a seizure in almost 2 weeks. And even before that, they were reduced by 98% on the Ketogenic diet. So if she needs a little (ok a lot) of extra attention as she comes into her own, she deserves to get it.



I've had little time to blog or do really anything these past few days. Therapy has been kicked into overdrive! And while it seems like we have more appointments, it has actually lifted weight off of my shoulders since I'm not the only one responsible for stretching, etc. SO I am very happy with the decision to make changes in our therapy schedule. In all kids the first 3 years are the most crucial with development, and in special kids...even more so.



We have some exciting new pieces of equipment coming soon. I will post on those one by one as they arrive and show pictures. I'm thrilled Kendall's Poppy is retired! He's the best handy man and is building Kendall a really cool ramp.



Oh, and nursing...to make a long story short...we are accepting help only 3 days a week now. I prayed a lot about this decision but still have mixed emotions. I know I need a little help, but I have a hard time sharing Kendall! So this is definitely going to take some time.

Please keep Kendall in your prayers...more eating, less fussing...and prayers for mommy's patience too!

Kidz...

Everyone knows there's no road-map when it comes to parenting. In fact, there aren't even any road signs when parenting a child with special needs. So as I navigate my way through this special needs world, I find much comfort and direction from other moms on similar excursions.

One site in particular has always given me positive encouragement. So, I am delighted I've been given the opportunity to occasionally contribute to this site! Kidz connects parents, promotes awareness, and encourages everyone. So, check it out if ya haven't already!!!

Dear Kendall,

Food is not a bad thing. Food helps you to grow and be strong. You must have food to live.

Mommy and Daddy are not trying to poison you. We are trying to keep you healthy, maintain Ketosis, and keep your body functioning.

I realize you are coming up on the Terrible Two's and at this age your brother wouldn't eat or drink either, but you are a little different. You must eat. You must drink. Fighting Mommy every feeding is unacceptable. Stiffening your entire body and arching your back is not nice. It makes her want to pull her hair out. It makes her lose sleep with worry for you. Kendall, please, please, please, eat!

I've ordered you new flavorings from Bickman. Maybe strawberry KetoCal will help. This week, I promise you will have more of a variety of solid foods after I spend the entire day pureeing meats and vegetables. Yes, they will be drenched in Ranch dressing or butter, but that's better than seizures...right?

With you having super high Ketones and Diabetes, it is even more important for you to eat and drink. So, Kendall, please, lets leave this phase of no eating behind. Starting TODAY.

Love,
Mom

Working on Character...

"Character cannot be developed in ease and quiet. Only through experiences of trial and suffering can the soul be strengthened, vision cleared, ambition inspired, and success achieved."

~Helen Keller

Tug of War

As if I have time for it, I'm now in a fight with my city and school board regarding opening a back entrance for a newly built school. People park in front of my house everyday. Kids walk through my yard, I'm OK with that. I just close the blinds so the dogs don't go crazy and I go in the other room with Kendall twice a day for 1.5 hours.

But now they want to open the back entrance as another way to pick up the kids. Long story short, it is going to get worse.

I don't want to be "that" citizen. The one who makes a huge deal out of something. I hate confrontation. But I have to. See, my dad can't even get in our driveway when people are blocking it. The kids are crossing where there is no crosswalk. It is dangerous on all fronts. Not to mention... I shutter to think what would happen if we ever had a seizure we couldn't stop and I had to have an emergency vehicle pull up to my house.

So here I go. I'm Cooper (the little dog) trying to put up a good fight even though he's old and tired. And our mean city and school board are bullying me and throwing their weight around. I so want to throw in the towel, but I won't. Not without a good fight. Ho hum.

Singin' in the Rain

Kendall and I just returned from Target...the greatest place on earth.

I was able to get a coffee and walk around aimlessly and mindlessly for about an hour! I only went in for baby wipes and coffee. I didn't leave with a ton of stuff. Pushing Kendall in her chair has hindered my compulsive buying habit. (well, that and the fact I'm not working!) But we had a grand time! She sang in the isles. She played in the toy section. She tried on shoes. We people watched.

When we left we got rained on. I was so worried about Kendall, when I pulled her out of her chair I looked down at my baby covered in raindrops and she was laughing. Hysterically. It was a beautiful sight.

I never thought I would enjoy a trip to Target so much. When we arrived home, we stood in the driveway and sang songs in the sprinkles.

Tomorrow we are going to the library for story time.

The nurse situation is about the same. But I'm exhausted with the subject. I've run a hundred scenario's in my head. Justin and I have discussed it into the dirt. I need to be more decisive. I need to let the nurses help. I need to trust them. I need to stop sending them home early! But I will go at my own pace. If I've learned anything in this journey, its to always go with my gut. So I fully plan on doing that. Even if it takes 8 more weeks.

The Nurse...take one.

Today was, um interesting. Our nurse was late (annoying to me cause Kendall doesn't wake up until 9 and I wanted to go back to sleep.) After she arrived, she visited with us for a while. She has a healthy granddaughter Kendall's age, so I got to listen to that for most of the day (sigh) in-between her soap-watching of course.

She was fine. I mean, I guess. I'm new at this. She was really kind and easy to get along with. She drove for 70 miles from her home to get here, so I doubt this will be a permanent assignment for her anyway. That part is frustrating because why did I spend the day trying to educate her on the way we do things with Kendall if she won't be back? I don't have time for that.

Tomorrow we have Ossie. According to the nurse today, he's eye candy. Sounds good to me. If that doesn't work, then I have one other option for someone I already know, and if that doesn't work out...I'm finished trying. This is exhausting. It sounded like a good idea....now I'm not so sure.

Any of you have advice on the tell tale signs of finding the "right" fit? This is worse than swimsuit shopping.

A Rainy Weekend

We had a very lazy day today. I managed to take both a bath and a nap. Kamden babysat his sister in his room while I finished some laundry. The picture above is the two of them snuggling and watching TV in Kams room. Kamden has a way with her. She can be very fussy and as soon as Kamden says her name, she's all smiles.

She's been eating a little better, but it still requires a lot of patience to feed her. I think she's fattened up a little...don't you? I put her in her swing which we haven't used in forever cause I can't remember to get batteries, and she still loves it. She has also been doing really well in her Child Rite chair with the tray. Her head and trunk control is really improving!

We have a very busy week with OT Monday and Wednesday, and PT Tuesday and Thursday, and our Nutritionist will be here Tuesday...and I know there's more, but I dont have my calendar in front of me! Our nurse will be starting tomorrow. I'm extremely anxious about it. The past few weeks we've perfected our routine and the thought of adding someone else to the mix makes me nervous. I just hope whomever this person is, she will have the magic touch needed to feed Kendall and get her meds down her....and tolerate her constant need to be held and moved around. THAT is the hard part. The shots and Diabetes stuff is pretty easy to me now. The hard part is holding Kendall while I make and weigh her meals, etc. I just need to take a deep breath and see how it goes...right?! I think I've watched one too many Oprah specials on home health nurses gone bad! That is why trusting someone to be here with her alone will take a little bit of time I'm sure.

Things That Make Me Smile...

1...Justin

2...Kendall smiling in her wheelchair for no apparent reason.

3...Kamden coming home with a 100% on a spelling test and math test we've worked on (err, fought about) all week.

4...Emily Dickinson (if you don't know that already!)

5...TRAIN, Counting Crows, and Tori Amos.

6...2 glasses of Kendall Jackson Cabernet (not one but two.)

7...Running.

8...A clean kitchen and finished laundry.

9...Barack Obama.

10... Friday nights at home (see the norm below.)

And if I could add some things to make all of these things even better (besides Justin, Kamden, Kendall, Cooper, and Chloe) it would be my mom, dad, kristin, john, connie, coy, josh, val, amber, liz, theresa, jill, becky, sarah, aileen, holly, jillian, megan, christian, erin, reality T.V., a good book, my special raft in our pool, and beer.

See, I'm a simple gal.

Good News...

Caleigh and Holly came over this afternoon. They brought much needed good luck with them....cause we had a call from our Metabolic Geneticist while they were here. (I missed the call early in the day and it was the actual Dr. not an assistant! Usually that only means bad news.) Fortunately, we were informed that the Mitochondrial blood work they did all came back normal. She said she deals a lot with kids with Mitochondrial disease...and Kendall doesn't fit the mold. She also boldly said she knows better than the Neurologists and Endocrinologists. SO, praise God!!!

The past few days have been challenging for me. I guess mostly because Kendall's been in pretty sour moods between 3-5 every day. This also happens to be the most chaotic time of the day. She's been eating well, but of course, her blood sugars are all whacked out. So not much sleeping at night. Its hard on everyone.

We also found out 40 hours a week nursing has been approved and is ready to go. They will be sending our nurse out on Monday. Should be interesting. My understanding is that finding the right person will be a process. We'll see how it goes...

I just have to say that in this Special Needs world I have met some really amazing people. The therapists and case workers have become like family to me. Some of them just started reading my blog...but even if I didn't know that...I would still write the same thing! The ones here today in particular. Lindsey...who's been with us since day one in this journey...you have totally seen me at my worst and have always remained positive and encouraging! I am so blessed you came into our lives when you did. You are really good at what you do. And, Holly. Another mom who totally understands my vent sessions...and is filled with solutions (probably cause she's been there!) I'm so glad I stalked you at the Beeping Easter Egg Hunt! Mushy gushy really isn't my style, but please know your family means so much to mine.

Today was a good day. My cup is overflowing with love and friendship. :)

Sitting

We went to the Endo. this morning for our follow up. The appointment was early early because our Dr. was leaving town for the day and didn't want us to be rushed! (again...LOVE this man!)

He asked about seizures and I was able to tell him they are still semi-controlled! Last week I only had to give her Klonnopin twice. (I know I've complained about those nasty things, but truthfully, I'll take two clusters a week compared to the all day every day clusters we had before the Ketogenic Diet!)

He reviewed our numbers again and made a few more adjustments. He thinks Kendall looks good and was interested in seeing if her alertness and/or development seemed improved since the blood sugars were evening out. Justin quickly piped in that yesterday she was sitting unassisted! And, yes, its true. I had her on her big girl bed and she was sitting on her own for at least 15 seconds. She was smiling and laughing away at herself. It wasn't a fluke, or me balancing her...she was sitting!

So when we got home this morning I worked with her some more. She was sitting really well and for long periods of time! Of course by the time I got my camera the battery was dead, then I couldn't find the other one, and I walked back into her room to this:

Sound asleep! Guess she was pooped. Isn't she getting super long though? They measured her HC today and it was at 43 cm...I used to obsess about that, but I don't care anymore. As long as she's not going to look like Beetlejuice, I'm OK with it. Her head circumference is in the normal range for a 6 month old! I'm over it. She weighs 21 pounds. She lost like 2 pounds during her hospital stay.

Our Dr. also asked if any of the Mitochondrial blood work came back. I hadn't heard anything yet, so today I called our Geneticist. Still waiting to hear back from her. Although, I'd be fine not knowing.

Thanks for checking in. Each day is getting better than the one before.

Overdue Photos!

Kendall had a rough night last night. Ok, I had a rough night, Kendall was having a party in her crib. She didn't go to sleep until after 3:30am. She wasn't crying or anything, just singing and dancing away. I have no idea why she wouldn't sleep. I started to get really worried that if she didn't sleep seizures would show their ugly faces. I was right. This morning around 8:00, they came back with a vengeance. I gave a dose of Klonnopin and she went back to sleep for 2 hours. I hate that medication. It makes her so floppy and drooly, and just a zombie. But I guess its better than seizures. She's eaten OK, but won't go down for a nap.

Justin went to the farm early this morning, and my mother-in-law (Nonny) came over this morning to play with Kendall. She has mustered a few grins and giggles for Nonny but she's still not herself. I want my Kendall back.

Yesterday Kamden and I had a mommy/son day at the lake. It was much needed one on one time. Our friends were camping all weekend so we joined them for the day. He had a blast playing with the friends he's known since he was little, fishing, and going out on the boat. And I had a great time being Kamden's mom instead of Kendall's nurse! (Nurse Justin filled in for the day and did a great job!) It was interesting to me watching Kamden play...he's really growing up....and toughening up a lot. I have a young man now! But he still held my hand in the car on the way home :)

I haven't turned my camera on the entire week since we've been home, guess I've been too busy. But here are some photos I finally downloaded!

Before we went to the hospital last Sunday, Kendall enjoyed her friends Luke and Carter's 1st birthday party:

She really wanted a piece of chocolate cake:The next night we were admitted into the hospital, but Kendall didn't seem to mind:Until a few days later when she wouldn't stop crying...Nonna and Grandad stepped in Monday night to help! This IV train was accompanied with songs and foot stomping and hand clapping:
Here's my big boy yesterday at the lake. I think he was playing football (which scares Mommy to death!)


The kids getting ready to go out on the boat:

Intollerance

Does being intollerant of intollerant people make me a hypocrite?

Its not unusual for me to have to bite my tounge on a daily basis when it comes to politics. Pretty much all of my friends are conservative Republicans. I guess it comes with the territory of living in Texas and going to college at a private Christian university. But yesterday my blood started to boil.

Since I've been so consumed with caring for Kendall and figuring everything out this week, I haven't read the paper or watched the news really at all. Justin came home last night a little irritated about things he read on his gun forum (see, my husband doesn't do Facebook or blogging, barely uses his cell phone, and couldn't be bothered with e-mail outside of work....but he is interested in guns. At first I thought it was just because of hunting and liking rifles, then I realized he's obsessed with handguns and even more scary guns too...but I love him anyway) SO he's on this forum with people he shoots with. I guess they talk about buying guns, shooting, tips, I don't know. But apparently it has turned into a "Hate Obama" forum. Even worse, last week there were a number of disparenging comments about Ted Kennedy. That upset Justin for obvious reasons. (magnified more so since we have a daughter with Special Needs) So last night they were in an uproar about Obama speaking in schools. (this apperently has been going on for a while...but I had no idea!) I just kind of stood there with my mouth open as I read these comments. The fact that there are people in the world that would teach their children to hate infuriates me. (oh, and its their moderator who's makes the comments....so there's no point in trying to keep politics and religion out of their posts)

What is so bad about the President of the United States addressing schools to stress the importance of education?! If it were George Bush last year I wouln't have minded. I would have been happy he was taking interest in public education. I guess I just don't get it.

Then this morning I realized we weren't the only people who don't get it. One of my favorite bloggers at Fighting Monsters With Rubber Swords had a few things to say about it too! Much better than I could. He lives near me and I'm happy he's giving it to his school district. And, if you feel so inclined scroll down and read his post about Ted Kennedy.

OK thats the end of my rant.

Kendall slept well last night. Seizures are still at bay. Blood sugars are leveling. Another day in paradise.

A Better Day

Kendall is doing better today. So am I.

I had a friend come visit today. It broke up the day at a perfect time. Just having someone to hold Kendall and gush over her made me not feel like I was on a deserted island. I've kind felt like that a lot this week. So big thanks to Liz for taking time out of her day to just rock Kendall and play her favorite tunes on her iphone!

Seizures have not shown their ugly faces today. Blood sugars are still confusing to me. The poor Diabetic Educators are probably wishing they never met us. I speak with them at ungodly hours through the night, then first thing when we wake up at 6am. We've made so many changes, and Kendall is so confusing to everyone, they've changed her protocol 5 times, and even created a new form just for her. Hopefully this will all be settled down by the time we make it to see our Dr. on Tuesday.

Kamden has been a trooper. Although I am more crabby than normal, he's been a champ. Reading his reading minutes without a fuss and completing his homework on time! He received his blue belt last week and is more hyped about Karate than normal. Thanks to grandad, he's been able to play on the playground every day after school and get to Karate during the week. I'm sure eventually I will get into the swing of things, but right now I don't feel comfortable taking Kendall too far from home.

Nonna is over right now working with Kendall. I can hear her squealing gleefully in the other room (Kendall that is...well, and Nonna too!)

Thank God for our amazing support system. And my amazing husband who comes home after a long day at work and takes over without the blink of an eye so I can go running, and prepare lunches and meals for the next day every evening!

We're getting into a new routine.

Thanks for your continued prayers.

The War Continues

I am fighting a war. My daughter has seizures that sneak out of nowhere and make our world come to a screeching halt. Just when you think they are gone, they come along again silently without rhyme or reason.

I am fighting another war at the same time. Just when you think you have a handle on her blood sugars they rise and fall with no rhyme or reason and bring our world to a screeching halt.

I'll continue to fight for my daughter, but just how long before it will get worked out? Will we be doing this forever? I thought we had it rough before, but this is harder than I ever imagined.

I was OK with not being able to leave Kendall with just anyone, tending to her very special needs all day, and battling her eating, administering medication, cooking, weighing, chopping the ingredients for her meals, getting her to therapies and making sure we were following through at home. I was OK with all of that...but I had some breaks.

Now it feels like there are no breaks. I can't even go in the other room without making sure I have a video monitor on her crib while she's sleeping. I can't take her for a walk without making sure I have emergency seizure meds. I can't go to a Dr.'s appointment without packing syringes, insulin, blood glucose lancets, ketone strips, blood glucose strips, glucometer, emergency seizure meds, bottles of a 4:1 ratio in a cooler. I can't sleep without waking every hour to check on her. How long can one person do this?

If you can't tell, last night and today have been hell. Her blood fluctuates way more than anyone anticipated. This morning her seizures returned. Not the long tonic clonic terrifying one (thank God) but different. And not her usual quick head drop arms fly over ones either. These are more stretched out. Less intense, but almost in slow motion. Her eyes flutter and her left arm and leg jolt up.

I called the Neurologists office where the nurse told me to give Diastat. I knew that was wrong. She was responsive. So I took it upon myself to give her 1/2 of a .25 mg Klonnopin. She fell asleep and they stopped. She woke up and they came back. None of the nurses know what to tell me. And once again, I AM NOT A DR OR A NURSE. NEVER WANTED TO BE. I just want my daughter to be comfortable. I don't care if she ever rolls over with purpose or sits or talks. I used to care about all that. But now I just want her to be like she used to be. Global developmental delays with seizures. PERIOD.

And believe it or not, throughout the hell of being stuck more than once literally every other hour, she's still smiling. Guess I need to learn a thing of two from my 16 month old.

She's BAAACK

We have our Kendall back. Smiles, belly laughs, improved head control, more sleep, and best of all, she ate 5 4oz bottles of KetoCal and had 100 calories of beef and broccoli, and 100 calories of custard yesterday. Praying today is more of the same.

She is sleeping better, but we aren't. Last night we had another blood sugar scare. We set our alarms twice during the night to keep tabs on the blood glucose and blood ketones. Last night she went to 275 after running fairly high all night. Then we corrected it with her diluted Humalog and checked her again it was down to 54. Thankfully we (I...Justin slept) corrected it with juice and checked her for the next two hours. After calling the diabetic educator at 3:00am we decided to increase her morning dose of Lantus to one and a half units. Hopefully today they will even out. I worry about her Ketones since she had 3 oz. of apple juice. They have been ranging from 5-8 but have also gotten as low as 4. (regular diabetics that have ketones over 1.5 immediately go to the emergency room!) As you can see, this is really complex. Also, something I do not understand and neither do the nurses, her ketones go up when juice is given and when insulin is given?!?!

Anyway, we had a few therapy visitors yesterday. Today I cancelled therapies in hopes Kendall can get more rest. But I have two separate nurses coming today. One for an evaluation for increased hours, and the other for our scheduled visit. Having a nurse at least sets my mind at ease that her blood pressure and heart rate are good, and the congestion isn't in her chest.

We are getting back to a normal routine. I love being home. Not feeling like I have to rush off to work or get things finished by a deadline has really changed my mental state. I'm at peace and just enjoying my family and home. (except the dogs)

We march on.