Arts and Crafts

Kendall enjoys them. But she enjoys clean-up even more. She was laughing, splashing and flicking water everywhere when I placed it on the tray to clean her up. My battery died, so this is the only picture I was able to snap. She's a turkey for sure :)

Endo Appt.

It was a crazy morning, but I successfully made it to our Endocrine appointment with Kendall on time. Got out the door on my own with everything in tow...only to find out our appointment wasn't today. Fortunately, our Endocrinologist is wonderful and told the front desk person he'd love to see us...and we didn't even have to ask...We love him!!

So we reviewed her sugars over the past month. It seems its not as bad as I thought. He was delighted she corrects so nicely when she does need to correct, so we are yet again, going to wait on the insulin pump. I know. I know. I just don't really want to have another thing attached to her that we have to keep up with if I don't have to!

Her A1C levels are excellent. I reviewed her labs from Neuro and he said the triglycerides were high because of the Diabetes. Probably not the diet. SO...kinda makes me wonder if Neuro remembers who we are!! Anyway, the new ratio seems to be working out fine, so we will continue.

I received free supplies from the Diabetic Educators and that should tide me over for a while. They gave me a new form a Title 19 form that the pharmacy should be able to use to bill Medicaid secondary for DME. I took it to the pharmacy that Medicaid and Aetna recommended and hmh...they've never seen that form before. I contacted the CVS help desk, and they said it should be fine. The pharmacist looked at me confused. I contacted the supervising pharmacist, who told me we couldn't bill Aetna then Medicaid secondary. (see the vicious circle...NOBODY knows what the hell is going on.)

Our Dr. asked if I felt like I needed to speak with his clincal therapist (she's the one who I guess helps parents deal with the diagnosis) I said no, but then she came in to say hi anyway. Then I asked her if I could have some tips on anger management in pharmacies. She empathized. Guess I need to pick up deep breathing exercises on my own.

All in all it was a good appointment. Her blood pressure was fine today. He's not concerned from a kidney standpoint of her urine retention. He thinks its the bladder. Which puts us back to an appointment with the urologist who blames everything on poop.

After the appointment Justin took Kendall to the car and I ran down to see Corey, our precious little friend still in the ICU with viral encephalitis. Unfortunately I witnessed a seizure and got a taste of what they have been going through. He has been having 2 violent seizures every hour. They are giving him Topamax and Keppra along with the Adavan. My friend called today to tell me they may be inducing a coma through a Phenobarbital drip. This is a little boy who was completely healthy until a week ago. His mommy and mi mi are struggling with making sense of it all, so please keep them in your prayers. Though they are in good hands at Cooks, the ICU is a miserable place to be.

Dental Appointment

Kendall had a dental appointment today. She did remarkably well. Oddly enough, she doesn't have any oral aversions. She didn't even gag when they put fluoride on her teeth. They said to keep doing what we're doing because her teeth look great (ha! I brush them once a day in the bathtub for all of 3 seconds!)

He said the grinding should stop soon since she's almost finished cutting 4 eye teeth. And actually, the grinding can be a good thing for her at this point. Don't quite understand that. But whatever.

Her weird thrashing movements are still around. I can't seem to catch them on video. I'll keep trying though. I think its pretty important we figure out what it means.

I'm doing a little better today than yesterday. Both our nurses were sick last week, so I didn't have any breaks. I quickly discovered how important that has become to my mental state. Just getting out for a quick jog, going to the gym, or shopping during the day while she's sleeping makes a huge difference for me. I don't know how moms do it with younger children and a special needs child. My hands are full with 2 dogs, a healthy 9 year old and Kendall.

We are eagerly awaiting our Endocrine appointment this week. We have lots of questions and hope to resolve her fluctuating blood sugars.

Til then...

Prayers for Friends...

This weekend, I found myself very emotional over the recent struggles of dear friends. Why should little ones have to go through so much pain and suffering? It just isn't fair. This past week and this weekend my heart has been breaking and I've become very discouraged with everything. I get it. God's plan isn't always our plan. What doesn't kill you makes you stronger. God doesn't give you more than you can handle.....BUT...... Little ones shouldn't have to hurt. Their parent's shouldn't have to deal with such horrible situations. Some days it just seems like too much.

I've always been a praying woman. Not just when things are tough. I pretty much have conversations with God all the time. But I have to admit, this week, I feel angry with everything. I'm at a loss of what to do with all these emotions. The tears are pouring out. It's overwhelming. Especially when bad things are happening to kids so close to my heart. It sucks when your hands are tied and there's absolutely nothing you can do. It sucks to watch your friends go through such hard times. It sucks to turn another corner only to find out more bad news. It sucks.

So, I'd like to ask all of you to lift these precious babies up in your prayers as well. I believe in prayer. I believe God heals. I've witnessed it. And I know its important not to lose your faith in times of struggle. Its just terribly hard not to. For me. At this time anyway. Kids should not hurt. They just shouldn't. It sucks.

Please remember our dear friends Holly, Eric, and Caleigh as they face some tough decisions in the upcoming weeks.

Please remember Reagan and her family as they still search for answers. That precious baby and her family have been through way too much recently.

Please also remember our Pastor's son Tristan Dasch as he continues his battle with Leukemia. The Lord healed him once, and we pray he will do it again.

And finally, a little boy who is very dear to one of my best friends, Liz. His name is Corey. He is 3 and full of spunk and life. Last week he was admitted into the ICU at Cooks with high fevers and seizures. For lack of a better diagnosis, they believe it to be some sort of viral encephalitis. The seizures have not let up. He is now on a ventilator, and struggling. Please pray for fast resolution and healing. And NO long term brain damage.

Odd Movements

Kendall's hanging in there. She hasn't been running a fever, but hasn't exactly been herself either. The hives never returned this week, but neither did her sleep.

She had a nasty round of seizures on Wednesday morning that pretty much wiped her out for the remainder of the day.

Yesterday we went to the Ophthalmologist. I was so looking forward to this appointment because I wanted them all to see her new skill of tracking. She did it right off the bat. They didn't seem to be as excited as I was, but I guess that doesn't matter. The good news is everything checked out OK. I stood my ground on declining the annual examination under anesthesia. My main concern was her pressures in both eyes being high and the risk of glaucoma. He said we could postpone our exam until the summer. I feel confident in that decision. While the exams are not a big deal, Kendall under general anesthesia to me is. She is so complicated that anesthesia is always a big risk. So we have decided to wait. He changed her prescription significantly. She is now a +20 in both eyes. These lenses are going to be huge.

Our Dr. said her eyes are going to grow in proportion to her face. At first it was declared that she had microphthalmalia...but now he thinks they have grown. Her eyes are still very small and too small for in ocular lens implants right now. Maybe someday. So we will wear her glasses with pride. She can see.

I asked about the risks associated with Type 1 Diabetes and her vision. I know there are quite a few. He reiterated that close control and keeping fluctuating blood sugars at bay will be key in avoiding any other vision issues. Another good reason to get on the insulin pump. Then he told me something that made me almost fall over. I read a lot, but admit, with the Diabetes, I just kinda have survival mode. At first it was the one thing she had that I thought would be cut and dry. She needed insulin, we'd make sure she had it....and I left it at that. But he told me there is a high probability in her lifetime that they would cure Type 1 Diabetes. Fascinating.

So, as I mentioned, she is not sleeping. She also has new movements, which I think could be seizures. (story of my life) She grits her teeth, pulls her fists up by her face, and shakes her head from side to side. The verdict is still out around here with that though. She conveniently does it when she wants something, or is in a position she wants out of. Its almost like a frustration thing...but still. Most people laugh when they see it because she looks so agitated. But it makes my heart sink every time. While she's trying to go to sleep, she's been twitching and jerking a lot too.

I'd call our Neuro about this, but honestly, I feel like they don't care anymore about seizures. We have had some relief on the Ketogenic Diet, but still have seizures at least once every 2 weeks. So, if they are changing from Infantile Spasms, you'd think they would want to do another EEG, but he never does when I ask. I don't want any medication added. We have enough organ failure to worry about with her current issues! So I pray this is just a pain thing or something that will phase out very soon.

If We Were a Bearenstein Bears Book...

We would be entitled: TOO MANY VIDEO GAMES.

It seems my son and husband are lost in the video game world. I just don't get it. Kamden won a PS3 at Karate. We recently bought a new TV and moved his Wii into his room with our old TV. They are playing non-stop and I CAN'T TAKE IT ANYMORE!!!

Justin has never really been into video games. I think I took that for granted. But now he's hooked on some stinking game with guns and war and I think its called Modern Warfare, but whatever it is, I think its absurd.

So, that's what's been going on around here. Me having to say the same thing over and over again until they acknowledge me. Its amazing how BOTH of them can tune everything out, and the house could be burning down, and they'd still be thumbing the controllers. Again. Its absurd.

I can't really complain about Justin though. He works hard and isn't one of those guys who has to go out with his friends all the time. (that's me!!) He definitely does pull his weight around here. So, I guess if he needs to play video games as his escape, I can live with it. But I'm hoping its just a phase!!!

School's back tomorrow after a 4 day break for Kamden, so his video game hiatus is officially over. Thank goodness.

Kendall is doing much better. Still lagging in the sleep department...but she's not near as fussy. Her sugars are crazy wacky, and we will be going to the insulin pump after our next appointment for sure. Last night we corrected since she was at 268 and she woke up this morning with a sugar of 36. Ugh. But the hives are gone and her smiles are back. We may have escaped another hospital stay for now.

I'm ready to get back to "normal" and the beautiful weather we are expecting this week sure helps with my spirits.

Hope everyone has a fantastic week.

***by the way*** this is my sill boy pretending to be his sister in her old glasses. nice. its Kendall in another 7 years!!

Hives

Now Kendall has hives. At first we thought she may be getting sick. She has had a runny nose. We thought it may be due to recent exposure to Strep...but that was about a week ago and she hasn't had a fever at all. So hopefully we are in the clear.

The only change in her diet has been the reduction in ratio from 4:1 to 3.5:1. Basically, we are adding 2.6 grams of powdered sugar to her formula. We made this change when her second triglyceride levels came back as 861. Her diet has also changed in that we are replacing saturated fat sources with polyunsaturated or monounsaturated fat sources. (avocado, olive oil, flax seed oil.)

Oddly, this has caused her ketone levels to increase. Her sugars last night went from 270 at 8:00 last night to 320 at 11:00 even after a correction of Humalog. Needless to say, we stayed awake all last night testing her sugars after her second correction of Humalog, which should theoretically only last 4 hours. This morning she slept through a sugar check at 6:00 which came back....wait for it....yep....37. This child is so freaking unpredictable. More than half the time its a guessing game.

As if this wasn't enough, my new fantastic pharmacy failed to deliver. I checked with our Diabetic Educators to find out if there is ANY child in the Dallas/Ft. Worth area who happens to have the same situation with a baby diabetic who has insurance AND Medicaid. There isn't. It seems even the Dr. has encouraged us to drop our insurance and go straight Medicaid through our Medically Dependant Children's Program. That is pretty sad if you ask me. We should have everything covered without co-pays, but we are having difficulty finding a pharmacy with diabetic supplies who is contracted with Aetna and will bill Medicaid secondary for the co-pays. In the mean time, we have $450 a month worth of diabetic supplies. Not sure how we're going to figure this one out...I've never been a very good dancer :) SO, I guess I'll keep making phone calls every day until it is figured out. I hate to drop Insurance on Kendall, since you never know what Medicaid may change to, plus our pediatrician doesn't accept Medicaid either. Ho hum.

So please keep K in your prayers. We want these hives to disappear, and would love to find our where they are coming from. And if her blood sugars keep on this way, we will end up in the hospital, and I CERTAINLY DO NOT WANT THAT!!!!

Here's a picture of Kendall in her stander. I've seen major improvement in her vision recently. As you can see, she will turn her head to look at something if she really wants to! She usually gazes to the left, but here she is working to look at the tv on her right. I love it!!

Sitting...

Kendall's been sitting up for a while now. BUT yesterday, she sat for around 2 and a half minutes!

She started out for about a minute and a half without anything. Then we placed the drum between her legs to give her some help. She proceeded to look around and hang out for another minute.

I am so proud. I can't help but think this is just the beginning. This year, I know she is going to have some amazing developments. Her vision is improving every day. Her trunk control is getting stronger by the minute. Her personality is shining. She is talking so much and beginning to communicate. Its like I can't wait to wake up every morning to see what else she is going to do!

Days like this almost make me forget about all her other issues!

But, speaking of her issues, her blood pressure is high. She has also been retaining urine for over 14 hours at a time. We are adding Nephrology to our list now. Her cholesterol and potassium levels have been re-drawn so we can make sure they were correct. I am waiting for those results. If the triglycerides are too high we are changing up her diet. And praying seizures don't increase. Her sugars have been all over the board too. But overall, she seems to be feeling OK!

Breakfast in Bed...

As you know, my sister and I are huge fans of the band Train. Apparently that has rubbed off on my kids! Kamden loves to perform for the camera (if you can't tell) and he loves singing to his sister even more. So, I got a giggle when this is what he came up with the other night after Kendall finished her "breakfast in bed."

Honestly, its not my favorite song on the latest album. But Kamden apparently knows the words...sorta.

A Better Day

Kendall slept last night! So did we! Sleep is a wonderful thing!

Today has been better. I was able to run up to the local pharmacy I mentioned earlier. The stars aligned as I went to the first one and was able to transfer all her prescriptions. They still told me the diluted insulin would have to be compounded somewhere else with a proper hood. Then I ran to the second location (still same name) and actually ran into the owner I spoke with a few weeks ago. He made some phone calls, and viola! We now have everything in one place. They are able to bill Aetna primary, then Medicaid for EVERYTHING. Including Diabetic supplies which are considered Durable Medical Equipment. I feel like that is a step in the right direction...though I'll save my celebrating for when I actually have the drugs in my hands!

Also, Justin's insurance gives us a pretty good debit card for medical stuff too. This can be used for the next pair of glasses we will be purchasing very soon. I'm finished trying to fight the battle of getting Insurance to cover them. Technically, they are considered medically necessary since they are really "prosthetic lenses" since hers were removed at 3 months. But, I'm going to give that one up and let someone else fight it!

We found the cutest glasses that are rimless...but they don't recommend them for kids with lenses over a +3....and Kendall has +18.5 on one eye and a +19 on the other!!! So we are on the hunt for some cute aphakic lens compatible frames for kids. I'm confident with a little on-line research I can find a cute pair! I refuse for her to wear unfashionable glasses :)

Kendall has been sitting unassisted like a champ today! She will sit for over a minute, and then flops over. I just wish she knew her hands could prevent that! Instead, she leads with her head and then just lays there smiling. I swear, I think she thinks its a fun game.

Anyway, its been a good day...and I really needed it. So what if its only 1:00!!?

Lab Results...

Yesterday I went to pick up Kendall's prescriptions. To make a very long story short, it didn't go as planned. Apparently everything changes and clears at the first of the year. Medications that were approved before are not guaranteed approval this year. I had a ginormous tantrum in CVS when the medication I called to check on TWICE was denied by insurance. I spent the majority of the day on the phone checking on it and talking to the pharmacist and insurance company. It was the pharmacy's fault. They were coding it wrong and ignoring my request for them to change it. They were understaffed and extremely busy. I get that. My patience did not.

So after having a crying fit in the parking lot, I pulled myself together enough to get home. I did get it worked out and picked up last night. But the problem is I will probably have to go through the same thing next month. AND in two weeks at another pharmacy for her insulins. Hopefully I can get the local compounding pharmacy to fill everything all in one place. Maybe then the turn over of pharmacists won't be as bad as CVS. Something needs to change if I'm going to stay sane this year.

On the way home from the pharmacy, the Neurologist's nurse called to give me the updates on Kendall's latest lab results. Her endocrine ones were drawn at the same time and turned out OK. Apparently with what the Neurologist ordered, there were a few abnormal results. Her potassium levels are abnormally high. This surprised me since they are usually low. And her triglycerides were also high. With the diet that's not surprising. We are re-drawing some of them on Thursday because it was noted that it hemolyzed quickly. Also not surprising since she has a clotting disorder! But this means we may visit making more changes on the diet. I pray we don't have to get off the diet and add another drug though.

Although she's been doing great, she isn't sleeping. I don't get it. She still has lots of energy during the day. She. Just. Won't. Sleep. So neither do I.

She had a very nasty seizure last night. It lasted about an hour. The meds were given and she still didn't sleep. She wasn't very fussy, just awake. So, I don't know. Her sugars are all over the place, so we may start the pump. It's already in her closet, so its ready to go if we decide to do it. That will just require another hospital stay...and I'm not ready for that yet!

One day at a time. One thing I know for sure is that, my Epileptic, Diabetic, Keto Kid sure is a happy girl. She's full of smiles and lots of new babbles. And she's gaining weight. She's now 24 pounds. Her head circumference is now 17 and 1/16 inches. And she's SO stinkin' sweet!

Happy New Year...

I started to post a video a few days ago. I made a really cool slide show of our family's 2009...complete with music and quotes and fancy transitions. But I can't get it to upload! I'm embarrassed to tell you how long I spent making it. Maybe this year I'll take a computer class!

But I'm giving up now and starting over for a Happy New Year posting!

It's been an emotional few weeks. No matter how hard I try to pretend the holidays are fantastic...the truth is, it's a constant reminder that we're in a different place than we ever thought we would be.

Whether it's having to educate teenage waitresses about wheelchair accessible tables, or explaining to your 9 year old son he can't open Santa presents until his sister's seizures cease, or declining a New Year;s Eve party invitation because you don't have someone qualified to handle your daughter's medical needs, it's different. But the truth is, I love my life. And honestly, I wouldn't change it.

At the end of the day, I have a beautiful family, an amazingly-hysterical-goofy-always-there-for-you-no-matter-what group of friends, and a very encouraging support system! So, I'd say I'm doing alright!

This year....I'm looking forward to Kendall hitting many new milestones and enjoying life instead of worrying so much about everything. I also plan to be bikini ready by summer...