Discharged...

Kendall and Jussy are on their way home. She had an IV and a urinalysis done. She also had a renal sonogram to look for kidney stones. Everything came back normal...well, except the blood in the urine. I don't get it. They are heading home without any answers. Her bladder looks fine, it was full.

I have a living room full of sleepy 3rd grade boys. The party was a success and I pray they all fall asleep soon. Two are already sawing logs, hopefully the other 6 will follow.

Thanks for the prayers.

Hospital Bound...AGAIN

Kendall is going to the hospital...blood in her urine and she won't take fluids. Her ears are fine, so is her throat. Our pediatrician thinks it best to do a cath and urinalysis there.

Please pray she doesn't catch anything and doesn't have to be admitted (yeah right)

Kamden's birthday party will start in a couple hours, so Justin will be on his own at the hospital tonight. It was a hard choice, but I feel like this is the right thing for Kamden right now.

Keep us in your prayers. Update will follow.

xoxoxox

Patience Grasshopper

Oh dear. So Kendall still isn't eating 100%. We've had to get really creative. I mean REALLY creative. In a nutshell, yesterday she ate 400 calories and had about 9 ounces of fluid all day. Today she increased to about 500 calories, and has had about 12 ounces of fluid. Mostly Powerade Zero, flavored water, and the cream that goes with her meals. We've figured out if we whip the cream and add vanilla and sweetener she thinks its desert. Tomorrow morning I have a plethora of fruit smoothies to try. And a bunch of flavorful meals already prepared. Hopefully I can get meds down in the morning cause tonight was bad again.

I'm concerned about her fluid intake for a number of reasons....but we check her urine for blood, and glucose, etc...once a week. There isn't any blood, but her glucose square was pretty dark. Unfortunately the Endocrine clinic is totally swamped taking calls from kids with the Swine Flu, so nobody called me back again today...Her blood sugar has decreased with our increase of Lantus, so hopefully that will continue. Her Ketones remain steady between 6-7. I just hope that's not a sign of dehydration...and instead a sign of our diligence on the diet. SHE NEEDS MORE FLUID INTAKE...that's for sure.

We almost went to our Pediatrician's office today to have him check her ears, but I went with my gut. She isn't running fever, she's laughing (see above) and full of personality, so I decided it wasn't worth the risk of getting Strep or the flu.

I gave her a liquid glycerin suppository tonight. This was our first time. That in combination with her regular everyday Miralax was deadly. I was holding her when the explosion occurred. Justin and I managed to survive. I'm just wondering why I didn't discover that miraculous invention sooner!

Kamden's having his 9th birthday party on Friday. Yes, folks, I reluctantly agreed to a sleepover. We will have 8 boys ALL NIGHT to go to Dave and Buster's and drive me crazy. I know it's a bit of a ridiculous idea, but Kamden has been such a trooper and a loving brother, he totally deserves it...so I couldn't say no! Wish me luck.

The Run Around.

Today was a bad day.

Kendall won't eat. AT ALL!! Last night she was running a fever (rectal 101) so not too bad, but she wasn't feeling well. I feel defeated since I've been absolutely and completely paranoid about getting sick. I've turned into a Lysoling, anti-bacterial sanitizing freak.

I went to the pharmacy trying to pick up Tylenol suppositories...due to the Keto diet that's really the only option we have for fever relief...oh, and the fact that she won't eat. By the way, its the only pharmacy I have left in a 10 mile radius to go to. I've had a full blown temper tantrum in pretty much every other one in our town. I ended up not getting what I needed, and leaving in an even worse mood.

Last night Justin and I tag-teamed feeding Kendall pants. He held her while I strategically positioned a spoon of formula in her mouth while simultaneously singing songs and bouncing her. It didn't work. She went to bed without medication for the third night in a row.

I feel like I'm at the end of my rope.

Today was more of the same. Her fever completely went away though. I attribute that to my non-stop praying in lieu of sleeping last night! I think she is just teething really badly. Who knows?! I could make a list of possible reasons, but it doesn't really help anything.

As if my patience weren't worn thin enough...I was dealing with Insurance companies ALL day. Seriously, I ran two phone batteries completely dead today. My ear is permanently embedded in my shoulder. For almost a year now, Kendall has been part of the Medically Dependant Children's Program (in Texas its a Medicaid waiver program where the service is based on the child's income not the parents) It was introduced to me by my friend Dana...a life saver. Kendall fortunately receives Medicaid secondary to our Primary Insurance Aetna. I thought this would be a good thing, and it has helped us tremendously. But we are at a stand still right now. See, we can't get any of her Diabetic stuff covered. The pharmacies contact Aetna, who says we have to do mail order...then I had them convinced we needed to bypass that....so we can bill Medicaid secondary....then the pharmacies say they cant bill Durable Medical Equipment to Medicaid...Medicaid says we have to go to a specific pharmacy to do that....so we do.....then they can't bill Medicaid because Aetna isn't being billed first....so I contact the pharmacy....who contacts Aetna....who contacts me.....who contacts a Home Health Agency....who contacts my Dr....who contacts me....to say the home health can't deliver diabetic supplies....so I need to contact a company who can....who says Aetna needs me to do mail order!!!!

Long story short, we are going to have an $80 co-pay twice a month for Kendall's diabetic equipment. This doesn't include her KetoCal formula. I have to get that through WIC, which we qualify for since she has Medicaid. But I also had a temper tantrum in that office, so I don't particularly want to go back. Oh, and I'm a germ-a-phobe and that office is crawling with germs. Want to know the funny thing?! If we had a g-button it would all be completely covered. Want to know an even funnier thing?! If we didn't have insurance at all, Medicaid would just pay for everything. hmh...

Grrr.... nobody has any answers, and we are now a one income family! And last time I checked, Type 1 Diabetes and intractable epilepsy don't go away. We have a champagne baby on a beer budget.

Acceptance...

It dawned on me this morning (no pun intended...)

I've learned more from this 21 pound bundle of love than I have anything else in my life.

Really.

I've had a pretty sheltered life... I mean, sure...I lived through a divorce, and survived as a single mom...(there were some definite dark days in there when I thought I wouldn't make it) But all in all, pretty sheltered.

Before Kendall, I was always a go-er. I rarely sat down. I couldn't go to sleep at night if my house wasn't in order. If I had down time, I usually already knew how I was going to fill it. I used to hate an empty house. In the car I couldn't drive out of my driveway without picking up the phone to call someone. I had my days and evenings planned weeks in advance. I kept a to-do list with every single detail of my day and took joy in crossing things off the list. I (can't even believe I'm going to admit this...) bought a new outfit any time I had plans to do something. Seriously. I did. I spent way too much time picking out clothes, shoes, jewelry, etc... Oh, and I thought about myself...a lot.


Since Kendall, I've learned to appreciate the quiet. I've learned to be still. I've learned that the little every-day miracles are enough to make me feel full. God is first. People are second. Things are last. Period. I think of that as a blessing now. I think it takes some people a lifetime to learn that and truly believe it. I'm only 31. So I've been blessed.

It is still somewhat aggravating that I hated cooking and being in the kitchen, and now I spend the majority of my week preparing meals/feeding Kendall. I hated anything that even resembled a hospital, and now we pretty much spend all our week at therapy or Dr. appointments. I don't shop. I rarely shower in the morning. And my day revolves around my kids' schedules. My sleep revolves around Kendall's. But that's my life.

So, I guess as far as the grieving process goes...(thanks to Grey's Anatomy for the reminder last week!) I'm at the acceptance stage. But I reserve the right to go back through Denial, Anger, Bargaining, and Depression at any time!

{oh, and Holly...you might be at acceptance too! Otherwise, how could we have found humor in the 18 month old at the park pushing his own stroller?!}