PJ Party!

Kam and Kendall slept with me last night. Justin's hunting in Oklahoma...so Kamden's been helping a lot with Kendall. I wanted to take yet another picture of how good he is with her. While I was snapping some pictures, I noticed how big Kendall is getting. I mean big. Since she's been getting all her calories everyday she's bulking up. I always thought chubby babies were cute...but now I'm concerned she's getting a little too chunky for her own good. She fills out 2T clothes great and she is so tall (takes after Daddy!) But at what point will she need to have a reduction in calories (guess that's a question for the dietitians.) The last thing we need is to hinder her movement because she's gained too much weight. Ho hum. Guess be careful what you wish for!

Also, I can't get the rest of the sticky stuff off her neck from the line they put in last week. Any suggestions?!

Pumpkin Patch

So we did make it to the pumpkin patch today. In true Kendall form, she resiliently awoke from the medication fog and bounced back to life. Belly laughs, food chewing, and straw sucking her way through the afternoon. This child always keeps me on my toes:

Can't Get Ahead...

I'm so frustrated. Kendall had a wonderful day yesterday. The weather was beautiful. Our wonderful nurse was with us and we walked Kendall, played, ate, etc..It was a perfect day.

Except for her sugars. They for no apparent reason were up over 200 all day and that warrants extra shots. Her ketones looked good. She slept well last night and dropped in sugars this morning to 69. A huge leap, but she corrected nicely.

Then this morning, Kendall's Aunty Liz came over to give her a pedicure and have coffee with me...She ate nicely, was all smiles, and ready for her usual nap time.

I walked back in to check on her, and you guessed it. Seizure. 45 minutes of hearbreak and questions running through my head. 45 minutes of getting meds, holding her, rocking her, praying. 45 minutes of cursing everything.

She's sleeping now. I did check her sugars in the middle of it and she was 218 after a meal, and ketones were 2.7. Lower than I would like, so that may be the reason. The only thing I can think of is the Amoxicillin. It does have carbs, but the infectious disease Dr. said we needed to finish it at home. So we don't really have a choice.

We are probably going to make more changes in the Levemir. I just hope this isn't a sign that her body is preparing to fight off yet another infection.

I'm bummed. We were suppose to go to the pumpkin patch today, and get out and about, trying to get back into the world....but now she's doped up and sleeping it off. Boo.

Someday we will get back to "normal." right!??

No place to fit in...

Kendall doesn't really have a crowd...

Sometimes I think it would be easier if she did though. I mean, the Down Syndrome community and Autism families all seem to have each other to lean on. Visually Impaired kids have camps to go to. There are tons of support groups for kids with Diabetes and even Epilepsy. There are walks and rallies raising money for a cure for specific syndromes.... but not one that encompasses all of our issues.

We weren't allowed to attend the Diabetes class because they thought we would confuse the other parents and educators. Kendall's an exception to every rule on the Ketogenic diet. When her Ketones are low, we give her apple juice. When they are high, we give her insulin! I can't read the posts from the cataract/aphakic list serves anymore because they bitch and moan about having to patch their kids eye for 4 hours a day. Cry me a river.

If we did a 5K for every diagnosis Kendall has, we'd be walking every weekend until Christmas! We don't really have a reason or a one word diagnosis. She has multiple issues, none of which are related, and she's one of a kind. I usually just say Cerebral Palsy, and I guess that just about covers everything....minus the Diabetes and cataracts.

I guess I don't really need a crowd for her, and I'm sure she couldn't care less. I'm secure in her being her and our family being who we are. But it sure would be nice when filling out insurance forms, Dr.'s office forms, or school forms to check one box instead of 15. Or to answer the nosy old lady at the grocery store with one phrase.

Oh well.

The Haze Has Lifted

And we are home.

Home. I love the smell. I love the way Kendall responds when we enter the door. She knows. She knows she's safe here. No beeping sounds, no florescent lights, no hourly blood draws by strangers. She doesn't cry when we touch her hands or rub our hands through her hair. She eats solid foods in her chair with her spoon in our kitchen. She enjoyed a bath to wash away the hospital. And she's in her bed with her soft sheets sleeping more soundly than ever before. Home is a wonderful place.

It may take me a while to recover from these last two weeks. At the risk of sounding like a drama queen, that was hell. There's something about the hospital that causes me not to be myself. It may be the non-stop intake of caffeine, no sleep mixed in with not knowing what time it is, or what day it is. Eating crappy food and not drinking enough water. It could be the constant looking over shoulders to make sure there are no mistakes, or the excessive fear I have of germs in that place. Or all of the above. Whatever it is, it makes me not want to answer the phone, return phone calls or text messages. It makes me cranky and short tempered. But I'm home now, and like Kendall I can relax a little too. A bath and glass of wine are calling my name. The sound of my dogs and Kamden and his buddy in the backyard in some weird way has a very calming effect for me. Getting back to "normal" is a good thing.

We were discharged since the Endocrinologist on call and I had a discussion about the way things were going there. I assured him I could do a better job with this at home. So we were released to home with a very specific protocol. I will be touching base with our diabetic educators twice a day to report sugars and correction factors. Kendall's IV antibiotics have been switched to g button and have already been picked up. Justin and I were packed up and hot footed it out of there in record time. Seriously...I had to slow myself down on the freeway....I was that excited to bring her home!

Upon arriving home, my mother in law made us dinner, and my dad had cleaned my house again!!! We are so spoiled.

Oh, and thanks for your prayers this week. Despite the huge jump in ketone levels and blood sugars, we DID make it through a hospital stay without a seizure this week. Praise the Lord.

Another Post From the Hospital

We're still plugging along. Since we were moved to the room getting what we need in a timely manner has become impossible. I understand the pace of things in the hospital, but I also believe a lot of that depends on your nurse and their load.

I do not think there is any excuse for Kendall not getting her ketogenic diet food. I'm so sick of having to ask for the same thing over and over again. The patient advocate is talking to the social worker who will be setting up a care conference on Monday. I think that is past due.

Like I said before, this floor sucks. We want to go back to the epilepsy floor. Those nurses are super sweet and on the ball. They have even come by just to check on Kendall. I just don't mesh with the nurse we've had here the past few days. All she's good for is going to the fridge to get our food(that I weigh out). I'm giving all the shots and feeds, baths and gbutton cleanings.And her decision to roll her eyes at me was a bad move.When I told her the IV was blown and I turned off the machine because it was infiltrating and it needed to be taken out she decided to flush it and argue with me.Her arm looked like Popeye and The freaking thing was leaking blood and antibiotic all over the place. Now I only talk to the charge nurse!!

But we're still here and will be for a while. They are still tweaking the insulin and monitoring her hydration. I want to be home but what do you do?

Believe it or nor we are very happy to be here. I'm thankful for our decision a while back to keep everything at Cooks. I can't imagine having each Dr or therapist at a different hospital. Having a group that works as a team definitely makes a crisis like these past few weeks easier to manage. It would have been way worse otherwise.

How Many Nurses Does it Take?

To give an insulin shot correctly?!?! Good gosh. This morning it took 3 nurses in the ICU to figure out the correct dose. I just stood there trying to help out, but of course, they had to figure it out themselves. Then they passed it to each other to double check...all ready to give it to my daughter...when I asked to quadruple check it. Only to find out it was an incorrect dose. DILUTED INSULIN PEOPLE! It means if it is 1/2 a unit of Humalog, it is 1 unit on the syringe. So, after that I ended up using my own syringe and doing the injection myself. RIDICULOUS. And this is the ICU.

If you can't tell, I'm officially over being worried, exhausted, and overwhelmed. Now I'm just annoyed. I swear if I hear one more time "wow, she's very medically fragile...this is such a balancing act...this is very complex..." I might hurt someone. We already know that. But thanks Captain Obviouses.

We were sent away from the ICU this evening. Not to our beautifully new 4th floor Pavilion with all our favorite nurses who are so wonderful with seizure kiddos...and neurotic mothers...but to floor 4 in the main hospital. A dark, gloomy place. With narrow hallways and tons of people. The nurses there are apparently "much better with Diabetics." But when I was leaving this evening and said goodbye to our nurse, she told me not to worry. "The Dr.'s just want us to get the formula down Kendall so it will help with her seizures." That's when I knew this hall doesn't know a whole heck of a lot about seizures or the Ketogenic Diet. OR MY DAUGHTER. We lost her pacifier when we were transferred from the ICU, and as the nurse was trying to get Kendall to suck on the hospital passy she offered to dip it in the sweet stuff...again...not much knowledge of the diet. UGH!!!!

So Justin is with her tonight. I know he can handle double checking the nurses. So I will get some rest and do it all over again tomorrow. Last night was bad for me. I absolutely hate the ICU. Its a big fish bowl and you hear way more than you should. I awoke last night to very disturbing emergencies. And the sweet 6 year old's future will be determined tomorrow. I will never know how it turns out...and that's probably for the best.

We are looking at staying through the weekend. That will total over 2 weeks for us. Poor Justin was suppose to go hunting this weekend and now it doesn't look like he'll be able to. I feel bad for him since he was so looking forward to it. But I guess that's life. Well, our life.

Kendall is receiving OT and PT in the hospital. The ladies who have been to see her so far have been great. AND....we were able to get bilateral AFO's ordered for her. So we will be able to cast at our bedside and pick them up later. At least I will be able to cross one thing off my list this week!!!

I really want to get her home and eating solid foods again. This G button was only suppose to be for supplemental fluid and medication. Not 36 oz a day.

Thanks again for all your support. Kendall is on the mend, but we still have a way to go before the permanent plan will be put in action. If I don't have a good feeling about things tomorrow I think I'm going to request a care conference. We seem to be getting different answers from everyone involved and its becoming more evident that not everyone is on the same page. That makes it impossible for us to go home feeling confident we are doing what is best for Kendall. So I don't care who's toes I step on in the process. If I didn't completely believe it before, I do now. Justin and I know Kendall and her issues better than anyone else.

Good night. Tomorrow's a new day.

ICU still

We're still here. Kendall woke up this morning and smiled a little. She's just really weak and not herself. She's sleeping a lot.

Justin stayed here last night and I was able to get some sleep.I ran into our pediatrician in the hallway. He made a special trip here just to see Kendall. As we were walking him out, our awesome ECI friends were here just to give me a hug.our pastor prayed over kendall yesterday too. So I feel better today. My dear friends put together a care package for us... With gift cards and food and advil and magazines. So generous and sweet! Once again I am reminded that I have the best group of friends anyone could ever ask for! So big thanks to you all!
Since I had some rest, I was able to comprehend more from the Drs today. There's too much to write on my phone, but I will get more specific later. We may be getting an insulin pump before we leave, but that's kind of an insurance decision. Kendalls H1N1 test was negative and the grand rod positive culture looks to be a contaminant instead of in her blood or line. So weird.
Anyway, I'm a little too spent to writw any more right now, bu will update again tomorrow. Thanks for your continued prayers. Xoxoxo

still here

We are still in the ICU. Kendall's status remains the same.She's still sleeping and only stirs when she's stuck.Her ph levels are improving and so are her potassium levels. There has been more talk of discontinuing the diet. Some think its worth it (Neurology) others aren't convinced (endocrine.)

Oh, and somewhere along the way her line was contaminated resulting in positive cultures in her blood and urine. It was explained to me that when they started an iv there may have been something non sterile that got inside. Its growing fast so more antibiotics have been ordered and it will definitely lengthen our stay. I'm waiting on an infectious diseases dr now.

Last night was really rough for the poor little girl next to us. I'm already overflowing with emotions for Kendall so the sad situation next to us with a foster child with similar issues to Kendall is breaking my heart.I can't stop crying for her. She's all alone. The care is great but I hate the ICU. We aren't being moved anytime soon so I guess I'd better put my big girl panties on and deal with it.

My dad stayed last night with me so I was able to sleep for a couple hours. Not peacefully though. I've had 4 hours total in the past 5 days. I've always said sleep was overrated... now I'm not so sure. I'm on my own today. Justins boss has been amazing but he hasn't been to work in a week so he kinda needs to get back. Again... This sucks. Poor Kendall. Poor me. Poor foster kids, poor seizure kids, poor kids with other special needs. Poor people who just don't get it. I wish I could just take all the bad away. These kids don't deserve this. At all.

ICU

We need your prayers right now. Kendall is in the ICU with diabetic keto acidosis. Her levels are bad.The acid in her blood is 6.8.Someone should have told the Dr from yesterday that steroids and diabetes don't play well with one another. She looks horrible and is non responsive. Please lift up our baby girl in your prayers for healing.
Oh, and Kamden got sent home from school with a fever.Enough already.Enough.

The Saga Continues...

So Kendall's upper airway issue has turned into a full blown lung issue. She was gasping for air last night, coughing uncontrollably, and making herself vomit. As if that isn't bad enough, she's had hives since we were discharged. They come and go, on her face, wrists, ankles, elbows, and they look miserable.

To us, this sounded like the flu, minus the big fever. Her fevers have remained consistently in the low range. Thank God.

Under normal circumstances, we would have gone to the ER, but we're kinda over that hospital. Our regular pediatrician takes turns with other pediatricians seeing patients on the weekend. Thankfully, they were able to give me guidance on the phone last night how to proceed with the breathing treatments until she could be seen. I think the vomiting was caused by her coughing...we will see here in a few minutes when she eats.

We went to the office first thing this morning and were able to go right in (there was a waiting room full of kids puking, and I walked back up to the counter to say my daughter was having respiratory issues...and they walked us right back...) The Dr. was good. He took the bull by the horns and immediately gave us a script for an anti-biotic, steroid, and refill on Xopeonex for the nebulizer. We were out of there in like 25 minutes. Praying this does the trick.

Then of course, he had to put in his two cents on the Ketogenic Diet giving parents a false sense of seizure relief, only to have seizures return a few months later. I'm choosing not to listen to him. He was polar opposite of our regular pediatrician, but got the job done. So, mission accomplished.

Here are some pictures I've been wanting to post! A little random, but I'm feeling a little scattered right now, so I guess its OK! Hope everyone is enjoying their weekends. Sleep a little extra for me!

Kamden's Birthday Party Last Friday...

Kendall in the hospital the next night...

Dinner at home!! Medicine and KetoCal...with no fighting involved...

We're Home

We made it home this afternoon.

Sorry I haven't posted. Its been a crazy busy few days. And well, coming home from the hospital is a chore.

Blood sugars are leveling out...good thing our Dr. was doing rounds yesterday and HE knows how to listen! We decreased her Lantus and she's been fine. She's tolerating her feeds perfectly. I'm a bit concerned about some redness around her belly button...and the g-button. They told us what to look for, but I don't remember them mentioning her belly button having a red circle around it?! Her poor belly is still a little hard and puffy. She also developed a pretty bad runny nose. There seems to be a lot of drainage, but no fever and it isn't in her chest...but we'd be silly to think we escaped a week in the hospital during the worst outbreak of the flu unscathed...so I don't think we're out of the woods yet.

We got a pretty cool pump and came home with a bunch of supplies. The Atrium at the hospital was having a craft fair, so I bought Kendall a really cute pink and brown polka dot back pack for her pump! They even embroidered her name for free, so at least she'll be stylin.

I don't feel that relieved feeling everyone said I would have after the surgery. I do think its pretty cool I can burp her manually and just squirt in the meds and formula! But its still a lot of work. I'm sure tomorrow when I don't have to spend 3 hours getting a 4 oz bottle down her I will be relieved. Right now I'm just exhausted and surrounded by loads and loads of laundry and things to find places for!

Thank you all for your words of support this week. I couldn't have made it without you. My Dad was an awesome help keeping Kamden in a routine...giving us breaks at the hospital...and he cleaned my house! Nonny and Poppy helped us get through our stressful day of surgery. Also, a super big thanks to Theresa for the lunch and comic relief yesterday, and my dear sister for her constant support and love. She visited us in the hospital, helped with the swallow study, came over tonight, folded my laundry, and bought Jussy and I dinner. We are very grateful to you all! (It was also an awakening to me how much I really depend on my mom! Since her immune system is so compromised right now, she couldn't be there, and I missed her BIG)

Also, our dear friends on P4...as always, we love you guys. The Dr.'s, nurses, etc.. this time around were even more exceptional than they always are. I can't say enough good things about the Neurology team at Cooks. Also, we had the very best in house Pediatrician in the world. He is by far the best Dr. we have ever dealt with. I wish we could see him all the time. They make a tough time much easier. But I hope we don't have to see any of them for a long long time.

This weekend we will be getting back into the groove. I need to get organized, get back on a running schedule, and get a pedicure. In that order! Maybe I'll actually have a chance to do those things since I wont be spending every waking minute shoving a bottle in Kendall's face!

Oh, and Happy Birthday to my big 9 year old Kamden today! I will post pictures from his party last week soon.

Enjoy your weekends!

surgery

I will make this quick and to the point.

Kendall had a seizure before surgery. I ended up yelling at the charge nurse. There have been quite a few issues with the hospital. They wouldn't do diluted humalog in the pharmacy so we had to keep talking to the right people to make it happen. I get there is protocol but when its your child its hard to be patient with all the politics.

Surgery went as planned. She has a fever now though and seems to be in a bit of pain.

I've tried to post this a few times bu haven't had any luck. I'm losing my patience with posting from my phone. Hopefully after some sleep I will be able to write a sunshine and rainbows post. But don't hold your breath.

Todays Update...and Surgery Scheduled

Kendall did well with her upper GI test. They had to drop a tube...not pleasant. We were also able to fit in a swallow study. Everything looked fine on both. No need to thicken any liquids as there's no sign of aspirating (I could have told them that) and we are a go for surgery tomorrow.

It is scheduled for 11:30. Pray for us.

Kendall has gone two days now without any Lantus in the morning. Apparently it is unheard of for a Type 1 Diabetic to be without insulin. They lowered the number we correct with to 200. Around 1:30 she was at 222, so they corrected with a half unit of Humalog. We went to the swallow study, she ate, when we returned she was a bit peaked. I checked and she was at 38. Clearly the Endocrinologist on call didn't listen when I said she was sensitive to the quick release insulin. She had 2 IVs of D10 then she was at 95, then an hour later she was back in the 30's. So frustrating. Our poor nurses are probably drawing straws to see who gets her tonight.

Hopefully our Anesthesiologist gets a good rest tonight...and will be good to go in the morning. With her crazy blood sugars and constant threat of seizures, she's beyond complicated.

Again, please pray for Kendall to do well in surgery with no complications, level blood sugars and to remain seizure free. Also, for our Dr.'s and nurses. The next few days will probably be a little stressful, but I will try to update when I can.

The G Button

Since we found out Kendall had neurological issues around 4 months, I have been absolutely obsessed with her feeding. Pictures on the very blogs I read every day of kids with tubes freaked me out. I'm squeamish when it comes to blood, the body, anything medical. So for me, getting a feeding tube was my worst case scenario.

On a normal day, I'm sure I could sit here and hash out all my emotions, but quite frankly, I'm too tired.

So, I'll make a long story short...we have decided to get a G button for Kendall. The way I see it, her Diabetes and seizures are the most important thing for us to keep an eye on for Kendall. Both of those things rely very heavily on her diet, medicine, and fluid intake. So the best way to make sure she has what she needs is to get her a feeding tube. So we are.

I've been through my crying fits and anger. But the original feeling I had of "defeat" for how hard I've worked to get her to eat thus far and now having to give in is over. I know this is going to change our lives. Kendall will still eat by mouth. I will still offer her food and fluids like I do now, but when it turns into a fight...I'll tube it. I will give her her morning and evening doses of meds, dietary supplements, etc through the tube.

This will free up so much of our day. Making more time for therapy, playtime, and bonding with Kendall. I will be able to sleep at night knowing she has ALL of what she needs. It will be a good thing. I see that now. Thanks to Holly, our Nurses both at home and the hospital, and our Dietitian through ECI, this no longer seems scary. I can do it. It will improve quality of life for Kendall...and my family. Like Kamden said..."mom, now you will be able to sit down with me and watch TV, play games, or cuddle, instead of trying to always get Kendall to eat."

So with that said...it has come time for us to take that step...and we will....in the next 3 days. Surgery isn't scheduled yet, but our upper GI is scheduled for tomorrow at 8am.

Today we had a test run (I can't remember the acronym) to find out if Kendall has reflux with her urine. She doesn't. She does have a big bladder though. The Urologist says she is extremely constipated (a common side-effect of the diet magnified by the fact she doesn't get enough fluids) Oh, and this is humorous to me too because its the same Urologist Kamden goes to that says his chronic constipation is the reason he urinates so much!?!?!?! Anyway, we don't have an answer yet. Blood is gone. She's going on her own, just not enough.

Last night her blood sugar dropped down to 28. Yes, 28. That resulted in her having her sugars checked ever hour, and then every fifteen minutes after the glucose was put in her IV. It was a very miserable night.

I'm getting sick, so Justin is staying with her tonight. I will be downing some Nyquil and making it back up to the hospital by 7:30 tomorrow for her Upper GI. I think they will have to drop an NG tube since she's not eating. (no, she didn't get one today...she ate a little bit of solid food yesterday.)

We are also going to do another swallow study since we're there. It might be interesting. The thought is there may be a reason other than teething that Kendall stopped taking the bottle. She may be aspirating...but I honestly don't think she is. It is time for another study anyway though, so it will be nice to get it all done at the hospital.

We're looking at probably another week there...please pray she doesn't get sick.

surgery

I will make this quick and to the point. Kendall had a seizure before the surgery. I yelled at 2 nurses. Her blood sugars are a wreck. Surgery went fine. She seems to be in pain. She's running a fever. Ihave a headache and am afraid to leave the room due to the flu. So justin and I are hungry and cranky. And I'm losing my patience posting from my phone. I will sleep then hopefully post a more sunshine and rainbows post tomorrow.But don't hold your breath.

long night

It has been a very long night. Kendall has had absolutely no urine output. Even after tons of iv fluid. She's screaming like crazy. Her blood sugars are a mess. She of course won't eat. She's blown 6 ivs. Today she will probably get an ng tube. They will also do a ct to check more closely for kidney stones. Once we figure out what's wrong and hopefully fix it we will be discussing a g button. I will post more on that when I get to a computer. Posting from my phone isn't easy. We've blown ketosis, so seizures are a big concern. So is the flu. Thanks for everyone's suppport and well wishes. It helps me more than you know.xoxoxo

Back to Hospital...

We're being admitted to Cooks. I'll keep everyone posted through the blog. Please pray for our baby girl. This sucks. Really really sucks.

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?!}