May Day Baskets

Tomorrow is May 1st, A.K.A. May Day, at least here in Iowa. We were outside with our new neighbors this afternoon when Rileigh asked when we were going to put our May Day baskets together. Lindsay (the new neighbor, originally from Utah) asked what May Day baskets are. Huh! Whaddoya mean??? You mean not everyone celebrates the first day of May?? My sister also let me know that the giving of May Day Baskets does NOT happen everywhere. She has moved all over the country with her Military hubby and says she misses the MD tradition. So for those of you who don't know, on May first, we Iowans make baskets (could be outta construction paper rolled into cones, or Styrofoam cups or even ice cream cones with licorice handles) and fill them with popcorn, candy and maybe even little trinkets. Then we deliver them to our friends and neighbors as a little celebration of beautiful month of May. This year we used purple plastic cups, punched holes in the sides with a paper punch and used gold pipe cleaners for the handles (purple and gold are Waukee colors). Then we filled them with popcorn, fruit flavored Tootsie Rolls and candy bars. We then added a crazy straw and a finger hopping frog. Now we just can't wait till tomorrow afternoon so we can deliver them to our neighbors and friends! I say, if you live in an area that doesn't give May Day baskets, go ahead and start the tradition!! The kids love finding a little basket of goodies on their doorstep and it's a nice way to show your friends that you're thinking of them!! Happy May Day!!!!

35 Sucks

I turned 35 in November of last year and so far it sucks!!! I swear, one week before my birthday my body went to pot and hasn't recovered since.



I had been on an antibiotic for a UTI and shortly after I finished taking all of the pills I broke out all over. My face had fine little red bumps on it, I broke out on my chest, back and even on my scalp and probably the worst part was the canker sores in my mouth! I would have two or three at a time and every time one went away, another popped up. I had never had a canker sore in my life and these were painful. I went to the doc and he thought maybe I was having an allergic reaction to the antibiotic so he gave me some steroids. Those helped, but as soon as I was done taking them, all of the symptoms came back but not nearly as bad.



I have started to think this may all be hormone related since it all seems to pop up once a month. It's not nearly as bad as it was at first, but totally irritating. I'm still getting breakouts ,which I hadn't had issues with since high school, and I'm still getting canker sores. What the heck??? Some other things I have noticed are~ craving sweets and carbs, sore neck and shoulder pain, headaches and waking up late at night and not being able to get back to sleep. Gabby's speech therapist suggested I see her doctor who prescribes those bio-whatever hormones. Really??? Do people who are 35 have hormone problems?? I'm thinking I'm too young...............right????



I'm trying to get the sweets and carbs under control by cutting them out of my diet for a few days. I was finding that I was wanting something sweet and carby everyday. I couldn't go to the store without buying doughnuts or pastry, cake or cookies. I have never really been a big sweets person. I would much rather eat a good meal! Gimme a choice between a steak and potato dinner or chocolate cake and I'd pick the steak any day! But lately I HAD to have something bad. I was telling my neighbor, Carrie, and she suggested doing no sugar and carbs for a few days just to knock it outta my system and then maybe the cravings would stop. Day One was HARD!!! I had a massive headache all afternoon and it didn't help matters that Rileigh and I had just gone and bought a ton of candy for May Day baskets. The candy was just sitting on the counter calling out to me "Sarahhhhhh, come eat me!!!". But I didn't! Avoiding sweets is pretty easy but the carbs are tough!!! I'm already sick of eggs and sausage/bacon for breakfast but what else is there? No cereal, breads, muffins, pancakes, waffles~ ugh! And snacks, what about snacks??? Cheese sticks, cottage cheese and veggies and dip can only satisfy for a few days!! My goal is to go for a full week and today is Day 3. No more headaches and I can totally tell that I'm not craving the sweet stuff! So let's see if I can reach my goal. If so, I may try for two weeks and maybe I'll lose a few pounds in the process which would be an added plus!

So if anyone has any no sugar/carb breakfast and snack ideas, I'd love to hear them!!

Inappropriate?

I posted a picture on my earlier blog of Gabby wearing just a diaper. Is that inappropriate?? She IS 8 years old. Can I get in trouble for that?? Hmmmmm. I was only wanting to show how skinny she is. Input please!! If anyone thinks this isn't appropriate please let me know and I will take it off! Thank you!!

Getting Worried

I am pretty much convinced at this point that the reason for Gabby's on going diarrhea is the Ketogenic Diet she is on to help control her seizures. If you'd like to know how the Keto Diet works, click here http://www.charliefoundation.org/ . When she was in the hospital and on only IV fluids and clears she didn't go at all. Once we started her back on the diet the diarrhea has all come back again. We have a few more things we can try with the diet, but I'm so afraid that it isn't going to work and we will have to give up on it.


When you have Epilepsy you have very few options when it comes to seizure control. First you try seizure medications. Gabby has been on several. We have added meds, decreased meds and upped doses. This has helped some. When her seizures first started, she was having around 40 a day! With help from the meds, she was having around 10 a day. Obviously that's better, but it's not great. Plus all of the meds have side effects some of which can be pretty scary, like complete liver failure. Luckily the only side effect Gabby has had is being tired.



Another option is surgery. This is not an option for Gabby and here is why. Lots of times when people have drop seizures (this is what Gabby has), the Neurosurgeon will go in to their brain and cut a little piece called the Corpus Callosum. It's a connector between the left and right sides of the brain. This will often completely stop the drop seizures. This won't work for Gabby because she was actually born without her Corpus Callosum. So explain to me how she is even having drops if that connector isn't there! Hmmmmm? She's a mystery. So anyway, no brain surgery for her.



Option 3 is the Keto Diet, which I'm sure all who are reading have already gone to the Charlie Foundation web site and read up on it!! Good Readers! The diet has been helping control her seizures a little bit. She has gone from about 10 a day down to around 3 a day. Ultimately I'd like her to be seizure free, but 3 is better than 40 or 10!! I am VERY tired of dealing with her poop issues though........... not sure how much longer I can deal. She has also lost a lot of weight being on the diet. She looks like she's from a Third World Country, just skin and bones. My eight year old weighs a measly 37 pounds. She had been steady at 39 lbs. but lost two lbs. after this latest hospital stay. Here's a pic:

The last option I know of for Gabby is the Vagus Nerve Stimulator. From what I understand, it's sort of like a pacemaker. The docs implant a device into the patient's neck and connect it to their Vagus Nerve. Read more about it here: http://www.epilepsy.com/epilepsy/VNS.

So as you can see, we are running out of options. Scary thought. The seizures have really impacted her life and ours. She has to wear a helmet if she's up walking around. She can't go run around outside on her own, I either have to hold her hand at all times or she is sitting in her stroller. She has to have a bath chair in the tub. She has a special chair she has to sit in at the table. Oh and I almost forgot about her bed. She is still sleeping in her crib for safety reasons. She's very small for her age so luckily she still fits, but her toes are right to the end now. We are in the process of getting her a Sleep Safe Bed http://www.sleepsafebed.com/, but it's very expensive and our private insurance has declined it. We are still waiting to see if her Medicaid will pay for any of it. She spends a lot of time on the couch because she knows if she gets up to go play she might fall down and get hurt. It's very sad to see how much she has changed over the last few years. She's a different little girl. I don't want her to live the rest of her life this way. I have heard that Stem Cell treatment could really help people with Epilepsy and that treatment could be a reality and available in under 10 years. I hope so!

84 Degrees in April

Today was a beautiful day!! We made plans to go to the Waukee Fire Department this morning. My new neighbor, Matt, is a Firefighter there so he said he'd give us a private tour and the kids could sit in all of the trucks. Levi, my four year old across the street neighbor, is obsessed with Firefighters and fire trucks so he was super excited. The kids had a great time checking out all of the equipment and even got to see where the Firefighters sleep when they spend the night at the station. I was bummed because I wasn't allowed to slide down the pole ;)

We hit a few garage sales after (first ones of the season!!!). Didn't find much. Rileigh has been bugging me to get her a dry erase board and I found a big one for $2.00 so I got that. Everything at that garage sale was so overpriced!! I hate that. If your gonna do a GS don't you just wanna get rid of stuff?? Why charge $15.00 for a kid's outfit?? I think the most you should charge for clothes at a GS is $5.00 and it had better be damn nice!! Oh, I also got a net for our basketball hoop. It hasn't had one since we moved in. I got one for $0.50!!! Only bad part is that it's NEON green. I think it may glow in the dark. Oh well, it was cheap!! Big thanks to Carrie, my neighbor, for hauling her ladder over and hanging the net up for me!!

Later in the afternoon the kids were all getting hot, so off went the clothes and they all ended up in their swimsuits........................in April!!! Levi just had his birthday not too long ago and he got lots of squirt guns so water fights were inevitable. I think they were all really tired though, because they were getting really crabby.

All in all it was a fun day. We topped it off by grilling out and having brownies and ice cream for dessert. Looking forward to more nice days!!!!

Hospital~ Day 4

Day 4 is Going Home Day!!! When I got to the elevator at Blank, the resident~ Dr. Day~ was just getting off. She stopped to tell me that if Gabby could tolerate her first two tube feeds that she would be able to leave!! Yay! She did fine, so we left around noon. Gabby was so cute. I was getting her out of her hospital gown and getting her real clothes on and she was just giggling! She knew she was bustin outta there! Many more giggles all the way down the hall and out of the building! When we got home she was very tired still so lots of napping!

I have to give props to the staff at Blank NICU!! They were all awesome! One of the nurses, Terri, was on the phone when we were walking out so I didn't get to say goodbye. We had gotten on the elevator when I heard her running down the hall~ she just wanted to say goodbye and said to stop back and visit sometime! Leaving can be sorta sad because you get to know the staff and they feel like friends! I would recommend Blank to anyone with children, they are so caring and knowledgeable. You know your child is in great hands!!

No poop since Monday and I just know it's coming.........................................

Hospital~ Day 3

BORING!!!! I was pretty much bored outta my mind the WHOLE day. I kept wishing someone would call and say "Hey, we're heading up to Blank to see ya!!" but no such luck. Nothing much exciting happened today. Gabby got unhooked from her IV so she could take a little walk around the PICU. She only made it around two times before she was pooped out. We'd have to pass the elevator each time and she would try to pull me that direction. She wanted to go home!!

Brenda (her nurse) and I talked gardening for a while. She gave me some advice on what flowers would grow well in my north facing shady yard and let me know that it is still a little to early to plant my annuals. The ground is a bit too cold yet, maybe in a week or two! She also told me about a strawberry patch in Indianola where you can pick your own flat of berries. Rileigh would love that!

After I got home and got RJ to bed, my neighbor Lindsay stopped by on her way home from work. It was nice to have someone to talk to for a while!! I'm really loving my neighbors (well most of them!!) and my neighborhood! When we first moved in, there was only one boy next door and he's several years older than the girls. Since then we've gotten 3 girls and two more boys. They all get along pretty well and have so much fun together! Plus we have Charlie~ he is a retired DSM police officer that the kiddos just love!! He's always buying fun new things like scooters, old cars and old people scooters A.K.A. Hoveround (as Lindsay calls it!). He takes all the kids for rides and teaches them to drive the Hoveround. He's probably the most popular guy in the 'hood!! We love him!

Word on the street is that Gabby will probably go home on Thursday, so fingers are crossed!! Just in time for beautiful weather!! Can't beat 80 degree days in April!!

Pioneer Woman and the Marlboro Man

Since I've started blogging I have been reading other peoples blogs more as well. One of the associates in Gabby's room, Rachel, has a blog that I read everyday. In several of her posts she mentions a blog that she reads called The Pioneer Woman. So I decided I needed to check it out for myself. Well thanks a lot Rach because I'm now a teeny bit addicted!! The Pioneer Woman is my hero!! She was a city girl through and through until she met a real life cowboy who swept her off her feet and turned her into a country girl. She's got some amazing recipes, she's a wonderful photographer and a great story teller. Oh she's hilarious too!! Since I've been stuck in a hospital room for the last few days I've been eagerly reading her series of blog posts titled Black Heels to Tractor Wheels~ A Love Story. The story of how she met and fell in love with her cowboy. She lovingly refers to him as Marlboro Man. The story is funny, exciting and even steamy at times. I can't wait to read more tomorrow! So check it out!! It's a great site! www.thepioneerwoman.com . Enjoy!!!

Hospital~ Day 2

Day 2 and not much going on. Gabby is looking better and more hydrated but she still sounds pretty nasty. She's still running a fever so hopefully that'll stop soon. Not a very exciting day. I had to run home around lunch time because the hospital was out of the right kind of tubing for her g-tube. I didn't really mind! I grabbed Arby's on the way home and watched my recorded episode of The Hills that I missed the other night! I'm a loser I know! 35 year old mom's shouldn't be watching The Hills but I'm a reality junky! Admitting it is half the battle! :) Becky picked Ri up from school for me and they both came and had dinner with me in the cafeteria. Usually the caf food at Methodist is pretty good. The have a salad bar, a little buffet, 3 different pizza selections and a grill area where you can get a burger, chicken strips, grilled chicken, etc. Last night it was horrible! Ick! Nothing even looked appetizing so I ordered a grilled chicken sandwich from the grill which to my surprise was just a grilled chicken breast on a bun. No lettuce, tomato, mayo or chesse~ nothing!! I couldn't pass up the mashed potatoes and gravy, so that was my dinner. Ri had some sliced turkey breast and mashed taters and she gobbled it all up! So at least she was pleased!

Ri cried on the way out of the hospital. She kept saying she wanted Gabby to come home so we could all be happy again. Poor girlie! She's so sweet (most of the time!!). You'd think she'd be loving life, getting to go to different friend's houses everyday, but I guess she misses her mama!

I'm hoping Day 3 brings us news of busting outta here!! Thanks again to everyone who's keeping Gabs in their thoughts!!

Hospital~ Day 1

Ugh, what a weekend! Gabby was sick, horribly sick. I actually thought she was doing better because when she woke up Sunday morning she had no fever and her breathing was perfect. As the day went on she slowly got worse. She woke up at 2:45 with a massive blow out diaper and a temp of 105.6! Scary!! She has had a high fever like that before so I knew to try Motrin and if that didn't work to bring her to the E.R.~ luckily it worked rather quickly.



I got her an appointment to see our awesome pediatrician, Dr. Menzies, at noon. The doc walks in and no more than 30 seconds later- blow out number one. This works out well though because Dr. M wants some samples! Perfect! She takes one look at Gabby's arms and tells me she thinks Gabby needs to over to Blank for IV fluids because she can't find a vein. When you're dehydrated, your veins shrink up and it's really hard to see them to draw blood. She has to call the Life Flight nurse, Sarah, to come find a vein and do the blood draw because the LF nurses can get blood outta anybody! Sarah was great and only had to poke her once! Yay! You know Gabs was feeling like crap because she didn't cry, moan or even make a sound when she stuck the needle in! Next we were off to radiololgy for a chest x-ray. We make it back to the docs office just in time for blow out number two. Wow, I'm super stress out at this point! I haven't slept since 2:45 and I'm tired!! Dr. M comes in during this clean up to let me know my day was about to get a little worse. Gabby has a big ol pneumonia in her right lung. She shows me the x-ray and all the seemingly innocent white puffy clouds in her lungs. Now we know she's going to the hospital for sure.



After waiting for an hour or so we finally get a room at Blank. We are actually in the PICU because they have beds open. We have never been in PICU before so none of the nurses look familiar. We have been on the General Pediatrics floor so many times that they know Gabby by name. I quicky find out that the nursing staff here are great!! So no worries there! They got her IV going and started her on Rocephin (probably not spelling that right but oh well!!). Every other time Gabs has been hospitalized I have always stayed in the hospital with her. Casey is in Washington working, we have NO family in town any more and Rileigh is going through a no sleepover phase. The last two times she has tried to spend the night at a friend's house, she has ended up coming home at bedtime. She's got enough issues right now, I didn't want to make her upset. Plus, Gabs has been so tired I knew she would just sleep. So I left the hospital around 7:00.



I must say, as guilty as I felt for leaving Gabby alone, I actually had a pretty relaxing night. I didn't have to change any poopy diapers or make any Keto Formula or get any snacks ready or do any nebulizer treatments or any tube feedings and I didn't have to crush any meds. Wow! I felt a little lost with so little to do! Usually before bedtime is a hectic time for me trying to do everything that needs to be done! I was so tired that Ri and I got in our jammies and crashed out at 9:00! I soooo needed a good night's sleep!!

Is it possible that I have the greatest friend and neighbors?? Everyone has been so supportive and helpful! It is so appreciated! :)

Crappy Day (Literally- do not read on if easily grossed out by poop!)

So here is how my day has gone so far and I've only been out of bed for a little over two and a half hours.............



It all starts around 4:00 in the morning. I can't sleep..... again. Getting really sick of this! I'm not sure what is waking me up, but once I'm awake I just toss and turn for the next 3 hours. Finally around 7:00 I get out of bed and start heading to the shower. The SECOND I open my bedroom door I smell that all too familiar smell. Gabby has pooped and chances are, if I can smell it in the hall it aint gonna be pretty. By now I know that in this situation I need to be prepared, so I gather up all my poopy diaper gear: a towel to lay her on so the carpet won't get stained, gloves, wipes, a clean diaper and a grocery bag to throw all the mess into. I get her out of bed and lay her on the towel and it was a mess. Not what I was really wanting to do first thing in the morning, but I get her all cleaned up and taken care of. I can already tell I'm not going to be in the best of moods today.



Next I go to the kitchen to get Gabby's tube feeding ready. I measure out the amount she needs and get it warming up. I then crush her 5 seizure meds and mix them with water so I can tube them as well. As I'm waiting for the Keto formula to warm, I go sit on the couch with the girls. Gabby has seizure number 1 which lasts probably a good 2 minutes. I make sure she's ok then go to the kitchen to grab her feeding stuff. I get back to the couch in time to catch seizure number 2. I can feel the stress setting in for the day. I am so frustrated by these damn seizures. I just wish they would stop.



Rileigh won't get dressed. I've told her twice already, but she still sits watching TV. Finally I have to basically yell at her and magically that works except now SHE'S in a bad mood. Lovely. Her clothes are on and now she's going to put on her new sandals that we just bought yesterday. The shoes fit in the store yesterday when she tried them on but now this morning they aren't fitting (according to her) and she's up in arms about it. Can I catch a break please??? I convince her that the shoes are fine and we actually make it out of the house on time, although Rileigh hasn't eaten any breakfast *sigh*. I knew we forgot something.



We get to school and I get Gabby all set up in her Vest. The Vest is a preventative measure we use to keep her lungs from building up crud that then leads to pneumonia. The Vest is actually a vest that attaches to a machine with tubes, the tubes pound air into the vest which then pounds on her chest and breaks up the crud. It's used a lot for people with Cystic Fibrosis but it has done wonders for Gabby too. Anyway, so I have her sitting in her chair all hooked up and pounding away. She hates it so I usually set a pillow in my lap and she leans over and rests for the 20 minutes she has to wear it. Her associate Renae walks over and gasps! "She has poop coming out the top of her pants and dripping on the floor!" At this point my eyes fill up with tears. Are you kidding me?? Two times already this morning? I'm thinking I'm going to have a break down. Renae tells me it's ok and is so helpful. Thank God for her! *Smooch* We love you Renae! So together we get her all cleaned up, new clothes put on and back in her chair and hooked up to the vest. Shoot, what a morning.

On a good note, I found out that Waukee Schools have a partnership of some sort with Mercy Franklin where students can get free counseling sessions with a licensed therapist. So Rileigh now has an appointment there on May 8th. Whew! At least something positive has happened this morning!


I think I'm going to finally get around to baking Lindsay's Banana Bread today and maybe make Rileigh's favorite pasta salad too............. or maybe I'll just take a nap!

Duplication 4p

Want to learn about Gabby's chromosome abnormality?? Go to http://www.rarechromo.org/- there you can learn how chromosome abnormalities happen. If you'd like specifics on Duplication 4p click on the box that has leaflets on specific disorders, scroll down to Chromosome 4 and click on duplication 4p. The info in there does not pertain to every single case. I noticed there were several things in the leaflet that weren't true for Gabby but it still gives you a good overview of the disorder!

Banana Bread

So I was going to do some baking today but decided to go return some things to Target and the mall instead. My new neighbor, Lindsay, gave me her recipe for Banana Bread. She loves to bake and is pretty darn good at it from what I can tell! I have a feeling her living down the street from me isn't going to be so good on my waistband!! She's already promised raspberry muffins and homemade raspberry ice cream! Ugh! It wouldn't be so bad if I wasn't such a sucker for the sweet stuff! I've found that as I've gotten older I want sweets more, I used to not really crave it- wish I didn't now! Anyway, Lindsay's Banana Bread is so good, I thought I'd post the recipe!

Lindsay's Banana Bread

Pre heat oven to 350, grease 4 -2lb loaf pans, or 3- 3lb loaf pans
2 cups sugar
1 1/2 cubes butter (real butter works best) soften in micro or let sit out
4 eggs well beaten
4 banannas mashed well
2 cups flour
1 tsp soda
1 tsp vanilla
1 cup chopped walnuts (optional)

Cream together sugar and butter til fluffy. Add well beaten eggs--mix well. Add mashed banannas--mix. Add flour, soda, nuts and vanilla. Bake for 40-50 minutes, until done, toothpick inserted in center comes out clean, start checking at 40 min for doneness. Bread will be dark golden on top when finished also. Enjoy! Try with cream cheese, super yummy!

I'm not sure if you noticed, but her recipe calls for cubes of butter. Lindsay is from Utah where they apparently call sticks of butter- cubes! Funny! I lived in Pennsylvania for a short time and they say all sorts of crazy things! Examples:

"Are yens coming over tonight?" Yens= You guys
"I need to red up the house." Red= clean
"I need to bath Rileigh." Bath= give_______ a bath.
"I'm supposed to be at the doctor for 9:30." For= at
At the grocery store they put their food in a buggy. Buggy=cart

I'm sure there are more but those are the one's I can think of off the top of my head! I think it's fun to hear what different parts of the country call things! I wonder if people think Iowans say funny things (besides calling Soda, Pop)?

Grrrr.............. Insurance Companies

Well I just got a call from the therapist's office where Ri's appointment is next week. I guess my insurance won't cover ANY of the visit because the therapist doesn't have the right licensing or something. My pediatrician recommended this office and now we can either cancel or pay $280.00 for the initial visit and $175.00 for each following visit! I guess I'll get on the phone with the ins. company and try to find someone they will cover :(

First Blog

So here is my first ever blog post. I just want a place where I can get out what I need to get out and just talk about whatever!

Today hasn't been the best day! Aside from being a rainy dreary Monday, Casey left last night to go to work in Washington state. Rileigh was really upset this morning after realizing that daddy was really gone. I know it must be so hard for her. Poor girl has so many obsticles in her life, she's such a good girl!

She actually starts therapy next week. She's had some issues we've noticed over the past few years. I think we first noticed it when she was in Kindergarten. When she would get really upset, she would hurt herself. She'd pull her own hair, or scratch her arms, or pinch herself. It breaks my heart. Over the past 3 years I've only seen her do it maybe 10 times, so it's not like she's constantly doing it, but still enough to make me worry. She has told me that she has a hard time dealing with having Gabby for her sister. She wishes that she had a sister who could talk and play with her. She also feels like Gabby gets all of the attention, which is true a lot of the time, only because Gabby can't do much on her own and needs constant attention-like a baby would. I would LOVE not to have to give Gabby so much attention, but I have no choice. Rileigh also thinks her face isn't pretty, that she's stupid, dumb and a looser. We have always told her that she's beautiful, smart and caring. Humph..............I just want her to be happy. I hope therapy helps.

As far as Gabby goes, there seems to always be something going on with her! Currently, we're dealing with poop issues...............do not read on if you don't wanna hear about poo!! She's been having loose stools for months now and we've always attributed it to one thing or another. I just got some test results back on Friday showing that she isn't absorbing fat which in turn just runs straight through. Ugh!!! At least we finally have an answer! Now I just hope there is something we can do about it! I'm a bit scared that we may have to take her off of the Ketogenic Diet that she is on to help control her epilepsy. The diet has helped, but considering she's not getting the fat she needs on the diet, it hasn't taken her seizures completely away. Stella, her Keto Dietitan, thinks that if we can do something about the fat absorbtion, that maybe her seizure control will get even better! So fingers crossed for that!

Ok, so it's 2:07 in the afternoon and I haven't even showered yet. Suppose I should go do that before the day is done!