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!!