It's Been a While!!

So I haven't written in forever. This has been a pretty tough summer for me. Spring Break was great so I was actually really looking forward to my summer with the girls. Unfortunately, Gabby hasn't been such a happy camper. I'm sure it's because she gets bored, not a lot for her to do. We try to go out and do stuff that she likes, but there is only so much we can do. Lots of her days are spent crying or being crabby. She misses school and right now, so do I!! I haven't posted many blogs due to the fact that by the time I get them to bed, I just wanna veg on the couch.

Ri is at Living History Farms camp this week. She went last year, but because of her age, she only went half days. This year she gets to go full day! She loves it and I hope it is something we'll do for her every summer! Her favorite part is creek stomp day! They wear old shoes and clothes and get to play in the creek. She comes home a filthy mess, but she loves every second of it!

We are also in the process of planning her 8th Birthday Party. She kind of got jilted on her B-Day last year as we were driving to New Mexico for Casey's brother's wedding, so this year we are gonna do it up right!! She's having a bowling party on Aug 1st (her B-day) and then on the 2nd we'll do a little neighborhood party with all the neighbor kids. One of my neighbors has talked me into making my own pinata- so we'll see how that goes. She says it's easy but I'm soooo not a crafty person! If it turns out I will post pics.

Gabby's new bed should be arriving at 1:00 on Friday!! Can't wait! Hope she loves it! She goes to her G.I. Doctor appt. on the 29th and it can't come fast enough. I don't know how much longer I can deal with her issues :(

We are supposed to be going to Texas in mid August. Casey's Great Grandmother is turning 100 so they are throwing a big Birthday bash and family reunion for her. We will fly into Houston and stay with my sister for a few days, so that will be nice! Hoping to get back to the ocean- Gabby and Ri both loved it!

So there is a short update. Hopefully more to come soon!

Yowza!!

Well Gabby finally pooped!! After three and a half days, she finally let it all go and it wasn't pretty! She's gotta feel so much better now! I wonder if this will be her new norm. We've gone from 4-5 times a day, down to once a day and now once every 3 days?? Can't say I'd complain!

We go see Dr. Menzies tomorrow for her Special Kids Clinic which is basically just a very thorough check-up where she includes a dietitian, social worker and anyone else that she feels Gabby would benefit from seeing. I'm not sure who all we will be seeing. Update tomorrow!

Oh Buddy!!

I am so in for it!!! Gabby hasn't pooped since Sunday morning!! We're going on almost 60 hours of no poop. I thought for sure it would happen at school today, but nothing. What the heck?? I just hope when it does come, that it isn't at like 2:00 in the morning. Her bowels confuse me. I wish they would make up their mind already!!

Randomness

Geesh, it's been a while!! I've been busy the past few weeks. First my mom was visiting from Colorado then the day after she left, my in laws arrived! Lots going on!!

Well the school year is winding down and I swear we are as busy as ever! Even worse is that our summer is looking to be crazy too! Camps, summer school, vacations, visits from Casey and doctor appointments have already consumed most of the summer months! I have already purchased a pool pass for Rileigh and myself. This is the first year I've bought one. I was going to just get it for Ri since my wonderful neighbor, Carrie, said that she would take Ri to the pool with her anytime they were going. I decided to add myself because it really wasn't that much more and I'm hoping that it'll force me to go. I don't think I went once last year but that was due to the fact that I had no one to do respite for Gabby. I am so lucky to have an awesome respite person signed up for the summer already!!! Miss Rachel is an associate in Gabby's Functional Skills room and she was nice enough to agree to work with Gab's this summer (she's also doing respite for one of the other boys in her class too!)! I think this will be the first summer where I'll be 100% comfortable leaving her! Rachel is awesome~ so sweet and patient~ I couldn't have asked for anyone better!!

Speaking of Gabby, I think a poop update is waaaaayyyy overdue! I know you are all so anxious to hear if the poop issues are on going!! Well, I am so happy to report that there have been some significant improvements!! Since we have stopped giving her such big bolus tube feedings and she's actually eating more real foods, she has only been having one big blow out a day and it's usually first thing in the morning. I go in to get her out of bed saying "Good morning Stinky!" I have been super pleased with this! I no longer fear going out to eat or taking her out and about! She is going to see a GI specialist in June because there is some concern that she isn't digesting her food properly, but I don't think that's any huge deal, they would just need to give her some enzymes or something. Her seizures have been inconsistent as usual, but she has had a few seizure free days here and there, we are always thankful for those!!! Her ketogenic dietitian, Stella (at Children's Hospital in St. Paul), has been such a great help. She is so positive and encouraging, I don't know if I could have kept up with the diet if it hadn't been for her support!

One last bit of news~ Casey is getting his wisdom teeth out tomorrow. They have been bothering him for years causing headaches and tooth pain. They are so impacted that the dentist told him his jaw bone is going to be very fragile and there's a possibility that it may break. Ugh!! So please keep him in your thoughts and prayers. It sucks that I won't be there to help him, but he is going to stay with his Uncle Wally ,who lives in Seattle, for a few days while he recovers. I remember getting my wisdom teeth out. It was horrible, almost as bad as giving birth (in my opinion!!). Hopefully he'll be ok!

BOOBS!!

That got your attention, didn't it??? I posted on my Facebook status the other day that I was going shopping for a new over-the-shoulder-boulder-holder. A couple of my friends responded, saying to have fun. Have fun?? Were they being serious?? I had never considered that bra shopping may indeed be fun for some people. I am not one of those lucky fun bra shopping gals. In fact, I HATE it. One of the girls asked if I would be visiting Victoria's Secret. Well, one of Vicki's secrets is that she doesn't carry bras that can tame my monster melons!! I can't shop for the cute, sexy, push-up versions like most of the female population. Most department stores that I have visited only have two or three different brands that even carry a bra in my size so that cuts my selection way down. From there I usually have a choice between a regular bra or a minimizer which promises to drop your cup size by 1 1/2 inches. A minimizer does make you appear smaller, but lots of times you look smooshed too. I can pick between your basic black, white or beige. No fun colors, no funky patterns, nothing sexy about em!! The back usually consists of at least 3 rows of hooks, the shoulder straps are extra wide and even extra padded and you're lucky to get a pearl or a bow smack dab in the middle. Here's an idea, next time you're at your Grandma's house, raid her bra drawer and I'll bet my bras look pretty much like hers!! So no, bra shopping for me is not fun. I am so jealous of my smaller breasted friends that can find the joy in searching for new undergarments!! If I had the means, I would get a breast reduction in a heartbeat (I actually went for a consultation several years ago and that is a story in it's self!) but for now I'm stuck in the ugly bra club!! Anyone else out there wanna join me??

Mother's Day

My mom is actually in town for Mother's Day this year. It's been a long time since we've shared this holiday so it's been really nice. I made her a brunch this morning. I tried to find things that were low carb (for the most part) and everything turned out yummy! We had a crustless spinach and bacon quiche, fruit salad with homemade whipped cream, turkey bacon and not so carb friendly~ banana bread smeared with whipped cream cheese! MMMMM! The quiche was good but maybe a bit salty (and I'm a saltaholic!!). The recipe calls for cottage cheese which is salty and of course the bacon was salty. I used 2% cottage cheese and I'm wondering if I had used FF if it wouldn't have been so salty. It was good enough though that I would make it again.

After brunch I got to open my presents from Rileigh and Gabby. I love getting handmade gifts from them. Rileigh's brought tears to my eyes it was so sweet. Here is a picture~

Well I thought you'd be able to read this, but it's pretty difficult to see so I'll rewrite it (as she wrote it, spelling mistakes and all).

Dear Mom, I love you because....

*you love me

*you take care of me

*you give me huges when i'm feelin down

*you teach me things

*you give me what I need

*you treat me the way I want to be treated

*you take me to places I like to go

*you take care of me properly

*you always have time for me

*you let me snugel with you

*you let me have the best times ever

*you like me for who I am

*you get me cool stuff

*you are like my shelter

How sweet is that, especially the last one. She said she came up with them all and didn't ask the teacher for any help. Awwwww! I love my baby girl! Gabby's class made lilies out of their handprints and made little bouquets for us. They are adorable!! (Pic is at top)

My awesome husband got me a new Coach purse and wallet for Mother's Day which was a huge surprise. I wasn't expecting that at all but I'm lovin it!! :) He's so sweet! I feel kinda bad because his birthday is next week and all I got him was ShamWow!! He's been saying he wanted to try it out for a long time, so I gave in and spent the whole $19.99 on it. Here is a pic of my purse~

Nice huh??? I'm not the type of person who goes out and spends tons of money on clothes, purses and shoes, but I'm totally a sucker for Coach purses!! I just love how soft they are and how after you've used them for a few years they get even softer. They feel like butta!!! They are also made so well that they last forever! The other plus is that he got these at the Coach Outlet in Seattle, so they cost less than they would have at a regular Coach store, can't beat that!!

Hope all you Mom's have a great Mother's Day!!

Dumpster Diving in the 'Kee

Every spring Waukee has a large trash pick up day. This is honestly one of my most favorite days of the year! This Saturday is the pick up day and the fun has already begun!! By Thursday afternoon the "trash" has already started piling up on the curbs around town. People come from far and wide with their pick-up trucks and trailers hoping to find some treasures! We decided to go to the Ice Cream Shoppe on the Triangle (Waukee likes to be different, we don't have a town square, but we have a triangle instead!!) with some of the neighbors. Afterwards, Lindsay convinced me to go drive around a bit to see if we see any good stuff. I have NEVER been dumpster diving or picked up anything off of the curb before. I told Linds that I couldn't believe I was doing this, but I must admit I am so glad I listened to her!! Our first finds were two plastic patio tables. One looks like a small plant table, just big enough to put a potted plant on and the other is a taller round table which we have dubbed the "Margarita Table" because we have been needing a place to set our Margs on these nice spring nights!! Both are in perfectly good condition, just need some cleaning up. Our next big find was 5 plastic patio chairs. I already had two, but neighbor Carrie was always having to drag hers over or the kids would want to sit in em. So now we have plenty for all!! If anyone wants a Margarita~ my front deck is ready for ya!!!

Quick No Sugar Update

I've still been doing *pretty good* with the no sugar/carbs quest. Today was day 9 and I have lost 6 lbs. The only sweets I have had was a piece of angel food cake with strawberries and homemade whipped cream made with splenda and a couple of bites of a churro that Ri got at Costco (Ummmmm if you haven't had one of these you must try!! It took all I had to not snarf the whole thing down!!!) The carbs I haven't done as well, but still doing better than usual. I bought some Carb Balance whole wheat tortillas (fajita sized) to make breakfast burritos, I can't stand having eggs without toast so this was my compromise and it's goooood!! I have also left the croutons in my salads when I've eaten out and I bought some AE lite yogurt. Tonight I was baaaad though!! Went to Applebee's for dollar kids meals night~ I ordered a steak with sauteed mushrooms and onion but it also came with either mashed or baked potato. I couldn't stop myself and ordered the mashed and I ate every single stinkin last bite!!! I think we have to give in sometimes, right??? (Mine didn't come with the bread~ Thank goodness!!)

It's not nearly as hard as I thought it would be, especially the sweets. I think I will try to keep going for a while and see what happens!!

What Is It With Surgeons??

Seriously! Gabby had to get her g-tube button replaced today by the surgeon who put it in. I am not going to name any names so I will refer to him as Dr. B. I totally was not looking forward to going today because I was afraid he was going to "yell" at me~ again. I guess to be fair I shouldn't say he yelled at me, it's more like he made me feel completely inadequate and laid a huge guilt trip on me. The first incident happened several months ago. I had to take Gabs in to see him because she was having trouble with granulation tissue growing around her button. (Granulation tissue is just skin that starts growing up out of the hole where the button is placed.) This is something that Gabby has dealt with since we put the button in. When he saw the amount of tissue she had, he was very upset. He kept asking me how I was cleaning it and proceeded to tell me that I was doing it all wrong. He then basically preformed a small surgical procedure right there in his office, cutting off all of the tissue, which he said really should be done in an O.R. After he walked out of the office I started crying. I was mad that he had scolded me when I was doing what I thought I was supposed to be doing and horrified that I had to watch him do this procedure to my daughter when I totally wasn't expecting it. So now I'm sure you can understand why I didn't want to go back. Here is a picture of a Bard G-tube. The top part is on the outside of her body, the rest is inside her stomach. I flip the little flap open to insert her feeding tube.
I did get a bit of a guilt trip today for the amount of tissue she has growing. I tried to explain that I try to keep it under control. I have silver nitrate sticks at home that I'm supposed to use on it. Problem is that she hates it. It is very painful and she squirms and bangs her head and screams and cries so needless to say I can do a very good job. I explained this all to him to no avail. He just asked if I was "being aggressive enough with it"...... well obviously not. I'd like to see him try to do it with no nurse there to help him. It's hard when it's your own child that you are knowingly inflicting pain upon. Not an easy thing to do and I'm usually in tears by the time I'm done doing it to her.

The other issue I have noticed with surgeons (and not just Dr. B) is that they aren't very nice to their nurses. Very condescending and rude!!! Today he was talking to her like she was a child~ that had to have been embarrassing for the nurse to have him talk to her like that in front of a patient. After Dr. B left, the nurse told me not to worry about it. She said some kids just have issues with the granulation tissue. She also said that she has gotten used to his "scoldings" and just tries to brush it off. I wonder if all surgeons are like that??

Now Dr. B is a great surgeon and I think his intention is in the right place. He's concerned for his patients, but he could try to be a bit more understanding. I have had some appointments and meetings with him where he is just as nice as can be, but if he thinks you're not doing something right he sure isn't afraid to voice his opinion!!! I just hope that she doesn't need to go back to see him any time soon!!!

*Side note* Big prayers going out to my friend who is having some health problems that I just found out about. I am hoping with all my heart that it's not what we think it could be!

Still Going Strong

So today is Day 5 of my no sugar (sweets)/no carbs craze and so far I'm doing fine!!! I haven't had even a speck, lick, smidge, or taste of any sort of sweets! This is amazing considering Rileigh got 5 May Day baskets filled to the brim with goodies today!!

I have had just a few carbs, but I'm hoping that they won't count for much considering they aren't horrible carbs. I can hardly stand to eat eggs without toast, so I compromised and got the fajita sized, whole-wheat , carb smart tortillas. Oh yummy!!! So good and it totally makes up for not being able to have a couple of slices of toast!! I had Wendy's chili for dinner the other night, not really realizing that beans have carbs, but I figure that beans are so good for you that that must cancel out the bad stuff!! Right?

I went to lunch today at Los Tres Amigos and finding something carb-free on a mexican menu ain't easy! My friend suggested fajitas with no tortillas, so that's what I had and I can't say I really missed not having the tortilla. It was delish!

A couple of added bonuses:

*Around 2:00 every day I was getting soooo tired and would give anything for a nap. Since I've cut out most of the sugars and carbs, I'm not tired anymore!! I really feel pretty good!

*I have lost 4 pounds! (In 5 days!!) Wasn't why I started on this little journey, but it may keep me going!!!

Still not craving sweets, but I am still missing those carbs! I really, really, really wanted pizza for dinner, but instead I had deli sliced garlic peppered turkey, cottage cheese and carrots and cucumbers with light dressing for dipping.

Next week isn't going to be so easy~ I have to take Gabs to MN to see her Epilepsy doc on Monday. It may be a bit more difficult to eat good on the road! Then my mom is coming for Mother's Day weekend and I'm thinking about making Sunday Brunch. I'm gonna try my darndest to keep it up! I will post updates!!

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!