A little update and an IEP :)

I so appreciate everyone's input about my sweet Addy boo. First off, her bottom is somewhat better after starting the antibiotic and anti-yeast medication. To address some of the suggestions and questions...We haven't used baby wipes on Addy in well over a year and a half. Addy has had a previous reaction to Pampers diapers and obviously we stopped using them. She has worn Huggies Supreme or Cuties without any problems so I don't think they could be the culprit. We gave Addy a 24 hour belly rest and she strictly had Pedialyte yesterday. She still has the diarrhea today but she seems to have more energy and is happy. She was NOT happy last night. Not sure if the electrolytes helped or what. The bright redness on her bottom is better, definitely not gone but better. She does still have areas of bleeding. We have seriously tried every diaper remedy known to man. We are currently using a mixture of  Nystatin powder, Zinc (40%), Hydrocortisone, and Triple Antibiotic ointment. We are also using the Bag Balm. We do let her "air out". Every diaper change she is dried with a hair dryer to make sure we aren't trapping in any moisture with the barrier. I am going to follow doctors orders and follow up Monday. If we are still having an issue on Tuesday when we are in St. Louis we will go by the hospital. If we are blown off, there's more than one :)



she still spends a lot of time on her belly since it hurts to walk and sit :(

Today was Addy's last day of Pre-K :) I couldn't be happier with her progress this year. She has done fantastic even with missing 21 days of school. We had her kindergarten IEP meeting yesterday and I am pleased with her plan for next year. I wish she could spend a little more time with her peers but unfortunately she really needs the therapy too! It's a double edge sword! Here is her plan right now, as we all know, IEPs are not written in stone and things can always change :) I'm just going to give a little snipet of it, no one wants to read an entire IEP!


Addy with her amazing team :) Ms. Melissa, Ms. Debbie and Ms. Deborah


Our concerns were addressed: we want her in the regular classroom as much as possible. We have requested that we are given her schedule prior to school starting (as much as possible, I know not everyone schedules before school) so we know what she may be missing in the regular classroom, we do not want her assigned to just one paraprofessional, we don't want her dependent on an adult so we have requested that the para just to shadow Addy at this time and give her minimal assistance, we want the para to keep her on task, guide with hand writing etc. We want Addy's work to be hers :)

Addy's special education services will include the following:
30 minutes per day in the Resource Room for task completion
30 minutes per week of Adapted Physical Education

Related Services:
Occupational Therapy 60 minutes per week
Physical Therapy 90 minutes per week
Language Therapy 75 minutes per week
Speech Therapy 75 minutes per week

Soo... Addy will 77% of her week with her typical peers in her kindergarten classroom (she will have a para with her, but like I stated, we want them just to assist if necessary).  At this time we have also requested that Addy not participate in Regular PE and Art. PE just isn't safe for her, she just isn't stable enough (she's already been knocked down) . Art isn't appropriate either, she just doesn't have the motor skills. So hopefully she will be able to go to get her Resource minutes at that time or a therapy. The problem with that is, our special classes are on a five day rotation and they don't always stay on the same days so that may make scheduling a little messy since she will be participating in Library, Music and Computer Lab. I hate scheduling, so glad I don't have to figure out Addy's!

The boys have their last day of school tomorrow. They will both be in Junior High next year :) So bizarre to think that is even possible!

Looks like she was better

I really thought maybe we were improving yesterday. Friday afternoon we went back to the pediatrician because all of the stool tests run were negative, including C-Diff and Rotavirus. She is still pooping foam. I kid you not, it's like acidic foam. As we were waiting on the doc I was letting Addy lay on the table bare to wind (which we've done several times this week). The nurse couldn't believe how bad she looked. Once the doc came in (our ped is still on vacation) she was also not pleased with how bad Addy looks. She was frustrated as well because she's just not sure what's going on. She ordered another set of samples to look for Giardia and other illnesses that could be caused by being exposed to sick cattle, exotic animals etc. We don't think that's it but you never know. We do live in a rural community and Addy's favorite place to play on the playground is the dirt box. Who knows what's in it! As the doc was checking Addy over she started to have some stool and the doctor just watched as Addy cried and pain and the foam overtook her poor little raw bum :( She said she has NEVER seen this before. She's been around for at least 16 years that I know of so she's not a newbie. She prescribed Cephalexin and Diflucan to help with possible infection of her diaper area.

 Yesterday morning Addy woke up not crying and was walking around a little bit more than she has been. She still  was very sensitive to sitting and being held had to be the way she positioned herself. We had to go into Springfield to drop off her specimens at the hospital and she seemed to be the happiest she's been in days so we dropped by our DSGO picnic. Addy hasn't really been out of the house except to the doctor and a quick trip to Panera Bread so she needed the sun and fresh air. She was very excited about the swings :) I was a little afraid to put her in because I knew if would hurt. However, girl does love to swing so she sucked it up and swung away! Once in awhile she would grimace so I knew she was still hurting :(

It was so nice to be outside and hanging out with some of our favorite people :) Addy also LOVES Louie from the Springfield Cardinals. He was a hit with just about everyone :)

 Addy and Gabbie chatting it up :)

 Kissing her Elmo balloon :)

Once we got home she was back to crying and whining and crying, she was pitiful, she does NOT feel good. I made the mistake of Googling "foamy diarrhea" and if what I found is any indication, it could possibly be Addy's gallbladder. She has all of the symptoms. So, if these current tests are also negative then I'm going to request we are referred to a local GI (somehow) and ask for some images of her gallbladder and intestines. Something is definitely wrong!

Killing Me!

 Addy has been fighting the runny hiney issue for almost two weeks! She appeared better last Tuesday but then went downhill again on Wednesday. I finally decided to take her to the doctor on Monday. Her doctor is out (naturally), so we saw the doctor on call. I liked her but I had to remind her six times that Addy is fed via g-tube and I can't modify her diet! (BTW her formula arrived on time this month :)) Anyway, a stool sample was taken and she told me she would test her for everything and I would get a call in 12-24 hours with the results. I didn't hear anything yesterday so I called first thing this morning. I did find out that the only test back was Salmonella and another bacteria and they were negative.  I asked the nurse to call in a refill on Addy's "butt magic" since her entire diaper area is bleeding. The doctor did tell me to add triple antirbiotic ointment to it too since she has open wounds :(  I'm not kidding, this poor child is MISERABLE! She is even beginning to complain of pain which she has NEVER done before!
 
I hate having to change her diaper because she says "no no no" and then says "sorry, sorry" and grabs the sides of her changing table to brace herself :(  A little bit later the doctor called me and said that she had the rest of the results and everything was negative. I was pretty surprised. I thought perhaps she had Rotavirus so I asked her "Even Rotavirus?" After a pause she said "we didn't test that." Are you kidding me????? Ugh, she told me she would call the lab to see if she could have them run the test with what they had. Within five minutes she called me back to let me know that not only did Roto not get tested neither did C-Diff since the sample wasn't in the correct specimen container! I don't think it's C-Diff but I would like to rule it out, SOMETHING is wrong! Sooo... I have a new sample to take in tomorrow so they can run those tests too. Not sure when I'll be able to do this since this time of year is more than crazy and I have three IEP meetings tomorrow. I would have a chance after school before a meeting in Springfield but that means it will be even longer before we find out what is going on!

Thank God this week is over!!

This has been a very trying week!! It actually started last Saturday. I woke up at 3 in the morning with a temp of 101 and felt awful. Scott was out of town and Jake had a ball tournament so I has to suck it up (don't all moms??). When Addy got up she had a pretty nasty diaper but seemed fine otherwise. We went to the ball tournament and as long as I kept in some Tylenol I was ok. I was supposed to go to Joplin to take some pics of Jarika before her ZTA formal but fortunately she realized how awful I felt she said it was fine if I didn't come :) Addy and I stayed for two games, they won the first one and lost the second but they won the third :) When Addy and I got home I was such a bum because I just didn't feel good!

 (Glad I could steal a pic from Facebook :)

 When I woke up on Sunday I felt just a little better and thought it best I miss church and rest which is what we did. I had a huge week at work. We had preschool screenings all week and I knew that I did not have time to be sick! I think we ended up screening over 180 kids! That's quite a few for our little district. I worked Monday and had screenings until 7:45 pm. In the afternoon Addy started running a temperature and was just a little crabby. She had a pretty loose diaper so she stayed home from school on Tuesday. She seemed ok during the day and was happy and didn't have a temp. I worked all day then had screenings again that night. Cooper had a band concert at 7 and fortunately I made it just in time to see the 7th grade perform! Wednesday we had screenings all day. Addy had two loose diapers at school so she was sent home :( fever came back and she was pretty darn poopy all day, literally! Had our usual busy Wednesday night and I was so tired! Thursday Addy had to stay home since she hadn't been poopy free for 24 hours and she was still running a low grade temp off and on. By the afternoon she started having really watery/goopy eyes to go along with it! Poor girl! I got a call from the school nurse that Cooper said he thought he was going to throw up so I had to take him home to sick bay as well! I worked until 7 again and when I got home he seemed fine. Addy was about the same, runny stool, low grade temp, and gunky eyes. Today she had to stay home from speech and I had screenings all day anyway so I wouldn't have a chance to bring her back home anyway. About 2pm the school nurse from the Junior High called again to let me know that Cooper was back in her office and said he thought he was going to throw up!!! UGH! I just had him come to my classroom since we were finishing up screenings. He didn't look great when he showed up either :( I went to check on him and the poor boy was throwing up in my trash can in my classroom :( He looked awful! Poor kid! Addy ran temp again today and her eyes and diarrhea aren't any better. I don't really think I need to take her in but I'm debating. She's not showing signs of dehydration and is acting absolutely fine! I am ready for a break! This week has just about done me in!!! I think it's definitely a jacuzzi type of night!

I want to thank those of you that have ordered 31 for the past couple of weeks :) So far I have $150 that I will be donating to Reece's Rainbow :) Not near what I wanted but it's a start! If you'd like to have a catalog party or just want to order, please do! You can contact me on Facebook or shoot me an email: cammie.heflin@gmail.com. This month's special is spend $31 and get an All In One Organizer for $5, they are usually $20! Don't forget that you can personalize too :) I'm waiting for my new bag with T21 on it :)

Making First Order :)

Well, I'm two weeks into my Thirty-One Gifts adventure and I am pleased to say that I am actually selling things, however, not near my goal yet :( I'm trying not to get discouraged, things happen if they are meant to right??? I will close my first half today so people can get their April specials (spend $31 get any purse half price) and I will start a new party for RR tomorrow so people can get the May special from the brand new summer catalog! I'm ordering a new bag with T21 embroidered on it :) I can't wait to get it! I do love this so far and I'm glad I'm at least able to help out other families adopting right now, it's a true blessing to help others :) If you want to order by 11:30am CST, click here. If you want to check out the May catalog, click here starting May 1!!!

Ready for School :)

This morning we were in my classroom waiting until it was time for Addy to go to class. Thursday is the only morning that Addy does not have therapy before class. I work with a student so Addy usually comes with Daddy on Thursdays but he's on a Geocaching trip :) Anyway, I share a classroom with my amazing friend, Amy, and we have a little partition where my area is. I was back there doing some things before class and Addy was in her usual spot (admiring herself in the mirror). I came around the corner to this:


Yes, the girl has mad de-robing skills going on right now! Apparently the 3Ts are still a tad too big! lol. I asked her if she was ready for school and she gave me an adamant "YES!" Uhmm, sister, you are missing your pants and shoes, I think that is frowned upon at school! She cracks me up :)

I came home this afternoon to a very unexpected gift! Our sweet friends, Jenni and Grace sent us something amazing for Addy! An extra can of ELECARE!!! How amazing is that!?!?!? I am always overwhelmed with how wonderful our DS community is! We are all truly family and I could not feel more blessed! Thank you so much Grace (and her mama Jenni too!)

(I'm not sure why this video is sideways and my techogeek is awol!)

Remembering Emily

Addy and I only knew Emily a little bit we read about her everyday! I wish I could find the pic of them together, I know there are some out there somewhere!

We have a wonderful praise worship service at church this morning! It was completely led by our youth. I love it when the youth show their stuff! I shared the reason Addy and I were sporting our pink today. It was quite ironic that three people had mentioned that Addy and I were pretty in pink before service :) Our church prayed for Emily and her family and several people said how sorry they were to hear about Emily's passing. It's never easy to talk about a child dying. So we have prayed for her and thought of her all day today. If you get a chance, say a prayer for her family, so many changes for them.