A much needed update for sure!!

So yet again I have neglected updating our blog.  I really wish I was better at keeping up with this as a lot has happened since I last posted.  I think I will start with what we have been currently dealing with and then  work from there to try to remember everything.

Elizabeth has c.diff right now.  For more in depth info on c.diff, check out this site c.diff.  Basically it is an intestinal bacteria that causes severe diarrhea and horrible stomach cramping.  Elizabeth got it from being on her Ery-Ped for 10 months for delayed gastric emptying.  Unfortunately the Ery-Ped killed the bad and good bacteria in her gut, but not the c.diff, so the c.diff over populated and became toxic to her system.  She was dx with the c.diff 2.5 weeks ago.  They put her on Flagyl which is the antibiotic they use to treat this bug.  The diarrhea went away with in 3 days of starting the Flagyl, but the Fagyl was done last Monday and on Friday the diarrhea came back.  Saturday sent us to the emergency room where they promptly put her back on Flagyl at a higher dose this time and I also added Florastor.  Hopefully this time it will kick the bug in the butt.  However if it doesn't then our next step is Vancomyacin, another very powerful antibiotic.  Thankfully her diarrhea has stopped already as well as the tummy cramps have gone as well.  We have been on the Flagyl for 3 days of 14 days now.

On June 10th, Elizabeth finished school for the summer.  She will be in 1st grade in the fall.  She will still be in her special education classroom that she was in this year as it is a k-1 loop class so she will have the same teacher.  Our goal is to get her over the the general ed 1st grade classroom as much as possible to be able to main stream her eventually.  She did well over all in kindergarten and actually had to miss the second to last week of school due to the c.diff.

She is going to daycare 2 days a week during the summer and is spending 2 days a week at my sister's house as well.  I am off on Tuesdays, so she spends those days home with me.  I am going in on June 30th for carpal tunnel surgery on my right hand.  I will have 2 to 4 weeks off work depending on what they can find for me to do the last 2 weeks.  So she will be getting some probably much needed one on one time with me during the month of July.

She is still working with her social worker weekly to help deal with her defiant behavior and adhd.  We also just went through the disability review with the state and federal government.  She has had disability since birth and is suppose to be reviewed every 3 years.  However the state has been very behind in their reviews and our 3 year review just came up.  Fortunately because I keep all her medical records, school records, and what not she didn't need to actually see a dr for the review.  All my paperwork and that of the doctors was enough to prove her disability and continue her being able to receive her SSI for the next 3 years.  For me it is a catch 22 in regards to how I feel.  We definitely need the money she gets from SSI to pay for her out of pocket medical needs as well as allowing her to continue to keep her Medicaid to pay what my insurance doesn't, but it's still heart breaking to continue to realize that she does have disabilities.  Most parents that don't have children with special needs don't understand this feeling.  I by no means am in this for the money.  I really wish my daughter didn't qualify for or need the medical attention that she does.  So yeah, I'm happy she is still disabled, but sad as well.

We have weaned her off the Ery-Ped for the delayed gastric emptying, which is a great thing, especially knowing this is what caused the c.diff.  She is doing well off it, but I should mention that the Periactin we put her on for the abdominal migraines also helps with the delayed gastric emptying, so in reality we didn't exactly get her off a drug for it but basically replaced it with another drug.  She is eating well lately and if it wasn't for the damn c.diff I wouldn't have to use her tube at all the last month.  However because of the c.diff and how bad she was when we first got her diagnosed, we actually had to use her pump to feed her a couple nights.  Everything was going right through her and she was loosing weight.  Also the Falgyl has to be compounded from pills and tastes horrible, therefore the med is going through the tube.

 Eating an elephant ear at a local community celebration.

 One of the two nights I had to put her on her feeding pump to help her get calories and hydration as well as give her tummy a little break while she had c.diff!  A very sad couple of nights for me.

Petting a cow and loving it.  She is her mamma's girl when it comes to animals!

I will try to update this again a lot sooner then I did last time, but I know I am horrible with updating here, so no promises.