C-Diff Again

C-Diff

Yes...Kylee has c-diff again. I am thinking she has had it for about 2-3 weeks now and we just got it diagnosed on Saturday. She started with a lot of #2 diapers and we thought maybe we were running her feeds on her pump to fast as we were trying to shorten the time she had to be hooked up to the feeding tube. So we dropped her down and she still continued. I called the Dr and said I wanted her tested for c-diff. She sent all the paperwork over and I went and picked up the kit right away. The lab tech told me I needed 2 tablespoons of stool so it took me 5-7 days and I wasn't even close to that. It is so runny it ends up soaked in the diaper or everywhere else. So I took it in and asked if they could run it on what I had and a different then what gave me the test said we had way more then they needed. She has no idea why they would of told us we needed so much. So it came back positive yesterday and we started on the medicine yesterday. She also was starting to become dehydrated from going so much that I was worried she was going to end up in the hospital with an IV. We have such wonderful nurses that they just got her going on the pedialyte and lots of water and she was good to go.

Procedure

I was worried that with the c-diff Kylee's procedures for Monday would be cancelled but they said we are good to go. They will just put us in isolation once we get to the hospital. So on Monday we are going to Milwaukee and she is having an upper scope done with biopsies of her throat, her mass removed from her ear and a culture of her ear so we are sure to be treating the non-stop ear infection with the correct medicine and a new GJ tube (feeding tube). So it will be a busy day but hopefully we will be done with procedures for a while.

Therapy

Even with Kylee not feeling well she has been doing great when it comes to therapy. As I stated she ate a whole jar of baby food which she continues to eat pretty good. She is getting better at her sitting and she is now able to stand by the sofa with nothing on her legs but her orthotics. She kind of lays over the sofa cushion but just the fact that she is keeping her legs down is huge. Usually she gets them tucked under her butt as fast as she can. We also got some new equipment. We got an airwalker swing for in the basement. It was donated by another family. Kylee loves to swing but winter is coming and we won't be able to be outside much. We also got something called a HOSPA dress. It is kind of like a older style johnny jumper. It is a suit that goes around her body and then it is on a pulley system. This is to help her weight bear on her leg but to also teach her cause and affect. Like when she kicks her leg she spins so they want to teach her that if she does it again she will get the same response. Accidental movements become purposeful movements.

Week Ahead

So Monday is Kylee's procedures, Tuesday is speech and hopefully she does as well as last time, Wednesday we have my mother's brother's funeral and I also have to have Kylee's paperwork for school all signed by Wednesday and we have physical therapy on Wednesday. The rest of the week nothing to exciting.....just how I like it :)

**I have pictures of Kylee in her swing and standing by the sofa that I will try to post soon...we are on our way to our block party but wanted to post an update before we left otherwise time gets away from me.

Eating

Eating

Just wanted to post a quick note that Kylee ate a whole jar of number 1 baby food yesterday. We are so excited about it. She ate most of it during speech therapy and I was telling her how proud I was of her and she gave me the biggest smile ever. It just melted my heart and wanted to make our nurse cry. I love moments like that. Then she finished the jar off at supper. Small step for some but a huge step for us. I hope she continues on this path. Just wanted to share the news with everyone.

New Pictures and Appointments

Pictures

Kylee getting ready to go for a walk with her nurse.

Kylee was a ladybug for Halloween at the campground.

Kylee again getting ready to go for a walk.

Trying to get a nice picture of the kids is hard work. Guess this will have to do.

Appointments

We have had 2 important Dr appointments in the last week. We hard cardiology which we were told her heart looked really good considering how high her blood pressure has been even with the increase in her blood pressure medicine. If she continues to have high blood pressures we are going to have to increase her again. Her left side of her heart is also still leaking but is not leaking anymore then what it was back in February so she is not too considered about it at this time. So all in all a pretty good appointment. We don't have to go back to see her for 6 months and just have to continue to call with her blood pressure results.

We had her ENT appointment today in Milwaukee. He said she has a granuloma. It is basically a build up in tissue. This is the reason for her constant ear infections. The granuloma does not allow the drops to get all the way and it always is basically a breading ground for infection. We are going to use ear drops until she has her scope done on the 28th and then the ENT is going to come in and remove it and then if it still looks infected they will do a culture to make sure we are treating it with the correct medication and then they also said sometimes they have to suction out the ear so everything gets out so the ear drops get all the way in. So all in all was very happy to hear that we should be able to get rid of the ear infections soon. He also said he don't feel her tonsils and adenoids need to be taken right now. He said he feels that the risk of taking them out doesn't out weigh the benefits. He said if her snoring gets worse or she has more apnea episodes we can revisit that decision.

Therapy

Kylee has been doing pretty good in therapy lately. She is able to sit by herself for about 20-30 seconds. We have been using knee immobilizers (thanks to Alayna's mom) and she has been doing really good standing next to the sofa. She also is doing really good with helping to get dressed and undressed. She picks her head up to take her shirt off and then she often leaves it up until you put the next shirt on. Sometimes you even have to tell her it is ok to put her head down or she just keeps holding it up. She is also starting to reach out more to grab at things. All may seem like little things but are huge to us. We are also getting started again on the school process. We started last year towards the end of school and decided we would finish up when school started again and are hoping she can do a early start (October or November) and do a slow start instead of throwing her into it in December. As always enjoying every minute with Kylee and am enjoying all the changes we are seeing in her. She shows such great potential.