Eczema or food allergy???

For the last couple of months Dani had this rash on her chest. It is light in color, but when she is ticked off, it will get bright red and radiate to her back. We haven’t changed laundry detergent, we actually use the perfume free kind. Since it wasn’t going away and now will get bright red at times even when she isn’t ticked off, we brought her in to the doctor. Dani is drooling a lot lately and we have a bath towel under her head to soak up the drool. But she is always on her side and the drool never goes down her chest. The only other thing we changed in the last couple of months is the oil we are adding to her feedings. The dietitian wanted us to us canola oil but Dani had a tough time with this. We changed it to olive oil and she seemed to do better with this. Could it be a food allergy that is causing her rash or did she develop some type of eczema? We are going to take her off her oil for 10 to 14 days to see if her rash clears up, if not we have a prescription we can try on her. Dani must have felt she didn’t have enough doctors yet and wants to add a dermatologist???

Happy 4th of July!

Happy 4th of July! I am glad the rain stopped so the girls can start shooting off their fireworks. Grandma Donna came down and Tony came over with the Tank. Everyone is currently spending some time in Lennox to give Dani a break. She isn’t used to all the “energy” the Tank has. Once Dan gets off work, we will grill and just chill for the rest of the evening. Have a safe and happy 4th!

Listen to this crap…

I have been putting it off for a few months, but I finally called our benefit line to get approval for more sessions for the girls.  Below you will read how my conversation went and why I wait until I am in a cranky mood before calling:

Me: I would like to know what I need to do in order for more sessions can get approved for Kaylee and Brianna.
Renee: You have a great plan, in fact, let me tell you what benefits you currently aren’t taking advantage of.
Me: Not necessary, I am just calling for Kaylee and Brianna.
Renee:  You currently have 7 free sessions left for yourself and your husband has all 10 left.
Me: Again, I am just calling for Kaylee and Brianna.
Renee: Let me get this straight.  You don’t want any help for you or your husband, just your girls.
Me: That is exactly what I am saying.
Renee: From the sounds of it, you could benefit from some sessions.

At this point, I know it can only go two ways.  I could either mess with them or get cranky.  Can you tell I have been down this path many times…

Me: Why do you say, I can benefit from some sessions?
Renee:  Well, it sounds like you are in denial with your current situation because you won’t talk to anyone.
Me:  Denial?  Are you kidding me?  Where did you go to medical school?  I am first to admit that there is something wrong with Dani.  In fact, I just have to look in her eyes and I know she is not my same little girl.  So, no, I am not in denial nor do I want to waste my time to talk to anyone.
Renee:  It is not a waste of time to get everything out in the open so you can start healing.  You have used three sessions.
Me:  Yes, three sessions that was a waste of my time.  Session 1, she hopped my up on many medications that incidentally didn’t work.  Session 2, this was a bible thumping spirit that went on and on about “God’s Plan.”  Session 3, was a born again nutritionist that attacked my eating habits.  So, yes, a waste of my time and let’s focus and just accomplish the reason for me calling today.
Renee:  But you bring your girls somewhere.

Ok, by now, my anger has flared…

Me: Are you going to help me or not, or do I need to talk to your supervisor.
Renee:  It sounds that you have anger issues.
Me: Of course I have anger issues.  You want to talk, let’s talk.  I am angry at the fact that the doctor that did this to my daughter is not held responsible for her actions.  I am angry to find out she has existing malpractice suits against her.  I am angry that she is also the sole reason Dani needed a blood transfusion just 5 months after she gave her brain damage.  I am angry that the little guy can’t take on the big corporation and win any restitution.  I am angry that every time I turn around I have to fight for approvals for insurance, medication, etc.  I want to speak to your supervisor.  I am done.
Renee:  What do you mean done?  Are you going to hurt yourself?

ARE YOU KIDDING ME?  Needless to say, she never passed me to her supervisor and I hung up on her.  I have no idea if the girls are going to get approved for more sessions or not only time will tell.  This is just a little taste of some of the crap that we go through.  If it wasn’t hard enough just to take care of Dani, stuff like this gets added ALL the time…

HAPPY 4TH BIRTHDAY DANI

Dear Dani –

Wow, I can’t believe we are blessed to celebrate another birthday with you. You show us time and time again what you are made of. I have to admit, if it was me going through everything that you do, I would have given up a long time ago. But you keep going, even when you hit a wall, you always find a crack and make your way through. You are one strong little girl that has captured the hearts of many. I hope you feel the love and support that everyone gives to you, little one.

You have had your second healthy winter. I have to admit this is quite the challenge because the insurance company no longer pays for you to get the RSV shots. You only had one hospital stay, and that was not your fault. The doctor placed a too long of GJ tube in you and you had to show them once again, they made a mistake with your care. The doctor was clever and kept telling us that “it doesn’t cause issues like this.” But once they finally listened to us and pulled that stupid tube out of you, you instantly improved. Once again, they failed to listen to you…

I have to admit at times, I feel cheated. Tears will stream down my face. Not because you are disabled, never because of that. But because, I will never hear you say, “I love you” or “Mommy.” It pains my heart that I cannot take away your pain or make you better. But I vow, that I will continue to work my hardest to get you to the right medical family that will help improve your quality of life.

You keep fighting little girl, you keep teaching them your mysteries. And I am honored to be a part of your life and can’t wait to celebrate your 5th birthday.

                                                                                                     Love, Mommy

Dani had a good month. Routine weekly chiropractor appointments keep her busy. We started up OT and PT again. She gets therapies once a week for 30 minutes. Today, Dani got her last casts put on her ankles. These will last two weeks this time instead of one week. The casts are to help bring her ankles back to a neutral position. Dani is getting new AFO’s made and she will begin standing in her stander again. Dani was also fitted for new hand splints as well because her wrists are getting tight. Her Botox and Phenol shots were a success and we have seen a huge improvement in her. She breathes much quieter, not as snorty. She is much more relaxed. Dani once again sleeps through the night. What we once thought was seizures keeping her up a night, turned out to be muscle spasms. We are working on packing on some extra pounds for Dani. We need her to gain 4 pounds in order got get a Baclofen pump placed to help her out. This is quite the task because it took a YEAR to gain 1 pound!

The girls spent two weeks at Grandma’s house. They got to spend time with Uncle Chris now that he is state side again. They currently keep themselves busy at the pool.

Last weekend we celebrated Dani’s birthday. I am always touched by the amount of people that help celebrate with Dani. It means so much to us to receive so much support from everyone. I took the day off from work so we could have a “family” day on Dani’s birthday. Dani let us go to Falls Park and out to dinner.

Once again, thank you for all your support, it really means a lot to us.