Besides the sugar free diet, Addison had a great week last week. We didn't have any doctor appointments. She did develop bad diaper rash with blisters which we are still battling. We think she may be allergic to soy so we have switched her to regular whole milk. We headed over to Ocean Springs Thursday night for me to go to work. On our way home on Friday afternoon we stopped by Front Beach and let her play in the sand for an hour. She loves the beach and feeding the seagulls. We stopped to eat lunch and it never occured to me restaurants do not have sugar free drinks on the menu. I still have a lot to learn about this diet. On Saturday we celebrated my nephew, Colin's 1st Birthday. The party was another obstacle for us. Addison of course wants candy when she sees other children eating it. My sister in law was nice enough to make her sugar free cupcakes. On Sunday Addison woke up around 3:30 and I just couldn't hold in the surprise of what the Easter Bunny left so at 4 she got to see all of her goodies. Since we did not find her a bunch of sugar free candy, the Easter Bunny left her a live bunny. We are not sure if the bunny is a male or female but I named it Ester. Addison however keeps calling it Chester, so Chester it is. He is all black and adorable. She is so excited to play with and care for Chester. I heard her asking Chester if he was feeling okay and if he needed an IV.
Monday afternoon she had an appointment with her ENT Dr. Scallon. Both of Addison's tubes in her ears are nonfunctioning beacuse they are clogged with ear wax. Dr. Scallon was able to remove some wax buildup from her right ear canal. She said her body produces so much wax the tubes are clogged and stuck and cannot fall out. She prescribed antibiotic ear drops for us to give Addison twice a day. And we also have to mix hydrogen peroxide and water and basically pour into both ears during her baths for 2 weeks to try to break up the wax. We will follow up in 1 month on May 8th. If the tubes still look bad Dr. Scallon will try to suction the wax out of the tubes and if that doesn't work she will surgically remove the clogged tubes and replace them with new ones. I want to be positive and think her tubes will unclog from the antibiotic drops but I am so used to everything going wrong it is hard not to expect the worst case senario.
Last night Addison woke up around midnight coughing and vomiting. Her cough sounded so painful and she would cry everytime. We had a rough night. We went to see Addison's pediatrician Dr. Guidroz this morning and she believes she is allergic to the bunny. She prescribed antibiotic ointment for her diaper rash and allegra twice a day for her allergies. She said we do not have to get rid of the bunny yet but the bunny has to live outside and we have to wash her hands very good after she plays with Chester. She said for me to apply for disablity Medicaid and for SSI income that Addison should have been receiving both from birth. She said after I apply she will write a letter stating Addison does have a disability that will affect her the rest of her life. It is so weird, I know Addison is sick but it is like I am still in denial. Just hearing I have a child with a disability from her doctor made it even more real. So that is my next step, applying for both benefits. I have been applying for regular Medicaid and that is why we keep getting denied. Disability Medicaid is a completely different application process. I asked more questions about Addison's sugar free diet too. Dr. Guidroz said as long as we are omitting the sugar juices and candy we can try to give her regular milk and other foods. Our next step is allergy testing. Maybe we are feeding her something she is allergic too and that is why she is still vomiting.
Please continue to pray for Addison, her doctors, and that we can figure out how to be approved for the SSI and Medicaid benefits. Thank you everyone for all of your support.
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