Today we took a little drive down to Miami. This trip wasn’t for pleasure though, it was all business for Arabella. We went to the GI doctor to work out her reflux issue and take the next step to getting the trach out. We learned today that the step that we will be taking is a pH probe. Aidan had this done TWICE! Interesting story if you want to read about it you can, here and here. The plan is to do a pH probe to check if she still has reflux. Normally you have to stay over night at the hospital but I think I’ll beg for them to let me bring her home since I’ve done it before. We’ll see if they let me.
We met a really amazing woman and her 5 year old daughter while at the GI doctor. Rich was the one who was actually talking to her while I was in the room with the doctor. She had a really sad story. Her daughter was in one of those wheelchairs that has head support and her hands were contorted and she was drooling. It was quite sad but what was even more sad was that 4 months ago she was a perfectly healthy and happy 5 year old.
Her mother, Amal, was very open in sharing her story with Rich. He said she seemed desperate and frustrated. 4 months ago her daughter lost a tooth. No big deal right? She was getting ready to start school and her mom took her in to the dentist to have her teeth cleaned. A few days later she noticed that there was pus where her tooth once was. She took her into the pediatrician and he prescribed an antibiotic. She took the antibiotic and after 3 days the pus had spread and was now on the insides of her cheeks. Concerned, her mother took her back to the pediatrician and he gave her “Magic Mouthwash” which was supposed to get rid of any infection she might have in her mouth. The very next day after using the Magic Mouthwash the little girl couldn’t even walk!! Her mom said she was scooting around on her bottom and from that moment on she began to deteriorate quickly. She told her mom she couldn’t breathe and was rushed to the hospital where doctors were stumped. Nothing was done for her. She has gotten so bad that she can no longer walk, talk or eat, has seizures and constant tremors. She is on extremely powerful & toxic medications and is losing more and more control of her body every day. All of this in just 4 months.
Amal is an amazing woman. She is becoming a strong advocate for her daughter and is determined to make her daughters life better. She completely touched my heart and I will always be praying for this little girl. We will be keeping in touch with them and want to help in any way that we can. Rich has done some research and even came across some possible causes. We are hoping and praying for a positive outcome for them both.
The people that we’ve met in doctors offices and hospitals have really impacted me and helped me to be more grateful for the health of my kids. I will never forget Ellie. You can read about her here. Funny follow up story about little Miss. Ellie. I met her the day that Aidan got his trach out and actually saw her name on the surgery sign in sheet on the day that Arabella got her trach put in. Ellie got her trach out on the day that Arabella got hers in! Dr. Singer is also Ellie’s doctor and told me that she is doing really well:D
I have a ton of pictures to post from the past couple of weeks but that will have to be another night:D
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