Archive for May 17th, 2012

National Jewish Health, Day 7

Previous: National Jewish Health, Day 6

If you are new here, you can find all of the posts in our Overcoming Eczema, Food Allergies and Night Terrors series here to get caught up!

Bella is still sleeping through the night with clonodine. She did some sleep talking last night, but nothing that disturbed either of us.

We had our second attempt at an upper GI this morning. This time Courtney from child life went with us.  It took some serious encouragement to get Bella to lie down on the table.  The radiologist and his assistant told us to give up twice.  They more or less told us this isn’t going to work, but Courtney just smiled at them and continued coaching Bella.  She was great!  I had given up hope myself, when finally, Courtney gently pushed Bella down from sitting position to lying on the table and she stayed there.  Bella asked me to taste the grape flavored juice (barium) before she would try it.  It was actually not bad.  It tasted like grape flavored tylenol.  Bella drank it like a champ.

The doctor’s were right.  Bella does have reflux! We have asked her several times if she has any of the symptoms, and she always says no. They want me to follow up with ENT at home.  They want him to look closely at her vocal chords, her tonsils and adenoids.  Her tonsils are always huge and could be contributing to the problem.  If the ENT says they are not, we are to follow up with a gastroenterologist.

After the GI, Bella got to get a special prize from Courtney’s office.  It was a huge Barbie Glam Bedroom set.  I don’t know how I am going to pack all the prizes this kid has earned!

Once back on the pediatric floor, the doctors checked Bella’s skin and said to continue baths and wraps as we have been (2 baths per day, Morning = vanicream on body and protopic on hands and feet with dry wraps/clothes/socks.  Evening =  Vanicream on body with dry wraps/clothes and steroids and wet socks on hands and feet).  After meeting with the doctors, she went straight to the tub.

After the bath, we started the baked egg challenge. The egg was baked into a muffin/cupcake just like the baked milk challenge.  She is served a little bit at a time all day long.  She passed!!!

In case you didn’t get that, she passed wheat, baked milk and baked egg!  That means she can eat most “normal” baked foods! Tonight she ate a hot dog that volunteers grilled with a bun!

While Bella was working on her food challenge, I had parent group therapy.  The theme was hopes and fears.  All of the other parents were new to the program.  I tell you, I have so much to be thankful for. These kids have many more problems than Bella.  There wasn’t a dry eye in the room.

Tomorrow we will challenge non-baked egg. I wasn’t sure if she’d like scrambled eggs, so she will eat it in the form of French toast.  Yum!

Next: National Jewish Health, Day 8

You can read all of the posts in the Overcoming Eczema, Food Allergies and Night Terrors series here.

National Jewish Health, Day 6

Previous: National Jewish Health, Day 5

If you are new here, you can find all of the posts in our Overcoming Eczema, Food Allergies and Night Terrors series here to get caught up!

We had a wonderful weekend here in Denver. We had so much fun at the aquarium on Friday that we went back with my friend and her little boy on Saturday. On Sunday we joined our friends at their church and spent the afternoon at the Ronald McDonald House playground. I was proud because I was able to give Bella a bath and wrap (cover) her hands and feet and still get to church on time. My church family at home will never believe this!

Isabella slept well all weekend. Sleep feels so good! Just before bed on Sunday night she got itchy. It was the first time since early in the week. I immediately started questioning everything and blaming myself. Is it because I let her play outside all afternoon? If that’s the case, I’m in trouble when I go home. Did I not put enough vanicream on her throughout the day?  Was it the cookies I let her eat?  They had milk in them.  Maybe they weren’t baked long enough.  Is she itchy because she didn’t have a nasal wash all weekend and she has been snotting all over herself?  There are red spots on her face now obviously from snot getting smeared on her face. I should have taken her into the hospital for a nasal wash. There was no way I was going to try to do one by myself!  Her bath and wraps cured her and she woke up with just a few red non-itchy spots on her face.

Speaking of nasal washes, she woke up Sunday morning in tears because she knew she only had one more day until she had to get a nasal wash. It was short lived because we were going to do some fun stuff, but Monday morning was a little more difficult. I had to pretty much drag her to the car.

After we had our vitals taken Monday morning, I asked the nurses to just get the nasal wash over with. After two days with her nasty cold, she really needed one and I didn’t want her to be anxious about it all day. It took two nurses and me to hold her down while the third one squirted her nose. They said they have never had a child so scared and fight it as much as her. This time it got to me and I had a hard time choking back the tears.  It breaks my heart that she is so scared.

We started a nose spray (nasacort) to help her out with the cold.

After our bath, we challenged almond butter and she passed! Watching her try new food has been so much fun.

We spent an hour with the psychologist. She is going to make sure the child life time really works with us on the nasal washes and the upper GI.

We spent the afternoon challenging fish sticks. Again, she passed!

While she was challenging fish sticks, one of the volunteers brought Isabella some masks and dolls to color and decorate. When they were finished making them, they gave them each a real nasal wash in the bathroom. At first, Isabella would not even hold the squirter! Finally, she came around and had some fun with it. The nurses recommended that we let her play with one in the bath tub tonight.

We are scheduled for our second try at an Upper GI in the morning. One of the Child Life Specialists is going to go with us and try to get her to co-operate. She told Isabella to bring her baby doll. Please pray!!

Next: National Jewish Health, Day 7

You can read all of the posts in the Overcoming Eczema, Food Allergies and Night Terrors series here.