Casey

Full Day

A couple weeks ago we noticed a small break down (sore) on Casey’s ear. We have been treating it with some medicated ointment, but it just won’t heal. Over the past couple of days it has seemed a bit swollen and purple. We took Casey in to see her pediatrician yesterday. She started her on some antibiotics and a stronger ointment.

Last night after Casey’s nurse put on the ointment Casey was really upset when her ear was touched. She was doing the same thing this morning after I applied the ointment. Her nurse looked up the side affects and 5% of patients experience burning and itching pain with the ointment. UGH!!! One more thing to add to our allergy/do not use list.

We have an appointment tomorrow morning with the wound care clinic. We will tell them what is happening with this ointment and hopefully they can come up something else. I hope with the antibiotic and what ever wound care offers up that we can get this ear healed once and for all.

Today was a super busy day. Casey was so great ALL day. We left the house at 8AM and did not get back until almost 3.

We started the day with getting fitted for new AFOs. Casey picked a heart design this time. They are very cute. She wanted neon yellow, but we talked her into her second choice. I think the yellow would have gotten old, and grungy quick.

After AFO’s we went to GI to get an official weigh in. The new food seems to be working. Casey is up to 28 pounds. This is wonderful news. That was after 3 poopy diapers too. We are very excited about the weight gain.

After we got weighed we went to see the dentist. Casey’s pallet has always been high. But it was also wide enough to get in to clean it thoroughly. Over the past 3 weeks or so it has gone from about the width of a average woman’s thumb to being so tightly closed that we can not even get a QTip in to clean. We were not sure if it was growing together or if the sides were getting thicker. Either way it was concerning. The change was rapid, and the pallet was still high. Not only were we concerned about the change, but we are no longer able to clean it properly so there is risk for infection and who knows what else. The dentist took a look and had Casey get a panoramic X-ray. She had never had her teeth X-rayed at all. I was shocked at how well she did. She did not fuss or move at all. We got her positioned and she sat perfectly still. Everyone there was very proud of her.

After the dentist took a look she called in a second opinion from the cranio facial plastic surgeon in the office. They work together with an orthodontist to treat cleft, and all kinds of pallet issues. I love this dentist. She sees ONLY special needs patients and is so great with Casey.

The dentist and surgeon want us to keep a close eye on things. They suspect it is caused from difficult teething. For now we have to clean it as best as we can and give her warm compresses when it is bothering her. We will go back in 2 weeks for them to compare the growth and check the gums for potential cutting of teeth. If that is all that is going on they expect her mouth/gums to go back to the before size. We are keeping our fingers crossed that this goes well.

After the dentist we went to the hospital. We had a quick lunch (with lots of Casey’s hospital friends coming by to say hello) then went over for water therapy. Casey did great in the pool today. She did great all day. She hardly fussed at all, she was so good in her chair, we did not even have to suction much today.

After water therapy we had to stop by neurology really quick. Casey has been twitching a little again so we had to get them to review her seizure meds some more. They made a quick change and sent us on home.

We got home then Casey had to have a bath (wash of all the pool). She is wiped out. I expect someone is going to sleep good tonight. I think I probably will too.

We have a really fun weekend planned. Casey is going to meet a baby elephant! Some big elephants too. We will take lots of pictures and post details when we get back. We hope everyone is well and has a wonderful weekend!

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