Caelyn has been doing great! She has been doing awesome with therapy and making progress like crazy! She got the okay to resume oral feedings back in November and it has been a constant struggle. Caelyn is very orally adversive and struggles with eating textures. Its still something we fight with on a daily basis. Though, we are fully comfortable now with tube feeding we are beginning to realize that that is not the case for a lot of people. Now that it is summer and we are out and about doing things we are beginning to notice that people often stare at Caelyn and while at the zoo a little boy told his mom, "mommy, that baby is weird." It makes me sad that Caelyn will have to struggle with these types of things her whole life. Now we just just try and educate people about tube feeding and that it is normal. Some kids eat by bottles, others a spoon...ours eats by a tube. No big deal =)
Caelyn went to an eye appointment in early February. They discovered that she was very far-sighted and that one eye was stronger than the other and that was why she holding her head to the side. We had to special order frames from a company that makes glasses for special needs children and we finally found some that fit! Here she is in her first pai of glasses:
Shortly after, Caelyn had a follow-up appointment with her Ear, Nose, and Throat doctor and a hearing exam. Right now, they classify her as having borderline normal hearing. It is something that we are keeping an eye on. She has to have hearing tests every 6 months. Her doctor then discussed capping with us. He said that he felt that Caelyn would be able to begin capping. Capping is basically closing off the trach so that she is able to breathe on her own. She has done so great on it! Within 3 days she was wearing the cap for 12 hours a day with no issues!! Her doctors would like to see her do one more winter with the trach and then they are hopeful that she would be able to get rid of the trach next summer.
Last Thursday we have hit a snag in the road. Caelyn seemed like she was having a really hard time breathing and her lips were turning kind of blue. I hooked her up to her machine and her oxygen saturation levels were only 79%!! Scary!! I took her cap off and she was fine. So I put her speaking valve on and she was fine. Weird. So she was having some sort of difficulty breathing on her own. I made an appointment with her doctor and the earliest they could see her was Tuesday. Yesterday was her appointment and he said that she has a lot of scar tissue on the inside of her trachea that was building up. He also said that she had a superficial infection at her stoma site. She is on a 10day course of antibiotics and he is hoping that once the inflammation goes down she will be able to breathe on her own well again. She has to go back to see him on July 21st and at that time we will evaluate our options. If she is not doing any better and unable to wear her cap, she will have to have surgery to remove the scar tissue. If she is doing well and we are able to, we are going hold off on the surgery for a few months because her doctor is hoping that we might be able to just get rid of the trach all together! We are so excited!! That would be such a big moment in all of our lives if we could get rid of the trach! Here's to hoping for good news in a month!