Mouth Stuff

Summer is closing in on being half over, but it has been pretty good so far. Today, I'm taking a moment to update before sending Caleb to summer school this morning. He has been going this week as an extension of some of the speech stuff he does throughout the school year. He will then have another month off before starting back in his regular program for the fall.

The boys both had surgery on June 22 and we have been so grateful to be with this new cleft team. I think they did a fantastic job and the care they show for Caleb and Asher is obvious. We went into the hospital early on Tuesday and Caleb went first for his surgery. He did really well. I may have mentioned this before, but he had a fistula open in the roof of his mouth after his initial cleft repair 2 years ago. So, his surgery was to close the fistula, hopefully improving some of his speech. I saw the roofof his mouth the day we went home from the hospital and it looked awesome!! Asher's surgery was second, and he also did a great job. His palate was still open since birth, so his surgery was to repair the defect. We were in the hospital overnight for one night and then went home the next evening. For several days, everything was great, although Asher totally did not like his arm restraints at all. He really let us know it, too!

After about 5 days of being home, Caleb got sick. After breakfast one morning, he began vomiting blood, so I called the surgeon and he met us in the ER. When we first arrived, Caleb seemed fine again, but I wasn't convinced. I know what I saw at home was not normal and I was so nervous that we would be sent home after observation. But then, he was getting sick again and vomiting a lot of blood. The color drained from his face before our eyes. Even the ER staff seemed nervous, like, uh, that's a lot of blood coming from that 3 year old. It seemed hard to believe that it could just be from his palate repair, there was so much. They whisked him back to surgery so fast. He was very upset and I was allowed to carry him to the farthest point before they took him away into the OR. He was crying. It was so difficult to let himgo!

Fortunately, things were fixed up. He lost a lot of blood but avoided a transfusion. His palate repair was bleeding in the top portion--in his nose. The blood was running down the back of this throat, so we didn't see it right away until it made him sick. He went home the next day, sunny as ever, like it didn't even happen. I love that about him!

We've spent the last 2 weeks recovering here at home and yesterday we went back to see the doctor for follow-up. The good news: Asher's repair looks wonderful. It is closed completely and he is trying to talk more all the time. He is in speech and making progress with some words. Both boys are on soft diets (an improvement from the liquids they've had for the last 2 1/2 weeks) for one more week and then they can eat normally again. They no longer have to wear their arm restraints (yay!). So, these are all good things.

The bad news: Caleb has a fistula that opened again after surgery. It is almost as big as the one that was there previously. Sigh. The doctor believes it is due to his mouth structure, and surgically closing it won't work until they do some other work first. So, he gets a month off and then gets an appliance placed that will stretch his upper jaw, hopefully after that he can get a prosthesis for theroof of his mouth.

So, it's a lot of stuff, but that's part of the deal. We rejoice in his successes as he continues trying new words. We also feel so blessed for all of the help and support that we've have received: hope and prayers for those who want to see our boys succeed.