Monday, July 11, 2022

No More Speech Therapy!

 We had some exciting news this morning - no more speech therapy for Jude! His therapist was so pleased with his progress that she decided to complete his reassessment a few months early.  Jude met all his goals and is now actually ahead of his age group, speech-wise.  I'm glad to not have to drive twice a week to lessons now, but super thankful to Monkey Mouths for helping Jude these last 9 months. Here's a photo of Jude with his therapist, Ms. Lupe.  He loved spending time with her and really enjoyed his therapy sessions.

Tuesday, April 26, 2022

One Year Post-Op Visit

 We are headed home from Houston for the first time in a year (it’s a huge relief to be able to say that). Jude had his one year post-op visit today to check on his heart and make sure it’s working like it should. Overall, it seems like his heart is doing well. The only possible cause for concern is he does have some collaterals that have grown. This is his body’s way of responding to the lower amount of oxygen he receives. So it grows collaterals to try to get more oxygen to the lungs. The problem is this can cause the blood from the collaterals not to get fully oxygenated and causes his oxygen saturations to go below the target level. For now it’s just something to monitor by checking his oxygen levels regularly, which we already do at home. Also, the collaterals will have to be corrected by adding coils via a cath procedure before his next open heart surgery.

We were also told to prepare for his next open heart surgery to be next spring. He will be 3 years old and that is typically the beginning window for when the Fontan surgery takes place. It was earlier than we were initially expecting, so are a bit bummed about him going through a major surgery again so soon. But we definitely want to do whatever will give him the best long term results. 

We will return to Houston again in 6 months to check in with his cardiologist and get started on the steps to be taken before his next surgery.

Positives from today: Jude’s stranger anxiety is soooo much better. Although he still didn’t love getting an echo, I didn’t have to hold him down for 45 minutes like we used to have to do. He just asked “All done?” about 25 times. 😂 He is growing well and sooo thankful we don’t have to worry about counting all the calories and fight to make sure he’s getting enough. Jesse and I always say that any day we get to leave the hospital is a good day, so…it’s a good day!

Jude does NOT like stickers - these were for his EKG

Jude does love keys!! These were a hug help in getting through his appointment.

Monday, January 31, 2022

Celebrating Jude's 2nd Birthday

 Two years ago right around this time in the evening, we were getting ready to welcome Jude Killian to the world.  It had been one of the longest days of our lives. Waiting all day for surgery to begin, not knowing what lay ahead, but knowing that our lives were never going to be the same. 

Fast forward two years and we have a little boy who loves to play outside, make messes, and is adamantly independent when it comes to feeding himself. He's survived bacterial meningitis, blood clots, 2 heart caths, and an open heart surgery.  Jude's life will always follow a little different path than a child with a healthy heart, but we are so thankful for each day that he is healthy and all that he is able to do.

Life for Jude has been really good since his surgery.  We don't have to go to the doctors nearly as much, he's growing and he only has to take aspirin daily.  He does have some speech delays, so he's been doing speech therapy since November, which he loves and it's helping him tremendously.

For his 2nd birthday, we chose to celebrate in Broken Bow, Oklahoma. We rented a big cabin so the whole family could join us and had a "Oh Twoodles" party.  It was a beautiful weekend to spend outside and everyone had a great time together!

Jude's echos in Dallas have been rescheduled twice due to staffing shortages and COVID at the hospital. Our next step plan for now is to go back to Houston for a one year post-surgery check up in April.