Henry is a rock star. He's still soooo easy going. He LOVES CARS 🚗. Any car. He adores his sisters and every school day he can't wait to pick up the "goirls ". He's saying more words and getting more steady on his feet. He's stolen just about every heart that he has encountered. He's amazing. He's a joy. He loves to be bounced on the mini trampoline in the living room and y'all... his laugh... it's infectious.
The girls are adjusting like champs! It's not been without its bumps. They love him. Emily is especially attached to him, I often hear them giggling from the other room. Livvy has been a hard sell. She's coming around but the attention he's gotten has been hard for her. She's getting better every day. She's very tender hearted and gets her feelings hurt easily. We try to make sure and remind her just how loved she is. It's a balancing act making sure all three know that they're adored. I promise to spend the rest of my life trying to make sure they know they're loved and trying to make sure they all think that they are my favorite!
That's the day to day... Life is crazy. My mom has officially 90 miles down the road.. it'll be hard to not have her 5 blocks away but we will be back and forth lots, im sure. We are almost done with her move and then can commence rebuilding our kitchen. Yeah, if you missed it... our kitchen that was newly finished and floors we finally wrestled down... all demolished with a water leak in the wall. It's awful. But... it could be worse.
First up for the Summer is surgery. You might remember a couple months ago the girls and Henry had Dr. Appointments in Dallas. I'll start with the girls.
We knew going in that Cleft lip/palate could be an ongoing series of surgeries. We hoped it would be one and done but that's not the case. Both girls will have another palate surgery this next week (May 25th). Olivia will have the same surgery Emily had last year and Emily will have the next in a series to lengthen her palate and help her speech develop. She has a harder time than Olivia keeping air from escaping her nose. That's due to a short palate. We hoped to avoid this one but it looks like we have no choice. Emily also will see a Endocrinologist before surgery. We knew she had a benign tumor in her brain after her first palate surgery. We've been watching it, and while this year's MRI showed no growth... we discovered she had TWO pituitary glands and TWO arteries going in to her brain stem. You and I just have one. It's an extremely rare condition. Even the pediatric neurologist said he had to look it up it's so rare. The Endo will give us more info of what this could mean but we are praying she's going to be fine! Please pray for the girls and us as we wrestle two littles in pain and take care of Henry in the process. Pray for safety of course, it's nerve wrecking to kiss your baby goodbye and put them in someone elses hands. We will be in Dallas most of next week for the surgery and recovery.
Now Henry. We knew Henry had an unknown "CHD" heart defect/condition. We weren't sure the accuracy of his medical records because several things were lost in translation. We knew it could be from one end of the spectrum to the other. He was healthy, we knew that. He was chunky, which is rare for a CHD baby. He wasn't "blue" .. no blue lips, blue hands and feet, etc which would tell us that there is bad oxygen flow. I was fully expecting to hear that he was healthy.... so it was a bit of a blow to hear he indeed has Ebstein's Anomaly. It's a CHD that affects the valves and where they're located compared to a healthy heart. Feel free to google it b/c explaining it here would bore some and confuse others. haha. We know after a second opinion that he has a "moderate" case. We just watch and wait. He will eventually have to have open heart surgery to correct it. This CHD is rare and surgery is something to be taken seriously and it's recommended that we entrust that to the best of the best only. That means going to the Mayo Clinic in Minnesota where the surgeon who has done the most of these surgeries is or Boston Children's Hospital where they are world renowned for their care of Pediatric cardiology patients. We have no clue how soon this will have to happen. One Dr suggested school age might be the time but we just don't know. We appreciate your prayers for our strong heart warrior.. that God would heal him and keep him whole.
That's a whole lot of info. My head is swimming with information. Trying to sort through it and take it one day at a time. Thankfully I've got an incredibly understanding boss that allows for time to get my act together and take care of my family when needed. I'm so grateful for a great place to work.
So here we go. We head to "Big D" Tuesday. I'm currently fighting a virus and Henry has been battling a high fever with me. PLEASEEE pray the girls (and rob) get bypassed and Henry and I get well in the next 24 hours or so.
We covet your prayers as we embark on this busy/ stressful week!
With love and hope!
TEAM TAYLOR
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