It was a good, long, busy birthday week! Tomorrow Kevin goes back to work. He is still working from home for another month or so... and then they are talking about going back to the office. It has been so wonderful to have him home! I hope somehow it can continue for as long as possible🙏!
At the beginning of the week we had 3 procedures in mind to schedule for an upcoming surgery. By the end of the week, it was all different! We had been to the dentist, who found cavities behind her 2 top teeth😔🦷. She doesn't eat anything by mouth, but the dentist said that the way her teeth are shaped makes a little pocket for bacteria to sit in... and we do oral care with just water and a mouth swab... but her tiny jaw makes it difficult to get behind those teeth.... anyway, that jumps higher on the priority list than her cleft lip, and they won't fix her cavities and do the lip at the same time... so now we are looking to put off the cleft lip repair, and talk to the dentist who can do procedures at Miller Children's under sedation. The dentist we saw on Friday doesn't work at our hospital anymore, but he is going to reach out to his dentist friend who may be able to get us in faster than us going to Miller Children's dental clinic. He said that because pretty much all the dental procedures were put on hold due to covid last year.... they have a giant wait list😬. Another prayer request for timing and wisdom to put the best procedures together for her.
Big time praise here! Annelise's regular scans to watch for any signs of liver cancer that is more common for kids with Trisomy 18, both came back great, with no cause for cancer concern at this point! We will check again in 3 months with a liver ultrasound and bloodwork. The blood draw we had on Wednesday went so well! We had the same phlebotomist who is so gentle and skilled. This time it took her 2 pokes, but on the 2nd one, she got it, and before she was done drawing all she needed, Annelise had closed her eyes and was starting to doze off!!🤯💉😴
This kid is tough💖.
Last but not least, Annelise had her very first social outing! We have run into friends at doctors appointments before, but this was a planned get together in a dear friend's backyard, and Annelise loved every minute! She was so smiley the whole time, taking in all the new sights, smiling at friends, and just thrilled to discover propane outdoor heat lamps with fire 🔥, and backyard string lights. She's a fan. We never took her out before the pandemic happened... we were getting used to having her home from the hospital, then flu season, then she spent that month in the PICU, then we were recovering from that... then she had that short hospital stay again for her VP shunt revision... and covid... it is a big step for us to get out and about where we feel comfortable, but seeing her light up during this new experience made us excited to do it more in the coming year!
This week has been exhausting and just amazing, especially when I look back on fb posts from years ago when Annelise was just born. I can put myself right back in that place. I held her for the first time 2 years ago today. Kevin held her the next day. Your prayers and God's amazing grace have just held us together for these two years. What an incredible experience that I never would have asked for, but has brought so many improvements to our lives, our faith, our marriage... bonuses that we couldn't have experienced any other way than also going through all the new hard parts of this journey as well. God is so good to us❤
Long post for a long week! Here are the photos that go with it!😁
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