Once again, it’s been a while. I’m fairly certain I’ve started almost every blog post since Brynlee was born that way. So much has happened since I’ve truly updated though and it’s overwhelming so let’s go with bullet points, shall we?
- Brynlee is trach-free!
She pulled her trach out at the end of January. She was capped (meaning her trach was blocked so she used her mouth/ nose to breathe) during the day as we were preparing for decannulation so even though her trach was out, she didn’t sound any different. We didn’t notice until it was too late and her stoma has closed enough that we could not place the trach back in. An emergency call to her ENT and an overnight stay in the Special Care Unit at Children’s of Alabama later, we brought our baby girl home without a tracheotomy! She knew she no longer needed it, I guess.
- Brynlee is feeding tube free!
She finally passed a swallow study back on November. The week of her first birthday, she finally became interested in a bottle. Yes, she was turning one and I offered her a bottle. Things change when you have a child who has been tube-fed since day 1. Within a week of starting bottles (the Joovy Boob bottle is amazing!), she had completely weaned from her feeding tube. She went from receiving all of her breastmilk/ formula via a feeding tube to eating orally exclusively. It was mind-blowing! Her button was removed in February.
- Brynlee has undergone 3 surgeries this year.
Her ear tubes were blocked so those were replaced in March. The fistula where her feeding tube (button) was refused to close on it’s own. It was a huge mess between the day her button was removed and the day she went in for surgery to have the stoma surgically closed. She stayed overnight at Huntsville Hospital for Women & Children and came home the next day- after a not-so-quick trip to Target to celebrate a successful surgery and no more food leaking out of her belly! Finally, the fistula where her trach was also refused to close. We waited several months, but it was surgically closed last week. She spent the night in the Special Care Unit at Children’s of Alabama (her third stay in that ward) overnight but she was back to normal in no time! That surgery involved removing to scar tissue inside her stoma so that it would close on it’s own and it did! She’s left with a tiny scar (especially in comparison to her 2 scar on her belly) that kind of resembles a belly button.
- We’ve gone to the beach…twice!
We celebrated Easter at the beach and the went back less than 2 weeks later to celebrate my 26th and Justin’s 27th birthday. It was Brynlee’s first beach trip and while she wasn’t sure about the sand, she loved the pool! Bryson and Bella loved everything about the beach and they didn’t even complain about the long ride. I love that they are old enough to be more independent so vacations aren’t nearly as stressful as they once were..
- We are adding on to our house!
What else is new, right? Our house has been a work-in-progress since we bought it in 2009. We closed in our carport last year and turned it into a play/ school room. This year we are adding on a master bedroom and will turn our current master bedroom into a master bathroom and walk-in closet. We lived contentedly with one bathroom but as the kids get older, it’s apparent we need (okay, seriously want) another bathroom. No more fighting over the bathroom and I’ll be able to take a bath without someone coming in to use the bathroom- yay! Justin also added on to our shed outside as we were running out of room there too.
- I am healing.
Between Brynlee’s medical issues and Dad’s diagnosis and death, the last year & a half was horrific. I looked at my calendar from last July and in the 31 days that make up the month, I had 17 medical appointments and therapies scheduled. That on top of taking care of our big kids and being a nurse/ caretaker for Brynlee, trying to do everything possible to help my dad, watching them both fight and suffer, watching him lose his mind and die- it took a toll. No one outside of my husband will ever truly know the high cost I paid for giving everyone else everything I had and having nothing left for myself. I wouldn’t change it- I did what I had to do and I got through it. There was no choice. After Dad died and then Brynlee began to outgrow her medical complications (getting rid of the trach & feeding tube), I found myself completely and utterly lost. Brynlee had been my distraction- my saving grace- when I lost Dad and now while she is still a toddler, she doesn’t need me in the way that she did. I don’t have to suction her every few minutes, or pump around the clock, or hook up tubes to feed her, etc. Finally in May, I hit rock bottom and I reached out for help. I have been on medication for about 8 weeks now and I feel like a darkness has lifted. Instead of having bad days, weeks, or months, I now sometimes have hard moments but I get through those and push on. Before, I sat on the couch and cried most of the day. I had no desire to do anything, I felt no connections with anyone- not even my own children- I was numb. I felt nothing but exhaustion and worry and grief. I am no longer in that place, thank God. When I finally went to the doctor, I couldn’t even speak. I just cried and cried. With my past, they wanted to admit to the hospital but I knew that with medication (because I had been there before), I could pick myself and find the light. I did and I’m proud. I only wish I would have recognized my need for medication and reached out soon instead of losing a year of my life to depression. I went to the doctor on the one year anniversary of my dad’s cancer diagnosis. Since receiving help, I am back to cooking and taking care of the house, I don’t sit on the couch and cry, I go out with my family and enjoy their company. I’m reading books, taking photos, relaxing in the bath, painting my nails, cook- I do things that I truly love and make sure to take care of myself.
- Bryson & Bella
Bryson & Bella are both doing well. They’ve gone to vacation bible school this summer, played outside, rode bikes, and have enjoyed a slow summer at home for the most part. Last summer I was dragging them to Brynlee’s therapies three days a week so we are all just happy to be home with no commitments. We took them to the zoo a few weeks ago and will take them to Wilderness at the Smokies next month. After vacation, we will begin our homeschool year. Bryson will be going into the first grade and Bella will be doing some preschool and possibly Kindergarten work. Last year our homeschool was extremely laid back due to my dad’s death, Brynlee’s multiple surgeries and hospital stays, then my grief and depression so I am hoping this year is a little more structured and easier for me to handle. Bryson tripped and cut his leg on a piece of metal Sunday evening. A trip to the ER and three staples later, he is just fine! He never even cried and he barely flinched when they put a shot directly into his cut. It was gross so I’ll spare you a photo!
Justin & I celebrated our seventh wedding anniversary in June. We’ve been together over 11 years now! We spent our anniversary with the kids- taking them to the zoo and out to dinner. Justin got the Jeep Wrangler of his dreams so we took it mudding that weekend… and promptly got stuck during a huge rainstorm. Thank goodness it had a winch!
Things are going good. It’s been so long since I could say that and mean it, but I do. We’ve made some hard decisions recently, but they were decisions that had to be made so we could move forward with our lives as a family. Justin’s business is doing well. All three of our kids are happy and HEALTHY. Life finally seems to be moving in the right direction for us. For that, I am thankful.