MaKenzie received her starter beads for her Beads of Courage while - TopicsExpress

MaKenzie received her starter beads for her Beads of Courage while we were waiting in clinic yesterday. They started her off with her name and then she received a blue bead, which stands for a clinic visit. Now my job is to go back, alllll the way back from birth/NICU and through the years and try to document as much as I can so she can receive the rest of her beads. This shall be a challenge to do but it helps that my mom has kept a journal since pregnancy that has her journey. THANKS MOM!!! Next week we are going back to Cincinnati childrens for a dental appointment and while we are there Child Life will bring MaKenzie her beads! So exciting!!! She will show off her beads next week! Here is a link again to the beads of courage in case your not familiar with this amazing program. youtu.be/Z0JDqHd4vpo I noticed a problem with some previous dental work she had done a few years ago. All of MaKenzies dental work is done in the OR and we try to combine the dental work along with a scheduled surgery and since she is going to be scheduled for surgery in the next month or two, we need to get her in to be seen and hopefully get the two scheduled together. Yesterday we sat in clinic for 3 1/2 hours!!!!! Im so glad MaKenzie is easily entertained and was fine watching tv, playing on her ipad and coloring in her coloring book. Basically at this appointment we were going over her MRI results which did of course show significant growth compared to the last. The main concern which is below her trach tube did also get larger but is not pressing in on her airway below her trach tube any more than it previously was, but however, she is not in the middle of a flare up right now either. Her Lymphatic Malformation has been calm all summer, no flare ups and the bleeding that her LM does has not happened since the spring either, so no aspirating on blood since then! It all goes through cycles and once it starts, it gets really hectic. She does have good months so for right now I will be grateful for the calm!!!! After she is seen in dental next week then I will be able to schedule her next surgery along with dental.

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