It's been a month since updating. I've wanted to update sooner but it seems my life never slows down long enough to have uninterrupted time in front of the computer to do an update. So here it goes....
Reagan is doing fantastic. After getting out of the hospital back in September she continued to have a yucky cough and her lungs were really rattly but at her last pulminology appt. her dr. had us try a new bronchodilator, Foradil, to use with her breathing treatments & it has made a remarkable difference. Reagan has used Xopenex or Albuterol since birth and I was having to give her extra treatments with not much luck. Since starting the Foradil (which is a longer-acting bronchodilator) her lungs sound so clear. Amazing, the difference. Hopefully, these results will continue on into the yucky fall pollen season and winter months. Winter is a time we heart moms dread with our little ones as they seem to be sicker but we are praying for a hospital-free winter.
Our other major thing we are still dealing with is her blood clot. I continue to give her twice a day shots of lovenox. Poor baby is bruised all over from the shots as they are an anti-coagulant so cause bruising. I will be so glad when I do not have to give them to her anymore. Back in September when the cardiologists reviewed her case, the hematologist overseeing the lovenox pushed for them to wait and give the lovenox more time to work on the clot before going in and placing a stint to try to open the vein that the clot is in. The cardiologist agreed and so we are continuing the shots through Oct. 30 and then will have a time off before re-echoing the clot to see how it looks on Nov. 12. After that echo, the cardiologist will decide whether to leave it alone or pursue further measures. The hematologist did tell me that she believes it's been there long enough now that a layer has probably formed over it and "trapped" it to the side of the vessel therefore leaving a small chance that it could be dislodged. I think as long as it is not obstructing too much flow through that vein to the heart and as long as no other clots form we will be able to leave the clot alone and take no further action. Or so I pray daily. I am ready to be done with this and let her enjoy her childhood for once.
She is coming along so well in all areas. She is a walking now. Or should I say she's been walking for awhile now but perfecting it these days. My back is so thankful that she can get herself from room to room now without having to be carried. It is a wonderful thing until...she's missing and I cannot find her- ha! She is on the move these days. Here is a video of her walking through Bed, Bath & Beyond the other day as I shopped for a pillow for daddy.
She does still tire easily and cannot walk for long distances but we are working on building her endurance so she can keep up with her peers. She continues to do gymnastics once a week and loves it! It is truly great for her muscles and her confidence. Coach Melissa is great and very patient in helping Reagan to accomplish the tasks during class. Thank you Coach Melissa!
Reagan also goes to a swim lesson once a week with Miss Britney. I think this is the third month of swimming and she loves it. She is no where near being set free in a pool but again the whole routine of it is building her muscles and it's something she enjoys doing so we continue on. Thankfully, it's an indoor facility so she will be able to continue through the winter. Thank you Miss Britney for working with Reagan.
In addition to moving and grooving these days, she has become quite the little talker. She still goes to Speech Therapy twice a week and now is working more on articulating her words correctly. Wow, a year ago she didn't have but about 15 words to articulate- ha! Amazing how awesome our God is bringing this little one sooooo far! She is a walking, talking miracle!!
Her teacher, Mrs. Melissa, comes to our house 4 days a week for 30 minute lessons. Although, it is only 30 minutes, Reagan is learning so much. She now has 9 letters that she can recognize and is most proud of R for Reagan. She now picks out R's all around her world and says "R for Reagan". She was sitting in a little person sports chair in the backyard recently watching Nolan and I throw football passes to each other when I hear her say, "Mama, look, R for Reagan". She had spotted the R in the small circle on the chair for the registered trademark sign. She amazes me daily at her progress. I hate that daddy is missing so much but try to video and take lot of pictures to keep him updated. She will be ready for sure for our first official family vacation when daddy does come home. I ask her daily to please be mama's girl today and daily her answer remains the same, "No, daddy's girl!" We miss you daddy. Stay safe and strong!!
