Let me start by saying...things have been very hectic around here! If you don't already know, we have relocated to Zeeland's Logan Estates community :o) We have an awesome new double-wide w/ plenty of space, new carpet, new paint and an overall MUCH healthier living environment for the girls! We are more than pleased with our opportunity to move!
Ashlee is doing great and sticking around the 45th percentile for weight. She had a great clinic visit and does not need to be seen until her normal 3 month check-up. She has been a little stuffy/slightly coughy, but the way it's going...we ALL have been having problems :o( Not sure what the deal is, but would like to get to the bottom of it all and get us all healthy! UGH! So frustrating!
Jordin has still been wheezy on and off and still consistently coughing. Her cough is heartbreaking. I wish I could make it better for her. At her last clinic visit she was put on a months taper or steroids. She is just about done with that :o) We knocked out her Ursodiol (for her liver) and hoping her blood test at next visit shows she is good to go without that med. Hoping to get rid of iron at her next visit...fingers crossed!
She had an Airway Fluoroscopy (sp?) a couple weeks ago. Her test showed she has Tracheomalacia. This means that her trachea is floppy rather than rigid, so when she breathes, her trachea flops together between respirations causing this wheezy, noisy breathing we hear. It is also part of the cause to her coughing. From what I read, she should grow out of it by about age 2, but not always the case. So hopefully that will be Jordin's case :o) They put her on Singulair, and the night we started it stopped her nighttime coughing fits! She seems to be doing better at least through the night :o) I still have yet to talk to the docs about what this means for her condition, I just pretty much got the results and have only read up on it myself.
They are also concerned about her weight (of course!). She is not on the charts for her age, only for HER weight for height. She looks good, but probably not compared to another child of the same age. SO the feeding tube was dropped on us again, as with Ashlee. With Jordin being sick most of her life, it is something we would have to consider if she doesn't start to jump up. We have since gotten her to start eating more throughout the day (and let me tell you, she is a piggy!) and she has been getting up in the middle of the night for an extra feeding...so hopefuly we can dodge this bullet once again :o)
Well, Jordin is about to turn 1 year old on May 6th!!! Can't believe it has gone by so fast! She is such a little honey!
I hope this catches everyone else in good health! That's all for now!