A week away is Elena's Rosebuds Race!! Kids Helping Kids with Cystic Fibrosis. She is now trying to raise over $1500!!! Help her reach this goal by clicking on the donate here link at the top right of her blog. She and thousands of other people with CF thank you!
Elena had her CF clinic visit on this past Wednesday. She weighs 63 pounds! She is taller and fatter, both of which we are so very thankful for. However, her doctor heard a rattling in her chest and her lung function has dropped a bit. We have added an extra breathing treatment a day as well as two meds to try and kick this. She will go back in a couple of weeks to re-test her lung function.
We also had to up her enzymes to 5 pills prior to meals (only if she is eating high fat foods and not her latest craze...green peppers or salad without dressing). Her weight gain and stomach pains as well as change in her stools has caused this decision.
A nasty stomach bug has been flying through our home. We are on Day 10 of dealing with it. Elena has been the ONLY one that has been healthy through out the whole ordeal. Pray that it stays that way.
We will also wait to see what her sputum culture produces. Usually, the Dr. has to use a long q-tip to swab the back of Elena's throat. This causes almost as much anxiety as shots for her. However, Elena coughed up her sputum on her own! We did a victory dance and round of high 5's through out the office. She is growing up and it makes so many things easier for her.
Finally, Elena, Ethan, and Emily continue to be extremely excited about Baby E4. He is growing so big. Ethan says, "Baby get bigger and bigger and POP out!" We talked to Elena's CF Doctor and arranged that during Elena's next clinical visit in the first week of June, we will bring Baby E4 for CF testing. Elena ONLY wanted to talk to Dr. McKean about her worries and concerns with her new brother possibly having CF. When her Daddy asked her what they talked about she said, "Dr. McKean said a lot of big words that I understand but don't think I can repeat. Anyway, I feel better." This was great news because Elena couldn't talk about the birth of the baby without crying. She was worried that she wouldn't be able to hold the baby if he had CF b/c she can't be near other people with CF. She was worried that the baby couldn't come home for months b/c she couldn't come home for months after her birth. She was upset that someone else would have to take all those medicines and do the yucky vest. Joel and I are just glad that Dr. McKean told her what she needed to hear to eleviate her worries.
Thanks for the continued prayers.
Controlled Chaos
9 years ago
Praying for your family. Your posts make me cry every time. Hope your stomach bug goes away!! We haven't had it in 2 years (knock on wood) which I am very thankful for! Love you guys so much and hope all goes well for your family and the baby. We can't wait to see pics and continue to pray he is strong and healthy. That is a lot for a little person to worry about but good to be prepared.
ReplyDeleteSeems like yesterday Elena was trying to reach her 40# goal...so glad she is gaining weight. We'll keep you in our thoughts as she tries to improve her lung function. I too know what it is like to wonder if a second child has CF....I know Elena will be a great big sister (again) no matter what! Once the weather gets warmer, I would love to get together for lunch if you have a chance.
ReplyDeleteSo happy to hear about Elena's weight gain! That must be a big relief for your whole family. I hope the other issues are resolved soon.
ReplyDeleteI have a quick question, as I'm pretty ignorant about CF. Why can't Elena be around other kids with CF? Thanks, Elizabeth ><>