Little lady had another cardiology appointment last Friday and it went extremely well! She was up to 8lb, 4oz–which is a great weight gain. Anything over 8lbs was going to be on the high end, so our little “fatty” is doing just perfect in the eating department (Mommy can attest to that 🙂 ).
Claire had an x-ray to look for fluid in her lungs and another echo. The x-ray looked great and her echo was also positive. The “unusual” tissue in her septum is acting as a barrier that a typical heart has and that keeps heart and lung pressures normal. Since Stibbe family members like to push the odds, Claire figured she would join right in!
…reading ahead, don’t get your hopes up (Adam keeps reminding me of this!)…
Her cardiologist, Dr. Fletcher, told us this: “In 23 years, I’ve never even considered the possibility of an AVSD not needing surgery” (seriously, of course this would be the case with the Stibbes). The tissue he saw on the last echo was so unusual that he didn’t think it would grow with her heart. However, it did, and thus it should continue to do so. Because she is doing so well clinically (eating great, not breathing fast, gaining weight, etc), we can continue putting off the surgery! In fact, he told us at the end of the appointment: “I’ll see you again in 3 months.” My jaw hit the floor and I exclaimed, “Really!?” and then he smiled and said, “Well, now you have me second-guessing myself. 2 months.” Shoot, Mom had to open her big mouth 🙂
We are so, so thrilled with her progress report. She truly is doing remarkable and I am so thankful we have such an excellent Children’s Hospital here.
Overall, things with the StibbeFam have been great lately. Adam took the first half of his test today and will finish tomorrow (please say a prayer for him tonight). He’s taking the test in Chicago and will be back Saturday afternoon. I don’t know who is more excited for him to be done with this test– him or me! It will be amazing to have my husband back.
Last Sunday my boys came home! Grandma Stibbe drove them back all by herself (trooper!!) and then stayed another week (double trooper!!). It was so great to see them again! I definitely cried a little.
The boys have camp two days a week and are loving it. It’s allowing me to run errands and have time to relax with Claire, albeit on the floor of our van most days.
We also hired a nanny this summer and it was the best decision we have EVER made. She is coming three days a week from 8am-3pm. The boys absolutely love her and I can trust her to do anything. Most days I will be going with them places (splash pad, pool, kids gym, park, etc), but on days where I just need to stay home and rest or run to our millions of appointments, I can, and the boys don’t suffer because of it. It’s our last summer in Omaha and I have a million things on our bucket list!
I’ve been doing well. Emotionally, things have calmed down a little bit. Having 4 children has been a learning curve, of course, but it’s been so much fun. The boys are crazy, have limitless energy, and amaze me that they’re not asleep by 9am every day.
There is a ton to learn about Down syndrome and my personality thrives on this. Facebook groups and blogs have been invaluable. A lot of the “treatment” of Down syndrome has to do with supplements and naturopathic options. There is a specialist in Portland, OR and I’ve heard amazing things about her. We’ll do some more research, but right now, as long as we can figure it out financially, I think Claire and I will be making a little trip out to OR. Seeing how Sam flourished once we changed him from Pediasure to a Blended Diet made me realize how much diet affects an individual. I’m so excited that there are specialists who seek to better the lives of people with Down syndrome rather than write them off like in the not-so-distant past. It’s a pretty cool world we live in.