Boots, Bars, and Boston

This week has been crazy with appointments. Between Help Me Grow, home nursing, orthopedics, and cardiology, we’ve had 7 appointments this week. Add Homeschooling and everyday life, and you can imagine how ready I am for the weekend!

Help Me Grow came by on Tuesday to evaluate Hannah’s need for therapy. They still have to establish a plan and goals for her, so I’m unsure what her therapies will look like. We do know they will be starting soon though, which is exciting! Early intervention plays a huge part in the quality of life of someone with Down Syndrome. Starting physical therapy, speech therapy, and occupational therapy early, can have a huge impact on their entire lives.

The most exciting change this week was getting her cast off! Bath time is enjoyable again! She now has her boots and bar, which isn’t too much fun either, but at least they’re removable. She doesn’t seem to mind them during the day, but she gets annoyed by them at night when she’s sleeping. She has to wear them 23 hours a day until she starts showing signs of wanting to crawl, then she goes to wearing them at night and for naps. Overall, she’ll have them for about 3 years, which seems like forever right now, but I’m sure we will get used to them, and they will just become another part of our routine soon.

In regards to her heart, we met with a surgeon from Nationwide as well as her cardiologist this week. We weren’t overly impressed with the surgeon, unfortunately. He didn’t seem to have familiarized himself with Hannah’s case, and he also seemed a little put off that we had requested a meeting with him. He didn’t know she was on oxygen, or that she had been hospitalized recently. I had expected him to be at least a little familiar with her current condition. There were a few other things that didn’t impress us, so as of right now, we are still not planning on having her surgery done at Nationwide.

The appointment with her cardiologist went fairly well. Her echo still looks good, with the same gradient through the pulmonary artery, so that is very good news. The biggest change in the past week is that she seems to be more tired. She starts to doze off during most feeds, and isn’t eating as much as she should be. She’s continued to gain weight slowly, but she is at the low end. She had labs done at her cardiology appointment to check her thyroid, RBC’s, and WBC’s. It all came back normal, as far as I can tell, and we didn’t get a call from her cardiologist, so I’m assuming everything is good there.

Overall, we have had some conflicting information, and information we disagree with come from Nationwide, so we have started looking elsewhere. We have a meeting with Dr. Morales at Cincinnati Children’s Hospital on Wednesday, May 17th, and we have also asked for opinions from Boston and Philadelphia. They both have awesome programs where you can send your medical records for a cardiologist to review, and they will give you their opinion without having to drive all the way there. The best part? It’s absolutely free! We’ve submitted the request to Philadelphia, and should be hearing back within 2 weeks. We’ve contacted Boston, but haven’t been able to get everything set up yet.

The main reason we would like more opinions is because the information Dr. Galantowicz at Nationwide, and the information Dr. Morales has given so far, conflict. We would like to get at least one more opinion to see which one seems to be more accurate; and well, you can’t go wrong with the top ranked, and third ranked pediatric cardiology clinics in the country.

That is where we are at right now. We are thankful every day that Hannah is doing well and continues to grow, even at a slow rate. I have seen the Lord work in our lives through this, and I am confident there is a reason for the bumps in the road with Nationwide. Please pray that we would be given wisdom in making the decision of which hospital to choose. We can’t do any of this on our own; it is truly only through Christ that we have the strength to walk this road every day.

 

 

The Lord is my strength and my shield; in him my heart trusts, and I am helped; my heart exults, and with my song I give thanks to him. – Psalm 28:7

 


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