A lot has happened the last couple weeks! Hannah is now on oxygen only at night, yay! It’s such a relief to not have to carry oxygen tanks with me everywhere. I can’t even imagine how those who have oxygen for years must feel. While it became second nature, it was not an enjoyable experience.
Hannah has started sitting up better. She still needs a lot of support, but she enjoys sitting upright. We bought her the Fisher-Price Deluxe Sit-Me-Up Floor Seat, and she absolutely loves it! I like that she gets to sit upright, but it still gives her enough support that her head isn’t flopping everywhere. I highly recommend it for everyone, but especially for kiddos with Down’s! I was so worried we wouldn’t be able to find a seat supportive enough for her to sit in, but this one fits the bill, and it was under $50.
We started fortifying her breastmilk/formula on Wednesday. She only gained 2oz last week, which is below her goal, so she needs a few extra calories. It hasn’t gone as smoothly as I would have liked, but she’s doing fairly well with it. She was having trouble finishing all of her bottle with all of them being fortified, so we changed to fortifying every other one and she seems to be tolerating that well. Hopefully we will see some steady weight gain, or we may have to move up her surgery.
She went to the pediatrician on Thursday for her Osteopathic Manipulation Therapy, which we love! Our pediatrician has said that a lot of her special needs children’s specialists are amazed at how well her patients who have OMT do. It’s very similar to chiropractic, but focuses on more than just the spine. Maybe I will do a blog post about that… Anywho, she noticed that Hannah’s right eye isn’t tracking with her left eye. It’s barely noticeable, but she suggested seeing an ophthalmologist to hopefully catch any issues early.
Okay, now for the big news: we’re moving to Cincinnati from Columbus! After meeting with Dr. Morales at Cincinnati Children’s Hospital Medical Center, we have decided to switch all of Hannah’s care to CCHMC. He was so nice to speak with, spent way more time with us than I was expecting, answered all of our questions, and made me feel so much more comfortable with everything. He truly understands Hannah’s defects and how they impact one another. He has about as much experience repairing them as you can considering there are only between 60 and 200 in the United States every year. We have an appointment for an echo, EKG, and an initial visit with our new cardiologist, Dr. Madsen, on June 16. Hannah will also be seeing a gastroenterologist, an ophthalmologist, and the Down Syndrome clinic within the next few weeks. Dr. Morales feels that we don’t need to rush into Hannah’s surgery as long as she continues to maintain her sats and gains weight steadily. We are planning on scheduling her surgery for the end of August or beginning of September. Everyone we’ve spoken with is in agreement that it is best to have it done before the end of Summer, when flu season starts. If Hannah were to get sick, the surgery would be delayed by at least 6 weeks from the day her symptoms started. With all of her appointments and her OHS, we feel that it is the best to make the journey south! My in-laws also live in Cincinnati, so that’s a perk too, I suppose 😉
So, now the headache of finding an apartment, switching her care, my husband transferring jobs, finding a new pediatrician, and everything else, has begun. We are very blessed that Josh’s company has a job site with an opening in Cincinnati, so he should be able to transfer in a few weeks. I am thanking the Lord for that; He has been so good to us! Even though neither of us really wants to move for the third time in three years, we are at peace with this decision and feel it is where God is leading us.
Please be in prayer for us that we find the right apartment, transferring jobs would go smoothly, and that everything regarding William’s father would go well (we are moving outside of our originally agreed to radius). Pray also that Hannah’s appointments would go well, that her eyes will be fine and she won’t need glasses, and that there are no major problems with her gut.
Our soul waits for the LORD; he is our help and our shield. For our heart is glad in him, because we trust in his holy name. Let your steadfast love, O LORD, be upon us, even as we hope in you. – Psalm 33:20-22