On the one hand, it has been a rather stressful time as we are now dealing with a baby who no longer sleeps through the night. Shortly after the cath lab, we had a three week argument with our insurance company and his GI clinic trying to get his antacid medicine refilled. During this time, he was switched to a different (i.e., cheaper) medication because it was easier for all of them. Henry did not handle the switch well. Some nights, he was crying out every hour. We are back on his previous medication, but it will be about another week before it is built back up in his system. We have seen some improvement over the last couple of nights, but one side effect from all of the late nights is that Henry finds it much easier to fall asleep when he is being held. Once we feel his heartburn at night is better, we will have to re-teach him how to soothe himself.
In more exciting news - although equally stressful, in some regards - Henry has now discovered crawling. It is an odd crawl, with his right leg stuck out like a kickstand, but it sure is effective for him! We are still slowing baby proofing the house, with a few gates up and all the outlets covered. It is wonderful watching him make discoveries. We forgot just how hilarious door stoppers are! His laugh is fabulous and his smile will melt anyone's heart (especially with the two bottom-front teeth!)
Monday was a busy day for us up at Children's Mercy. We met with our Special Care doctor and OT first thing in the morning. Henry basically met his weight goal and finally reached 9 kg (19 lb, 13 oz), so the doctor was pleased with that. We were excited to see our former OT specialist from the PICU! She was floored at how well Henry has grown and changed since the spring, and she gave us some recommendations to help with eating solid foods.
In the afternoon we went to cardiology. Henry had an EKG and an echo. The cardiologist was very pleased with how Henry has done since the angioplasty and coming off of the sildenafil. After the echo was read, they agreed that Henry's heart function is now "low-normal". This is the best his function has ever looked, and miles ahead of the moderate dysfunction he had back in March. The doctor is so pleased with it that she told us to leave and not come back for five whole months! We don't go back to cardiology until April!
On this Thanksgiving Day, we are grateful for so much. We are thankful for all of the doctors and nurses who cared for Henry and helped him become so strong. We are thankful that we have had each other to lean on during all of the difficult times this past year. We are thankful for all of you, our friends and family - for your thoughts, prayers, support, and for following us on this journey.
And most of all, we are thankful to have Henry in our lives. Despite all the fears, stress, and exhaustion, he has changed us so much for the better. Thank you, Henry!
