Hello Everyone! I hope you missed us as much as I missed blogging. I really do miss it and have decided to start writing again. I have been updating Evan’s Facebook page and will continue to do so but I also feel like the blog will allow me to share more detail.
Evan is really doing well. I am truly in awe and grateful of how far Evan has come. We are etching closer to his heartiversary (May 1st – date of first open heart surgery.) Since it has been so long there is a lot to update on. Evan is now 16 months old and still smiling. I often wonder if his cheeks are sore at the end of the day from smiling so much. He wakes up with a smile on his face and goes to bed with one. Let’s catch up!
Evan spent a couple of days in the hospital over Valentine’s Day weekend. His sodium levels were high and he was very miserable. He ended up getting a couple days of IV fluids until they came down. Evan was on a sodium supplement at the time. We left the hospital and he is no longer on the sodium and they decreased the amount of LASIX that he is on. His last echocardiogram was in February while he was inpatient and all is well. His pressures causing the pulmonary hypertension are still elevated but no where near where they were back in November. His veins were all stable which means the pulmonary vein stenosis is being managed! He sees the cardiologist every 6 weeks and our next appoinment is in April. He will probably also get a lung profusion scan at this time to see how his lungs are functioning and to ensure all is well from that perspective. Evan also had a follow up sleep study done this year and he went from severe sleep apnea to mild sleep apnea after he had his voice box clipped and right upper pulmonary vein ballooned. His tonsils were enlarged at the time of our follow up appointment but ENT saw no need to intervene at this time. We will have a follow up sleep study this summer to determine if he will need his tonsils and adenoids removed. Evan is still on oxygen 24/7 but we are now on .5 liters of oxygen as opposed to 1.5 liters which he left the hospital on in December. He continues to take the Gleevac on a daily basis but has started to give me a hard time about taking it. The stuff is gross so now I do a dream feed which essentially means I wait until he falls asleep and then give it to him. He is not in a deep sleep so is able to take the bottle safely. So far that is working but I have some other tricks up my sleeve if that stops working.
Evan is still receiving occupational therapy and physical therapy. Last week we added a developmentalist. Again, I am in awe in how far he is coming. Now, he does give the therapists a hard time sometimes. I guess he figures since he is working so hard he makes them work hard too! As far as physical therapy goes he is now getting PT twice a week for one hour. We are working on strengthing his core muscles so that he can begin go sit up and lay a foundation for crawling and walking. Evan spent a LOT of time in the hospital last year and after his three open heart surgeries he didn’t get to spend a lot of time on his tummy due to restrictions so now we are finally able to do things without restrictions. Tummy time is a very important step in development. Evan is rolling over from tummy to back and back to tummy. He is much more stable when sitting in his infant seat. Another thing we are working on in PT is getting him to put weight on his arms which is a challenge but I know he will get that too. Last session he sat up with weight on his arms for a couple seconds all by himself! In terms of Occupational therapy he gets OT once a week for one hour. The focus in OT is feeding and fine motor skills. We work on oral stimulation to get his mouth ready to eat. Evan gets the majority of his nutrition through his milk which is now Pediasure Peptide which is easily digested. He LOVES it and often times only wants to drink his milk as opposed to eating food off of the spoon so we are trying to encourage him to eat more solid foods. In OT we also work in the side lying position for him to recognize his shoulders and strengthen those muscles. We recently got a new OT whom I adore and our PT who we love to has been with us over a year.
It is such a pleasure to celebrate Evan’s milestones and we celebrate each and every one of them. Evan is still talking up a storm and is constantly saying “Dada.” He recently started imitating us more and can blow some of the sweetest kisses you ever imaged. He can also ROAR like a lion and started clapping his hands. He will also wave hi and bye! If I am chewing a piece of gum he will smack his lips like he has gum and today when I was blowing him bubbles he started to blow too. We are also working on sign langugage. He signs for milk when he is hungry and ready to eat. We also sing and sign “twinkle twinkle little star.”
I look forward to you continuing this journey with us and celebrating milestones. If you have a FB page please like Evan’s Radiant Warrior Spirit page. It is sometimes easier for me to post quick updates and videos on the FB page directly from my phone.