Tina here today, or more appropriately, this (early) morning. I am staying up with Ethan since we do not have a nurse tonight. Second night in a row! I am looking forward to having a nurse back again tomorrow night. I know it is long past due for a post, so I thought I would spend some time letting you all know just how great they boys have been doing!
First off, my mom and my brothers Mark Thomas and Jon are in town visiting for the week. We are so happy to have them here. They have been such great company and a huge help to Ryan and I and the boys. They have all taken turns helping with the cooking, cleaning, feedings, groceries and even mowing the lawn - thank you Mark! We can not thank them enough for all that they have done to help us out! Sadly, Jon and Mark will be leaving tomorrow, we will miss them so much. My mom will stay on another week, yay!
Because we had so many extra hands, Ryan and I decided it was time for Ethan and Kevin to have a few adventures. We first took them to the beach!!! I have been wanting to do this for so long and we could not have had a more perfect day! It was sunny and the temperature was perfect. There was a breeze, but not enough to stir up any sand. We got a beach shelter that we were able to use to protect Ethan from the sand and both boys from the sun. Both Kevin and Ethan got in the water, but Kevin enjoyed it much more than Ethan did. We all had such a perfectly wonderful day. It is definitely one of my best memories to date! We stopped off at the Beach Plum a little ways down the beach and we all enjoyed the biggest lobster rolls ever!
Since we had such a successful day at the beach on Saturday, we decided to venture to the mountains on Sunday. The forecast did not call for rain until 3pm, but it had started by the time we arrived at Franconia Notch around 1. We got the boys out and put the rain cover on the stroller and made the short hike to "the Basin". We walked around for about an hour and then decided to call it quits. By the time we were heading home, of course the rain had stopped. It was a lot of fun despite the rain!! The mountains were absolutely beautiful.
We spent the 4th at home, letting the boys play in their pool in the back. We grilled dinner, played some Kan Jam and had a great celebration. Ethan's first holiday home could not have been any better and we are all so grateful to have him with us each day. We hope you all had a great holiday as well.
Now time for an update on Ethan...We got a call the week he was discharged from the hospital from the Cardiology department. We were told that his last Echo had shown that his pulmonary stenosis had worsened and was now escalated into the severe category. We were told that he would have to have a catheter procedure this summer to do the necessary repairs. We have this scheduled for August 8th. They told us that it is a pretty routine procedure and we are very grateful that they will not have to make any incisions this time. They will use a catheter and go through Ethan's veins to his heart and do the repairs that way. He will be in the hospital 2 to 3 days total. Keep the prayers coming that the procedure goes well!!
Ethan had a trip back to Boston Children's last Monday for a bunch of follow up appointments. Most were pretty routine. He had a quick scope done by his ORL doctor and she said that Ethan's trachea had grown really well. His trach tube is now completely above his diverticulum (out pouching) and his trachea was a lot less floppy. However, she did say that he still had a ways to go and that we should anticipate a spring decanulation. This was a bit disappointing, but we were just so relieved to make some progress with his growth and now we have a realistic goal to aim for. It will make winter a bit more difficult, but I know we can get through it! Other good news is that his doctor was able to see that both Ethan's vocal chords were moving and working perfectly! He should not have any problems with his voice once his trach it out.
Ethan and Kevin continue to grow! Kevin is now walking (with our help of course) and "crawling" around the house. He has been trying to pull himself up on things as well. He absolutely loves to be outside and would spend all day out there if we would let him. He always has a lot to say and is now using his words more purposefully. He knows who "dada" is. We are still working on mama, though he has said it a few times now.
We are working on getting everything together for the boys big Birthday party! We can't wait to see some of you there! We love you all and miss you and appreciate all your love and support. Thanks for all the prayers!
Love,
Tina, Ryan, Ethan and Kevin.
P.S. sorry if this post was a bit all over the place, I am pretty tired!
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