Finally!

Between my moms visit, doctors appointments, battling with allergies, and one trip to the emergency room, we haven't had much time to get on here and update, but it looks like we have finally reached a few calm days. Bryton is just as amazing as ever. On April 3rd, the day my mom and JoJo arrived, we actually ended up in the emergency room with the little one. He had a bit of a cough going on but when we got in and saw someone, they told us that it's not uncommon for this time of year, and that he is otherwise doing phenomenally. My moms week here was an amazing experience for all of us. Bryton got to go on his first real adventure into Manhattan on Easter Sunday and we could not have asked for a better day. He really loves people watching and looking at the world around him. We also had the chance to go and explore the gorgeous Brooklyn Botanic Garden which was absolutely gorgeous. We also took one day to go down to Delaware to visit all of the friends we made at Christiana Hospital, A.I. DuPont Hospital for Children, and the Ronald McDonald House of DE: The House that Love built. It was a very emotional day for us, but in such a great way. The last time my mom was at that house, we were all terrified of what Bryton was facing, and it was so special to be there together as a family ( Grandma Cathy came and met up with us in Wilmington ) and to have our happy, healthy, strong little boy with us. It was really great. We had originally hoped to spend Brytons birthday in Central Park, but it just wasn't meant to be. We did spend time together opening gifts (thank you so much everyone!) and we went out to have dinner at Bubby's- a restaurant on the beautiful Brooklyn waterfront. It was a really amazing week for all of us. It was so nice to have both of Brytons' grandmothers together and actually be able to enjoy this little miracle! Last monday we had an appointment with the pulmonary specialist and Bryton is officially off of oxygen during the daytime. We only have to put it on him when he goes to bed at night or if he needs a little pick-me-up. So far he is doing amazing. We all love not having those tubes taped to his face all the time. We even made a trip up to Central Park with him and Cookie, without the oxygen. It was so great. We are finally able to really enjoy the world with our little boy. I haven't had a chance to send out Thank You cards yet, but seriously, all of you that sent cards and gifts, it really means so much. Everything was wonderful and perfect for him. We wish we could have all been together for his birthday, but you all still were amazing about showing the love. Here are some of our favorite pictures from all of our adventures during the last few weeks. Thanks everyone! Go Bryton!!!

Not what we were hoping for.

At our appointment with the G.I. specialist we were told that if we really had our hearts set on it, they would remove feeding tube, how ever it was suggested that we leave it in for another 8 weeks, through the end of RSV season. God forbid if Bryton were to get sick, that feeding tube is a secure way for us to get him meds and food. So we are going to wait. We already have an appointment to go back to have it removed. We've waited this long already, what's another 8 weeks? We are so excited about his birthday next week- how amazing is it to finally be here? A little less than a year ago, we were living a nightmare. Next Friday, we will be celebrating our little miracle man. We just hope that everyone knows how much we have really appreciated all of the love and support. It has been such an incredible journey. We are so excited to have my mom and JoJo here. It's going to be such a great week. We will be posting plenty of pictures!!!

This could be a big day for us!

Right now we are getting ready to take Bryton to see the G.I. specialist about getting rid of this feeding tube. Over the weekend it got very irritated and it looked like it might have been getting infected so we have been keeping it very clean and avoiding irritation. It looks much better already, but since my mom is coming from CA in 3 days, it would just be wonderful to eliminate it today. I'll have more news in a few hours! Lets cross our fingers!!!

We went to the Dr today . . . .

And I have to say, I really enjoyed it. Grandma Cathy came with us and we basically got to sit in a room with Bryton and 8 medical professionals and talk about how cute he is and how amazing he's doing. We thought that they would be doing an MRI just to get an image and see what everything looks like, but they don't think it's even necessary based on how incredibly well he's doing. He definitely has serious developmental delays, but other than that, he's amazing. He is healthy and we know that he is growing and learning. What more could we ask for? The weather is starting to improve up here in NYC so hopefully we will be able to make afternoon walks a daily fixture. Life is pretty good today.

We have internet!!!

Finally!!! We have a link to the outside world and this is the very first thing I am doing. Bryton is amazing! We are going to be getting rid of the feeding tube soon, hopefully before my Mom comes from CA for his birthday! He also is basically off oxygen. We have been working with the pediatrition, the pulmonologist, and cardiologist and it's only a matter of time before it's official. He is about 20 lbs now and he is still just growing and learning and amazing us every day. We haven't used the feeding tube at all basically and he is doing so well taking all of his bottles. He has teeth!!! He two front bottom teeth are making their way in and they are just so adorable. Thank goodness they don't seem to bother him a bit!!! Cookie has joined us and her and Bryton couldn't care less about eachother. Not what we were expecting. . . but it works. Over all we are doing really well up here. The weather was giving us quite a beat down for a while, but it looks like things are letting up. The 4 of us took a walk together the other day and it was just really nice to get out of the appartment and not go to a doctors appointment. So that's it in a nut shell. Now that we have our own reliable internet I promise to be on here everyday with updates. Yay internet!!!

Bryton is coming home tomorrow!!!!

It's a done deal! No ifs, ands, or butts about it. The medical equipment should be here sometime after 12 tomorrow afternoon, and as soon as we know how to use it we can finally take our baby home!!! When we leave here we will go back over to the Ronald McDonald house and spend one more night there to make sure that we have everything together and ready to go and we will get one more night to just rest. Then Saturday morning we will finally close this chapter of our lives, and we will go home with our son. What an amazing journey this has been. We have been living this way for 9 months now and it is just so incredible to see the light at the end of this crazy tunnel. I just really hope that you all know how much we have really appreciated all of the love, support, kind words, hugs and awesome baby stuff. I really can't imagine making this journey without you all. We have just been so incredibly blessed in so many ways. I am having a hard time finding the words to express all of the emotions running through me right now. This is our life story. How did we get to be the lucky ones? I cannot tell you how many tragic, heart breaking stories we have come across in our time here and I just don't know how to be. We have been so humbled, but at the same time I have never felt happiness like this before. It's amazing. And you all have been so incredible. Thank you so much for making this experience bearable. Thank you.