Home...

Wow!!!

I can't believe a week has gone bye... It has been soo wonderful to be home! But with getting home to a house and "life" that was abandoned for over four months has posed it's challenges. I believe after a week we have finally gotten back on our feet and can start to roll out the normalcy.

Angel last week had some bumps in the road, come to find out that he is C-diff positive. This is a infection in the intestine, it can be a real problem if it is not treated aggressively. So far the antibiotics seem to be working but it can take up to 10 days for results. With this infection Angel has been less energetic and has had more abdominal distension and diarrhea. We drew labs twice last week and brought him back to UCLA on Friday for a follow up appointment. After seeing him, the doctors wanted labs today (Monday) and him back to be seen tomorrow (Tuesday). They are concerned but will allow us to stay home to manage him as long as things don't worsen.

There is also a possibility we will be brought back to the hospital next week for more testing. It may or may not involve a hospital admission we will have to wait and see. Over all though, coming home was wonderful!

When we arrived we had friends and family in the yard cheering us on and greeted us with hugs. We had a few minutes of worship out front led by Sarah's parents, which was wonderful. Then we proceeded inside to Angel's "Make A Wish" room where they set up a movie theater/ video playroom in the kids playroom. It was a wonderful surprise and made the arrival all that much more special.

This week is Thanksgiving, I can hardly believe it. We had just celebrated the 4th of July before we left. This year we will keep it very low key and will celebrate here at the house with our parents. This holiday season is very exciting and memorable as we have a lot to be thankful for!

We are thankful for the saving grace given to us by our Lord and Savior Jesus Christ, through Him all blessings are given. We are blessed and thankful for the journey we have experienced. We are thankful for our family and the health of our children. We are thankful for Angel and the incredible miracle child he is! For Hudson for bringing the sunshine everywhere he goes! For Haven and the way she has brought our family together during this time. For the relationship Sarah and I have, and our God given ability to endure this journey and weather the storms together. We are thankful for all of the support we have received and the incredible out pouring of love from those that are both family and friends.

It has been a memorable time in our lives. A time that we will look back on with awe and amazement of how we went through such a time and lived to tell of the experience.

Thank you all for continuing to pray for us and support us from all over. This is the beginning of a new chapter for our family and we look forward to the life and adventures ahead.

Home Sunday?

We are cautiously preparing to go HOME on Sunday!!! After our last disappointment we want to be cautiously hopeful as a lot can happen in 24 hours! But the boys are getting excited and we feel like this actually may happen this time. We will spend tomorrow packing up and cleaning the apartment and hopefully arrive home at 1pm on Sunday afternoon as we had planned before. Once again, we welcome you to be there to cheer Angel home! The same plan goes where we will maybe sing a few songs and then head back to reveal Angel's Make A Wish to him. We will ask that no one really come in the house to keep Angel's exposure to a minimum (he will also wear a mask while outside with everyone). We'll be organizing playdates on an individual basis as his health (and others) allows. Oh how we look forward to that! It will be a short little welcome so we completely understand if some don't make it.

At clinic today Angel weighed 60lbs!!! He has gained 10lbs in a little over a month! This is the child who has taken 5 YEARS to gain his last 10lbs! They are going to cut down on his TPN and increase his J-tube feeds 5cc/hr to 60cc/hr for 22 hours a day. It is a joy to see him "bulk up". His cheeks are puffy from the Prednisone/steroids for antirejection, not weight gain... but his "slim" jeans are just a little TOO tight. ;)

Thank you for following us, supporting us, and praying for us on this journey that is far from over. We'll continue to update intermittently here even when we are home. There will undoubtably be ups and downs.

Keeping Track...

Trying to keep track of things with Angel has been challenging. With his recent admission the doctors were unable to pin-point the cause of the pain and abdominal distention. Prior to the day of admission, Angel had acquired a upper respiratory infection with cough, runny nose and sore throat. He also was started on medication to slow down the diarrhea and last but not least was given a flu shot. All of these figure into the events of distention and abdominal pain but at this point they don't give us the peace of mind as the definitive cause of the problems. Angel was looking better on Friday and was restarted on his home regiment on Thursday night of partial formula feeds and partial TPN. After evaluation on Friday morning the decision was made to send us back to the apartment to watch things closely. The doctors pointed out that things will either resolve or get worse... But while we wait it would be better to have Angel out of the hospital.
As of this point Angel has been getting better. Each day he is showing improved tolerance to activity and has had no complaints with regards to his abdomen. He has been a bit more nauseous but we think that is due to him having a cold and having the post nasal drip of his runny nose. But over all he is improving and we are back on track for getting to go home. It looks like we will be out here for another week or so for a total of about 120 days... that is if we get released to go home next week. =)

It still amazes me what this year has been like for us. We are thankful for all the support we have received, all the prayers that have been prayed and answered. It has been a long road and we will continue to have challenges ahead. Thank you all for reading this blog and staying in contact with us, your love and support has been felt!

Update

Angel was admitted to the hospital last night and had a CT scan done of his tummy at 11:30pm. His pain has been a bit less today and he has been quite active. The CT was fairly inconclusive and the doctors think that he probably had a forming ileus (slowing/stopping of the intestines) that resolved on its own. They have restarted his feeds tonight and, if all goes well, he may even be discharged tomorrow (Friday)!! We have resigned to the fact that we probably will not be going home on Sunday. But that's okay. We need to make sure that everything is stable before we are 2 hours away. Will keep updated on when we're coming home so anyone who is interested can join us in welcoming Angel home.

Hold Off

Well, you may need to disregard the previous post. Angel started complaining of pain in his side yesterday evening and it is getting increasingly worse. He saw the doctor today and they are ordering an xray and possibly going to admit him for a CT and even possibly a workup for surgery if it is necessary. I don't think we will be coming home on Sunday. :(

The Plan for H-O-M-E!

That's right. We have a plan.

Our goal is to come home Sunday, November 9th!!!

We have derived a secret plan to invite whomever is able to be in our front yard when we arrive home to cheer Angel in! Make A Wish is also going to reveal the game room that they did for him and provide snacks and a little "party" for Angel.

We are going to try to arrive home around 1:00pm Sunday, November 9th. With Haven being so sensitive and Angel's medical stuff there is a good possibility that it could be later than that. What we will do is blog in the morning how our timing looks and if we are on track for 1:00. If we are on the road and get delayed (i.e. stopping to nurse, stopping to fix pumps, etc.) I will call someone at the house to update everyone on our ETA.

We would love it if everyone could be in our front yard as we arrive to cheer Angel in... (ahhhh TEARS!) My Dad will lead us in Angel's 3 favorite worship/praise songs: Blessed Be Your Name, Trading My Sorrows, and He's Gonna Reign Forever. (Words will be provided) We'll head back to the backyard to reveal Angel's playroom/gameroom and have snacks or whatever the MAW people provide.

Now... the tricky part is exposing Angel the least possible and being sensitive to his needs coming home. It would probably be best if people stayed outside as much as possible (kids can play on the playground) to reduce exposure as well as just staying a short time for the celebration and a snack. I think it would be okay if people peeked in at the MAW but would ask that no one come inside and play THIS time - we will have friends over individually later to play with Angel and the new room in the next weeks. It is possible (okay, PROBABLE ;) )that once the reveal happens Angel will be done and want to just stay in the house, go to his room, etc. It is is his first time home since JULY 19th!!! I hate to have anyone travel any length of time to just stay for 30 minutes or less, so please don't feel badly if you don't make the trip!

Also, as a reminder, PLEASE do not come if you've been sick, feel sick at all, or have been AROUND anyone who has been sick in the last 48 hours. Even though YOU might not feel sick you can still carry a virus or illness without even knowing it.

**Since Make A Wish is providing snacks, they would like a general head count so if you plan on being there for our short celebration coming home, please leave a little note in the comments. THANK YOU!**

We are so looking forward to this day... There will be a lot of adjusting to do for ALL of us. We have really been through a lot in the last few months and are a little worse for wear. It will take some time to realize that life is very different now and also develop a routine with a new Angel and another little one in our home. (Who is NOT the easiest little thing. ;) )

I would like to also take just a moment to say THANK YOU to Nick for keeping this blog up. After Haven was born it just became too much for me (Sarah) and I have been so proud of how thorough and caring he is in posting here. Its fun to hear his thoughts and perspective.

Angel is doing EXTREMELY well... in fact, he is buzzing past me on the scooter while I type! How's that for great? We are so proud of him and SO encouraged. Hope abounds.

Haven turned 12 weeks today!