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!

One of the greatest things about children...

No matter the situation, children (even ones that go through incredible surgeries and hospitalizations) see the world differently...the world through the eyes of a child...
Inocences, yet fun and playful, rule the everyday routine. So how I see it, is when you feel sick and act sick... then you are sick. This came to me today as I took Angel to the hospital to have labs drawn I noticed the adults there for treatment. Most of them wore drab clothing, slippers, rode in wheel chairs, etc. All those things are fine and good but something struck me. If they dressed as if they were on a business appointment bound to strike up a deal or in casual attire off to a vacation they would be dressed differently... They would look different and present themselves differently. In the same way kids don't have all that when they go out into the world, sick or not, they don't play a role game... They are like, "we're kids... who cares about all that, lets play!"
And so I write this entry with new perspective... Angel is playing again. In a way that is very Angel and without a care in the world. He continues to be into the superheros and action games. Sword fighting and role playing bring him joy. He is laughing again and being silly. His energy is good... not great but better than before transplant... which is very encouraging.

This week we are settling in as a family each day we are growing closer together and enjoying the time we have. It is still not normal and at times still stressful but we are together. God has given us this time to be together and we are enjoying it!

God continues to send His blessings. Situations that seemed bleak and difficult weeks ago are now opening up to reveal His plan for our family. Situations that spring-boarded us to the next opportunity felt scary in the moment but now point us back to Him.

God is good, His faithfulness is never ending and His mercies are new everyday. Our family continues to be blessed. We are His children and we now look at our world with a new perspective.

We want to continue to say thank you to all of our friends and family. Thank you for supporting us and cheering us on.

After my day today I feel a bit rejuvinated. Wondering why do we worry? We should just live and live obediently... thanking Him for all that He has done!

Don't worry about anything; instead, pray about everything. Tell God what you need, and thank him for all he has done.

— Philippians 4:6

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The boys on another adventure together:

We are all together...

Angel was discharged on Friday! This has been a very anticipated discharge as over 90 days have passed since his transplant. It is very nice to see Angel out of the hospital and playing. Though he isn't fully recovered from everything, as the healing is going to take a few more months. But his spirits are up and he is ready to get back to his old ways. He asked when we go home if he will be able to play on his playground and run around in the yard. He is ready but his body will need a few more months to catch up with this ambitious little boy.
It has been a little rocky integrating Angel's routine of TPN, feeds, meds, and wound care into the apartment life but each day it is getting better and I should have it hopefully figured out in a few more days! =)
But really the best part is being all together... Over the last 90 days we as a family only had 9 days together and I was able to stay with Sarah and the kids only about 10 more nights above that. So over 70 days separated by different living quarters, and now we are all together...and it really is wonderful!
The boys have adapted and are playing together. Today Angel and I had to go back to the hospital and have labs drawn. But we finished the afternoon making up for it and going to Angel's favorite comic book store. The boys dressed up as Batman and Robin and had a wonderful time playing.
This week we hope to get things situated and maybe by next week Angel will be close to getting off TPN. This will be huge as Angel has not ever had time off TPN (IV nutrition). Off TPN we should be able to go back home. Everyday we are working for that goal and praying that we are wise with how aggressive to push formula feeds and how aggressive in slowing down the TPN.
Angel and our family are soo grateful for the continued support of our friends and family. We would like to extend a special THANK YOU to our church who has sent us a a get well DVD, it was very special...Thank you!

Well it's late and time to get some rest. Hope this post was clear enough... as I am very tired. But thank you all for keeping up with us, we are honored to have friends and family like you...