27 Feb 2014
Well, Abram is wonderful. He keeps getting cuter. He pretty much eats and sleeps like he should. He clears medical checks so it appears we have a healthy child. That's certainly a relief.
Rokus is getting better. We take him to CHO tomorrow for another throat dilation. The nephrologist will also check him out. He is so happy and active. He just started getting comfortable with messy things now. Things like mud, dirty rocks, gross water, smashed bananas, and the sort. Before he always wanted his hands cleaned right when they got a little messy. He is so active he ears and tears on his ostomy bag. The ostomy bags need replacing almost every day now. If we don't pay attention, they fall off during his sleep and we end up with a disgusting ostomy bag bomb all over the place. Sometimes we have to give him a bath and put a new bag on in the middle of the night. We have established a good medicine schedule for all the meds. They are given at 5am, 1pm, and 9pm daily. Epogen shots are given on Monday, Wednesday, and Friday. Waking up at 5am seems to be good for both of us. He sleeps through it and I wake up early. The early start gives me alone time to think clearly. Overall, Rokus is doing much better. We had a scare last Sunday because his body was swollen. We think it was from eating pizza the day before and perhaps there was too much sodium for him. That kind of stuff stinks. In fact, I went on a Dive Team callout that day. I wasn't sure if I should go, but Steph said he'd be okay. And he was. We are happy for Rokie and glad he's home.
Steph is doing a great job, and I am really glad she is raising my kids. Both Olivia and Rokie have a hard time keeping off Abram, but that's a good problem to have.
Steph and I are putting together a FOOD SAFETY AWARENESS Fundraiser. We've got some great local support and things are moving along very well. We are so excited. There will be a lot of information to share and food to be eaten. More later. Life is good.
17 Feb 2014
Abram Wade Patterson was born yesterday night in our home at 10:44 pm. He was 8lbs 4 oz and just under 20 inches. The midwives believed he was about 37 weeks based on lines in his feet and something about his ears. Originally we thought the due date was Feb 22 but the midwives had reason to believe it was perhaps at the first or second week of March. Doesn't matter either way. We have a new baby boy!
We got the kids to bed around 8:30 or 9:00 pm. Stephanie had some cramping during the day and she just laid on the couch listening to home school talks. She thought the cramps were Braxton Hicks cramps but around 9:00 pm, the stronger contractions set in at 40 second durations and 3 minutes apart. Midwives made their way over. 10:15 pm Stephanie was liated 9 cm. We fumbled with the temperature of the tub. At 10:44pm we invited our boy into life with our family. Steph thought all along the baby would be a girl and we had agreed on a name Ellie Ruth, but Abram surprised us.
We had been working on names for a while. Ellie Ruth was done and agreed on for a girl. The boy name was not set in stone. We basically got down to a combination of Wade, Abram, and Jens. Wade because of my best friend Dylan Wade. Jens from Jens Jorgesen, an ancestor pioneer from my dad's side, who prayed the Lord would protect his crippled old body as a buffalo herd ran towards him. As the buffalo came upon him, the herd parted around. Other pioneers came back to collect his body and bury it when they saw the buffalo stampede but they found he survived thanks to the Lord. Abram is from Rokus de Groot's older brother. Menny said Abram and Rokus were the two silent, kind, powerful brothers. They called Abram "Bram" (Brahm). For the last week Stephanie and I were set on Wade as the first name with either Jens or Abram for the middle name. When I held our boy for the first time, I felt strongly his name was Abram Wade Patterson. After about one day of deliberating, Stephanie and I agreed on Abram. What a great boy.
He hardly cried after birth. Only cried once and then was silent. He whimpers slightly. He doesn't like getting a diaper change, but I figure crying about that is certainly justified.
Olivia and Rokus love Abram. Rokie is very gentle and inquisitive. Olivia wants to take care of him constantly, always wants to touch his face and hands, and gets a little clumsy playing close to him. I love how they both want to be with Abram. Olivia wants 16 more babies. She is so awesome. Someday I would not be surprised if she runs a daycare. Rlkus is gentle around Abram because, I believe, he was handled so much in the hospital that he knows how to act or treat other fragile people.
Although this is a new added challenge in our busy and hectic family life, I still believe the blessings outweigh the struggles. Our family is amazing. I love my wife. Now we have to work hard and sleep little to keep our kids alive. Waiting for a break. We love our family and thank Heavenly Father daily for these opportunities.
6 Feb 2014
Rokus is doing well and just healing at home. I think the ostomy smell is disgusting but I am getting used to it. He is a happy boy and we feel totally blessed.
4 Feb 2014
So, Rokus is just such a happy kid. While being home he has just been healing and getting back to normal. He runs, plays, tackles, teases, loves, hugs, laughs, and smiles like he used to. There are some things he doesn't like such as emptying his ostomy bag, replacing his ostomy bog on his skin, and getting his Epogen shots. He seems to be developing fine mentally, which is a big relief. We wondered if he would have brain damage or delays but he doesn't appear to show any signs. He is trying to talk more and more everyday. He tries climbing up and down everything despite having a feeding tube or ostomy bag dangling in the way all the time. He is a very patient two-year-old. He knows when he's hooked to his feeding pump so he stays by his pole or keeps his backpack on all the time. It is just a part of his life and he just accepts it. When I come home, he is always the first to run in and greet me.
I am so thankful to have Rokus back. He is my miracle boy. Love it.
28 Jan 2014
It is Rokie's birthday today. So nice to have him become an official 2 year old. He is so much happier now. He has an excitement for life. He loves playing with Olivia. They chase each other around the house all the time and the giggling is contagious. I love my kids being happy.
I walked in the door last night and I heard Rokus yell my name and come and give me a huge hug on my leg. He is really beginning to look and act like the real boy he was before getting sick. It is really uplifting.
22 Jan 2014
It feels like life is returning somewhat back to normal for two consecutive days. That's good.
I talked with the doctor today and she said Rokie's blood pressure readings looked good - so much so that we no longer need three reading each day. It is now down to one BP reading each day.
21 Jan 2014
Olivia has been great for Rokus. She jumps, wiggles, hugs, dances, runs, and everything else with Rokus. He is constantly following her and is more adventurous at home than at the hospital. His latest surgery scar is still trying to heal and his stomach muscles are still trying to develop. The way he walks and moves indicates he does not have all his muscles back. His right foot is turned out when he walks and sometimes he holds his hands funny. But, he is a very happy boy most of the time and has begun learning how to just deal with the feeding tube, the feeding pump backpack, and his ostomy bag. He doesn't like it but he deals with it. Stephanie and I have become his nurses and can do everything except draw blood for lab work. I am getting pretty good at pediatric blood pressure readings.
Mema and G. Booty have been huge helpers for our family and we are grateful to them. They have helped us maintain our home and continue to do so. They also take care of the kids to allow Stephanie and I to transition back into "normal" living. They are great.
15 Jan 2014
Yesterday Rokus came home. He got home late at night and it took some time to figure out how to set up his supplies, administer medicines, and prep him for feeding with the new feed pump and supplies.
When he got home it was cute to watch his brain working. You could tell he remembered home but a lot of things had changed. Toys were different, furniture was re-arranged, and the master bedroom was remodeled. He spent lots of time walking around, exploring each room and just getting used to his surroundings again. He was so excited and smiling. He jumped on the bed with Olivia even. Being home, he instantly is moving more, talking more, and just seems much happier.
He wears a little feeding pump backpack which is just the right size for him. It actually looks really cute on him. The nice thing is he can be mobile and go pretty much anywhere as long as he keeps his backpack on.
Yesterday and today we have been trying to figure out the best way and the best schedule to give him medicines. It's kind of a challenge to make sure he is getting the right meds, right doses, and at the right time. So, we set up some charts to remind us what to do. We received all the medical supplies over the last two days. There are so many boxes of supplies but I am glad we have them because we had to replace Rokie's ostomy bag today. We are already getting into a routine which is quite nice.
