July 2, 2006
July 2, 2006 | Updates
I’m so sorry for missing last week’s update. Things have been a little crazy. I did start an update one night, but I don’t even remember now what pulled me away and by the time I got back to it, I had been logged out and the update lost, so I just went to bed :).I’ll start with Nathan. We brought him home on Father’s Day with his feeding tube and were instructed to feed him 55 cc’s every 3 hours. Sunday night, we used the tube a few times and then again during Monday and Monday night. But by Tuesday, we realized that if we just took sufficient time with Nathan, we could get him to eat the entire amount of each feeding by mouth. So we stopped using the feeding tube. Thursday, we went to the doctor’s and Nathan weighed 5 lbs 11 oz (up 3 oz from just 4 days before). So I pulled the feeding tube out of his nose right there in the doctor’s office and we haven’t looked back!
We are now off our feeding schedule of every 3 hours and I just feed Nathan when he cries. He seems to have a great appetite and eats often during the day. He eats less often at night, but no complaints about that! This Thursday, we returned to the doctor’s office and Nathan weighed 6 lbs (up 5 oz from a week before). He also was circumcised and has been a little sore from that. But besides a little lingering infection or possibly clogged tear duct in his left eye, he seems perfectly healthy and growing well. We’ll go back to the doctor this week to have his circumcision checked and his weight taken again and if all looks well, we should just be able to get on a regular checkup schedule. So all is good there!
Samuel is also doing well. I have had several people comment that he seems to have gained some weight. His cheeks, arms and legs are filling in since I raised the calories in his diet and he’s already gained a few pounds. He has also had much more energy with the extra calories in his diet. That’s been a good thing. He is rolling all around the house and really trying to figure out how to get up on his hands and knees. I’m sure it is so frustrating for him, but he just does not give up. He’s a fighter!
This past week, we went down to Primary Children’s to have Samuel’s pump filled. It was just me and the 4 younger boys since Tanner was busy at EFY and Tom was working. The trip was a little crazy because we only made it about 15 minutes from the house when Samuel had a seizure and threw up in the car. So we had to clean all that up and change him before we could venture on. There were also several stops to feed and change Nathan. And at one of those stops, the suburban nearly overheated for some strange reason, which caused us to have to sit and wait for it to cool off for about 45 minutes. But otherwise, the trip went fine. Samuel wasn’t real happy in the car, but I’m sure that’s because the entire trip took about 6 hours to complete.
His pump refill went well and we reduced his doseage by 75 micrograms this time putting him at 925 micrograms per day. In the days following that reduction, we saw improvement in his ability to hold up his head and an increase in him trying to push up off the floor with his arms. In fact, a few days ago, I went outside to take out the garbage and when I came back in, Samuel was on his stomach with his arms underneath him pushing against the floor and holding up his head to look at me. To say the least, I was excited!
We also ventured to Kohl’s this week for a little clothes shopping since Samuel didn’t really own 1 short sleeved shirt. I didn’t buy him any shorts, however, because I’m certain he would just rug burn his knees in them since he already gets rug burns on his little cheeks from working to move around on his stomach all day long. And we also ventured out to dinner at Bluebird this week. That was quite the scene with our tiny Nathan and our wiggly Samuel :). I’m sure people thought we had lost our minds.
At one point, Samuel let out quite the upset scream and it took a bit to calm him down. Then a minute later, Nathan started screaming at the top of his lungs (sore from the circumcision) and it took even longer to quiet him down. So I don’t know how much everyone around us enjoyed their dinner. But I bet it’s been over a year since I got to eat at Bluebird, so I certainly enjoyed mine! Another thing we accomplished this past week was visiting the preschool that he will attend this next school year. He is scheduled to go a few hours each day and 4 days a week. The class we visited had 6 children, a teacher and 2 aides. Several of the children had Down Syndrome and the others had different types of developmental delays. One Downs boy was absolutely wonderful with Samuel because he was so interested in Samuel and so friendly towards him. And Samuel seemed very interested in what everyone was doing and especially enjoyed when they had singing time. It will be interesting to see how well he handles going everyday and how much he is able to learn from it. It will definitely be a stretch for his mother to let him go, too!Samuel was really smiley today and we have been able to take him up the canyon the past few days to enjoy a bit of camping. He seems to get frustrated sitting in the camper because he can’t move and wiggle around much. But he is usually happy if we sit outside with him. And today, he was even able to take a quick ride with his dad on the 4-wheeler. It was fun, too, to see him with Byron’s kids who have camped with us over the 4th of July weekend for the past 3 years now. I think he remembered them and was excited to see them again.
And the last bit of good news, Samuel’s seizures have been occuring much less this past week. Let’s hope and pray that trend continues. I haven’t even seen him have one for about 3 days now. Yea!
Before I close tonight, I need to thank everyone who has helped over the past month and over the past year. Thank you to everyone who has helped in anyway – from parents to grandparents to siblings to cousins, aunts, uncles, friends, ward members, employees and even strangers. Thanks to those of you who have brought gifts, dinner, goodies and well wishes. Thanks to those of you who have called, emailed, sent letters and cards or left messages on the care pages. If I had the time, I could spend an hour everyday writing thank you letters to all those who have helped us this past month and year. That is one thing about this experience is we have had our faith in the goodness in this world renewed and strengthened. You are all so wonderful. And mostly, I want to thank you all for your prayers. They mean the most to us and make everyday a good day – even the difficult ones.
Thanks again. Keep praying. We’re doing well.
Love,
The Jewkes
P.S. Just 15 days until our little Samuel turns 3 years old!
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