NEW UPDATE- NOVEMBER IS HERE
November 30, 2000
Hello to everyone. We are still here. Hope everyone had a nice Thanksgiving. The big news is the large increase iin oral feeding that we have had. Jason takes anywhere up to 1-2 ounces from a Medela soft feeder and we have started cereal. He loves it. He does not like passive feeding anymore. Jason now weighs 13 1/4 pounds. Can you believe it? We had our O2 sats taken yesterday. 71 , not bad. Jason's spirits are good, less fussiness, but he may be getting a cold because he seems to be sleppingmore. he does not want to eat as frequently so I am trying to bump him up to a more mature schedule. We are not waking to feed him at night either. If he sleeps, I sleep. On the developmental front, Jason is much more alert. He looks around and sees farther distances, following people around the room. he notices the t.v. and lights, oh yes lights. He likes to play with his hands and is always trying to get them in his mouth. Although, of course, if he succeeds, then he gags. We are heading out to do some Christmas shopping today. ENJOY ALL!!!
Novmber 16,2000
Jason went to clinic today. Things look good. He had a chest x-ray which he didn't like. Dr. Harris was pleased with that and thought about taking Jason off his diuretic, but changed his mind to be on the safe side since we live so far away. Jason also had to give blood. It only took 3 needles. Actuall;y we wound up on the Peds ICU to get the blood done because we scared the lab techs and they missed their first try. Nurse Tracy was able to get it from his scalp. Neither Jason, his father, nor I were too excited about being up there. They increased Jason's heart med to match his weight gain, now 12 pounds 6 ounces. We saw Dr. Bill and had a very uplifting and informative conversation with him. Jason still puzzles him. he sadid that most kids with the NG's lose their gag after having the tube in. Jason was nice enough to gag 3 times in Dr. Bill'spresence, finally proof that I'm not just some looney tune mom. They do want us to try and fined someone more local for pulse oximetry or checking Jason's O2 sats. he is always so wound up at clinic that they never get an accurate measure. We saw Nicholas at support group today. What a head of hai. He looks great and seems very happy. Well enough chitchatting. Scroll down at the right to see the boys in their Halloween garb.
November 1, 2000
Jason and Zachary had fun trick-or-treating. Zachary was Thomas the Tank Engine's Driver and Jason was a sleeping teddy bear.
Jason has hit the 12 pound mark. Boy is he looking healthy. He is constantly trying to get his hands into his mouth. His eyes are focusing more. Yesterday in the car, Zachary called him "Jasonboo" and he looked right at Zachary for a short time. Jason is definitely starting to feel hungry. He latches on and tries to suck, but something always seems to ineterfere, ususally his gag reflex. This morning he took 1/2 ounce by cup. He is pretty noisy and likes to coo and also complain. He can be happy though, when not trying to torture us. We are still feeding him through the night, although he doesn't always wake up. Rob and I are still hanging in there, kind of tired, but almost well adjusted to the new schedule. We were hoping flu shots would allow us some more peace of mind and freedom, but it appears that they are not given to children under 6 months so the rest of us will get them and will keep praying. Jason seems to enjoy being out and about, so we try to get him some fresh air whenever possible.
Next clinic appointment is November 15. For now, they are not worried about his electrolytes and want to wait and see what happens as he outgrows his medicines.
Mom and Zachary have planted 2 rows of garlic.
October 20,2000
Hello everyone,
We are doing well. Jason is up to 11 pounds, 6 ounces. We are trying to change his tube every three days because that seems most comfy for him. Jason nursed for 6 minutes this morning with his tube out. He is doing lots more baby things like looking at us and grabbing things. He just seems happier, overall, except when mommy is putting that tube in.
Nicholas note--
Nicholas has had his NG out for 10 days and is doing all his feedings on his own.
FAMILY EVENTS NOTES
Happy Birthday Uncle Peter-25 - October 20
Happy Birthday Papa Knobber- ?-October 22
Happy 30th Cousin Lori
Congrats Cousin Mindy on your new arrival
October 14, 2000
Jason got outside and enjoyed the day, but slept most of the time. He is starting to hold toys and brought a rattle to his mouth today. mom and dad and Zach finished working in the garden.
CHECK OUT THE NEW PICTURES AT THE BOTTOM. SORRY I AM JUST LEARNING. I AM SURE I WILL GET BETTER.
HI,
I have a new computer and can now update the website from home. Things are going slow and steady. Jason's fussiness was getting better and he seemed to enjoy being home, especially when his brother holds him. He got his shots last Wednesday and has been pretty fussy since then. He is a champion at pulling out his feeding tube and we realize that we have to change them more frequently because they really irritate him. Early this AM, the couch enjoyed a dose of Reglan as I did not realize that Jason had pulled his tube out and was trying to sneak it in in the dark. We waited and waited for Jason to get hungry and 8 hours later gave up and dropped a new tube with less fussing from the little guy. Jason is enjoying long alert and awake periods. He likes his swing and has definite tastes in music. He also enjoys dancing and bouncing. He is opening his hands more and beginning to grab onto his clothes, nearby objects, and of course, true to Baby Smith form, his mother's hair. He also talks up a storm like his brother.
Growing steadily, Jason now weighs 10 pounds 11 ounces. He is looking like a much fuller baby. We have a clinic appointment at Strong on Tuesday and on Wednesday Zachary meets our new doc Dr. Obear. The doctor thing was a bit more difficul than expected as Jason scared off a coupleof in town docs. Jason is very cute an we have begun a family photo album through Yahoo. I need to wokr with my new computer some more so have patience.
Zachary stayed at Maya's last night so that we could have some adult company. He tries to play doctor with Jason and needs some help to be gentle. He is also started to act out to get attention, but we are doing the best we can. Chasing Roscoe around the house is a new evening game that he definitely enjoys.
I am home taking care of Jason everyday while Zach spends morning and early afternoon with Toni. I check my E-mail frequently. Hope to hear from you all.
Felice
October 10
Jason and I went to Clinic today. He passed all his tests. He had an echocardiogram whichwent well and they decreased one of his meds. He charmed the echo ladies. We also had a brief visit up at PICU. We saw Drs Bill and Emily, Nurses Kathy and Gina and Daune, the social worker, who is getting married in 2 short weeks. We don't have to go back for 5 weeks.
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