July 7,2001 Went to Marshfield yesterday for Jeb's repeat/follow up MRI scan of his brain. The results: "There are very extensive signal changes in the cerebrum, primarily white matter. The distribution is not typical for that of CMV. I understand there is very good evidence that the patient has had congenital CMV infection and, given that history, the findings here could be considered consistent, although a little atypical. In terms of alternative explanations, the findings are not typical of the other congenital infections. I would favor nonspecific encephalitis as an alternative. The appearance is a little unusual for anoxic ischemic event. In addition, the patient has no such history."

Just got home from Marshfield, where Jebbie had his follow up MRI scan of his brain....this was to compare to his birth brain MRI to see what has happened. Not sure if this is good news or bad news. Jeb's doc's first words to us about the scan were "well, it looks worse now than before." Great. I thought we were going to keel over.

The first scans at birth showed some calcifications in his brain (damage from the virus) but didn't look that bad.

Today, the radiologist said Jebbie has "nonspecific encephalitis." Because he had CMV at birth, these abnormalities are "strange" according to them because it looks more like an anoxic ischemic event than CMV damage.....so, go figure. Jebbie never had anoxia.

So, what does this mean? They have no idea. Just that there are changes in a negative way, rather than positive. Other than those odd "signal" changes, his brain is fine...ventricles are fine, his sulci are normal and cell
proliferation is normal.

As always, Dr. Gross says "he may have learning difficulities in school, he may be less coordinated than other kids, but I have no idea." But I have to remind myself that she is the doctor who also told us he was going to die.

Thus, again, it is wait, watch him grow, and see what happens. So, we are not going to worry about it. We know Jeb is developmentally behind his peers already and we have instituted every possible therapy we can.


January 21, 2001 Mayo and Marshfield Clinic visits: Dr. Nancy Henry, Pediatric Infectious Disease, does not need to see Jeb anymore :) She wishes to stay involved in his care as long as we want her there--for questions, advice, referrals, etc. but Jeb doesn't need her doctoring services any longer. Dr. El-Youssef, Pediatric Gastroenterology, has no need to see Jeb either :) He had been following Jeb for his absorption problems, enlarged liver and spleen. From his standpoint, Jeb is doing very, very well. He says that when it comes to CMV disease, Jeb is definitely a walking miracle story. Jeb's new neurologist wants to get an MRI of his brain to look and compare to last year's. We will consult with a pediatric surgeon to have Jeb's rib cage looked at. He has pectus excavatum. In Marshfield, Jeb's hearing test was better than normal for his age. His developmental screening placed him at 7-9 months of age. A bit behind, but we knew that already. Dr. Gross also is just following Jeb to see where he goes and what happens to him. We'll see her again next year. Jebbie is now 18-1/2 pounds, 31 inches long and commando crawls all over the house, really fast! He occasionally rocks on his knees but no knee crawling yet. He still cannot get into sitting by himself but will sit alone if placed there. Jeb says "mama" "dada" "deedee" "ga" "dogee" "hi" "baba" and will wave hi and bye. He likes to play peek a boo, pat-a-cake, likes to give fives, play games blinking his eyes. He loves songs and will dance to songs and music by bopping his head. He is such a little character full of personality. Jeb still has physical therapy twice a week, occupational and speech therapy once a week, goes to his chiropractor about once a week and has craniosacral therapy every other week.

January 7, 2001Hey! Thought it was about time for another update...I am falling behind. Jebbie is doing so great. We go back to Mayo soon, mid January. If you want to know the dates and I know you, email me and I will let you know, I don't want to post it for security reason. Please pray that God has spared him from the awful things CMV disease can do to the body. Jeb has been through so much we are praying for a very good report this time around. Jeb had a great Christmas and Birthday, spoiled rotten by all his family and Grandparents (of course) with lots of noisy toys. He is getting around the house by pulling himself on his belly, getting to where he wants to go. He really likes the kitchen and bathroom, as it is wood floor and linoleum, much easier to cruse with little effort. He sometimes gets up on his knees so I am sure that crawling is not too far behind. Jeb and his brother, Dakota, play all the time. Now that Jeb is older and interactive, Dakota loves to play with him. Jeb follows him around the house, which Dakota just loves. The boys get along so well together. The only problem is, is that Dakota has a lot of toys that are not for Jeb to play with. We just have to watch for that. Otherwise, Jebbie is eating and sleeping just great. He is still such a happy boy. He has a smile for just about everyone. He waves hello and bye-bye. His words include "hi" "mama" "dada" "gaga" "gee gee" "doggy" "dee dee" I am not sure what most of these mean and if mama and dada are really directed at us, but he says them! He likes to point a lot and he definitely knows what "bottle" and "milk" and "cracker" means, he holds his arms outstretched waiting for his treats. Dakota was a great baby, but Jeb has even been more fun. I don't know if it because we are older this time around, or we just appreciate what a gift and blessing he is to us, but we just love him to pieces, and so does Dakota! :)

October 24, 2000 Jebbie's doing so wonderful! He is still having his therapies at home and is coming along. He rolls all over the house to get where he wants to go. He is trying to crawl but just can't get the concept down yet. He is so happy all the time but has a stubborn streak...gee, does he take after mom?

September 20, 2000 Boy, it's been a while! Jeb's been doing so great, he needs no updates! Well, in the past couple of months, we have had him reevaluated by occupational and speech therapy. He has been enrolled in both. So, he is now obtaining twice weekly physical therapy, once a week occupational therapy and speech therapy. We feel the earlier the intervention the better to get Jeb caught up to where he should be. He is doing really well with his therapies and is working really hard. He is working on his sitting balance and rolling, upper body strengthening, as well as getting that chattering down to consonants and not just vowels. Jeb is still a very happy boy, smiling and laughing, as well as talking for just about anyone who will give him a smile. Growth-wise, Jeb is about 17 pounds and 27-1/2 inches long. We're keeping him busy!!

I keep telling everyone that Jeb has been such a joy in our lives, the good and the bad, that I wouldn't hesitate having another! Well, Wade disagrees even though I keep reminding him what cute and sweet babies we have together! Dakota is still loving his brother very much and can't wait until he gets old enough to do "big boy" things with him.

August 3, 2000 Jeb was at Mayo Clinic this week. All day Monday he had tests and exams from his pediatric neurologist and pediatric infectious disease doctor. All went so well! We do not have to return to Mayo Clinic for six months this time. Jeb's liver is working at virtually normal capacity. He was 15 pounds, 26 inches long, and his head circumference was 42.5 cm. His head size has always been a concern since CMV can cause microcephaly, where the brain is smaller than normal, causing difficulties. So, Jeb is finally on the charts between the 5th and 10th percentiles in all areas! He loves to eat and has to aversions to any kinds of textures in his mouth, hands, legs, anywhere, which is wonderful! Jeb is such a happy boy and Dakota is STILL smothering him with hugs and kisses constantly. Dakota especially likes to change diapers, feed Jeb and carry him around the house "like grown ups do."

JULY 5, 2000 Jeb went to the pediatrician today to recheck his ear infection and for his 6 month well baby exam, as well as his 3rd DTaP vaccination. All went very well. As always, Dr. Stanga is so happy to see Jeb looking and acting so healthy as compared to birth. He was 13 lbs, 14 oz, 25" long, and 42 cm head circumference. Jeb has slept two nights in his crib in Dakota's room now just fine. I guess I should stop saying "Dakota's room" as it is now the boys' room!

July 2, 2000 I thought that it would be nice to start an online journal to keep everyone in the know. Today was a very lazy day for Jeb and I. It is Sunday and Wade and Kota were busy doing boy things. Jeb and I slept on the couch most of the day. Boy did that feel nice! Haven't done that since I was pregnant with him! It was a yucky day, anyway. It rained and poured, lightening and thunder. We did do a little playing after dinner. I had Jeb playing on the floor. He rolled belly to back about ten times in both directions. He is also doing very well pushing his chest up on his arms and looking around. Physical therapy has come over three times so far. I think that below I will go back through my calendar to make Jeb's first months of life make more sense. I am also to the point now where I can accept all that has happened to our little angel. I could not look at Jeb's baby pictures or hospital things for a very long time, but I am finally getting there.