Dillon's Updates


~* I'm SOOOOO Big!! *~


Dillon was 5 months old on April 11th, 2000 and doing very well. He had studies done on his kidneys and his kidney is still dialated, so we continue cathing for now. He goes to daycare with Brooke and Connor while mommy and daddy are at work, and does very well. Our daycare provider is very good with Dillon and the kids, and she has had Brooke since she was very little, so I have alot of confidence that Dillon will do well there as well. They all love her and beg me to go over to her house! (I see how I rate!)

Dillon also continues to receive occupational and physical therapy about every 2 weeks. His therapists are great and they are doing a wonderful job with him. He has made alot of progress, but is still alittle behind develepmentally. They work mainly on his head control and also with watching, following and to grasp onto toys.

Dillon is a very happy baby, always smiling and is so easy going. We thank God every day for him! We would like to thank everybody for all of their support and prayers and would like to ask you to continue him in your prayers for his long journey ahead.

Thank you for visiting Dillon's website and visit often, as we will continue to keep you updated on his site.

Dillon was 6 months old on May 11th,2000. His checkups all went very well. His kidney ultrasound showed that his kidney dialation is improving, so we continue to cath him and give him his medicine in hopes that is continues to improve. His hips are still in place and he continues to wear his AFO's to keep his club feet corrected. The only not so great news was that Dillon is going to have to wear a helmet to correct the misshapen head that he has gotten. Part of the side of his head has gotten very flat and we thought it was from him favoring that side all the time, but it turns out that it is more of an intutero problem from lack of amniotic fluid. He will have to wear the helmet for 23 hours a day for about 2-3 months which is not too bad.

Dillon is starting to receive his physical therapy every week now. He is doing much better with his head coordination which we are working the most on. He is becoming more responsive to toys and people. We are also working on getting him to roll. He is still alittle bit behind developmentally, but is doing so well and is a wonderful baby.

Dillon is a very good eater. He eats solids 3 times a day now and likes just about everything but carrots and pears. He is quite the chunk too. He is a hearty 18lbs 4oz and 251/4 inches long. He is a typical male and never misses a meal! LOL

Dillon was 7 months old on June 11th. Pretty much everything is the same. He continues to do well and his shunt is still working great! whoohooo!! He is starting to hold his head up so good and will hold it up for short periods now while laying on his tummy. I can not believe he is 7 months old already and I dont know where the time has gone. He continues to wear his helmet to correct his misshapen head, a picture below is of him in his helmet. Hopefully he will only have to wear it for acouple months. I havent seen alot of improvment as yet, but it will all work out.

He will get new AFO's next week. He has finally out grown the ones he has with those little fat feet. I hope they make them as cute as his first ones. ( his first ones were a little denim print and they were adorable).

We are also getting physical therapy every week now. He was diagnosed by therapy has having low muscle tone in his trunk area, so we are trying to work on excersises to stregthen them. They said he is on track and normal with his speech and coos and vocalizes like he should for his age, so that was good news for us too.

The biggest thing we got to do this month is to meet another couple from Omaha that was going down for the surgery as well. we met with them acouple times and were also on the news with them for the story on the fetal surgery. They had the surgery on June 7th and they are doing well. It will be great to have another couple in Omaha that has gone through this. They are a very nice couple and have 2 adorable kids and are expecting a boy. Please pray for their continued health and upcoming baby.

On June 29th we got the results back of Dillon's MRI and we didnt get good news. The good news is that Dillon's shunt seems to be functioning properly. He still has a right ventricle that is alittle enlarged, but it is unchanged from the ultrasound in March so at least it is stable. The bad news is that the MRI showed that Dillon has a chiari II malformation.(chiari is where the brain stem pulls down into the spinal canal) I was hoping that the fetal surgery had reversed this malformation, but no such luck with Dillon. I didnt think he had this malformation because he has never been symptomatic with it- never has had breathing or choking problems or anything. The secondary problem associated with chiari and shunt problems is called syrinx which Dillon has very badly and I was always hoping he would avoid. A syrinx is where spinal fluid is trapped in the spine causing the spine to dialate and therefore pressing up against nerves which causes less nerve function at the point of the syrinx. Dillon's syrinx is very large going from C4 to T3 and then again from T5 all the way down. So basically he is affected from the top of the neck down to the base of the spine.

They want to treat the syrinx by doing a chiari decompression surgery. Hopefully that will do the trick, but with such a large syrinx, he may end up having additional surgeries to control it. I dont know when and if they are doing the surgery yet. I will write more when we know more. Please keep us in your prayers for the challenges that are just around the corner!


Today is July 14th, 2000. Today one year ago we found out of Dillon's diagnosis of spina bifida. It is also one year ago today that I found Vanderbilt's web site and talked to some fetal surgery patients who helped me out so much! It has been a tough year and today will be very much remembered. I have gotten so much support and information through the fetal surgery "onelist" and without it and my wonderful family and friends, I dont know where I would be today! Thank you everyone for all you have done, it means so much!!


We sought out some second opinions on Dillon's chairi decompression surgery to treat his syrinx from 3 other neuro surgeons (Dr McLone in Chicago, Dr. Tulipan at Vanderbilt, and Dr Menezes in Iowa City). They all reached the same conclusion on Dillon in that his symptoms are lower back related therefore a de-tethering surgery should be done first. A tethered cord is very common with spina bifida and essentially all have it, it is just a matter of whether they are symptomatic with it to treat. A tethered cord is where the scar tissue from the closer of the spina bifida lesion attaches itself onto the spinal cord causing a pulling down of the spine. In Dillon's case, he has started losing some of his leg function, although his leg function is still very good and he has also started to have inability to have a bowel movement by himself. They agree that he is symptomatic enough to treat and want to prevent future deteriation.

We have decided to have Dr. Tulipan do Dillon's de-tethering surgery. The surgery is scheduled for September 12th. It will work out nice because Vanderbilt's annual fetal surgery reunion is scheduled the weekend before the surgery so we will get to go down for that too now. Please keep Dillon in your prayer for his upcoming surgery and that he will continue to do well.


Today is August 26th, 2000 and one year ago today we had the fetal surgery. I cannot believe that it has been a year already. What a year it has been. Today will be remembered as much as a birthday and it is a special day. Thank God for the doctors at Vanderbilt and for Dillon!!
Dillon is doing well. He is starting to learn so much. He waves hi and bye bye, it is really cute. He also will cover his face with the blankey and play peek-a-boo with you and just giggle like crazy when you say "boo". He also will play "so big". He likes to sit in his walker and he is starting to bear weight on his legs. He pushes himself backwards in the walker so that is a good sign. He is so much fun and such a happy guy!
We are getting ready to go to Nashville for the annual fetal surgery reunion which is September 9th and Dillon's surgery is scheduled for September 12th. Please keep us in your prayers that the surgery will go well and that his problem will be taken care of with this surgery. We will keep you updated on the surgery as soon as we can. Thank you again for your prayers and support.


Home Back