Dillon's Updates


~* I'm SOOOOO Big!! *~


Dillon had an MRI on November 2nd. The results showed that his syrinx still exists in the upper portion of his back, but it has decreased where he had surgery in Nashville in the lower part of his back. I really did not expect any bad results since he hasnt had any problems and he seems to keep getting stronger but his neuro has decided to not put him through surgery since he isnt showing any symptoms of the syrinx and we will just follow him up with a series of scans to make sure it does not get progressively worse. This sounds good to me although I worry sometimes that if it is not taken care of right away that it could do permanent damage. Why wait till it is a problem to do it and why not be proactive? But at the same time I understand the theory on do not fix what is not broke and do not put them through a needlesss surgery if you do not have to. It is a hard decision to make. I just pray that we will make the right decisions on his care.
On November 11th, 2000, Dillon turned one year old. It has been quite a journey and we had a lot of celebrating to do. In a way, I couldnt help feeling a tad emotional about it all. Dillon has grown up so fast and he is such a sweet, loving baby. I will miss him being a baby so much especially since I plan on Dillon being my last.
I would not trade what we have been through for the world. Dillon is a constant inspiration to me and he makes me realize what a gift from God he is. He is given so much strength to endure what he has to go through for a reason. Dillon has made me see how the little things in life matter so much. He has opened my eyes to see what I havent before. The changing leaf color in the fall, the sunset at night, and also those wonderful developmental milestones that he has reached from smiling to sitting up by himself. We take for granted all of things things in life so often. Each little developmental milestone for Dillon has been a huge accomplishment.
The birthday celebration was a lot of fun. We had CBS and NBC news stations come over to do the birthday follow up stories and they both turned out very nice. Family came over for the party and it was a pooh theme and we opened presents and had sloppy joes and twice baked potatoes for dinner and then we dug into cake and ice cream. Unfortunetely the weather was not good and we got freezing drizzle that nite, so family out of town was not able to join us, but we had a house full anyway.
Dillon loved his first taste of birthday cake. He got his own special personalized cake to dig into and enjoyed every bite. He about devoured the whole thing. I am surprised he didnt have a tummy ache that night.
Thank you everyone for the love and support you have given us this last year. We have been through so much and could not have done it without our wonderful friends and family. The support and generosity you have all shown us is incredible and God has taken good care of us. I thank you all from the bottom of my heart. Dillon, mommy and daddy loves you so much and we have a lot more great times a head of us but thank you for coming into our lives and giving us so much joy every day. You are an amazing little guy and such a gift from God!!

Dillon was 15 months old in February and we had our spina bifida clinic this month so I thought I would give an update on him. He is getting so big and just growing up so fast. He is still chubby but has slimed down quite a bit compared to a few months ago. His baby diet has done some good! It doesnt help that his favorites foods are pizza and chocolate! ô¿ô He is now 30 inches short, and weighs 27 pounds. I need to either start lifting weights to carry him, or he is going to need to get mobile real quick so I dont have to carry him anymore. ha ha.

All of his urology tests went very well. His kidneys are back to normal, no more dialation so that was very good news. His pressure levels are also back to normal. We are attributing it to the tethered cord surgery and think that is why everything is going back to normal. Hopefully if this keeps up, we may be able to discontinue cathing or at least decrease the frequency of it.

He is coming along well with his phyical therapy as well. He has made alot of progress in trying to get mobile. He will scoot backwards on all fours. I call it the "inchworm" crawl. He will get into the crawling position from sitting now and wants to go really bad, he just doenst have the upper body strength yet to do it. I think it is because he still has a syrinx (fluid build up) in the upper part of his spine. His MRI showed that back in November and he has progressed but not like I think he should have. We are in the process right now of getting some opinions on it. The doctor here says no surgery, the doctor in nashville says surgery, so it looks like we might go to chicago for a third opinion.

Other than that, he is progressing very well. He babbles and is still such a wonderful, easy baby. All in all, it was mostly good news. Just so many decisions to make with these babies. Please keep us in your prayers for continued health. Thanks again for visiting our site!

Dillon had another shunt revision on Thursday March 29th. For a week he was starting to show malfunction symptoms such as extreme fussiness, did not want to eat as well as he usually does, and he had thrown up a few times. I contributed all this to him getting in two molars, so I thought not much of it till he cried most of Tuesday and motrin was not relieving his discomfort. Dillon is usually very happy and laid back, so when he cries, something is definetely wrong. I called his neuro surgeon, he went in for a CT scan on wednesday which showed minor fluid increase but the increase was apparent. They decided it looked as if Dillon had a clog in the top part of the cathetar of his shunt and he would need surgery.

Thursday March 29th, at 630PM he was taken in to surgery. Big smiles on his face as he was wheeled into the operating room not knowing of his impending doom. They were done 20 minutes later and all went well. He did have a pretty major clog in the shunt and fortuntely only the top part of the shunt needed to be replaced and not the whole shunt. The doctor said it was definetely the right thing to do, so we were thankful. It is hard to believe he was showing symptoms so early but I am glad he did. This is shunt number 4, so I hope this one will last. I dont know why Dillon has so many shunt problems but one day it will settle down i am sure.

We got to go home already the next morning. We signed discharge papers and were out by 10am. Its amazing with a brain surgery they can be released so soon but he is a trooper and did very well. He's back to smiling and playing and acting like nothing ever happened. He is quite the miracle boy! Thank you everyone once again for your prayers and please pray for his continued health.

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