Hope for Dylan

I haven't updated the blog for a while, but my life has been so busy lately. Dylan and Conner are doing great!! The reason for my post today is to ask for your help. I was recently introduced to wonderful lady by the name of Lizette. Her son also has Cerebral Palsy. His name is Alex and he is 8 years old. After speaking with her I learned that she had taken Alex to a hospital in Monterrey, Mexico to have a stem cell treatment. I have been researching this type of treatment every since I heard the words "Dylan has Cerebral Palsy". It's like your brain goes in overdrive and you try and find anything that can help your child. After speaking in depth with Lizette about the progress that Alex has made as well as the other children that had also gone down to do the treatment, I was ready to go the next day. Unfortunately, this treatment is expensive. It isn't something that is covered by insurance and not performed in the United States. There is a doctor at Duke University doing treatments with stem cells but it is with what they call cord blood. We had intended to bank the boys' cord blood but as most of you know things happened really quickly when it came to the delivery. So, we were unable to bank the cord blood. This treatment is our next best option. What happens during the treatment is actually very simple. Dylan would be given injection once a day for 4 days to stimulate his bone marrow and then on the 5th day they would retrieve the bone marrow. They will then seperate the stem cells from everything else. From there they inject the stem cells into Dylan's cerebral spinal fluid. This will carry the stem cells up to his brain and go to the affected areas of his brain. Our hope and prayer is that the stem cells will help Dylan be able to talk, sit up by himself, walk, and just help him in his everyday life. We understand that to some people this might sound extreme. All I ask is that you put yourself in our position. We are simply trying to give Dylan the best shot in life. If you would like to help Dylan get this treatment please click on the button below. Also, if you don't feel comfortable donating through PayPal or you would like a tax deduction you can send your checks to : First United Methodist Church of Winfield (memo section put Dylan Sce Fund). The address is P.O. Box 387, Winfield, AL 35594. Your donations are greatly appreciated!!!!!

Donation Amount

Option 1 $10.00 Option 2 $20.00 Option 3 $50.00 Option 4 $100.00

Dylan's new specs

Dylan got his new glasses today. He looks so cute!! I can't believe how much he looks like Alfie off of Christmas Story. The opthamologist is hoping that the glasses will help his eyes and straighten them out. The doctor is giving the glasses 6 weeks and if they haven't made an improvement then its surgery time. I am really praying that the glasses work. I don't want Dylan to have to go through surgery. The good thing is if he has to have it at least he won't remember it. I can't get over how he has just gone with the flow. He acts like there isn't anything any different. Conner is intrigued by them. He wanted to pull them off at first but I think he realized that he would get in a lot of trouble if he did. I will give an update on the doctor appt as soon as I know something.

On the Conner front. He is recovering from a double ear infection. He has been a really good boy considering. He seems to be doing better this week. We go back to the doctor on Friday to get shots and a check up. It will be fun!!

I guess Conner feels left out

Today I had to take Conner to the hospital to have an ultrasound done of his brain. The neonatologist doesn't like the size of his head or his soft spot. Both are bigger than she would like. So that was out adventure today. Of course once we got there their computers went down and it took an hour longer than it should have. That wouldn't have been that big a deal if poor Conner had been allowed to eat. I was told he couldn't eat two hours before appointment. Well his appt was at 11:00 and they didn't get to him until 12:00. He was starving and really ready for a nap. The radiologist told me I could get him something to drink if he could lay down while drinking it. Poor little guy was so tired that he fell asleep while she was doing the ultrasound. Which worked out really good because she was able to get great shots of his brain. I am not really worrying at this point. I figure I will wait and see first. Also while at the neonatologist she heard a murmur on Conner. So now we have to go to the cardiologist and have an echo cardiogram to make sure it isn't affecting his heart function. Seeing how the cardiologist knows us so well they were kind enough to let Conner tag along with Dylan in February. I am praying that we get good news on both of them. Dylan has been doing great. He hasn't had any heart issues of late. We are only going in Feb for a check up. My mother also has a heart murmur and has had all of her life. Their pediatrician actually heard it about a month ago and she seems to think that it is fine and nothing really to worry about. I have taken the same approach with this as I have with the ultrasound. Until somebody gives me something to worry about I am not going to worry. (not to much anyway) We definitely have enough to keep us busy in the meantime. Conner is getting into everything. He is starting to run and falling a lot again. Dylan is keeping us busy running around for physical and occupational therapy. I truly think that it is helping him. He is much looser than he was six months ago. We are going to up it as well. Hopefully it will only make things better for him.

Dylan and Conner update

I haven't updated on Dylan in a while so I thought I would. He is off all of his heart medications!!!! That is a blessing in itself. We go back to the cardiologist in February to have an echo of his heart to make sure everything looks good. He seems to have grown out of his SVT's but he still has the Hypertrophic Cardiomyopathy. He will have this the rest of his life. We just pray that it will not affect the function of his heart. If it doesn't then he will not have to be on medication for it. All we can do it wait. As far as his Cerebral Palsy goes. He has started a medication called Baclofen. This is used to help with the stiffness. The doctors say some kids it works great with and some it doesn't work at all. I am praying that he is in the group that does help. At 18 months he will start to receive Botox injections. I'm hoping the doctor will give me some while we are there. This will help with the stiffness as well.

Dylan is very close to sitting on his own. He is starting to feed himself with a couple of foods and loves playing in his Bumbo seat. He is reaching and grabbing for everything that is in front of him. His therapies are definitely paying off. He is an amazing little boy and he is teaching me different things everyday.

Conner is my little mad man. He is walking everywhere and starting to run a little bit. He is into everything. He even seems to crack himself up sometimes. He is talking up a storm. He can say dada, mama, night night, and no. He has also learned to shake his head no. As you can imagine this is his favorite thing to do. Everything is no, no matter what it is. He is a riot! I can't get over how much he looks like a little boy now. He doesn't even resemble a baby anymore. It makes me sad but also very happy.

I cried the other day just watching him run around. Its amazing how they grow up right before my eyes. Make sure you cherish every minute you get to spend with your children because one day you will blink and they will be gone, moved out of the house and making one of their own. Have a wonderful New Year's Eve and I can't wait to see what the new year brings.

Christmas and the boys

Well Christmas has come and gone and I have to say I am exhausted. The boys did great in Winfield. With all of the running around that we do they were really great. Santa came and brought them a little four wheeler by power wheels and some other toys. We kept it low key this year considering they had no clue what was going on. Conner kept walking around saying HO HO HO. It was really cute. They got so much stuff. I didn't have any room to put the toys that they already had much less all of the ones they have now. Unfortunately, both of the kids have come home with colds. It is awful. They both have the worst cough and I think Conner is cutting more teeth. Double trouble. I hope everyone had a wonderful Christmas. I can't believe it has come and went already. It's insane how fast time flies by.

My boys and their cups

I am soooo proud of my boys. Not only has Conner been off of his bottle for over a month now, but Dylan is now off of his. I can't believe it but they are both drinking from their sippy cups. Dylan was a little harder than Conner. He fought it but in the end the cup won out. It didn't hurt that I wouldn't give him one once I knew he could use a cup. I am pretty anal about taking bottles away. I can't believe how fast they are growing up. Right before my eyes they have changed into little boys where they used to be tiny little babies. Its amazing to think that this time last year we were in the hospital wondering how long Dylan would be with us and if Conner would ever learn to eat. Oh how times have changed. Conner can't get enough to eat and Dylan is doing so good. He is off of his heart medicine as of yesterday. I am praying that this works and his heart stays strong. Unfortunately, the only way of knowing is by taking him off of his medication. Please say a prayer for him. He is such a little trooper. I can't tell you how much he teaches me everyday. I just wish that I could make him all better. He is a wonderful little boy and he will continue to make great progress. Conner is a little tyrant. He is so funny. He throws and kicks everything. He has also learned to dance and it is absolutely hysterical. Can't beat a 1yr old dropping it like its hot!!!

Teething blows!!

I forgot how fun teething can be. Sahara (the little girl I was a nanny for) was so good. She only got fussy for like a day or two when she got teeth. Well that isn't the case for the boys. Dylan just wants to be held and Conner constantly has to have me beside him. Well in case you were wondering this isn't easy to do. As hard as it is I can't really complain. Dylan looks so cute with his two bottom teeth coming up. They have just broke through and are so sharp. Conner's are just below the surface. His will be coming up any day. They are eating baby food now and have gotten on a schedule. It was difficult to do but it was well worth it. They are sleeping through the night and go to bed around 7:30. It is wonderful. They get themselves to sleep after their bottles and don't wake up at all!!! If Conner would only get out of his habit of getting up at 5:3o to eat, it would be great. He is so cute though, he literally gets a bottle and goes back to sleep until 8. From start to finish it is like 15 minutes. The only problem is Dylan gets up around 7, so we are just getting back to sleep and then its time to start all over. Oh well, its better than getting up every 3 hours. They are such wonderful babies. I can't get over how well they are doing. Conner is commander crawling everywhere and pulling up on everything. He loves to walk and is getting brave and letting go of things. It won't be long and he will be walking on his own. Dylan is doing good as well. He is prop sitting and rolling over both ways. His goal is to be sitting on his own in two months. I pray that he does it. I think he will. He is so much happier since we put him on soy milk. It has made a huge difference in his reflux. He still hates physical therapy but one day I know he will appreciate me for making him do it. Right now he would isn't so grateful. He just yells at me and turns red. It is really pretty funny, but I can't laugh because I know he hates it. I hope everyone is doing well.