I know that I havent posted in a few days, but to be honest I wanted to make sure everything went smoothly. I didn´t want to jinx anything. On Tuesday and Wednesday Dylan just got shots to boost his bone marrow production. Thursday was the big day!!! We got there at 8:30 am and everything started around 9:30. They took Dylan away into the operating room. That was very hard. Watching him go. These people are wonderful and I know that they have done this many times, but it is still my child and I was scared. I walked up and down the halls the whole time they were back there, which seemed like forever, but in reality it was like 30 minutes. During this time they extracted Dylan´s bone marrow so that they could get the stem cells to infuse in his spine. Once they were finished they wheeled him out and everything was great. His heart was doing wonderful and the extraction went well. There was a cardiologist monitoring his heart the whole time, which made me feel much more comfortable. Dylan woke up about 20 minutes after they brought him in the room. He was very irratable and I could tell he was uncomfortable. This unfortunately is normal considering the extraction in pretty painful. That is why he was put to sleep. So we had to wait around for about 3 hours for the lab to seperate all of the red blood cells from the white cells and the stem cells. Once they did that they brought back the red blood cells and put them in his IV. Dr. Mancias said that the red blood cells that were put back in the IV also contain stem cells and he got 9 million through the IV. Once they got everything seperated it was time to go back into the operating room and infuse the stem cells into the cerebral spinal fluid. Dylan had to be put back to sleep for this because he had to be completely still. The procedure took about an hour and everything went awesome. He was infused with 22 million stem cells, which is an awesome number. After they brought him back in the room he slept about 30 minutes and then he was ready to eat. He had not eaten all day and he was famished!!!!! Once we got home we got him so more milk and food and it was off to bed. Well, the doctors told us that he would probably sleep in and not to worry if he slept later than he nomally did. Of course Dylan wakes up at 3am and is wanting to have a party. He was talking and laughing like it was 10 in the morning. He finally went to bed around 5:30 and slept till 7am. We went back to the hosptial around 10 on Friday morning just so Dr. Mancias could check Dylan out and make sure the injection sites looked good. Everything looked great. We pray that the stem cells will work and will see some improvement in 3 to 4 months.
We went to the planetarium today just to get out of the hotel. It was pretty neat but nothing to exciting. The neat thing was that they had peacocks walking around and parrots flying in an aviary. They were so beautiful and Dylan really seemed to like them. There was an albino female peacock. That was a new one for me. I have to say that this has been a wonderful experience and I pray that it was worth it. I go to sleep thinking about all of this and I wake up thinking about it. It has consumed my life this last week. I will be glad to get back to normal day activites so I am not just thinking about it all of the time!!!! We leave tomorrow at 12:30pm central time. I can`t wait to get home and see Joe and Conner. I have missed them so much!!!!! I will keep you posted on Dylan`s progress as well as all of the wonderful things that Conner is doing as well. Hope this finds you all well. As they say in Mexico. Chao!
Monday, October 4, 2010
So I didn't post yesterday because we really didn't do anything. The doctors came to the hotel to give Dylan his shot to start boosting his bone marrow and after that we went to the mall and then walked back to the hotel. Monterrey is a nice city and the people here are really nice. Unfortunately, today was not so great. Dylan was to have his MRI today and that meant that he could not have anything to eat or drink after 6:3o this morning because they have to put him to sleep. He is obviously not going to lay still for them to take the MRI pictures!! We got to the hospital at 10:00 and they were running about 30 minutes behind. Not to bad but then the screaming starts around 11:00. Dylan has really bad veins to stick. (a trait he unfortunately got from me) So for an hour the nurses and doctors tried to get a vein and then once they got it, keep it from blowing. Well finally they got a vein and it was working and everything was good. We go down to have the MRI and when we get down there and get ready to push the sedative medicine in..... the vein had blown again!!!! At this point the doctors say that they are not going to stick him any more and they are going to try and give him some sedation medicine by mouth and see if it will last him long enough to get the MRI done. They give him the medicine and within 2 minutes he throws most of it back up. He had not eaten all day and by this time it was 1:00pm. So the medicine didn't sit well on his stomach to say the least. Luckily, enough stayed down to get him in a sleep that was good enough to get the MRI finished. After that we went back up to the doctors office to get Dylan's daily bone marrow boosting shot. That went well. He whined for a minute and then it was over. We finally made it back to the room around 2:3o where Dylan downed a sippy cup of milk and a lot of Little crunchies. He was my hero today. After everything that he had endured today he was smiling and being his cheerful self after he got something to eat. He has been through so much in his little life already. Tomorrow will be a better day!! Hope this finds you all well.
Saturday, October 2, 2010
We have arrived and we are so excited. We landed in Monterrey, Mexico around 11:30 am central time. It has been run run since we got here. Fortunately, we have a wonderful cab driver that has hauled us everywhere and back again. He is so great. He brought us to the hotel then to the hospital then to the grocery store ( where he went in and helped us shop and get the best stuff!!!) then to McDonalds and then finally back to the hotel. The people here are absolutely great and so helpful. While at the hospital Dylan had t0 have some blood work done and of course it took them forever to get a vein. The first nurse stuck him and did the roll the needle around to try and hit the vein. Well like many other times this did not work. Dr. Mancias took over and got a vein in his hand. Poor Dylan just has veins like me. They are so hard to get. He was a trooper though, as always. He is such a strong little boy. Dr. Mancias is Awesome!!! She is so nice and knows what she is doing. You can tell how much she cares about what she is doing. I will keep you updated and everything. Until then hope this finds you all well.
Wednesday, September 1, 2010
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!!!!!
Monday, February 8, 2010
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!!
Thursday, January 14, 2010
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.
Thursday, December 31, 2009
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.