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.

Doctors are STUPID

I don't mean that all doctors are stupid. I just think that all of the doctors that make parents feel like they are stupid for suggesting that something is wrong with their child are stupid. In my case I am referring to a doctor at the children's center at Egleston that specializes in GI. He made me feel like such an idiot for suggesting that Dylan might have a milk allergy and contributing to the horrible time that he was having with reflux. I have read that a lot of times reflux symptoms can often mimic milk allergy. Well this doctor assured me that it was reflux, but he didn't take in to account that his reflux did not get really bad until 2 months after we came home. Well people develop allergies and Dylan's reflux had actually gotten much better before we even left the hospital so I knew in the pit of my stomach that something else was wrong. So, on July 8th I made the decision that I was going to get Dylan tested for allergies and see if I was just being that mother that all doctors hate or if I really was right and something else was going on. GUESS WHAT???!!!! We found out on the 16th that low and behold Dylan has a milk allergy. This bit of information absolutely lit me on fire. I wanted to call that doctor and give him a piece of my mind, but I was able to cool off and calm down. I am however going to find a way to go on the internet and make sure that he has a bad review and hope that it is seen by a lot of people. So, if anyone has any suggestions please let me know. We started Dylan on soy last friday and he is doing much better. His "reflux" is already so much better. It's amazing at how much happier he is and I truly believe that it will only get better. The morale of this ranting is to follow your gut even when a doctor makes you feel like you are a complete moron!!!!

The boys are sleeping!!!!

Okay so over the weekend I decided that it was time for the boys to start getting themselves to sleep on their own.  I was so tired of rocking them to sleep then trying to lay them down only to have them pop their little heads up like it was 7 in the morning.  So I set Monday as a starting day.  I was going to be home alone and knew that when I laid them down for their nap that they could cry and I wouldn't get a guilt trip from anyone.  Well,  Dylan went right to sleep without any problems!!  Conner on the other hand screamed for an hour.  So at an hours time I went and picked him up and brought him downstairs.  I didn't however let him go to sleep on me.  I made sure that he kept himself occupied and didn't really love on him to much.  This way he wouldn't consider it a reward.  He was so sleepy an hour later and was begging me to go to sleep.  I fought through it though and kept him up.  Well, then it came time for the next nap and Dylan went right down again.  Conner fought it again.  So to say that he was tired when it came bedtime was an understatement.  I put Dylan down and he moaned and whimpered for about 5 minutes and then off the dreamland.  Conner put up a huge fight.  I let him scream for about 45 minutes and then went and sat in his room with him until he went to sleep.  I never touched him or did any consoling.  He finally went to sleep!  They slept all night!!!!  Conner woke up at 5:30 to eat and Dylan got up at 7:00.  Tuesday came and they both went down for their naps great.  Only a few cries and no screaming.  Last night was even better.  They both went down and within 10 minutes they were both asleep.  This morning Conner was up at 6:30 and Dylan was up at 7:00.  They both slept almost 11 hours.  Can't beat it.  I am loving this.  I just hope they keep it up.

Dylan update

Sorry it has been so long.  Life has been a little crazy.  As most of you know by now we went to the neurologist a month ago today and he said that Dylan was showing the first sign of cerebral palsy.  I knew that he was going to say it but I kept hope alive that maybe it was just me over analyzing.  Unfortunately, I was not.  Dylan has increased tightness in his arms and legs.  His arms seem to be worse than his legs.  We have a physical therapist that comes to the house one time a week and then I do the exercises 3 times a day on the days she isn't here.  It can be very overwhelming at times but you do what you gotta do.  Overall he is doing very well.  He is starting to track things much better and he seems to be much more alert.  Everyday we hope and pray for the best and just love him as much as we can.  I want to thank all of you for the prayers and well wishes.  It is wonderful to know that we have such great friends.