dsummersill

Julie,

My husband has severe apnea and has to wear a CPAP machine as well. I am sure you will have to help him at night for the mask goes over his head. I am not sure how bad Larry is with his stroke and what he can and cant accomplish on his own so my advice is to see when the guy comes to fit him with a mask. There are two types a nose only mask and a full mask that fits over his nose and mouth. If he sleeps with his mouth open I advise you to get him the full mask. My son has the nose only mask because it doesnt scare him as badly.

Im sorry Larry gave you a scare but I am glad he is doing good. The next time he starts coughing and wheezing like that try to lift one of his arms it will help him be able to breathe better. Caydens dr told us to do that with him when he choked on stuff too and I do that with all of us and it works with an adult as well.

My prayers are with you both

Dyan

Yes Cayden is fighting this stroke with all his might. I thank God that he gave me such a special lil man!!!!! I felt guilty to start out with but the more people I talk to here I see that he is right on track.....yes it is for a two year old and he is four but being developmentally delayed he is right where he needs to be and I am so proud of him!!!!!

I am proud of all of you fighting what yall have to go through as well and keep up the good work all of you!!!!! Thank you all of you for helping me with my son and letting me know what he is experiencing with the stories you tell here.....

Dyan

Thank you Asha,

That makes me feel so much better about the others pitying him. I know he knows nothing about others but I dont know if Im paranoid abuot it or if they really do pity him. I love him no matter what and in my eyes and the Lords he is the most perfect Cayden!!!!! I know the Lord sent me Cayden the way he is for a reason and I thank the Lord every night for letting me have this wonderful boy for one more day. He is great and he shows me that if he can live with his disablities then I can live with mine as well.....of course Im still paranoid about my own......lol

Thank you Asha and Sue,

I hope you are right. All his friends in school really like him and they dont concider him different and the birthday girls daddy loved the dickens out of him...He likes Cayden alot and they talk every time he takes his daughter to school. Everyone else there felt sorry for him and thats not what I want but they dont know the whole story about Cayden yet. What can I say to get them to understand and not pity him. I dont want him pittied because he doesnt even know that he is different and that he has disablities. This is his norm and I want to keep it that way....When he is older and starts asking I will tell him but I want him to know that he is special and that he is loved no matter how he started his life out. Me and daddy wanted him when we thought he was perfect and we want him now that we know he isnt 100% perfect......TO US HE IS PERFECT!!!!!! If the others dont see that then they dont deserve to know him.

Dyan

He was more excited about where they had the party and the word "party" than the actual party......

thank you I will definetly have to pick them up and read them!!!!

Debbie,

Thank you so much for that story it really did help me out!!!! I cant really look in his classroom but I do know how he is doing because the teachers keep me informed and yes he does have an aide to help out but its just not working right now. I hope these meds do work so that way we can keep him in this class. He is still in preschool but I dont want to put him back in the special ed program because they cant teach him the way he is being taught now. I dont know if there is any special schools for kids like Cayden like the one he was in before he turned three and went to the regular school and we have another daughter so we cant afford a private school for him. Here were we live there really isnt a whole lot of things to help him out.

Thank you for your help and I will definetly give it some time and see how it goes. So far according to his teacher he did pretty good today but when I went for the veterans program he threw a fit the whole time because he wanted to be with his sister but he couldnt and I had to leave the program early.

Dyan

Fred,

Thank you for serving and helping this country to stay free. I served in the Navy during Desert Storm. I wish I could have stayed in further but had too many health problems and now there is no way I can go back in because my son needs me to be here for him and help him continue to recover from his stroke. My daughters school is doing a program for all us vets and my son will be singing as well!!!!!

Dyan

Thank you so much for the info. Maria. That will help me see him as that than him having his second stroke. I knew when he got tired his right foot dragged and he had trouble climbing but the other day he just left that right hand hanging down and wouldnt even pick it up. That is what scared me the most so at least with this info I know that it is probably him not wanting to take the energy to use it......being his normal stubborn self........lol

Dyan

Fred,

It sure is!!!! For halloween I printed out and passed out info. on pediatric stroke to let people know that tho they think it cant happen to me it sure can. Heck It happened to me!!!!! Cayden is proof that no matter what ya do in life or how careful you are in life bad things sometimes happens to good people. I kept playing the "what if " game after we were told Cayden stroked out in my womb. I kept blaming myself for his life but I know that its not and that it could happen to others no matter how good a person you are or no matter how good you take care of yourself and the person God gave you to care for.

Dyan

Asha,

All he told me was that I scared him and he didnt scare me that he wanted to get hit by the car!!!! I was so scared that I yelled at him and that set him off even more. I cant wait until the terrible twos end because I really dont know how much more my heart or my hair will last.....lol. The terrible twos are hard when the child is two but dang its rougher when the child is actually four. He knows so much more words and can use those words against you!!!!!

Dyan

Leah,

Im sorry to hear about you beloved Jerry. My prayers are with you and your family in this time of need. I know he is with you now and throughout your recovery. I also know that he will be celebrating all of your accomplishments and the milestones you reach in your recovery.

Dyan

Asha,

I have some pics in my gallery of Cayden and tomorrow I will post some of him in his halloween costume. We do let him be as independent as he wants.....well except with sharp knives and scissors.....lol The way he feels about us at times Im afraid he will show us how much he gets mad at us for making him do for himself.....lol

Oh and we gotta let him fend for himself because the last time I tried teaching him something I taught him how to crawl wrong.........lol

Thank you Debbie,

I will see what I can do I dont know if he will sit still long enough to take pics but I might be able to do it before he goes off to school. He will be wearing his costume to school for his party. I have a few pics of him now on my profile and will try to get more on there.

Dyan

Fred,

yes it is hard to get up and know that what you did before the stroke is harder to do now but you can do it!!!! My son doesnt know any other way of life but life after stroke. Here is a game he likes to play with us....its called the "you are a liar" game. Whatever we say he cant do he does.....yes sometimes it takes him a few months or days to accomplish it and no its not always when a "normal" child would have accomplished it but he does it. And each milestone he reaches we party until the next milestone he hits. I know all who have had a stroke later in life look back on what they could do before the stroke maybe if you think about the stroke as a rebirth and each new feat you have to meet as a milestone and party or celebrate each milestone you reach. I know I dont know what it is like personnally but I watch my son suffer but this is all we know anymore.

Keep recovering Fred and I will celebrate with you on all your milestones!!!!

Dyan

Oh he is!!!! We got him a pirate costume and he had to put that on and it even has an eye patch!!!!! He has been stripping for anyone who will pay attention!!!!!!

Next will be his school.....He has to prove that he can do it!!!!! And right on time!!!!

Dyan

Sue,

My prayers are with you and Ray!!!! Im sorry he is having so many troubles.....You definetly deserve a break from all your worries. GOD BLESS

Dyan

Lisa

I havent had a stroke but my son had one before he was born and I too would have dreams of him being able bodied and I used to be so scared when he was still in the NICU that I would get a call saying that he was no longer with us.

I have finally come to realize that no matter what he can or cant do he is still very special and Lisa you too are special to your loved ones.

Keep recovering and God Bless

Dyan

Hi Fred,

I couldnt really tell ya if he is the youngest spoken here but he is pretty young. The doctor didnt believe he would live because he died on us 4 times that night and they didnt know if they could have him come back if he died again. They realized that he was dying because he was having seizures and the doctor really didnt want us to get our hopes up too much.

After he got out of the NICU on his actual due date March 3, 2007 the doctor said that he had seen worse brain damage than Cayden has and they didnt show any ill effects from it and no one could tell they were brain damaged. Cayden doesnt show too much ill effects from his strokes except the partial paralysis of his right side and him being developmentally delayed.

I really need to get a video on here to show how he runs it is so darn cute. But the more he does it the better I know he will get. I noticed that the doctors werent wrong when they said that kids are resilient when it comes to strokes and how they recover.

My prayers will be with you that you will continue to recover like my Cayden is......

Dyan

Hi Yolanda,

I know what ya mean. We never heard about strokes in infants until Cayden had his. Of course we didnt know he had one until he died on us 20 min. after he was born. They put him on two different antiseizure drugs and two days after he was born they did his first MRI.

He has been seizure free now for over a year now and off his meds. He is of course so far as they can tell only 2 yrs developmentally delayed so we are now dealing with the terrible twos. He no longer is in OT, or PT tho he still has partial paralysis in his right side but nothing they can fix with PT.

On top of all this he sees a chiropractor every month. In fact the chiropractor has done wonders for him. He walks with out a limp now and he started using his right hand more and can actually use it to throw a ball. We work with him at home but I dont know if he will ever gain full use of the right side.

People are actually surprised when they see Cayden that anything is really wrong with him he looks so normal and that really irritates me because they think he can do things others can and it causes him to get hurt. I dont know how many times my inlaws have choked him by giving him food he couldnt eat.

The Nuerologist is afraid that Cayden will have another one here shortly but his chiropractor thinks hes safe now that he has been adjusted. But the one thing that really scares me is that he will end up with epilepsy. The seizures he used to suffer scared the day lights out of me....He would turn blue within seconds!!!!

Dyan

Hi Leah,

Im new to this site but my prayers are with you and your hubby Jerry. I am so sorry to hear that you are having a bumpy road in life. I know the Lord is definetly there for you and Jerry. I am not going through such a hard road but my son was in utero when he had his stroke and its rough some days to be able to do everything that needs to be done with him and his sister is also special needs but she has shaken baby syndrome. Keep strong in the Lord and he will show you the way.

Prayers from

Dyan

Thank you Asha,

He is a fighter!!! Today he showed us for the first time that he actually knows how to undress himself and dress himself!!!!! We knew he could do his pants but I had no idea that he could do his shirt. We are trying to get a special tool so he can button up his shirts and the other night he showed me he could snap is clothes that had snaps on them. These milestones he has hit pretty much on target but his walking and the infant milestones took him longer to achieve.