dsummersill

Well everyone we have some GREAT news. Though Cayden has had some obstacles in his life he has again hit one more milestone. What milestone has he hit this time? HE HAS LEARNED TO RIDE HIS BIKE WITHOUT TRAINING WHEELS!!!!!! We were wondering how horseplay (horse therapy) would work for Cayden but now we know. When he just turned 5 I tried teaching him how to ride but he wouldnt and of course, couldnt learn. Now that he has had 4 lessons of horseplay he got up on his bike with two wheels and with daddy's help took off. He, of course, took a few spills but the more he rode the better he did. We are SOOOOOO PROUD of him!!!!! YOU GO CAYDEN!!!!!! :goodjob: :jig:

As of yesterday we have found out that God is not finished with us yet. Why? We had a Doctors apt. and they want us to get Cayden tested for "high functioning" autism. What more can we take? First he dies on us at birth when we find out he had a stroke before he was even born. Then we find out that because of the stroke he has the symptoms of ADHD, OCD, and ODD. He is having attitude problems but some seem normal for a 5 yr old. Now they think he has Autism!!!!! They are thinking that they misdiagnosed him when they said that he was developmentally delayed because he is supposed to be able to play with others and interact with others but he still refuses. I took him to an old classmate of his and he wouldnt even play with him. He is using these children he knows as "props". He has no friends and he doesnt really care. I have a friend who has and autistic child and she told me two yrs ago that he was showing signs of being autistic but when I talked to his neurologist he said that he was too outgoing to be autistic but he really isnt really what you call outgoing. He looks like it but he doesnt get too personal and he doesnt talk to others longer than a lil while and we thought that was due to his ADHD. Now we dont know what we are looking at. I am glad God entrusted me to care for such a special child but come on now I am not that trustworthy for this special of a boy!!!!!!!! PLEASE NOTHING MORE WRONG WITH THIS CHILD!!!!!! Dyan

Hi Catebeleu, Sorry to here about your man.....Asha is right tho, you will find a new "norm". My new norm started the day after my son was born. My son had his stroke before he was even born so all he knows is "post stroke" life. We try not to make a fuss over him even tho there are things he cant do that other kids his age can do. We have been talking about the use of his leg and now he wants a cane so he can walk better. He walks just fine tho when he gets tired he will start to limp. One piece of advice that I have heard from alot of different people is not to compare his recovery by others.....everyone recovers in their own time......I will pray for you and your man Best wishes for the both of you, Dyan (caregiver of 5 yr stroke survivor)

Well today was Caydens ENT apt. and we have some good news and bad news. I know alot of people would like the bad news first unfortunately the good news needs to come first because it wouldnt sound right giving the bad news first. THE GOOD NEWS: He will out grow this throwing up through the nose deal. He also does not have cleft palat...however you spell it. He says that this is very rare to have cleft uvula without the cleft palat. He listened to his speach and he said that Cayden doesnt sound nasaly when he speaks so that is a sign that he doesnt have cleft palat. THE BAD NEWS: He wont out grow it until he turns 12 or 13!!!!!! We have 7 more years of this frightful throwing up. He also said that he is not to drink from a drinking fountain because that also comes out of his nose because he is having trouble blocking his nose. The stroke is what is keeping him from being able to block his nose and controlling that. He is hoping that Cayden will be able to control his uvula so he can block his nose when he throws up. He also told us that Cayden is not allowed to get his tonsils or his adnoids out because that will make this nose problem worse and that even to do surgery on his uvula will be too rough for Cayden.....but if he doesnt outgrow it by JR high that he will need the surgery. Please pray that he does get control over this. Dyan

The girl is a volunteer at the horse therapy....She too adores Cayden and he is very popular there being the baby of "Horse Play". The pic is of his first day at therapy.

Sorry havent written in awhile but with school and Caydens graduation from pre-k we have been pretty busy. Alot has happened in the past few weeks. 1.) Cayden started horse therapy this past monday and is loving it. He rides a horse and is learning how to get his horse going and stopping. At the end of the six weeks there will be a special needs rodeo that his class will be participating in. 2.) He will be going to see an Ear, Nose, Throat specialist and may have surgery done on his throat. They found out that the thing that goes in the back of the throat blocks the tube to his nose when he throws up has a split in it. Its hard to explain but they need to get it fixed because it is not looking the way it is supposed to. We wont know for sure until we see the E.N.T. Hopefully in the next few weeks before school starts so he isnt missing any school days. The doctor did say that his stomache acid wont damage his nose because he doesnt throw up enough to do that. THANK GOD!!! I was more worried about that more than anything else. 3.) Cayden is off his meds and doing pretty good without them tho he is still trying to get used to this new routine of his. His sister is gone for the summer to visit her father and he is calling her at least 3-6 times a day. And she thought she would go without him.....LOL. She does miss him tho and she said she doesnt want to go visit because she misses him too much and he misses her too.

Try three is a bust.....He was up all night last night and when his friends got here he didnt like what he got for his birthday and then he wanted to send his friends home. He hadnt eaten since breakfast and unfortunately that is one of the side affects of this med. He then didnt go to sleep until 9 last night and got up at 11:30 and didnt go to bed until 2 this morning and then got back up at 5 am. I ended up having to call the doctor and they took him off this one and they put him back on number 2 until thursday.

Caydens birthday was this friday and a week ago he had his fifth anniversary of his first stroke. He had a small stroke recently but he is doing great. It didnt affect him or did he lose progress of what he has learned. We are having a birthday party for him today with some friends of ours. He is excited about his party and cant wait until his friends get here. He keeps asking about when they will be here and because he knows his numbers he can tell time with a digital clock so he is watching the clock. He is potty trained and he is now on an ADHD medicine. We are trying all different kinds to see what will work for him. So far we are on our third med.- Vyvanse. The last two he was on he became very hatefully and because he is on steroids he is very strong for a 5 yr old. A couple of days ago he picked up the front of our rocker recliner and threw it backwards. We had to get him off of that one. So now try number three. If these dont work the state will most likely pay for his braincore therapy. If yall google braincore therapy they have information on it. It is suppose to help with ADHD, stroke and bipolar.....everything he has!!!!! More updates on that when the time comes. Dyan

HAPPY ANNIVERSARY!!!! Cayden will be celebrating his 5th year anniversary in Feb. I cant really say for sure when exactly he had his stroke but the docs think it was about the 10th of February because he was born on the 17th and he already had had his stroke.....They are assuming the day I quit feeling him move was the day he had it. Dyan

As alot of you know Cayden started potty training at the end of last year. Well he is doing really well with that and has had very few accidents. He is now working on wearing no diapers at night. We tried it last night and I hate to admit it but I got peed on last night. So back to the diapers for a lil longer. He has a new bed to go with the new year as well. Pure Spongebob!!!! We are trying to get him out of our bed and into his own. He does good going to sleep as long as I am in the bed with him but he gets up through the night and I am a ping pong mommy right now. Last night I was so tired I fell asleep in his room and slept all night and so did he I think that is why I got peed on last night tonight I may try him on no diaper again but not sleep with him like normal and see if he will us the bathroom and not wet himself......If we can get him through the next few months on his own in his own bed it will be a new milestone hit this year!!!!!!

Cayden starts his new therapy this next month hopefully.....If we cant get the funds up or the insurance to pay we will have to post pone it until we can come up with the funds.....It is 65 dollars a session and we have to come up with that with 2 children. The new therapy is called Braincore Therapy.....His psychiatrist is really excited about him getting it and he is going to do everything to find a loop hole in the insurance so he can get it covered by his insurance and if not he said he will do anything to help get him this therapy.....I am hoping that he can because Cayden will be the youngest child to use this therapy for post stroke. Everyone please pray that he can get this new therapy so he can get off all his meds and be the boy I wanted to give his daddy. We love him but I feel like I cheated his father a healthy baby boy. Dyan

I love Cayden and I love Christmas but with him having ADHD it is very hard to have both. I think if it was just the holidays I could handle it but he has so many routine changes that it is really taking a tole on him. Him potty training and being at home and doing more shopping to get all the christmas gifts that we may not have gotten and the fact that he is home from school we have to take him with us. He is not sure how to handle all of the changes going on this year. His sister had a doctors apt today with their psychiatrist and we tried to keep him off ADHD drugs but the way he is out of control this year he put him on a very small dose to take the edge off his anxiety of the holidays. His father and I hated doing it but it was either that or we would be spending the holidays in the "looney bin" LOL. The only prob. is that his psychiatrist is in Nashville and he sees him over a t.v. and they are closed until tues. So the next 4 days are going to be VERY LONG. I will keep yall posted on how Christmas went especially if he has any presents left to open!!!!! Dyan

Thank you everyone for the advice and I wish I could give him Pop the Pig but I wrapped it with other gifts together but we have some small gifts that we are going to let him unwrap on monday because it is his fathers birthday so we always give him a gift on everyone elses birthday so he doesnt feel left out. His sister this year let him open all her gifts and I took pics of them together her looking at the gifts right after he opened them. Hopefully that will hold him over until Christmas Dyan

Kathy, Thats for sure but Im not sure who is going to be stronger me or Cayden.....LOL. The longer this goes on the more I get irritated.....He's even asking complete strangers for "pop the pig'!!!!! Dyan

I know this is supposed to be a happy time for everyone and everyone should love everyone else but this year Cayden is making it a living nightmare!!!!! I love my boy and this time of year but putting them together is not a very good idea right now. We are thinking of celebrating two different holidays in my house until Cayden gets older. He has NO patients and wants everything NOW!!!! He wants Pop the Pig which is a game and every day when we pick him up from school he asks if we have it and when we tell him we cant find it he throws a fit for half an hour!!!!! We did find it and he will get it for christmas but trying to keep him occupied on other things is a real chore right now. He is even acting up in school and getting into a lot of trouble. Thank the Lord that he is out of school after tomorrow for 2 weeks. Of course that means we have him for the two weeks but with his sister to help us out we should be able to get throw the week until christmas. To top it off he is potty training and that is another routine change. There is so much change in his life that he cant keep up and he is a ROYAL PAIN!!!! Some days I feel like pulling my hair out and lately havent wanted to get on here because I have been so upset with everything. I am hoping if need be he will be ok celebrating Chanakah. With me and the kids being Jewish my husband said it was ok but not sure what to do. He says tough love and I say he is the toughest to love.....LOL I know what he means and it really is hard because I so want to give in to him to get him to shut up but so far we are doing good at not letting him get away with his tantrums. Dyan

We have been trying to train Cayden for two yrs now off and on. He does good for a week then doesnt do well. Caydens teacher started 2 wks before Thanksgiving to put him in big boy underwear and the week before Thanksgiving she gave me his diapers because at school he stayed dry. This week his teacher told us to get rid of his diapers and keep him in his big boy underwear and tell him he is all out of diapers and that he needs to poo on the potty. He held it all day yesterday and he tried to put on a diaper but I took it off and hid the rest of his diapers and put a pair of underwear on him and finally at 4:30 pm he asked where he was supposed to poo and I told him to please use the potty and he went to bathroom and poohed on potty!!!! At bed he wanted to wear big boy underwear but with him sleeping with me and daddy.....that will be at a later date.....IN HIS OWN BED...... Dyan

Will, The toilet at school is different....it flushes on its own and believe me I am not going to invest in that one because he is afraid of it..lol The reason he is going at school is because all the other kids are potty trained and he sees them use the potty and they have bathroom breaks where here at the house he doesnt have potty breaks and he rather play than use the toilet plus at school he doesnt sit on the toilet and he will pee but he is afraid to do anything else because he is afraid of sitting on the toilet. ps glad your still in big boy underwear....I will let Cayden know I know another big boy who wears big boy underwear even at home......lol Dyan

Asha, Happy thanksgiving!!!!! There is alot I too am thankful for too and maybe I should try that journal as well because its hard to look at the good when your concetrating on the bad or what for me Cayden hasnt accomplished yet when I should concentrate on what he has and how far he has come since we were told he wouldnt live through the night. Thank you, Dyan

Today at school I was told that Cayden no longer needed diapers. He is going potty on the toilet and staying dry all day. Now all we need to do is work on the home front. He refuses to wear underwear at home and his teacher told me she talked to Cayden and he told her he was going to use the potty all the time. He wants to go in his diaper and no matter what we do he wont use the toilet at home. This milestone is coming along and I am so proud of him. He is also dressing himself more and more everyday!!!!! Milestone getting really close to being met!!!!!!! Dyan

Orlando, Lydia and Jaime are right. Your mom loves you and wants the best for you but it is between you and your body and God when you do each milestone. I know me and my husband push our son too and that is wrong we keep getting into trouble by his psychiatrist about not pushing him he will do it when he is ready.....we really push this potty training and his psych told us that we will do more damage and he will lose his ground if we continue so we too have to show patience. Yes the age difference is a big leap but not any different.....the more your mom pushes the more frustrated you get because your not on her time schedule. Dont listen to others when you are ready you will get it and that is what counts. You know what you need to do and you know what your body can handle so you know when you need to stop. Keep up the progress on YOUR time Dyan

Debbie, Thank you so much for the advice and the suggestions. I know Cayden wants nothing to do with his class. He plays by himself tho in the vacinity of the other kids. He does talk to the kids in his play but they dont have to talk back to him. That is all fine with me but the major problem I have with him that we cant seem to get him to understand is he picks on one of his class mates. Its not the type like making fun of him just he annoys him and he knows what buttons to push to make this kid mad. I know that is a 2 yr old problem but I know bullies do that too no matter how old that bully is. how do we get a 2 yr old to understand that bullying is wrong and it hurts peoples feeling? He doesnt act like he understands. Dyan

Ok everyone I know that most of you caregivers are caring for older people than my 4 yr old son but I have read lots of blogs and been into the caregiver room and all of you talk about their attitudes. Well I know that with brain damage in every age that it affects their personnality and you can see the change more with an older person than with one who had a stroke before they were born. But I have a question. How do you explain to people to get them to understand what your loved one went through and why they act the way they do so others understand. My sons teacher is trying to explain to a bunch of 4 and 5 yr olds why Cayden wont play with them or acts up the way he does when he gets angry. He isnt totally potty trained tho they are working on it and the rest are potty trained. They go home and try to tell their parents about their day but cant explain to their parents about how Cayden was acting and why he was acting that way. I want to get all these parents to understand that Cayden isnt being this way on purpose but he is developmentally delayed to where he is acting the way they used to when they were two yrs old. Please those of you who have this problem with older or younger stroke survivors please help. Not only that but how do you get these stroke survivors to understand that what they are doing isnt right. I know not many can help me with me having a 4 yr old and having to explain to a 2 yr old but hopefully one of you could possibly maybe not from experience but by advice or whatever help me with Cayden and getting him to understand that his attitude needs to change. I hope I explained what I need help with correctly to where everyone who reads this will understand what I am trying to say. thanks for any help I get. Dyan

Since the teacher started putting him in big boy underwear yesterday he has been dry. This is his second day in a row that he has been dry. He let me put him in his big boy underwear this morning and I am hoping that with time he will feel more confident about using the toilet. I have asked him since he got home from school if he wanted me to put him in a diaper and he said no. He has been telling everyone he is in big boy underwear and asking everyone if they wear big boy underwear!!!!

Debbie, They are large-xlarge also known as 5t-6t.....lol. No go tho. He is peeing in the potty at home now but still will not sit on toilet to use it to pooh. Dyan

Caydens teacher just told us that Cayden wore big boy underwear all day and stayed dry. We tried to put him in big boy underwear this morning but he threw a mortal fit so we had to put him back in a pullup. I told the teacher if she wanted to try him in big boy underwear she needed to put one on him. She did and he wore it all day and stayed dry. He said he wanted to wear one tomorrow too so hopefully when tomorrow comes. He hasnt had to go potty yet since we got him home so hopefully he will remember he is not in a diaper and goes where he needs to go. If he does then I will have 16 packages of diapers to get rid of. Milestone getting ready to reach!!!!! Dyan