Sunday, July 5, 2009

Update on Our Little Family...

Well tomorrow is the day we take Conner down to Davie to get his re-casts. We do not know what to expect with the cutting off of the casts that he is wearing right now. And saying that, I mean, we don't know how Conner will do. Will he cry, will he watch the Wiggles and just sit there...there is no way to know really until we get there and just do it!
Alot has happened this last week. Some not good, and some not so bad. First thing was when I took Conner into Therapy on Wednesday morning. I was greeted by the fact that Conner's insurance had cancelled him and we were no longer covered for Therapy. There was nothing for me to do there, so I was trying to get Conner to leave and he threw a fit...a full fit...where he threw himself on the floor and screamed. I was sad that he was that upset over having to leave...it showed me how much he really enjoyed therapy...how fun he thought it was!
After all morning on the phone with this person and that person, I found out that Nate makes to much money for Conner to get assistance any longer. Now for some reason, they just decided this. Nate has been at this job for over a year now and has not received a raise...so it makes no sense really. But we were cut off just the same.
So here we were...Conner has two casts on his legs and we have no insurance. We were thinking we were going to have to just get the casts removed and just hope and pray that we could get the serial castings redone later in time when we could get insurance once again. But then I got the call from Conner's one case worker, and she said that the way the Orthopedic place does the billing is that it is done in one lump sum, billed for the day the first casts were done. So we were covered for the WHOLE Serial Casting process!!!!
This was a BIG load off of Nate and I. So now we had to get some insurance for him. Nate's work insurance is OUT...it would be 300 a week for the insurance and that is about what Nate takes home (after Child Support, Student Loans and everything else is taken out)...so there is just no way.
But I got online and signed up for Florida's Kid Care. They do your application and then put you in the program that fits your needs. So we are in the waiting process to see where we fall.

Now so that is done...but that was not the only thing we had to deal with this week. One Thursday we noticed Conner limping and turning his right leg when he walked. So something is up with his casts but we have no idea what. He has not fell or hurt himself. There are no noticeable bruises and his toes and legs look fine. No swelling or turning of colors.
So I got his appointment moved from Thursday to Monday...and that is why we are going tomorrow to do the re-casts.

So we have had a full week. Alot of things to deal with...but they are dealt with and now we can just do what we can do. I am planning on taking a more active part of Conner's play time to make up for some of the therapy. I know I am in no way qualified to do it all the time...but during this pause in his therapy...I will have to do. I have some file folder games made up and am getting some books on Activities for Sensory Issues and will just be playing with more purpose for Conner. He wont even know I am trying to make up for him not having therapy!

So that is what is up with us...I will update on our appointment either tomorrow night or the next day!

Thursday, June 25, 2009

Conner's Serial Castings...





We went to get Conner's Serial Castings yesterday. We had to go a pretty far distance to get them done. It is about 2 hours away...
When we got there, we were alittle early. No big surprise if you know me. I have a thing for being early. I hate, hate, hate being late and get very annoyed at people that are always late. Shows a lack of respect to me. Respect for my time or whatever.
Anyhoo...back on track here...we got there about 1/2 hour early. So Conner got to play in the waiting room. It was a nice space and he enjoyed himself very much.
The nurse came to get us and we were placed in a nice room. They had a dvd player and tv on the wall and were playing "finding nemo"...so Conner was interested for awhile. It is not one of his favorite...just not into movies yet...so he quickly wanted the Wiggles!
The doctor came in and basicly said that we were going to do Serial Castings. We knew this and were surprised at how fast he was. But then he explained while he was making them...that really...there is not much that needs to be discussed or seen in Conner...if he needs medical assisstance with his toe walking...it is Serial Castings. So we understood then.
The actual procedure was very quick...or I at least thought so...Conner might not agree lol! The doctor reinforces the cast with a plate in the bottom. He put putty/clay stuff on the plate to give it support (like arch support) and to make it so he was not walking on a plate. Then he molded the plate with the putty stuff on it to Conner foot so it would be comfortable for him. He put that on the foot...then began the wrapping of the cast. When the wrapping was done...he places Conner's foot on a pedistale type thing and had it dry in the 90 degree angle. This was the time when Conner just could not take it...and he was crying. I was very surprised that this was the only time when he was overly upset! I was quite proud of how good he was doing! The doctor had to use two hands to hold his leg in the position...and even commented on how strong he was!
After his casts were done...the doctor fit his new boots on him and had him walk. And walk he did!!! I was surprised and soo happy to see him just walking around. Crying at first since he did not understand...but walking just the same!
Now we are home and I see him walking around and wonder why I was soo worried. He is acting as if he has always had them on! He slept through the night with just two wakings...and both of those times he woke up since the pillow fell off his bed...we do not believe they were wakings due to the cast at all. I had given him a shot of Tylenol before bed (per doctor instructions) and I think it helped him sleep and relax.
So overall...I would do it again in a heartbeat...he is doing great...but I do realise this is just day two lol! But for me...the worst part is over. I was really worried over getting them on. But I have a little trooper on my hands and he surprises me every day on what he can handle.
We will go in two weeks for the first cast change. Then we will have one to go. He will get a total of 3 casts and then the braces. The braces will be molded on the same day the last cast goes on...so they will be ready for him to wear out of the office when the last cast comes off!
So that is about it. He is such a little man and I am SOO extremely proud of him and I am honored to be able to be his mommy!!!

Friday, June 19, 2009

New Haircut...and his upcoming Serial Castings!




Well Conner is going to be getting Serial Castings next Wednesday...and to get him ready for them...he had to get all his cute babyish hair cut off! The Serial Castings are really just a cast on each leg...so no baths while they are on. We wont know how long they will be on until we visit the doctor on Wednesday and they see him and work up a plan of action for him.
If you are just reading this blog without knowing Conner...the reason he is getting the Serial Castings done is for his EXTREME toe walking. He is soo extreme that he does not use any of the pad of his foot anymore! And his poor little toes are showing the damage from that type of behavior. They are webbing out and deforming. And everyday...for most of the day lately...he just sits and messes with his feet and toes and cries. It is quite sad since we cannot do anything to make him stop walking on his toes ourselves. These last few weeks we have seen a change in him...we can tell his feet are physically making him hurt. It is very sad to see him sit and hold his feet and cry...but being that he does not understand when we try to explain things like this to him (most of the time)...he does not understand that the toe walking is what is making his poor feet hurt!
***Disclaimer***before anyone comments on how they knew so and so and they did not need something this extreme...that they came down off of their toes...or that our child will "get over it" and stop this behavior...please understand we have had MANY, MANY therapists and doctors tell us that for Conner...it is a learned behavior, sensory issues and his Autism causing this and he WILL NOT come down on his own...he needs Medical Intervention. I am just saying this because I have heard it all from well meaning parents and friends and even family. I know you mean well...but if you dont live with or take care of Conner...you just dont know the whole situation. Thank you!

Anyways...so we are going on Wednesday to get that done. We have to drive along ways away (2 hours from our home) to the office to get them done and the worst thing is we dont have a really dependable car...it is ok...and most likely get us there and back...but it is having issues. Plus...we have to go there so many times! Crazy! And it might be every week...but we wont know until the first appointment...we might get away with every other week...

The casts are taken off every week (or two weeks, every situation is different) and then they re-position the foot to stretch the tendon out further...and then a cast is put back on...
He will have to get this done 4 to 6 times! And then he will be fitted for Braces, which will stay on for alot longer of a period of time. Most likely 6 months or more.

He will be getting increased Physical Therapy during this time. And we are hoping that he will walk in the casts. He is allowed to do anything he did before, except water activites, and is encouraged to do so, since use and activity helps stretch the tendon! But knowing Conner...it is going to be a fight to get him to walk and not crawl. A band-aid will put this kid down....we put one on his arm and then he refused to use that arm until we finally took the silly thing off...and that was just so he would not scratch a bite anymore...he was not even really hurt! He is soo silly!

So this is our update. I am not looking forward to Wednesday...for all the issues we will have with getting the casts ON Conner...but I am wanting this done to help him. He is in pain and I want to help him.

I will update On Thurday with Pictures of whatever he gets on and how the appointment went and that way, you will know we survived lol!

Sunday, May 10, 2009

T-Shirt Graphic...


Today was a bad day for Conner. He had meltdown after meltdown. No talking or reasoning was working...not that it really ever does...but esp not today!
We put his weighted vest on him a couple times and after 15 minutes...it would help alittle bit.
So my Mother's Day sucked...and I realised today how much this Autism is really going to affect us. Not just the regular everyday things...but the special days that we look forward to. They are just not going to be the happy, special days that we think in our heads that they will be. When you think of Mother's Day...you think of your children and having a nice day, just enjoying each other. Well MY Mother's Day was full of headaches from the screaming...lots and lots of screaming. And I think it will be a very long time before we can go out on Mother's Day to eat or just get out the house and go somewhere nice.
But saying all of that...I love Conner and the person that he is and who he is becoming. He (for the most part) is a happy boy that does love us in his own little way. He did give me a "conner hug" today, where he puts his arm around my neck. And that made up for all the screaming that I endured today. That ONE hug did all of that. And I think it was soo special since he does NOT do it very often...so I felt special that just for today...he gave me his hug!!!

Conner's New Toy



Conner does not get new toys very often. Since he does not "play" with toys...but carries them around...buying toys seems silly to me. He has his favorites like his Jenga Blocks, Mega Blocks (the chunky ones are best to carry!), and a few cars that he likes the feel of...
But now he also has a new toy that he really likes. His Nana got it for him since he loves his Big vSmile system...and we wanted one that we could take places. We are hoping that if we are out and about and he needs something to get his mind off of things (a.k.a. meltdown time) that this might work!
As you can see from the pictures...he enjoys it very much! Thanks Nana!!!

Four Generations...


Here are the pictures from our Four Generation Picture Session. Nate was our "photographer" and he did the best he could lol! Taking group pictures with a toddler is...well...not fun! But we got these and they will have to do lol!

Friday, April 24, 2009

Update on Conner




Conner has been doing extremely well. His new therapists have been working with him and they really know how to get through to him.
He has just in the last month or so learned how to wave hello and goodbye, sign the word "more" and we are working on the Please, thank you, go, car, all done... He has began to follow simple directions such as "bring me your shoes" and "come here". He is walking to the car and coming inside our house without me carrying him!
So needless to say...we are very proud of him and think he is doing great. It seems like everyday he is learning something new or doing something else that we have never seen him do before. It is amazing and it warms my heart when he does something that most kids his age have been doing for years!

Monday, March 23, 2009

Recent Pictures of Conner


Here are some pictures I took today. He was actually enjoying the camera. I quess he just needed a break from it lol! Anyways, here are a few.


Sunday, March 22, 2009

It has been a long, long time...

Well as most of you know...it has been a long, long time since I have written to anyone or updated anyone on how things are. Alot of things have gone on...or for the most part, I quess I should say, have gone wrong in the last month or two, and for that...I have been out of touch with alot of people.
My friends at New Hope...I did not mean to cause any confusion on why we stopped coming. It really is not something that we ment to even do. It sort of just happened. Life got WAY hectic and stressful and we were just trying to get through it all...
We would like to come back to Church...but after so long, it is hard to step back into things, if that makes any sense whatsoever. But we would like to very much.
Conner has been doing well now that we got him into a better therapy situation. He now goes to Speech twice a week, Physical twice a week and Occupational once a week with a few times a month going twice a week (it is a new therapist and we are working on schedules). This therapy place has better therapists, more activities for them to work with and just a better attitude all around. They act as if they have a better handle on what needs to be done and we can see it in Conner! The last therapy place we were using...we just feel they were in a rut with Conner and not getting anything accomplished and it was a waste of time. In the short amount of time that Conner has been going to this new place...he is starting to pick up on some signs (more and please, but please is being confused with waving some times lol), has began to wave hello and goodbye, and has learned to high-5. Along with some other things also.
The whole school situation was a BAD, BAD scene and it made Conner very scared at first at his new therapy. But now he goes into therapy all by himself and does better without me there. He gets more done and has made progress that I can see at home. I do not know when I will try school again...if I even do. At 5 when it is time to make that choice...we will see how he is in his therapy. We may homeschool him and have therapy in addition. It will all depend on how Conner is doing at that time. I want him to have a way to let me know if something is not right. The situation at school where he was being held down and forced to do things...well that is not acceptable to me...and neither were the fingernail marks that his therapists left on him from that school incident...and so I will not send him to school until I know for sure that he can tell me if a situation like that ever happens to him again.
The school incident was a very bad experience for us. One that I hope no child ever has to go through. Conner was physically held down by a therapist to put bean bags in a bucket...and all the time he was being held down...her fingernails were piercing his arm (and those marks were there for weeks after, so they were deep!), he had a bloody nose and was not cared for after it started to bleed...which means it had blood ALL over his face (a 3 year old with a bloody nose...I think you can just imagine the mess, esp when it was not cared for), and he got an infection shortly afterward that the doctor said "could have" been when he reintruduced germs into his nose when he kept putting his finger up his nose that was bleeding...if that makes any sense....it is hard to explain. But the therapist would not stop therapy long enough to calm him or to take care of his nose. She also had a grip on his tummy trying to get him to stay put which made him wale like a baby. My parents (his grandparents) came to pick him up and could not even recognise his crys! They were of a baby and not of a 3 year old. He was terrified and they would not stop and do anything for him. And the worst thing of it all was that he would not say anything for days afterward. He was tramatized. He did not make one sound...no babbling or anything. We were soo scared that this incident had made him regress...and for a parent with an autistic child...that is sooo scarey.
So we have had alot of things going on and alot we had to deal with. I am sorry if people thought that we slighted them with no communication. But we had no internet and I was working the internet off of my phone...and lets just say that is not easy. Plus many things do not show up on my phone...which I found out today when I went to Facebook. I had alot of communication that I just did not have access to on my phone.
Well if this post sounds as if none of it makes any sense...I would not doubt it. The last few months have been hard on us all and it is just one big blur really. But I did try to get the major things updated so you all can understand alittle bit of our madness and to help you all understand where we have been...

Saturday, January 10, 2009

365 Days of Conner....

Here is the picture of the day. Nate actually took this one. And since he is NOT used to my new camera...we were lucky to get this one lol! At first he did not have the flash popped open and so the pictures were all blurry. But then he got it under control. And got this cute picture.
I had just gotten home from Walgreens and saw these Mickey Mouse and Friends Valentines. And since he loves small card things...I thought he might like these. And for $1.99...it was ok if he did not like them, KWIM? But he would not even let Daddy tear all of them apart....so I think he liked them!

Friday, January 9, 2009

365 Days of Conner....

Who needs toys when you have salad dressing!

Conner took this from me as I was putting it in our cart this morning at Walmart. He has not let it out of his sight since. I have tried a couple times to take it and he runs after me and snatches it back...and cries when I try to put it where he cant get it! I have no idea how I am going to make pasta salad now!!!

365 Days of Conner....


This was the picture from yesterday. I took it when we were getting ready to leave for the Vero Mall. We have not been out of the house to much the last couple of weeks (due to Conner's diaper issues!) and so this was soo nice to go out to the mall with Nate and Conner. And by the look on Conner's face...I think he enjoyed leaving the trailer park as well lol!

Wednesday, January 7, 2009

365 Days of Conner....

Here is today's picture...
My mom's boss gave her a dress up outfit for Conner...and we put the tie on him tonight...This is about as Dressed up as he is getting...at least tonight!

Tuesday, January 6, 2009

365 Days of Conner....

Here is today picture. Now let me explain alittle bit of why this is soo cute...
We have a game we play, where we come after him to tickle...and we yell for him to "protect the belly" and he will do this. Protecting his belly from the tickles. He LOVES, LOVES, LOVES this game and we play it every day!!!

Monday, January 5, 2009

365 Days of Conner....

Well here is today's picture. What is he doing, you might ask? Well he decided that he had to take each piece of Cinnamon toast off of the plate and put it NEXT to the plate...and the place them all ON the plate again! He did this a few times...like he was on a mission of some sort! Crazy Little Dude!