Sunday, August 23, 2009

School starts for everyone!

Well I must say and am excited but nervous all in one. This summer has been a struggle for me trying to decided if I wanted to start homeschooling Austin this year. Eric wanted me to wait until 2nd or 3rd grade. But I was one the fence. That all changed after several weeks ago I drove myself to Mayo's ER thinking I was having a heart attack. To only find out it was probably only a panic attack. Then I realized I have been way over committed to all kinds of things and I was spending way too much time trying to figure out how to help Chase. Problem was I was spending all that time researching and hardly anytime actually doing.

We finally decided that Chase needs to be around kids his age with the help of his therapists trying to teach him to communicate and socialize. We did it! Week one was this past week and he came home everyday in a great mood and actually doing things that typical 2 year olds do. Like driving a car across the floor instead of just spinning the wheels or throwing it to hear it bounce. Then last night was awesome! We took the kids to Monkey Jungle to play (since our AC has ben out since Thursday ) while there Chase got a little overwhelmed but actually went into hysterics laughing with the popcorn game. It was incredible to see him laugh!!! Then he actually asked for more using a sign and reached for my hands to help him. HIS 1st attemp to communicate to mommy that he wants to play and have help. WOW!!!!

In the meantime I am trying to get the AC fixed tomorrow then I am taking a breather and try to get our life organized. All while praying that we are making the right decisions. That we are following the Lords words in every aspect of our lives.

Thursday, July 23, 2009

A day from you know where...

This has been one of those weeks that I wished my mother was still alive and here to help me out. Or at least that my sister lived in town. Today just tipped my bucket over. Layla our blonde dog got really sick over this week so I finally took her to the vet. After hundred of dollars in testing they are still not sure what is wrong with her. She is hooked up to IV getting a steroid and hydration. She is 9 years old and has been like a puppy for so long. Where do you draw the line? How far do you go in testing? She is like one of children yet she is a dog? Which brings me to our youngest Chase and all his testing.

Two weeks ago the Lord blessed us with an immediate opening into the CARD(Center for Autism Related Disorders clinic) which is normally a 9 month waiting or longer. I was not quite prepared since I only had a days notice thanks to my wonderful speech therapist. Once there we meet with Dr. Mae Barker who was absolutely amazing and accomadating. They proceeded to start the ADOS(Autism Diagnostic Observation Scale) on Chase. He was in such a great mood that day and actually doing things that we have not seen him do in the past. But after almost 2 hours of testing and meeting the genetics doctor who just happened to be in Jax from Gainesville for the day. They confirmed that Chase is Autistic. Yet they said they have never really met a child like Chase that is so happy that is of course unless you try to get him to do something functional. What does that mean? Still not sure except that we have started finally trying to communicate with him. He little brain is finally taking in some of this therapy we have been doing since October. We got the sign for eat the other day not prompted. Which sounds small but it is huge in his book.

We are now going to start using the picture system with him to try and get him to come to us and express his needs and wants. He is such a trooper considering that we have tried to maintain life with Austin and Liv and all there activities. We have cut back on a lot of things and I have unfortunately had to start saying no to certain activities. Chase is too much of a handful to go many places like the beach or a park that is not gated in compeletly. He is a runner and boy is he fast. And he does not understand that he could get hurt. It just does not compute in his little brain yet. So only time is going to work for him.

Thanks to all of you guys for being patient with us and not getting feelings hurt when we can not go somewhere or do something. It is just to hard with him right now and it causes me to have major stress attacks. I have already been in the ER once this month and even though it was not a bad experience there(the male nurse was a cutie, HeHe) I am trying to stay out of there.

Sunday, July 5, 2009

A week without daddy!

Well Eric left today for the week and of course spoiled Chase before he left. So I tried taking him to an Autism support group at Pump It Up which he usually loves but he was not having it today. Ever since the diary incident he has not been himself. This is when I wish we had family close by to help out. Or at least that my mother was still around to be there for me. I get so jealous sometimes that everyone around has all the help from family. I thank the Lord everyday that I have found such a close net of friends that I can call last minute for help.

The past few months I have kind of been in hide out because I am going through some denial and I realize that now. We are going to try hard to get back on track. Chase is such a trooper when I make him go with the flow.

Well he finally fell asleep which he has not been doing much of recently. Up at all hours again not sure why. Of course the few times he actually falls asleep for nap is when I have to wake him to get the other two kids somewhere. It is a never ending circle!

Saturday, July 4, 2009

Happy 4th of July

What a great holiday! Last night we took the kids to the local Suns game to watch fireworks at the end. Wow they love there fireworks!! Chase really liked them for the first 2-3 minutes then he became overwhelmed. He grabbed my head with death grip so we ran him to the car. Good trial run to see about us watching tonights from downtown. Guess I'll be taking Liva and Austin by myself.

It has been a crazy week and a half. Last Thursday I gave Chase what had been on of his safe foods out to eat. Within 30 minutes he started acting funny. I called a friend who looked it up and told me it now has diary in it. For several days he was just kind of spacey then real aggresive. Then this past week he finally broke out in hives all over his face and legs. He has been miserable with the itchys. Needless to say that cured my wanting to re-introduce him to diary and wheat products.

For several weeks I have been back and forth on should I try him on wheat or diary again. Personally I am so over this diet. Of course he has no clue what the difference is since he has always been diary free and gluten free for 2 months short of a year. But no one realizes how much work it is to make sure every little thing he touches or goes around does not have one of the off limit foods. Plus the expense is just insane. It is so hard for him to even be around other kids just in case they are snacking and he grabs soemthing from them. But after this episode I know that the Lord has given him to me to protect and that I can't complain anymore. So we will stick with our plan and move forward with caution.

Tuesday, June 9, 2009

What a great day!!

Today all three kids went to a Moms Day out until 3pm. I was not sure what to do with myself not having to take Chase to therapy or pick up kids at 2 different schools. Well I did find something to do. I went shopping!!! And to lunch with a good friend!!

Chase has not slept more than a few hours in teh past three days. Not napping either. Today he was really strange after I picked him up from Moms Day out so wondering if he got ahold of something he is not supposed to eat. Maybe I'll call teh preschool to ask in the morning.

Last week we went to the new neurologist down in Gainesville, FL. After waiting almost 3 hours to see him in the tiny little patient room with a not so patient toddler. He came in and said that Chase has "myoclonic epilepsy with a severe communication delays". At this moment he said that he did not appear to have Autism. He said several of his toddlers have these type of rare seizures at this age and he has found that they all are about a year and a half behind the average child. Which is about right because we are between a 6-9 month old level with communication still.

He also stated that recently a neuro up north has discovered that a small group of these kids have an abnormally low glucose level in the spinal cord which could drop with certain foods which then would cause the seizures to occur. So he said it was not unlikely that glutens could cause him to have the seizures. It is the first time a doctor did not make me feel crazy for saying that he goes into a seizure after having lets say saltine crackers. He wants to stay off anti-seizure meds for now and re-evaluate in 3 months. Apparently the seizure meds we were put on are the wrong type for his seziures and that is why he got worse. He does want us to run one more genetic test but it is 4K out of pocket so won't be doing that one for awhile as we are still paying off the last set of tests. I am just thankful that I followed my gut instinct and took him off.

The progress we have made in the past 3 weeks with our new in home speech therapist and our new occupational therapist have been huge. He still smiles at us but we are working on more eye contact when we are demanding him to do something. Whether it is asking for a snack which we are not there yet but close. He has played with a toy appropriately a few times this week. Which you would not think such a big deal but it is a huge milestone for him.

Thanks to all of you who have supported us through this year as it has been a tough one!

Friday, May 8, 2009

Another crazy week!

Finally everyone got better and back to school this week. Liv and Austin also started swim team. What was I thinking?? Poor Chase wants so bad to get into the pool with them. It is a torture for 30 minutes everyday for him. But the positive note is he is actually trying to tell me something with sounds and gets my attention by biting me. That is a huge step forward in teh fact that he knows he needs to get my attention to get what he wants. So know we just have to refocus the way he gets our attention.

We started a new in home speech therapist and I am going to love her. He really seemed to take to her this week. Wednesday we had our first seizure in over 10 weeks. So I was a little bummed. But it was only 3 small jerks seperated by hours. Much better than his clusters. He knew they were coming on because he came to me to hold him and was a different kind of whiny.

But all in all things just keep getting better. Or at least I can say that my praying for patience is being answered by him teaching me to develop my patience slowly.

Happy Mother's Day to all my mommy's out there!!!

Friday, May 1, 2009

Another day of all 3 kids being home.

Well it is official all 3 kids have strep. Liv also has double swimmers ear, and a UTI and top of it. Austin has a staph infection plus his big molars are coming in. And poor Chase he started a fever today and has just been walking in circles all day. Of course we started the antibiotics because coem Monday they all are going back to school.

Just pray that Chase does not get his usual yeast infection from the antibiotic. And that he does not regress like the last time he got sick. It sent us back a month worth of progression in his communication.

I'll probably have it next since they have all been sleeping with me. Yikes!!

Wednesday, April 29, 2009

Circus at the Doss house

Well, the poor therapist that comes to our home once a week is never going to want to have more than one child after being at my house. When she arrived today all my kids were home. As I calmly make Austin eggs over easy and toast as he crying that his mouth jaw line area hurts. Livia is asking for cereal as her ear has yellow puss running down her check(swimmers ear). Chase just went into shock that when she comes she means time to work.

Liv started a fever Saturday night along with vomitting, still has fever along with cough and swimmers ear. That means 3 days so far home from school this week. Austin was in so much pain that we rushed him to the dentist before lunch to only have him crawl up into a ball and not let the dentist go near him. Finally she got a peek and says his permanent molars are coming in. He spent the day on the couch crying in pain and sick to his tummy. Come 7 pm he actually vomitted and then went to sleep.

In the mean time I look over at Chase and he has pink eye which must be what Liv and Austin have as well but they keep wiping the gunk off before I could see it.

At least they are all finally sleeping as Eric is snoring on the couch and I am full of energy. Go figure! Maybe because I am looking forward to meeting this new pediatrician in town. Even though she is all the way down at the World Golf Village. Kids are waking up early tomorrow!!

Thursday, April 23, 2009

Behavior training today!

Today was an interesting day. I decided to attend a behavioral training class for autistic children. Now I have left Chase at church or his moms morning out program from time to time. But I decided to leave him at a close neighbors house. Her daughter is about the same age and I thought they could have some social time. She said he did awesome and played along side her. He even tried the sand box. The kicker is he ate 2 bananas for the first time since his senory processing disorder kicked in around 18 months old. That is it from now on he is eating over there.

What dawned on me after we got home today I tried to feed him and he went into a tantrum were he held his breathe. It is his chair. It is hard and straight up and the tray is much smaller than the high chair he ate in today. SO we are borrowing the high chair to see if that is his issue with feeding.

The food aversion therapy has not really been successful. And I know he needs to eat more than just white crunchy snacks or muffins all day. So hoping that between the high chair and what I am learning at the ABA training we might actually have some head way.

But of course things can't start looking to up. He started scratching his head again and I felt his lymph nodes are all swollen again like little ping pong balls are across the back of his head. Another call to infectious disease tomorrow. Yikes!

Wednesday, April 22, 2009

Chase had his 1st real BM today!!

Okay so this may sound gross to some of you but Chase had his first ever solid poop today. Which is great maybe his gut is starting to heal a bit. He fought with his developmental therapist today like never before but maybe that is because he is actually waking up from his fog.

We went to the pool today. I was so proud of Austin he just jumped right in as if he had no idea it was freezing cold. Which makes me more excited because he is starting the swim team this year!! Livia will start to as long as she can stay clean. Poor girl has had some major regression with all our Chase issues. She is back to potting in her pants from time to time. Yet she is such a great swimmer I hate to not put her on the team. Keep us in prayer because sign ups are on Sunday.

At the pool today Chase did not even try to get into the water. I was so proud of him for respecting it that way. But I wish I had a video because he decided out of excitement to chase himself in circles. Just like a dog chasing his tail. It was so stinkin cute!!

My goal this summer is to simplify with the kids. Chase has never been able to get into a good routine with his naps becasue of the others and carpooling and school, etc. So we are going to make life a lot less complicated this summer.

Sunday, April 19, 2009

Biomedical Treatment

Well we finally got into one of the biomedical doctors in town. She is an MD internist that believes in healing the body from the inside. After spending the first hour with her I knew this is what God had planned for us. At the end of our 3 1/2 hour session I felt so much better about Chase and what route we need to take for him.

She noted that he is a spiritually gifted autistic child one that is in tone with nature. After months of me telling doctors about how abnormal his poops are she got to see one and said "oh boy this little boys gut is in trouble." She has started us out on a very simple and not too expensive treatment plan to start with.

WOW day 2 he waved for the very first time in his 22 months of life. The feeling of excitement I had was just unbelievable. As I was telling one of the moms they said "Oh my child has been doing that since she turned one." I just thought you have no idea what a huge milestone this is for him.

Today was day 4 and he started out actually showing seperation issues from me. Normally I can walk away and he does not even understand that I am gone. But today he cried so hard that he throw up. Throw up bad but the fact that he actually got upset that I left was great. Later on we went to the beach and he fell in love with the ocean water. Running in circles flapping his arms like a bird. It wore him out and he crashed in the stroller. When he woke up he actually made a noise at me when I asked him if he was hungry. Normally I would get a blank stare or he would just walk away. He even tried to say "mama mmmm(which I think was more)."

Now I struggle with the fact that he needs me to spend more one on one time working with him on his new music and art therapies. Sometimes I just want to be selfish because I get tired of running him all over to appointments. Or I commit myself to something to take my mind and time off of him. But seeing what a difference this is making so far I know that he is my top priority.

Thanks so much for all the support everyone has given us. Somedays I don't know how we would do it without all of you!!

Thursday, March 26, 2009

Finally a place to put all our info

Well I was hoping and praying that I would not have to start a blog for us since time is already so limited in our household. But I just can not seem to keep everyone up to date on Chase's condition. Everyday is a big question mark with him right now. Yesterday his pediatrician finally said "He is not a bread and butter case child." I so innocently asked what she meant. Basically every week he has something new and it stomps all of us.

Over a week ago we thought he had the chicken pox but the spots are not going away so now we are on our way to yet another doctors appointment tomorrow to see the dermatologist. Last week it was the infectious disease doctors. Which he decided he is going to biopsy his lymph node when we are in having his adnoids taken out on April 6th.

Thank the lord though that after we took him off his anti-seizure med which he was still having seizures daily on. Almost 6 weeks now and no seizures. He is functioning at such a higher level then before. But still no communication hardly at all.

All of his genetic and metabolic tests came back negative!!!! His lactic accid and ketones are high which might explain why he won't eat much of anything since he has trouble digesting it.

We are still seeing OT twice a week, ST twice a week and an in home developmental therapist for an hour once a week.

Thanks for all your prayers and offers to help!! You know me and I hate asking for help but this year the Lord has taught me that I do need help and that it is okay to ask others to help.