Saturday, September 27, 2008

Finally some real tests!

So we had the OT come out to observe Dominic. She said that although his play is quite functional (this is what she saw) he is constantly seeking sensory stimulation. The funny thing is in other environments he avoids it. She even pointed out how he comes down the stairs on his bum is a sensory thing....he always does this, very rarely walks down the stairs. She says he definetly has sensory issues and because of the speech delay as well she thinks we should go through with an assessment for Autism. I truly don't think that he has it, but I will go through the assessment. It doesn't really matter that much to me, if he is labeled with Autism he will get the help and if not atleast we have eliminated the option. The same day that the OT was here the audiologist from the clinic we went to called back and told me that he thinks he has found someone who will do a brain stem study on Dominic. This is what I wanted from the beginning. It will be done at London's children hospital. It is not booked yet, he had just called to get my permission to send the referal to the audiologist that would be able to do it.

I registered Dominic in a preschool program called alphabet soup. He will go on Wednesdays and Fridays from 9:15-11:30. This was half the price of the daycare they had chosen for him. They were going to set him up with an early intergration program. This basically means someone helps and observes him while he plays at the daycare and assesses him the whole time he is there. This is basically to prepare a child for kindergarten, and make sure they have all the necessary aids they need in school. I think this is a great idea and although Dominic will not be going to kindergarten I am sure the info would have helped me and it would have been nice to know there was someone who was actually understanding Dominic there. Unfortunatly I don't think this can happen at the preschool program we registered him for. We had to go this way though because it was half the price, the important thing right now is that he has time with other kids in order to help develop his speech and social skills. I figure we will see how he does and if this works out fine, continue to do it. If not maybe later when we may feel we can afford it we can put him in the other daycare.

Anyway it looks like we may get some answers soon even if they are just to eliminate options. Dominic goes for his sedated echo on October 8th as well. Please pray the runny nose and cough get better so that we can have this done. They have not really gotten a very good look at his heart since the surgery since he won't stay still.

Anyway thanks for checking in!


Tuesday, September 23, 2008

Why does it seem like it is so hard to just get the help I want?

Hopefully this week we will get it all sorted out. The test Dominic had done turned out not to be what I had thought and was just a hearing test. His hearing is fine...although I already knew that. The man said he would look in to doing a brain stem test, but he didn't sound very promising. He said they don't normally do this test this young unless the hearing test comes up with something. They were also concerned about sedation and his heart...they weren't sure where they would have to do the test. I think it is all very annoying. I want them just to do it, so that I can know if auditory processing is his issue. The OT is coming here tomorrow during school time to watch him in his own environment. She says that she thinks we should go through the autism assessment although it may seem like he does not have it....he could be high on the spectrum. I don't know what I want to do about this. I feel quite strongly that Dominic does not have autism (and it is not denial). I just don't feel that he really fits into the spectrum, I think it is more sensory or at least auditory processing problems. Autism is the popular thing now....although I know it is way too common, I just feel like they want to assume it first of all and don't look enough into other disorders. I just want to make sure I know what is the best way to teach him. Anyway hopefully the diet will help with this a little. I am starting to think he has stopped his throwing. Dominic was throwing obsessively. I mean throwing random things across the room at random times with no reason....all day long. I haven't been noticing this so much lately and I am wondering if this is the diet, he doesn't seem to be empty things constantly either. I don't know though because he still can't seem to play by himself, still puts things in his mouth all the time and other sensory behaviours. Maybe the diet is helping some though. I can't really say I have noticed any differences in his speech though.

We met with child care services to see what subsidy we qualified for and apparently we don't qualify for anything. It is very frusterating, we waited over a year on a list for them to tell us we don't qualify. So if we want Dominic in pre-school we are looking at 20 dollars for a morning. I would prefer he goes three mornings. I am just hoping that with driving the bus we can afford it. I am looking for other options, but I do really want him out with other kids socially and it is hard to take him to launch pads and stuff when I am schooling Jodi Lin at home. I also think he needs to be places without me. Sometimes I hate that we make more money now. The government has taken so much away and we are not approved for stuff we would have been before, plus Paul pays so much for gas to get to work. We end up having less money then before he had a good job. Oh wonder we have so many people living on low incomes.....there is not much of a reason to get educated and get a new job. I am sure one day we will notice more of an income but it is just so frusterating. I know preschool will be good for Dominic and I feel he needs it, so do the people who work with him, but because of our income we don't qualify for help. They have no idea how much money we actually have to spend. Sorry for all the venting....although isn't that what a blog is for.


Tuesday, September 16, 2008

Test tomorrow!

We have not been asked to go back for bloodwork yet so that is good. Dominic's levels must be better. Tomorrow he goes for the test in London where they are going to look more into his hearing and understanding. Apparently all this test is, is them asking him questions and having him point. This kinda bothers me because I know he has done well on this type of test before. I am happy he does well, but still concerned about his understanding and his ability to form words. I do feel he gets lost very easily in explanations and commands, I don't know maybe it is just his attention span. I just don't feel like he understands other things that most three year olds would understand. Well I guess we will see, if they see a concern they will test further and apparently they are really good at explaining the results to you that day so I can ask about anymore concerns if the test doesn't resolve my worries.

Dominic has made it to the top of the list for daycare subsidy. He was put on this list because of his speech delay so we just need to pick the preschool we would like him to go to and hope they have openings and that we can afford what we have to pay of it. The subsidy is a percentage based on income. I think it would be great for him to go a couple times a week and get the social time he needs and Jodi Lin and I can have some time together to do school.

Anyway so that is how things are going right now with Dominic. Heartwise he appears to be good although I don't believe his sats could have gone up much....he still looks just as off colour as he always has. I guess we will see at his echo on October 8th.

Thanks for checking in,


Friday, September 5, 2008

Hopefully at normal level!

Well the missed dose seemed to have done it. He actually missed the dose the next night as well, as no one had called me to tell me the results of the blood test and what to give him. I talk to them yesterday at 11:00am and they said his levels were in a therapeutic range so to continue giving him 3mg a day. So I started right then. Dominic's dose is now back to the morning which I prefer. We have to go back Monday for more blood work and hopefully the numbers are still in normal range.

Dominic also gets back in speech regularly next week. He will start going Thursday's at 3:30pm and we haven't scheduled the other day yet, but he will go twice a week.

Sedated Echo on October 8th (my birthday of course), he always has to hit the special days.

Anyway all else is good!

Thanks for checking in,


Tuesday, September 2, 2008

Darn INR levels!

So I don't know if it is because he was sick last week or because of the diet change but Dominic's blood thinner levels are a lot higher. They were at 1 the last time they checked so they increased his dose to 3mg. I guess ideal is about 2.5, well today he was 4.5. So we missed his dose tonight and bring him back for another blood draw tomorrow. Poor kid....he hates them! The doctor doesn't seem to think that the diet would effect his levels this much. I am bringing in the vitamins that he is on they can make sure there is nothing in them that would effect his levels. They told me to watch him carefully and make sure he does not hurt himself as the high levels mean his blood is quite thin.

Please pray this gets sorted out! Also a fellow heart mom and friend from facebook has offered to send me her INR machine. Thanks Chrissie! This will mean that we will potentially be able to test his levels at home with a finger poke. It is very similar to diabetics testing their blood glucose levels. Pray that this works out and we will be able to stop all the trips to Mac soon.

Thanks for checking in!