So the echo went well. I was still a little frusterated as the doctor kept talking about how Dominic was sick and snotty. He was not! Dominic has a noisy airway and they seem to conclude that this means he is sick and they wouldn't listen to me saying he is fine....this is normal. When the echo was done with I came back into the room and the doctor tells me as if I didn't know "He was fine....as soon as he was sedated the noisy breathing stopped" I really felt like saying "told you so". Anyway they said that his function looks great, no leaky valves or anything. She did say though that they probably wouldn't close the fenestration (the hole they left in the conduit) for another year or two. I was under the impression that it would only be at 6-12 months post op. I don't know why she was saying different, it is possible that she didn't really know. I found that they really didn't know much about single ventricle kids up on the sedation ward. They were very interested in Dominic though!
It looks like Dominic's brain stem test will be at the London Children's hospital in February. This is the test where they are checking to see if what Dominic is hearing is getting to his brain. I have now been introduced to another medical issue that causes speech problems and that is called Apraxia. It is where the person knows what they want to say but either the one part of the brain is damaged or not developed correctly and they have a hard time saying what they want to. The description sound very similar to Dominic and the speech therapists that work with him have said that it is a possiblity when I mentioned it but they can not diagnose it. I will be asking the pediatrician. This week we go to London for a consult with the ENT who will be doing the brian stem test, I may ask him about it aswell.
My family doctor did say that he would fill out the form for the disability tax benefit but he was not that promising and he said for walking and speech which would mean that it wouldn't even have been any problem until probably two when these things actually become issues. From what all the other heart moms with single ventricle babies are saying, Dominic should have been getting this since he was born. I am going to send the doctor a note and explain why we need it and what to write on the form. I really hope he gets it filled out soon. It would be nice to have it all done and some money to us before christmas.
Anyway things have been crazy busy around here. Dominic is getting his holter monitor on Friday at 2:30 so he will have to wear it for halloween, I don't know what he will think about this. I guess we will see! I changed the appointment because I didn't want him to miss any school.
Thank for checking in....I will keep you up to date on Dominic's upcoming appointments.
Jenaia
Saturday, October 25, 2008
Friday, October 10, 2008
A Stressful week of appointments!
Tuesday we had speech in the morning and the family doctor in the afternoon. Wednesday we had the scheduled sedated echo that didn't happen and Thursday speech again. Speech went fine both times, actually he did really well. On Tuesday he went without me and he was fine. I told him that I wasn't going to be coming in and he seemed well prepared for that.
The echo didn't happen because Dominic was as fussy as possible and coughing like crazy with a runny nose. He does seem to have a bit of a cold that was not bad until that morning. He also regularly coughs at night and a lot in the morning and needs a drink the instant he wakes up. He was not allowed to have a drink because of the sedation so his cough was bad. They listen to his chest and said there was no way they felt safe sedating them. I would not want him sedated if it wasn't safe, but even the nurse practitioner agreed that the way he sounded was the way he sounded in July and he was not sick then. He has a very noisy upper airway. Since they all saw that this is his norm they decided the echo would not be done in the echo labs at the clinic and want to do it upstairs. So they send up for a "Pre-Op" appointment instead to prepare us for a stronger sedation with an anethetist present. I don't like the Pre-OP word. Anyway this new echo appointment is October 20th. They also want Dominic to wear a holter monitor for 24 hours. I don't actually know much about these or why they are doing it on Dominic. Maybe you other heart moms can help me out here? Anyway so we go to get that on the 23rd and bring it back on the 24th. So it looks like 3 trips to Hamilton and back that week plus speech twice again.
This leads me to the appointment we had with the family doctor on Tuesday. I had brought in the forms for the disability tax benefit for Dominic hoping he would fill them out and we would get some back pay an everything. He basically said to me that just because he has a speech delay does not meen he is disabled....actually this is exactly what he said. He added...."Lots of kids have speech delays". I was quiet annoyed because Dominic's is not typical and not going to go away anytime too soon. Not only that but it is not just the speech delay. If we can have anywhere from 2-5 appointments in a week, how am I suppose to hold down a full time job, let alone a part time one. As far as I am concerned if you can't just go to work because of your child then you should be qualified. He told me that he can't lie on the form or he will lose his liscence. This bothered me too, because I am an honest person and he should know that. I was not asking him to lie. Anyway I did end up getting him to say that maybe he will be okay to get it if they fill it out saying he is significantly restricted in speech and walking. Basically they need to either be Markedly restricted in one area or significantly in 2 areas. He said we could use walking as well because Dominic does not have the energy to walk any sort of distance. I don't really care how they fill it out, I just really think we should be getting it and it frusterated me after the week I had and the week I will have in two weeks, that he would try to convince me we won't qualify.
Anyway I am feeling a huge reminder of the Dominic's heart defects and feeling a little stressed about it in the pit of my tummy. I don't know if it is worry with these tests coming up or worry that I can't afford all of this. 3 trips to Mac is expensive. I can hardly afford to stay home. I really hope we can get the benefit.
Wow blogs are great for venting!
Thanks for reading!
Jenaia
The echo didn't happen because Dominic was as fussy as possible and coughing like crazy with a runny nose. He does seem to have a bit of a cold that was not bad until that morning. He also regularly coughs at night and a lot in the morning and needs a drink the instant he wakes up. He was not allowed to have a drink because of the sedation so his cough was bad. They listen to his chest and said there was no way they felt safe sedating them. I would not want him sedated if it wasn't safe, but even the nurse practitioner agreed that the way he sounded was the way he sounded in July and he was not sick then. He has a very noisy upper airway. Since they all saw that this is his norm they decided the echo would not be done in the echo labs at the clinic and want to do it upstairs. So they send up for a "Pre-Op" appointment instead to prepare us for a stronger sedation with an anethetist present. I don't like the Pre-OP word. Anyway this new echo appointment is October 20th. They also want Dominic to wear a holter monitor for 24 hours. I don't actually know much about these or why they are doing it on Dominic. Maybe you other heart moms can help me out here? Anyway so we go to get that on the 23rd and bring it back on the 24th. So it looks like 3 trips to Hamilton and back that week plus speech twice again.
This leads me to the appointment we had with the family doctor on Tuesday. I had brought in the forms for the disability tax benefit for Dominic hoping he would fill them out and we would get some back pay an everything. He basically said to me that just because he has a speech delay does not meen he is disabled....actually this is exactly what he said. He added...."Lots of kids have speech delays". I was quiet annoyed because Dominic's is not typical and not going to go away anytime too soon. Not only that but it is not just the speech delay. If we can have anywhere from 2-5 appointments in a week, how am I suppose to hold down a full time job, let alone a part time one. As far as I am concerned if you can't just go to work because of your child then you should be qualified. He told me that he can't lie on the form or he will lose his liscence. This bothered me too, because I am an honest person and he should know that. I was not asking him to lie. Anyway I did end up getting him to say that maybe he will be okay to get it if they fill it out saying he is significantly restricted in speech and walking. Basically they need to either be Markedly restricted in one area or significantly in 2 areas. He said we could use walking as well because Dominic does not have the energy to walk any sort of distance. I don't really care how they fill it out, I just really think we should be getting it and it frusterated me after the week I had and the week I will have in two weeks, that he would try to convince me we won't qualify.
Anyway I am feeling a huge reminder of the Dominic's heart defects and feeling a little stressed about it in the pit of my tummy. I don't know if it is worry with these tests coming up or worry that I can't afford all of this. 3 trips to Mac is expensive. I can hardly afford to stay home. I really hope we can get the benefit.
Wow blogs are great for venting!
Thanks for reading!
Jenaia
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!
Jenaia
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!
Jenaia
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.
Jenaia
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.
Jenaia
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,
Jenaia
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,
Jenaia
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,
Jenaia
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,
Jenaia
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 tomorrow....so 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!
Jenaia
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!
Jenaia
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