Dominic and I have had a busy few days. Last Friday Dominic had an appointment at Sick Kids for an all day developmental assessment with Psychology there. This will find any learning disabilities, his IQ score and anything that may be making learning difficult for him. I am not sure they will find anything as most of his problems do seem to be connected with the Apraxia. He is slowly learning to read, but having a hard time writting down stories and sentences as he writes as he speaks, and no one can understand it. He also gets very mixed up with the numbers. He still gets the order mixed up a bit and can not read all numbers or write them down properly. We will see if this shows up as anything in this testing. An example of this is Dominic can mark 9:15 on a clock with the hands, but when asked to write down the time by looking at the clock, he can't do it. But he could tell you it is 9:15, he just can't write it down.
We do have some great news that will hopefully be able to help him at school. Dominic is getting an iPad provided free of charge. We applied to be involved in a study for children with Apraxia. This study is to see if the use of iPads can be helpful. We have to fill out a survey before he starts using the iPad and then another 6 months later. As long as we do our part the iPad is ours to keep at the end. I did not have a lot of confidence we would get picked as any child in the States or Canada diagnosed with Apraxia could apply and they only picked 40 kids. So we are very excited that Dominic was chosen. A lot of people were praying about it and God answered that prayer along with so many others in Dominic's life.
Today Dominic and I went to see Cardiology at Mac. Dr. Mondal says everything looks great. Dominic's oxyen sats are 93, not great but apparently normal for a Fontan kid. The Dr. did continue though by reminding me of all the things that he is at risk for going wrong and that likely will eventually go wrong. He said to watch for pressure changes which might show up as swelling in his face and legs. He said that his valve may start to leak more and if so may be able to be fixed. He said as he gets older sports will be harder and not to put him in anything too competitive, because he likely won't be able to continue in them. Right now Dominic plays soccer in the summer and is now dancing the rest of the year. Neither are done competitively, and so far he doesn't mind. He said he may get blood clots and for now aspirin is good, but as he gets older that he may have to go back to a stronger blood thinner. The doctor continued, but I don't remember a lot of what he said as he can be very hard to understand because of a strong accent. Basically I got that I need to be aware and if there are any changes in Dominic, get him seen. Well I already knew that!
These yearly appointments can be so draining even when they go well. It is just such a reminder or the reality of Dominic's heart. Most days you would look at him and have no idea there is anything wrong. On days like today, I see the blue in his lips and hear his heavy breathing and am reminded again of all we still have ahead of us. His future is so unpredictable, even more now then before the Fontan. Atleast before we knew what surgery was to come next, although we didn't always know when or if he would make it there. Now we just know that he is doing well, but things could change at any point. It could be tomorrow, could be 5 years from now or 20. We need to be thankful for everyday we have with him, just as we should we everyone we love. These children make us so much more aware of this.
Please keep Dominic in your prayers that his heart will continue to stay strong and that he will be able to keep up at school and get through the challenges he has there. He is such an amazing strong boy. His character quality that was chosen for him last year at his SK grad was Perseverance. He tries so hard and never gives up no matter how difficult things are for him at school. We are so proud of him!
Thanks for reading and praying,
Jenaia
Monday, December 12, 2011
Monday, November 22, 2010
Wow...I am terrible at keeping a blog. I am sure no one will check it to see the update anyway.
So lots has happened since the last time I updated. Dominic had his fenestration closure in July of 2009 and he has been doing really well since. His oxygen saturations jumped up to 96 after the procedure. In September of 2009 I found out I was pregnant with our third child. After 2 and a half years God decided now was the time. Now that Dominic was stable, no more coumadin (actually he was on no meds at all after his fenestration closure), no more blood work and in school full time. So in May of this year Dominic got to meet his new little brother Josiah, who is such a happy little addition to this family. God figured we had enough trouble with Dominic so he gave us one of the easiest babies ever.
Dominic is now in SK and doing really well in school. He went to see the cardiologist in September and was put on baby aspirin as they saw some clotting. His oxygen saturations are also going down again and would not go any higher then 92, but apparently there is no reason to worry yet and he does not go back again until next year. We just had him at a pediatrician in Hamilton at Chedoke to do a development assessment on him, and mostly look into his speech impairment. I fought to get this appointment as Dominic's speech has been his biggest problem next to his heart for a long time. He has been followed by speech therapy for more then 3 years and is still difficult for most people to understand and even sometimes Paul, Jodi Lin and I have no idea what he is saying. So the pediatrician looked at everything and actually listened to me and Dominic was diagnosed with Apraxia of Speech with additional sensory issues. So far this diagnosis does not do much for us but to explain what the problem is, but kids with Apraxia often have other issues with learning, particularly handwritting (motor planning). So we will wait and see how things continue. He is doing wonderful in school right now and is really enjoying it, there is no need for extra help. Things may become more difficult as he gets older though.
Some great news! Dominic and our whole family got to spend a week in Florida at Give Kids the World for Dominic's wish trip. A limo picked us up from our house at 9:30am on November 6th and we returned home on the 13th. We had lots of fun and were completly spoiled. Dominic was over stimulated and over tired so we did see some not so nice behaviours while there and after getting home, but things are getting back to normal already. While there Dominic got to do Jedi training, which was really neat. He got to fight Darth Vadar with a play light saber, it was really cool and we got some nice pictures. At Island of Adventure we had breakfast with Spiderman and Dominic loved that. His wish was to meet Spiderman and we got to meet him along with many other superheroes. We had our family picture taken with all the superheroes at Island of adventure. Josiah was a superbaby for the vacation (as usual) he loved all the people at the park and of course got lots of attention. Jodi Lin loved all the rides and meeting the different characters including princesses and fairies. We all had a wonderful time, but our happy to be back home into the normal routine.
I will try to update more often, but I am promising nothing. Thanks for checking in if you did!
Jenaia
Dominic is now in SK and doing really well in school. He went to see the cardiologist in September and was put on baby aspirin as they saw some clotting. His oxygen saturations are also going down again and would not go any higher then 92, but apparently there is no reason to worry yet and he does not go back again until next year. We just had him at a pediatrician in Hamilton at Chedoke to do a development assessment on him, and mostly look into his speech impairment. I fought to get this appointment as Dominic's speech has been his biggest problem next to his heart for a long time. He has been followed by speech therapy for more then 3 years and is still difficult for most people to understand and even sometimes Paul, Jodi Lin and I have no idea what he is saying. So the pediatrician looked at everything and actually listened to me and Dominic was diagnosed with Apraxia of Speech with additional sensory issues. So far this diagnosis does not do much for us but to explain what the problem is, but kids with Apraxia often have other issues with learning, particularly handwritting (motor planning). So we will wait and see how things continue. He is doing wonderful in school right now and is really enjoying it, there is no need for extra help. Things may become more difficult as he gets older though.
Some great news! Dominic and our whole family got to spend a week in Florida at Give Kids the World for Dominic's wish trip. A limo picked us up from our house at 9:30am on November 6th and we returned home on the 13th. We had lots of fun and were completly spoiled. Dominic was over stimulated and over tired so we did see some not so nice behaviours while there and after getting home, but things are getting back to normal already. While there Dominic got to do Jedi training, which was really neat. He got to fight Darth Vadar with a play light saber, it was really cool and we got some nice pictures. At Island of Adventure we had breakfast with Spiderman and Dominic loved that. His wish was to meet Spiderman and we got to meet him along with many other superheroes. We had our family picture taken with all the superheroes at Island of adventure. Josiah was a superbaby for the vacation (as usual) he loved all the people at the park and of course got lots of attention. Jodi Lin loved all the rides and meeting the different characters including princesses and fairies. We all had a wonderful time, but our happy to be back home into the normal routine.
I will try to update more often, but I am promising nothing. Thanks for checking in if you did!
Jenaia
Monday, March 23, 2009
The Cath is Booked!
As for my monthly update:
Dominic's Cardiology appointment went alright I guess. His oxygen sats would barely stay at 80%, they were 81% before he went in for the Fontan. It sucks that they have not gone up. His blue spells have not lessened either in fact sometimes I feel his lips and nailbeds go blue much more often. The cardiologist didn't act too concerned about his sats. He did say though that he didn't think they would even consider closing the fenestration until after next appointment in 6 months (August). He said we would talk about it then but that if they closed it when his sats were low that may cause a problem with his pressures but that they don't want to wait too long either because his sats are so low. He was a little concerned about Dominic's breathing and had advised that I try asthma puffers again....I have not done so yet. I really don't like the way they affect his behaviour. I don't even no how long they are good for....we have not used them in awhile. He does still cough at night and is a very noisy breather but he always recovers fine.
Anyway so I left cardiology assuming that the fenestration would not be closed for awhile and then last week we got paperwork from Sick Kids. His cath is booked for July 15th. I called Sick Kids to confirm whether this was diagnostic or the fenestration closure. They said it was for the fenestration. I then called Mac to ask if this was some sort of mistake because they had told me it would be awhile. Dr. Mondal called me back today and said that he had consulted with Sick kids and that they would be doing the cath and attempting to close the fenestration....they would balloon it first and see how his sats and pressure changed. Something like that....anyways! Dr. Mondal has a strong accent so it is hard to understand what he meant. Anyway basically they will see if the fenestration closure is a positive thing for Dominic and if it is that is what they will do...if not they will leave it for another time. This kinda sucks because it could potentially mean another cath procedure down the road.
For those who do not understand what I mean by "Cath", I will attempt to explain. Dominic will go in for a pre-cath appointment 2 days before hand....much like a pre-op it will require a lot of time at the hospital and a lot of tests. He needs to be healthy for the procedure. The "Cath" is done in the OR and Dominic is put to sleep. It is basically a mini surgery. I have a hard time looking at it like a surgery because it is so much less then open heart. They use catheters to get to his heart and normally go in from his neck and groin areas....sometimes 3 or 4 different catheters will go in. They use these to repair and messure the pressures in his heart. It will hopefully be only a day in the hospital but if we are second case it may be overnight or if there is any complications. When Dominic had his first Cath we ended up in the hospital for 4 days because of a bad blood clot in his leg. Anyway so it is a stressful couple of days and prayers would be much appreciated. We noticed a lot of wierd behaviours from Dominic after his pre-fontan cath as I think he was more sensitive to a lot of things....more so then after the actual fontan surgery. Hopefully this one will be different. Please pray too that they will be able to close the fenestration and that his heart will react well to the change. ( the fenestration is a hole that they left in his heart during the fontan surgery....this was left in order to avoid a huge pressure change in his heart because of the rerouting.)
On another note Dominic's speech is coming along. He still has a long way to go, but he is attempting to say so much more. They are actually switching his speech from twice a week to only once a month for awhile. I find this a little scary as I am so used to him going all the time. I asked about it and basically this is an alternate to going off block for three months....which means he wouldn't get seen at all for three months. So they will keep on checking in on him. I hope that they get him back in for some regular therapy though before he starts school. The speech therapist has also told me that I need to continue doing signs with him as she is concerned that his teacher will not understand him. We have dropped many of the signs and we understand a lot of what he says. It is hard to go back to the signs and I am not sure whether this is the best thing to do or not. I want his teacher to understand him but I feel if she would have to learn the signs anyway.....why can't she just learn to understand his way of communicating with just a few signs like we do? Dominic is continuing learning counting, letter sounds and names and how to write. He now prints his name all by himself and his printing it quiet neatly. A few weeks ago he also wrote Wii on a piece of paper and was quite proud of himself as I was of him too. He pointed it out to me....."Look Mom Wii" He is just a little bit obsessed with the Wii video games. Anyway academically he is doing well and I think he will be ready for school in September.
Thanks for checking in and for all your prayers!
Jenaia
Dominic's Cardiology appointment went alright I guess. His oxygen sats would barely stay at 80%, they were 81% before he went in for the Fontan. It sucks that they have not gone up. His blue spells have not lessened either in fact sometimes I feel his lips and nailbeds go blue much more often. The cardiologist didn't act too concerned about his sats. He did say though that he didn't think they would even consider closing the fenestration until after next appointment in 6 months (August). He said we would talk about it then but that if they closed it when his sats were low that may cause a problem with his pressures but that they don't want to wait too long either because his sats are so low. He was a little concerned about Dominic's breathing and had advised that I try asthma puffers again....I have not done so yet. I really don't like the way they affect his behaviour. I don't even no how long they are good for....we have not used them in awhile. He does still cough at night and is a very noisy breather but he always recovers fine.
Anyway so I left cardiology assuming that the fenestration would not be closed for awhile and then last week we got paperwork from Sick Kids. His cath is booked for July 15th. I called Sick Kids to confirm whether this was diagnostic or the fenestration closure. They said it was for the fenestration. I then called Mac to ask if this was some sort of mistake because they had told me it would be awhile. Dr. Mondal called me back today and said that he had consulted with Sick kids and that they would be doing the cath and attempting to close the fenestration....they would balloon it first and see how his sats and pressure changed. Something like that....anyways! Dr. Mondal has a strong accent so it is hard to understand what he meant. Anyway basically they will see if the fenestration closure is a positive thing for Dominic and if it is that is what they will do...if not they will leave it for another time. This kinda sucks because it could potentially mean another cath procedure down the road.
For those who do not understand what I mean by "Cath", I will attempt to explain. Dominic will go in for a pre-cath appointment 2 days before hand....much like a pre-op it will require a lot of time at the hospital and a lot of tests. He needs to be healthy for the procedure. The "Cath" is done in the OR and Dominic is put to sleep. It is basically a mini surgery. I have a hard time looking at it like a surgery because it is so much less then open heart. They use catheters to get to his heart and normally go in from his neck and groin areas....sometimes 3 or 4 different catheters will go in. They use these to repair and messure the pressures in his heart. It will hopefully be only a day in the hospital but if we are second case it may be overnight or if there is any complications. When Dominic had his first Cath we ended up in the hospital for 4 days because of a bad blood clot in his leg. Anyway so it is a stressful couple of days and prayers would be much appreciated. We noticed a lot of wierd behaviours from Dominic after his pre-fontan cath as I think he was more sensitive to a lot of things....more so then after the actual fontan surgery. Hopefully this one will be different. Please pray too that they will be able to close the fenestration and that his heart will react well to the change. ( the fenestration is a hole that they left in his heart during the fontan surgery....this was left in order to avoid a huge pressure change in his heart because of the rerouting.)
On another note Dominic's speech is coming along. He still has a long way to go, but he is attempting to say so much more. They are actually switching his speech from twice a week to only once a month for awhile. I find this a little scary as I am so used to him going all the time. I asked about it and basically this is an alternate to going off block for three months....which means he wouldn't get seen at all for three months. So they will keep on checking in on him. I hope that they get him back in for some regular therapy though before he starts school. The speech therapist has also told me that I need to continue doing signs with him as she is concerned that his teacher will not understand him. We have dropped many of the signs and we understand a lot of what he says. It is hard to go back to the signs and I am not sure whether this is the best thing to do or not. I want his teacher to understand him but I feel if she would have to learn the signs anyway.....why can't she just learn to understand his way of communicating with just a few signs like we do? Dominic is continuing learning counting, letter sounds and names and how to write. He now prints his name all by himself and his printing it quiet neatly. A few weeks ago he also wrote Wii on a piece of paper and was quite proud of himself as I was of him too. He pointed it out to me....."Look Mom Wii" He is just a little bit obsessed with the Wii video games. Anyway academically he is doing well and I think he will be ready for school in September.
Thanks for checking in and for all your prayers!
Jenaia
Sunday, February 1, 2009
Wow....it has been a long time!
I really should start trying to update regularly. Anyway Dominic sedated ABR came back normal....so it looks like his speech problems having nothing to do with his hearing. Now we are looking into Apraxia and continuing with speech twice a week. He is actually doing really well and I am confident that if his teacher listens to him at school she will get to understand him. Although sometimes it does seem impossible to understand him, other times I laugh at the fact that I actually just understood what he said.
Dominic has his cardiology appointment on Tuesday, so pray all looks good. Hopefully we will be able to make it as right now the van is at the shop and the flu bug is going around the house. Dominic is done with it, but if Jodi Lin is home from school or I am sick we obviously won't be able to take him. He will likely need some blood work when we go in too, since his numbers seem to drastically change when he is sick.
I was just putting Dominic to bed and as I thanked God for the doctor's who fixed his heart....he started asking questions. He pointed out his scar and said "here?" I told him yes that is where the doctor's fixed your heart. They had to fix it for you to come home with Mommy and Daddy I told him. He said "no Jodi Lin fix heart" Or something along those lines.....meaning that Jodi Lin heart did not need to be fixed. I told him no just him, he had a special heart. He then asked why? I told him God gave it to him. I don't know if that is the right answer or not. I am not sure, I don't think God necessarily purposely makes these hearts develop wrong...or does he? No one else could do it. Is it just our genetics....but God created those. I found myself quiet confused as well. When Dominic asked why Jesus gave him a special heart that needed to be fixed....he seemed as though tears were starting in his eyes. I told him I did not know. What do you say????? Dominic continued to ask questions about the hospital and his heart, but I couldn't understand what he was asking. He got quite upset and started crying. This also made me sad because he tries so hard. I asked him if it was hard to talk. He said "NO YOU!" I said "I don't understand you?" ...."Yeah!" he said. He doesn't even realize that the words sound nothing like they should or he is just so used to us understanding anyway.
So anyway I have a very bright child on my hands who can't speak like he should be able to. He can now write his name with a little leading....he can't remember the order. He knows his numbers and letters by sight and is starting to write them. He can count to 10 and just loves working in work books. He is so ready for JK....except his speech. I really hope his teacher will just get him. Anyway if you are reading this thinking "I thought she was homeschooling?" you will have to look at the other blog....I will update that too. Anyway that is it for now....if you have any answers or insight into Dominic's tough questions....let me know!
Thank you
Jenaia
Dominic has his cardiology appointment on Tuesday, so pray all looks good. Hopefully we will be able to make it as right now the van is at the shop and the flu bug is going around the house. Dominic is done with it, but if Jodi Lin is home from school or I am sick we obviously won't be able to take him. He will likely need some blood work when we go in too, since his numbers seem to drastically change when he is sick.
I was just putting Dominic to bed and as I thanked God for the doctor's who fixed his heart....he started asking questions. He pointed out his scar and said "here?" I told him yes that is where the doctor's fixed your heart. They had to fix it for you to come home with Mommy and Daddy I told him. He said "no Jodi Lin fix heart" Or something along those lines.....meaning that Jodi Lin heart did not need to be fixed. I told him no just him, he had a special heart. He then asked why? I told him God gave it to him. I don't know if that is the right answer or not. I am not sure, I don't think God necessarily purposely makes these hearts develop wrong...or does he? No one else could do it. Is it just our genetics....but God created those. I found myself quiet confused as well. When Dominic asked why Jesus gave him a special heart that needed to be fixed....he seemed as though tears were starting in his eyes. I told him I did not know. What do you say????? Dominic continued to ask questions about the hospital and his heart, but I couldn't understand what he was asking. He got quite upset and started crying. This also made me sad because he tries so hard. I asked him if it was hard to talk. He said "NO YOU!" I said "I don't understand you?" ...."Yeah!" he said. He doesn't even realize that the words sound nothing like they should or he is just so used to us understanding anyway.
So anyway I have a very bright child on my hands who can't speak like he should be able to. He can now write his name with a little leading....he can't remember the order. He knows his numbers and letters by sight and is starting to write them. He can count to 10 and just loves working in work books. He is so ready for JK....except his speech. I really hope his teacher will just get him. Anyway if you are reading this thinking "I thought she was homeschooling?" you will have to look at the other blog....I will update that too. Anyway that is it for now....if you have any answers or insight into Dominic's tough questions....let me know!
Thank you
Jenaia
Thursday, November 20, 2008
Just thought I should update!
Not much to say, we have appointments we are waiting for and things seem to have been put on hold a little till the new year. Now we have to concentrate on Christmas. We have no results from the holter moniter yet, I am assuming that soon we will get a call from Cardiology with a follow-up appointment. Dominic's sedated ABR (I think that stands for Auditory Brain Response....or something like that) is going to be on January 7th. He should be seeing the pediatrician sometime in January as well where we will talk about a possible diagnosis of Apraxia. I still have not heard from the family doctor regarding the tax benefit form. This is very annoying. I am going to call and check again! So much for wanting the money for christmas. Anyway Dominic is doing well and trying new words and loving pre-school. He is getting to be such a big boy, I can't believe he starts JK next september or that it has been 5 months since the Fontan. Wow! Time goes so fast.
Thanks for checking in!
Jenaia
Thanks for checking in!
Jenaia
Saturday, October 25, 2008
The Echo is behind us....Holter monitor this Friday!
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
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
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
Sunday, August 31, 2008
I guess I am not much of a blogger....I will try harder!
Sorry for the delay in updates! I think most people who are checking have other ways of staying updated on Dominic anyway. Dominic is doing great, besides the frequent blood draws still for his INR levels (because of blood thinners). He has even potty trained since we got home...infact still in that 6 week recovery period. we had to lift him by his legs to put him on the toilet (lol). He has done great though and is even trained through the night despite the fact that he takes water to bed. He does still have the odd accident as a result of waiting to long but only during the day. He is yet to wet the bed (knock on wood).
We have all been sick off and on for the last week, but we seem to all be getting better. I honestly think Dominic had it the best out of all 4 of us. How does that work? Luckily he takes after his sister and has one heck of an immune system despite his half a heart.
So Tuesday we start homeschooling as well as our new diet. I have decided to go Gluten free and dairy free and bring Dominic along with me. I am going to be more cautious of what Jodi Lin is eating as well but I don't think I will be quite as strict with her. I don't believe she has an issue so much with dairy and gluten as with additives and preservatives. I think that in the long run this will be healthy for all of us. Pray for us though as this is a lot to take on all at once....along with the homeschooling.
I can't believe I am actually going to do it. Ever since Jodi Lin was old enough for JK, I always felt that I needed the break. Now as grade 1 draws near I know I don't want her gone all day everyday. I want to be the one who leads her and teaches her. Jodi Lin needs some more time with me. Dominic has taken so much of my attention in the last few years that I know she feels left out. Of course Dominic is still going to get my attention but now I will be spending so much quality time with my little princess as well. I am really looking forward to it and I believe she is too. Dominic will be doing some school as well....as much as he can take. He does seem to like being included and likes to work in workbooks.
Good news about Dominic is that I was able to set up some testing to look further into his lack of speech and figure out what maybe going on. I have been getting frusterated with having no explanation to why he is so behind in that way....(besides surgeries). I know that surgeries can delay them....but Dominic has not really spent that much time in the hospital. I am more concerned about the surgeries/bypass/ventilator causing actual damage that is make speech much more difficult for him. Basically we are looking into whether what Dominic is hearing is getting to his brain correctly. Now Dominic can understand and can hear but he seems to have a more difficult time processing what he hears and an even harder time relaying it back to you. He continues in speech twice a week and will soon be seeing OT as well. I haven't quite figured out what I am going to do with Jodi Lin during these time...but hopefully it will get figured out soon. Dominic's communication is coming along though and we are seeing even more of his character coming out. We are encouraged to teach him more signs though as he is very hard to comprehend....specially for someone that does not live with him.
The heart picnic was last weekend and we all had a blast. Thank you everyone who came and Joanna so much for your help. We had food provided by Maple Lodge Farms and payed for by Cardiac Kids. Thank you to both of them. Maple Lodge Farms even brought along a surprise....their nascar race car. The kids all loved it...it was very cool. I will have to post some pics later, I need to do some editing first.
I will keep you all updated on the testing and results! I am considering starting another blog (that I may actually use) all about how the diet and homeschooling are going. I will post a link if I go ahead with this.
Thanks for checking in!
Jenaia
Here is another pic of Dominic from Canada day....only 2 weeks post op. My little Spiderman!
Wednesday, June 25, 2008
We are Home!
We still need to get his coumadin (blood thinner) levels right but we can do that as an outpatient at McMaster. We will be back to Sick Kids sometime next week for post-op. So I will be looking for all who are going to be there on that day. Now here comes the job of keeping Dominic safe from hurting himself. He can not be picked up under his arms or pulled by his arms for 6 weeks and is suppose to avoid any blow to the chest for 3 months. We also have to be more careful now as he is on the blood thinners.
Dominic is happy to be home although yesterday he didn't want to go home....he wanted to stay at the hospital. He ate like 3 bowls of cereal for breakfast, so that seems to be back to normal. He is still not drinking a lot though, but seems to be hydrated enough. Can't believe the Fontan is behind us!
Thanks for all your support and thoughts and prayers. It truly helped us get through this hard time. Please keep praying for the other heart kids, Wyatt and Patrick as well as Cole and Max who is having his Fontan today.
Thank you,
Jenaia
Dominic is happy to be home although yesterday he didn't want to go home....he wanted to stay at the hospital. He ate like 3 bowls of cereal for breakfast, so that seems to be back to normal. He is still not drinking a lot though, but seems to be hydrated enough. Can't believe the Fontan is behind us!
Thanks for all your support and thoughts and prayers. It truly helped us get through this hard time. Please keep praying for the other heart kids, Wyatt and Patrick as well as Cole and Max who is having his Fontan today.
Thank you,
Jenaia
Monday, June 23, 2008
Update for June 23/08
I am sorry I have not updated. It has been hard to get to the computers...specially on the weekend. Dominic moved to his own room on Thursday night. The same day he moved upstairs. He has been doing well. He just came off of oxygen yesterday. He was needing it for night time. He is still draining out of one tube, but it is really decreasing. For those heart moms out there....he has tested negative for Kyle(or whatever it's called). Right now we are waiting for the draining to stop and for the docs to figure out the right dose of coumadin(blood thinners) that he needs. Dominic is not eating or drinking well...which concerns me but the doctors are not making a big deal about it. He has only drank like 3 hundred and so many cc's today so far and it is almost 8pm. Yesterday and Saturday he hit his minimum of 700 cc's. In order to get him to take anything we really have to push him. Including chocolate milk. Anyway we are doing very good though considering. He is getting up everyday and playing in the play room for hours. He is off of the monitors now, only has the chest tube.
Friday, June 20, 2008
Up and About today
June 19/08 Dominic is doing well he moved up to stepdown today just after lunch and very soon will be moving to his own room....only 2 days post op. He is miserable...but we can all understand that. He is starting to get okay at taking his pain meds, hopefully he is understanding they help. He does seem to be in a lot of pain. His sats are still low and he is relying on oxygen and draining quite a bit from two of his chest tubes. He is still doing extremely well though.
June 20/08 Dominic was moved to his own room last night and I have been able to stay with him in a parent bed. He walked down to the playroom today and coloured and played for two hours. He was able to eat 2 and a half chicken nuggets and had one of his draining tubes removed. They are a little concerned that he is not drinking enough fluids though. He is still receiving oxygen but not much. He is doing amazingly well.
June 20/08 Dominic was moved to his own room last night and I have been able to stay with him in a parent bed. He walked down to the playroom today and coloured and played for two hours. He was able to eat 2 and a half chicken nuggets and had one of his draining tubes removed. They are a little concerned that he is not drinking enough fluids though. He is still receiving oxygen but not much. He is doing amazingly well.
Wednesday, June 18, 2008
Doing Well!
I am sorry I haven't been able to update this page in some rooms in the hospital. But when we got to the hospital this morning Dominic was extubated it happened at 4 am. He was doing well and number are not too bad.
Quote from Dominic's nurse:"
He is recovering really well...no let me re-word that He is recovering extremely well!" He is drinking lots and eating freezies and jello. We have tried some solid food but he refused to eat it. He got rid of his IV in his hand (Atrial Line), the NG tube and the catheter. He is beginning to act more like himself(not the happy part though)...which is making things a little hard. He still needs the oxygen...but he keeps getting mad and pulling out the nose prongs, so they are trying him with just the tube blowing at his face. He seems to be okay with that but his O2 sats are only sitting in the low seventies although without the O2 he was in the sixties. We would like him in the 90s although the 80's is okay....that is where he was before surgery. They should go up though. They aren't too concerned about this yet as he still has a lot of fluid that he needs to get rid of. He is coughing really well...which is good. He is also blowing bubbles. Mostly he is watching a lot of movies and sleeping. Just tonight when I went into see him I got to hold him for a bit. It was difficult with all the lines and neither of us were that comfortable. He is quite miserable now and in pain but he doesn't want to take his meds. Please pray for him to be calm and take his meds if he needs them. We should definetly be upstairs tomorrow, apparently he is ready. Thanks for checking in and for all your thoughts and prayers. Please pray for a couple of other heart babies for me too. Cole goes in for surgery tomorrow morning. Wyatt has been in the ICU for quite awhile and having a rough time. And Patrick...he had his fontan yesterday too...he was first case but is having a really hard time. They are talking about taking what they did out..but that would mean he would probably be listed for a transplant.
Thank you
Jenaia
Quote from Dominic's nurse:"
He is recovering really well...no let me re-word that He is recovering extremely well!" He is drinking lots and eating freezies and jello. We have tried some solid food but he refused to eat it. He got rid of his IV in his hand (Atrial Line), the NG tube and the catheter. He is beginning to act more like himself(not the happy part though)...which is making things a little hard. He still needs the oxygen...but he keeps getting mad and pulling out the nose prongs, so they are trying him with just the tube blowing at his face. He seems to be okay with that but his O2 sats are only sitting in the low seventies although without the O2 he was in the sixties. We would like him in the 90s although the 80's is okay....that is where he was before surgery. They should go up though. They aren't too concerned about this yet as he still has a lot of fluid that he needs to get rid of. He is coughing really well...which is good. He is also blowing bubbles. Mostly he is watching a lot of movies and sleeping. Just tonight when I went into see him I got to hold him for a bit. It was difficult with all the lines and neither of us were that comfortable. He is quite miserable now and in pain but he doesn't want to take his meds. Please pray for him to be calm and take his meds if he needs them. We should definetly be upstairs tomorrow, apparently he is ready. Thanks for checking in and for all your thoughts and prayers. Please pray for a couple of other heart babies for me too. Cole goes in for surgery tomorrow morning. Wyatt has been in the ICU for quite awhile and having a rough time. And Patrick...he had his fontan yesterday too...he was first case but is having a really hard time. They are talking about taking what they did out..but that would mean he would probably be listed for a transplant.
Thank you
Jenaia
Keep Praying!
Paul stayed with Dominic late last night and when he left they didn't seem to think he would be extubated by morning anymore. His Sats are low and they think he may have fluid in his lungs. Please pray that this gets sorted out soon. His blood pressure is also low and has been since surgery...they were starting to get a little more concern last night as it had not yet gone up. They may already have this figured out as we haven't seen him yet this morning. We are heading there soon!
Thanks for the continued prayers and support!
Thanks for the continued prayers and support!
Tuesday, June 17, 2008
Waiting......
Hi Everyone,
We were held off for a bit, because they didn't know whether there was a bed in CCU or not. Dominic went in at 12:50 this afternoon. He was very doped up when he went in. They gave him a med that made him drunklike...he could hardly hold his head up and he thought it was hilarious. We all had a lot of fun watching him as he goofed around just before going in. My mom videotaped a little bit of it...so I will post it later. So he went into the OR very calm which kept me calm. He kept the mood good with his funny reaction to the med. They are allowing about 5 and a half hours for the surgery. I will try and update again tonight. Thank you everyone for all the messages of support and all your prayers. So far so good!
Jenaia
We were held off for a bit, because they didn't know whether there was a bed in CCU or not. Dominic went in at 12:50 this afternoon. He was very doped up when he went in. They gave him a med that made him drunklike...he could hardly hold his head up and he thought it was hilarious. We all had a lot of fun watching him as he goofed around just before going in. My mom videotaped a little bit of it...so I will post it later. So he went into the OR very calm which kept me calm. He kept the mood good with his funny reaction to the med. They are allowing about 5 and a half hours for the surgery. I will try and update again tonight. Thank you everyone for all the messages of support and all your prayers. So far so good!
Jenaia
Sunday, June 15, 2008
Off to Toronto!
Hi Everyone,
So we have decided to head into Toronto tomorrow (Monday). We need to be at Sick Kids by 6am on Tuesday so we figured this would be a little less stressful and perhaps we can try to enjoy our night together before we hop on the coaster ride. We will be at the super 8 motel the first 3 nights...although I don't know if Paul and I will actually stay the night of surgery or the night after. We will have to see how we feel about leaving the hospital. It really is quite close though. My mom and Jodi Lin will be with us and definetly staying in the hotel. After those first three nights we will have to see what happens. We hope to get into Ronald McDonald house and have Jodi Lin with us...but we will have to see how long the wait is there.
Thank you everyone for your thoughts and prayers! I also wanted to thank everyone who donated Money to help us out or bought us a gift card. Thank you for all the support everyone is giving us. I feel quite confident that we will not have the added financial stress that a hospital stay can involve and we can concentrate on being there for our little boy. Thank you so much everyone!
Jenaia
P.S. I will try to update online as soon as possible, as for phone calls we will have to see how I feel and how much time I have.
So we have decided to head into Toronto tomorrow (Monday). We need to be at Sick Kids by 6am on Tuesday so we figured this would be a little less stressful and perhaps we can try to enjoy our night together before we hop on the coaster ride. We will be at the super 8 motel the first 3 nights...although I don't know if Paul and I will actually stay the night of surgery or the night after. We will have to see how we feel about leaving the hospital. It really is quite close though. My mom and Jodi Lin will be with us and definetly staying in the hotel. After those first three nights we will have to see what happens. We hope to get into Ronald McDonald house and have Jodi Lin with us...but we will have to see how long the wait is there.
Thank you everyone for your thoughts and prayers! I also wanted to thank everyone who donated Money to help us out or bought us a gift card. Thank you for all the support everyone is giving us. I feel quite confident that we will not have the added financial stress that a hospital stay can involve and we can concentrate on being there for our little boy. Thank you so much everyone!
Jenaia
P.S. I will try to update online as soon as possible, as for phone calls we will have to see how I feel and how much time I have.
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