Monday, December 12, 2011

Well I Guess it is Time for the Annual Update

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,


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!


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!


Sunday, February 1, 2009 has been a long time!

I really should start trying to update regularly. Anyway Dominic sedated ABR came back 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


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!


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 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.


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!