Which can be dull I do say. Ah well, it seems like time is just passing so fast. It seems yesterday that I was waiting terribly impatiently for Baby to come, and now he has come and already he is two weeks old.
So, I never said that Jett's computer decided to stop working a few days before baby arrived so we've had someone take it and fix it...and don't ask me what all happened to his poor machine but it now works. Another bonus was that Jett bought 2 gbs of ram for my laptop which was running on only 256 mb (yes Megabytes NOT gigabytes)...sooo it runs a huge amount faster meaning less time waiting around for things to load and therefore less time on the machine in the end. :)
Last week we went to the US Consulate to start paper work on Owen, but we were only turned away because they had just changed things and we needed to have an appointment first... I can't help it but THIS ALWAYS happens to me!!!! Always something with the US immigration or US Customs or US something or another...rather aggravating, and very upsetting since I felt I wasted Jett's time driving down to Edinburgh and then back to Perth when he could have been studying for his Presbytery exam which is next week already!
Our tests are coming up for this TSC thing. Although Amelia's renal ultrasound is supposed to be done this Friday...another thing to sort out as these are times again that Jett would have to set time aside for...which he really doesn't have.
The communion season here in Perth is over now, most of you probably didn't know we were having communion here this past weekend, likely due to me not being able to attend much at all. Rev. Neil Ross was here to take the services, and it was very nice to see him and Mrs. Ross again. Owen was baptized Monday night by Rev. Cartwright (making it his second child from our family to baptize). Owen was well fed just before so he was sleepy and really didn't make much of a noise so I got to enjoy the address before the actual baptism.
Anyways, that is my sloppy post, and expect more like these as I really can't be spending time editing things such as grammar, punctuation marks, and run on sentences (and so on). I'm trying to work on getting more pictures of the new babe, and of my other wee ones, as well I just caught Aaron acting so funny on video...I think it is the Cherokee indian coming out in him lol! ;)
Until then I must get off and try to have an early night...
Showing posts with label tuberous sclerosis. Show all posts
Showing posts with label tuberous sclerosis. Show all posts
Thursday, June 11, 2009
Saturday, March 14, 2009
A bit of everyday life from Harris
I'm still here and posting away! :) It has been a busy weekend with the Tarbert communion, but now that that is passed, and my laundry it nearly caught up (it never will be fully) I feel more free to do things like post...well, maybe.
This week has been filled with... the Monday service, and Tuesday groceries in Stornoway, Wednesday "catch up" day, and Thursday the same, and now it is Friday and I'm kind of doing all sorts of things, a little bit of cleaning, laundry, ironing, baking etc (as housewives we do so many tasks in a day it is rather tiresome to list).
As my last post or so mentioned Amelia's newest diagnosis - Tuberous sclerosis, I've been endeavouring to read more about the subject, and of course, am not finding much to encourage me...but(!) the doctor did say she has a minor case of it which is good. Another good thing is, that she can still outgrow the epilepsy which was my fear that she wouldn't be able to and therefore have to take medication for the rest of her life. I know I'm thinking way in her future, but I wouldn't want to risk anything that would make her not be able to have children (they currently do not know what the drug she is taking does to pregnancy). Another good thing is, that we do not have to get the tests done until we are in Perth again, I'm very much relieved, especially for Jett's sake! I just knew it would be hard on him with his studies and I don't think I could take him suffering from missing classes, or study time because of this. The tests although are important, but the doctor feels it is safe enough to wait. Another thing is that because she does have benign tumours in her brain, she will have to be monitored every two years to make sure they are not growing as well, they probably will have to take scans/ultrasounds of her kidneys and/or vital organs to ensure no growths there. You know, I've been thinking why did all of this have to happen now? And I just realized how thankful I have to be that it didn't happen sooner!! If it happened earlier in Amelia's life it could have been worse off for her development, and not to mention the cost in Texas for medical care!! So, this is the right time, and a mercy too that it didn't happen sooner. So theres a wee bit of an update there.
And the weather is looking more and more like spring...ahh! Although just now it is grey out it has been sunny rather than grey for the entire day...I think! :)
Amelia pushing Aaron in the sun...sorry about the pacifier but I'm not caring anymore what people think about it (or at least I'm not letting it bother me much) most people don't have to go through moving this often, plus having her go through such a time of sickness.
Another view again from the house...yes, I don't walk very far, simply put I can't. I've got dreadful pain now, and it is worsening as baby inside gets heavier. The doctor also mentions that walking can actually worsen my condition...so no window shopping (lol, no shops around here anyways).
A cuddle with Amy Jane...sorry about the red patches on us...we're infected with eczema!! HAHA! :)
Hmm, I guess her eyes aren't as blue as I thought they were. Maybe they'll turn green like Jett's...aww, that would be cute! :)
Ok must let Sam do an exam.
This week has been filled with... the Monday service, and Tuesday groceries in Stornoway, Wednesday "catch up" day, and Thursday the same, and now it is Friday and I'm kind of doing all sorts of things, a little bit of cleaning, laundry, ironing, baking etc (as housewives we do so many tasks in a day it is rather tiresome to list).
As my last post or so mentioned Amelia's newest diagnosis - Tuberous sclerosis, I've been endeavouring to read more about the subject, and of course, am not finding much to encourage me...but(!) the doctor did say she has a minor case of it which is good. Another good thing is, that she can still outgrow the epilepsy which was my fear that she wouldn't be able to and therefore have to take medication for the rest of her life. I know I'm thinking way in her future, but I wouldn't want to risk anything that would make her not be able to have children (they currently do not know what the drug she is taking does to pregnancy). Another good thing is, that we do not have to get the tests done until we are in Perth again, I'm very much relieved, especially for Jett's sake! I just knew it would be hard on him with his studies and I don't think I could take him suffering from missing classes, or study time because of this. The tests although are important, but the doctor feels it is safe enough to wait. Another thing is that because she does have benign tumours in her brain, she will have to be monitored every two years to make sure they are not growing as well, they probably will have to take scans/ultrasounds of her kidneys and/or vital organs to ensure no growths there. You know, I've been thinking why did all of this have to happen now? And I just realized how thankful I have to be that it didn't happen sooner!! If it happened earlier in Amelia's life it could have been worse off for her development, and not to mention the cost in Texas for medical care!! So, this is the right time, and a mercy too that it didn't happen sooner. So theres a wee bit of an update there.
And the weather is looking more and more like spring...ahh! Although just now it is grey out it has been sunny rather than grey for the entire day...I think! :)
Aaron in the stroller that belongs to the house...isn't he cute in the sweater/hoodie!! Thank you mom for this, it is one of my favourite things to put on him now.
Amelia pushing Aaron in the sun...sorry about the pacifier but I'm not caring anymore what people think about it (or at least I'm not letting it bother me much) most people don't have to go through moving this often, plus having her go through such a time of sickness.
Another view again from the house...yes, I don't walk very far, simply put I can't. I've got dreadful pain now, and it is worsening as baby inside gets heavier. The doctor also mentions that walking can actually worsen my condition...so no window shopping (lol, no shops around here anyways).
A cuddle with Amy Jane...sorry about the red patches on us...we're infected with eczema!! HAHA! :)
Hmm, I guess her eyes aren't as blue as I thought they were. Maybe they'll turn green like Jett's...aww, that would be cute! :)
Ok must let Sam do an exam.
Tuesday, March 10, 2009
Not just epilepsy but also tuberous sclerosis.
On a Saturday afternoon I got a phone call from the Dr. Macleod (Glasgow, Neurologist-Pediatrician) stating Amelia's MRI results... I was hoping for something else but this is what it is and I just need to accept it, submit to the Lord's will. Amy's MRI showed subtle abnormalities. We had thought we ruled out TS (Tuberous sclerosis) by having a certain eye exam although TS can affect more than just the eyes, such as vital organs: brain, kidneys etc, so I guess we weren't quite out of the water just yet, although the doctor really didn't think anything would show. So these "subtle abnormalities" I am supposing are tiny benign tumours.
What does this mean for us? Well, it means her epilepsy is caused by T.S. It means we have more tests to do - my guess is that they can make sure there isn't any other benign tumours on other vital organs, and tests to do on the parents too because this is supposedly a genetic thing. Not sure what kind of tests they can do on a pregnant mama though!
Needless to say, I was in tears after the conversation with the Dr. maybe from feeling helpless in the situation, and maybe also knowing it isn't over yet (more tests to do, etc etc). Anyways, it has happened this way. Everyone's trials are different in this world. But all things are ordered by the Lord. "All things work together for good to them that love God..."
On another note, we just finished the last service to the communion season in Tarbert and it was very nice. I was glad Samuel was here to take the kids out during the table address and so forth. All in all a very good time I think for us all.
Must get groceries at some point this week (meaning a trip to Stornoway), and catch up on my mounds of laundry, house cleaning and the usual housewife things. Off to fold some clothes, and get two wee ones off to well needed beds!
What does this mean for us? Well, it means her epilepsy is caused by T.S. It means we have more tests to do - my guess is that they can make sure there isn't any other benign tumours on other vital organs, and tests to do on the parents too because this is supposedly a genetic thing. Not sure what kind of tests they can do on a pregnant mama though!
Needless to say, I was in tears after the conversation with the Dr. maybe from feeling helpless in the situation, and maybe also knowing it isn't over yet (more tests to do, etc etc). Anyways, it has happened this way. Everyone's trials are different in this world. But all things are ordered by the Lord. "All things work together for good to them that love God..."
On another note, we just finished the last service to the communion season in Tarbert and it was very nice. I was glad Samuel was here to take the kids out during the table address and so forth. All in all a very good time I think for us all.
Must get groceries at some point this week (meaning a trip to Stornoway), and catch up on my mounds of laundry, house cleaning and the usual housewife things. Off to fold some clothes, and get two wee ones off to well needed beds!
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