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! :)

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.

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!

(enter interesting title here)

Hello from Harris. I know I haven't posted in a weeks time or is it more? I can say I've been busy, and in another sense I can't. The beginning of this week has been busy with regards to Amy's MRI and lumbar puncture, and then last minute change of plans and Sam, Aaron and I are at the Campbells for two nights. So, we got home yesterday finally, and it was nice to get some laundry (much needed laundry that is) done - well, it is still incomplete but it is getting there. Of oourse with Sam being here I should have loads of extra time...well, not really, I feel definitely more relaxed and not stressed out with the kids but I still have to do things (of course!!) and Mr. Sam has been using the computer as well, so time is limited. Ok, enough of my excuses!

So Amy went through the MRI just fine and the puncture. I was worried because they had her fasting from 3am in the morning till after the scan...and it just happened to be that they were having difficulties with the machine and therefore the scan (which should have been in the morning) ended up being in the early afternoon. But, she survived and though groggy when she woke up she was basically herself (so I was told).

Must check cookies...mmm fresh chocolate chip cookies. Cookies checked and Sam is asking for another one, I guess they pass? ;)

I was going to post this photo awhile ago addressed to the Guy (Waiter) at IHOP...this is what happens when you offer broccoli for dessert at least with my daughter! :)

And some chocolate crinkles I made last week, can you tell I'm trying to spoil Sam?? :P Not really.

Ok off to get one more cookie for myself and Amy. :)

Going very well!

I must tell you all, that it has been three days and counting since Amelia took a "real" seizure, there has been times where I was wondering if she had maybe a small one, but I think she might be finally her normal self again. And my, she is talking up a storm again! So very nice to see! I think it was yesterday she saw me scratching my eczema (ok...I know I'm not supposed to but it gets quite frustrating after so long of trying to get rid of it and then finally succumbing to scratching) and she right away said "No scratch!" You see, she has eczema too and therefore is told not to scratch...looks like I need to be a better example. Much to be thankful with regard to her seizures and how everything has gone. Was reading a evening devotion by Winslow on afflictions (November 3rd I think) and reasons why they come to the Lord's people, needless to say it was very good and quite applicable to our recent happenings.

Another note, I think we are about to go through another round of colds...third time in the past month and a half. Aaron has been having a fever for almost two days next to congestion. Thankfully ibuprofen works well, as does calpol (something like tylenol) but it does mean lots of restless nights with Aaron between us. But we love him, (of course we do!) if only you knew what it meant to see this little man smiling at you in the middle of the night when he is running a fever and supposed to be sleeping...it is quite priceless.

And for those of you who don't know it already, we're to have a visitor stay with us for some time. My brother (in law) Samuel is coming next week Tuesday already! I'm excited can you tell? :) Oh, and thats Aaron gone off to sleep. Good. Now if only Amy could get a wee nap, I could run to the store. :)

This isn't the picture of him sleeping, he is in his car seat just now (it is easier putting him to sleep that way than holding him). But I thought he looked very peaceful here.

And the only pictures I have of his 1st birthday cake...It looks nice I suppose, but the *writing* (not the actual icing on the cake) icing was gross....must been going out of date or something.

Can you tell he was happy? Amelia sure was! Every C-A-K-E is a Birthday cake to her!

Ah, and thats Amy sleeping now too! Just means my shopping time will be cut in half if not more. :) Hope you all have a lovely weekend.

Short update...

My computer decided it was not going to work anymore. I thought that it might just be acting a bit slow but this is ridiculous I can't even open any documents let alone see them! Anyone want to come and fix it for me? ;) So, I'm using Jett's which is limited use seeing he uses it all the time.

Amelia still has these trance like seizures and upwards still of 9-10 a day...so, it isn't as if it is just one a day, but many. Yesterday before I knew it I heard a loud thump and ran into the room and found her on the floor...she had a seizure in her chair and fell as she loses control of her body muscles I suppose. Today she seems to be doing quite well, but usually the mornings are the best anyways have yet to see this afternoon.

I'm also dealing with a very needy 1 year old...soo, off I go.

a picture post

I'm trying to get some photos up here before I get behind. Not very easy when your trying to give a bottle to your 1yr old (is he really 1 already?!). Ok, I had to let him down, there is no way this would be done before 12 (we'll see if that happens) if I had to hold him the whole time.

I think we've been settling back into a routine again and it feels nice! Unfortunately I still have to deal with Amy's seizures (not the ones where she is shaking and very stiff) and it isn't always easy. For example I was in the kitchen last night cleaning up the dishes and keeping my ear open for strange noises when it went silent in the next room...I went in and saw Amelia on the floor in a trance looking at the ceiling. She had fallen over obviously...but it just reminds me how I can't let her climb stairs by herself nor go down them by herself! We've got colds just now (again!!) and it has to have the cough too, so Amelia is awake in the middle of the night hacking away...I find cough syrup takes toooo long to start working. So yes, sleep deprived we are - nothing new there though! :)

So, here is my first picture...and it is rather special to me now after the week we've been through. Doesn't she look princess like? Yes, she is our little princess, delicate in some ways and stubborn in others. This is the skirt I sewed for her before she took these seizures, looks ladylike if you ask me! Thanks to Care for the pattern - it worked out lovely. I think I'm learning the hard way to appreciate my children. As mothers we all get frustrated at times with our children, but I hope I'm learning to prize them more. You just need to go to a sick children's hospital to realize how thankful we ought to be for our children and how healthy they are!! It doesn't change the fact I'm still trying to come to terms with her disorder but it is not nearly as bad as some of the things I've seen in hospital. I admit I wasn't able to cope during the first days of her turns, partly because it was the fear of the unknown. I had no idea what was going on and I was afraid of her going mentally retarded which would mean me losing my daughter not physically but well, you know what I mean. Anyways, it is how it is now and I just hope she outgrows it!

This photo was taken the Saturday before we went up to Stornoway the first time to see the doctor. That is Jett walking on the beach in Northton. It was nice to see something calming when we were going through so much.

Another scene of the beach in Northton...one of my favourites although Jett likes the other one I caught in which the picture is sharper, but this one seems softer to the eyes... :)

Jett and the beach again.

I've been wanting to get the hills with snow on the top and so far these are some of the better ones I've been able to capture. This is outside Tarbert on the way towards Stornoway.

Amelia giving a funny grin :)

And here it when she had the EEG done. About 16 wires were GLUED to her head and I mean glued because she still has spots of glue on her scalp. She had to carry around a little bag attached to her waist in which a usb cord was connected to a computer with a camera...yes, that meant she couldn't get around very far, thankfully this was done in the afternoon so it wasn't hard to keep it from bothering her during the night.

After she was disconnected from the computer the next morning she was able to go and play, and here you can see the bag she had to cart around.

Looks dreadfully uncomfortable, but she didn't seem to notice, the toys were great, and huge selection and plenty of them.

Nearing the evening time, when Amelia got all the wires off, and then had a fun fun bath...I suppose they just got tuckered out here.

I like this one. I know Aaron was drinking but he was smiling so much at the same time. And Amy was happy too.

So, there you have my picture update. Now I need to figure out what is for lunch and check on the fire I made in the other room (I give up on those, I never seem to make them big enough and they never seem to heat much of the room up!!).

Oh, and I'm almost 26 weeks pregnant (Monday)...wow, by the way, I think it will be a boy...but how do I know, both pregnancies before I said the same thing and was right only once...maybe this will surprise me and be a girl haha...I have doubts though. :) Whatever he or she is, I think I'll love s/hejust as much as my other two. :)

Happy 1st Birthday Aaron! (and a update)

We are finally home! After a long week of hospital, doctor visits, tests and etc we have finally arrived safely to this large house in Northton. I was so glad we only had to be in hospital for two nights rather than the whole week! A huge thank you to all our friends that have helped to make this time easier for us, and many thanks to the Macleod's who housed and fed us during this time.

Yesterday was our son's first birthday, unfortunately we couldn't really celebrate it due to the circumstances, yet Mrs. Macleod had a gift wrapped and ready to give him that morning! It was very sweet of her to think of it, and both Amy and Aaron enjoy those blocks very much! I suppose I'll just have to make my birthday a joint celebration ;).

Amy is still to have further tests done on Feb 24th. One is the MRI scan, where they will have to put her under, and the second test is for some kind of food disorder...well, the second is a bit more difficult to explain hopefully I'll get the proper name for it on the 24th. She is also still having seizures and quite regularly throughout the day (usually just before naptimes and bedtimes) this isn't including the seizures she has throughout the night which I have no idea how many there are. She is a complex case, as she has two types of seizures one is when she goes into a trance like mode in which she stares into space and usually doesn't respond to our commands or voices, the other is when she gets all stiff and shakes quite a bit...I can't say I'm getting used to seeing them, but I have to accept them as part of this whole disorder (if epilepsy is a disorder?) I do admit to handling them better as I understand more about epilepsy, though it is still hard to take not to mention being pregnant and handling it all at the same time!

Another note, as someone mentioned glue ear causing fits in her little one, which made me have to ask the doctor again that we DID rule out infections that could cause seizures, and of course he was able to explain that 1. Such and such test ruled out the infections, and 2. The evidence is so much to prove that it is epilepsy (well that is basically what he said although he said it in great detail much to my satisfaction!) I really didn't think it was glue ear (an ear infection) as Amelia has never had problems when having it, she also didn't show a temperature throughout this whole thing until the second night in hospital and that was because she was getting a BAD cold (yes we all have them now) and has been fine with regards to temp now.

Anyways, I'm tired and it is only 9:14! Hopefully I can try to get Amelia into bed (which has now been put on the floor incase she has a seizure and falls out of bed) soon and Aaron following.