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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.

Someones *growing* acomplishment!

This little man has been working on the following for almost two weeks now! This unfortunately isn't the best he has done so far...but at least it is a taste of what he is up to.

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.

What has been happening.

I decided to start trying to explain what has been going on the past week and a half now (I think it is) but it might end up being posted at a later date due to the length of it...or I mean, trying to remember all the details (well not all but you know, the important ones).

As I already mentioned, I think, last wednesday night we noticed something funny about Amelia when we were putting her to bed. The next day we figured she had the flu as she was throwing up but she was still able to eat some toast at noon and again at dinner time...so not completely sure if it was or not. It was really Friday we noticed these "blank stares" she started to give us, some lasting a couple of minutes but on Saturday it lasted for nearly 9 minutes. This would be followed by her snapping out of it and then acting quite hyper for a bit, and then she would become quite exhausted. Jett called the doctor Friday and he checked her out and we thought to give it a day or the weekend to see if she improved since we "thought" she may have had the flu. Well Saturday came, and she had another bout, and this time I took our digital camera out and videoed her (not something I wanted to do but I wanted to be sure the doctor understood that this wasn't normal). So we went to the doctors saturday morning and he saw the video and basically told us to go to Stornoway hospital to get blood tests taken to rule out a few things (infection etc.). So up we went, and poor Amy had to give blood twice as the first sample was sent to a mini lab for emergencies and it showed her as anemic!! The second time showed she was completely fine. So we were to come back on Monday to see the Pediatrician. So we started to drive home when the car decided to stall and then not start again! It just seemed one thing after another! Anyways, to make this long story shorter, we stayed at the Campbells in Tolsta for the weekend and Monday went back to the hospital. The pediatrician saw the video and took another blood test (which again showed up absolutely fine) checked her ears (this was the third time to check ears) but nothing showed up. So he referred us to Glasgow. The Neurologist/Pediatrician he referred us to was born in Stornoway so probably was even more helpful in getting us over quickly as we left Tuesday morning (nearly missing the flight...thats another story though).

Tuesday - Amelia was admitted to Yorkhill hospital and we began the series of tests to eliminate whatever and to hopefully come to a conclusion.

E.E.G was the first test in which I have a photo of her with though not on here at the moment. There were 16 or so wires connected with GLUE to her poor wee head, she was quite good getting them on but not so getting them off the next day. And a video camera was at the end of her bed the whole night to catch her seizures and there were quite a few of them.

The next day Wednesday, once wires were removed, she had a CT scan to rule out any brain tumors or abnormalities and that came out just fine. She started an anti-epilepsy drug this night.

Thursday we got to go home to the manse instead of staying another night in the hospital (yeah!).

Friday we went to the hospital to check her eyes out again, eliminating another possibility T.S. but not sure what the long term name for it is. But again, that came out just fine as well.

All being well, Monday we have to see the doctor and hopefully by then the medication will have taken more effect, and another blood test will be taken some sort of chromosome test which takes 2 months or so to get back.

And thats all at the moment, as you can imagine it has been a highly stressful and emotional week for us. I'm sorry if I sound too matter of fact right here, but it is the best I can do just now as getting into more of the nitty gritty would take a lot of effort that I don't have just now. I do hope to update again but for now this will have to do. Many thanks to all for their thoughts and prayers.