Thursday, December 31, 2009
So it wasn't surprising that Isabella told me she had a sore throat. Of course, I thought. However she kept complaining that she felt cold. No fever.....hmmmmm. Well a few hours later Isabella has a very painful throat and now has a fever. No one else got a fever with their sore throat. But leave it to Isabella.....I know, like she can help it! That child has always been like that. If she gets what is going around she gets it in triple strength! Nothing like starting the new year off with a bang!
And so it is timely that we will soon (not on the first though) be revising our diet. It was upsetting to us to know that one, if not two of the girls actually gained weight during the soccer season! We will go with our diet plan from last year that we had such success with, but failed to stick with for various reasons. One of them was financially. Fresh, whole foods are expensive!!!! Some people see a savings when they transition to a whole foods diet, but for us that won't be the case. We already keep away from packaged foods and chips and cookies. Although I think in the last few months we had a few too many cookies :-) So for us there is an increase in cost. But we can not justify keeping our current diet when we see what it is doing to our health. All of us are excited, well all but I think Flannery. Flannery seems to have an "allergy" to green foods. I think she has "hives" just thinking about it :-)
There will be a couple of other changes going on here as well. A lot will be hard to put into proper context without writing a semi-novel, but I don't have time to write a novel so I will try to keep it short. Our family crisis has had us re-examine our priorities and the way we do things around here. We've come to some new conclusions and have been slowly implementing some changes. Although I don't recommend a crisis for anyone, this one is coming with blessings. It has been hard, and some days are still hard. But overall there have been many blessings. There is a lot of uncertainty as well, but we are learning how to really live by faith and wait for the Lord to reveal what He has next for us.
Some of the 'fun' things that will be new will be for ME! :-) Some of it you may have 'seen' already. That being my growing love of photography. I suppose since it is much harder to carve out time to paint or draw, it was only time that I would turn to photography. I've downloaded some free photo editing tools recently and have started to learn how to use them. Another thing that we have been doing already, but has had a stirring in my soul, is to dig in deeper with our learning sign language. It is hard to explain, but Jeremiah and I both feel that the Lord has a purpose for us learning this. (outside of it being our only way of communicating with Jed) And the other.....well, I hesitate to talk about, as we have gotten some negative feedback on this in the past.... Jeremiah and I both agree that I should start to study TBA, which is the therapy that Jedidiah is receiving. I am VERY, VERY excited about these 'new' adventures. I'm not sure how far I will get with any one of them, but it is an adventure that I am looking forward to and I am continually giving them back over to the Lord for Him to do with what needs to be done in my and others lives.
I would love to write more about our changes, but being that I am still ill, I need to go lay down for a while. After maybe doing some natural remedies. I pray that everyone has a blessed New Year!
Wednesday, December 30, 2009
Jonah really loved the bead play. He's the only one of the six that loves to play with these types of toys. Jedidiah comes in second, the girls were never interested in them....at all.
Then he was off to take command of the pirate ship. This was a neat ship, with three levels. It was a bit chaotic since school is out due to winter break. We are hoping to go back on a less busy day.
Isabella and Jed going down the slide. It was great because the stairs were easy to navigate so that even Jonah could climb up by himself.
Monday, December 28, 2009
Thursday, December 24, 2009
I tried putting text under the photo at the top of this post, but then it made the photo disappear. Um, I'm about to call the people at Blogger and let them know how I feel about that! I thought the photo above came out kinda neat. Picnik has a tool to select an area of the photo that you can have in color while the rest goes black and white. I was having fun trying out the different options!
Monday, December 21, 2009
Monday, November 23, 2009
Wisdom. There will be lots of decisions to be made and a heavy dose of wisdom would be welcomed!
Patience. I really want to know, NOW, how this is all going to turn out, but these things don't work themselves out overnight.
That God would wield His Magic Eraser. Enough said on that one, but needed VERY much.
Protection from the fiery darts of the enemy.
I am sure there are a ton more, but right now those would suffice.
The Lord has been calling to me for some time to come and walk with Him. I have been putting that on hold for a while now, but am now in a position that I NEED to be walking with Him. I had a bit of an analogy to share with you all about having a deep relationship with the Lord. Please remember that analogies usually break down somewhere and I am sure mine has many holes in it. But I think it will get the point across. You see you can know *about* God but still live a defeated life. You can know a lot of scriptures and still be living the status quot. You can not live an abundant life unless you *KNOW* God. I am sure what I just said doesn't seem to be any different than the previous sentences, but there is a world of difference. And I know, because I have lived it. So here is my analogy.
Let's say that you are poor. You wear rags, eat beans and rice each and every day and have to walk everywhere because you don't have a vehicle. Now let's say that you have a very rich aunt. You know a lot *about* her. You know where she lives, what she likes, what she doesn't like and stuff like that. But other than that her life doesn't have any impact on yours. You can tell all your friends about this aunt, but that information has no impact on your life. But let's say that one day you get a letter in the mail from your rich aunt. She tells you that she would love correspond with you and that when she returns your letters she will include a check to meet your needs. Now at this point knowing that information STILL will NOT change your life. You can tell everyone that this aunt can meet your needs but still be living in poverty. It is only when you actually write back to her, that she then sends you a letter in response to yours that you start to know her more intimately. Plus you also receive a nice check that you are then able to buy some newer clothing with. Then you can start eating a more varied diet. And as you continue to correspond with her your needs are continually met. One week you tell her how hard things have been with all the rain and having to walk in it each day. And low and behold she sends you a vehicle. Now you can tell your friends all about your aunt, and not just the casual facts, but about how much she loves you, cares for you and all sorts of wonderful things. And your life is PROOF of it.
Now I chose to use money as an example only because of how tangible it is. But this would apply to any need. Are you living a life filled with anger and bitterness? Are you living in depression? The list can go on and on. The idea is that the Bible tells us not only about God, but about how He wants to "correspond" with us. When you find scriptures that say, you are a new creation, you can be sure that He meant it. When it says that all you have to do is ask for ( fill in the blank---biblically that is, say the fruit of the Spirit, or something else that scripture says you can have) then all you really have to do is ask and then wait EXPECTANTLY for it. I mean what good would it do for you to have written your aunt, then not check your mail box each day for her return letter? So I hope I was able to convey the difference in knowing *about* God and *knowing* God.
And I am being called to *know* God. A wonderful friend of mine was able to share an experience she recently had. And it has to do with finding the time to spend with the Lord. If you find yourself saying that you just don't have the time, chances are that there is something in your life that you are making more of a priority (idol even) than the Lord. I thought about that one, and it didn't take me long to figure out where I could find the time......my computer time! Ouch! I plan on having a movie night on Friday's for the girls, and I think I may just make Friday night my computer night. The rest of the week the computer will remain off. Well, for the most part, I do let Jed watch Signing Time during his feedings. But I want to be committed, and so in between the ST viewing it will be off. This is going to be hard...for me ! So if I don't answer your emails or post your comments for a long time, please know I am not ignoring you. I just won't be here very much. I will update my blog each week though. It is my online journal, and I don't want to stop journaling about our life.
I want to leave you with some VERY, VERY cute crochet patterns. I am making the stars currently to decorate our doorways/windows with. I plan on making a flock of birds to go up on our Christmas tree as well. And golly gee, how can one resist a blanket of colorful hexagons? I get all giddy when I go to this persons blog! Enjoy!
Stars tutorial, and more pictures of Stars
Friday, November 13, 2009
We discussed Jed's OCD issues with the SLP. I really liked her take on it, although I feel that it maybe only partially true for Jed. She thought that perhaps because Jed can not communicate, which is a big issue, his need to lay things out and show us could just be his way to take control of something in his life. He is really good at sorting things and it may just be his way of saying, "hey, I may not be able to talk with you all, but look what I CAN do!" Again, I thought that she may be onto something, but at the same time I still feel this goes deeper than that. But it was great to have another take on it!
I have been trying to do research on my own about apraxia as there isn't anyone else to talk to about it. So I asked the SLP if she would be able to tell (a few months down the road and has had time to work with Jed) how long she thinks we might be looking at having speech therapy. At first the coordinator had told us of a boy who was very much like Jed, starting from the very bottom rung at the same age. By five as he was entering kindergarten no one could tell he ever had a speech problem. I told them, that that is what is so hard about this as you hear the stories of kids who had one or two years of speech therapy and they are good to go. Then you hear of the stories about children in speech therapy for 5+ years! So then they told me that they personally believe that the children who recover so quickly really didn't have apraxia. The very nature of apraxia isn't something they feel, from their experience/teaching, is resolved that quickly. They feel that anyone with true apraxia will need intense therapy for YEARS. Oh, well that wasn't exactly what I was hoping to hear :-) And then the SLP said that from what she has seen of Jed and his abilities that she feels he truly has apraxia. We were able to see the results of the educational test she did last week. She said that although he tested mildly delayed (he was all of one point into the mild delay range) she felt that he actually was worse off than that as he had more than half of his points come from the fact that he knows a lot of his ABC's. Again, that wasn't what I had expected to hear, although we've always known that Jed has always seemed to be "off".
But perhaps the most disturbing idea brought up was one of him not talking....ever. I some how don't believe that will happen. Again, though, I was taken off guard when she brought that up. At first I wasn't sure if she wasn't using that possibility to just make a point. The first time she brought it up was when we were discussing his IEP (Individual Educational Plan). She layed out the areas she was going to work on. And we were talking about the need to change the IEP if we thought something wasn't working. So she said that she put this down to start with and that if we came to a time six months, a year (no real date given) and he made no progress she said that you can't beat a dead horse (not her exact words, but the same idea), if he can't do it, then he can't do it and other actions would be necessary. What those were I wasn't sure. She mentioned that our goal is for him to be able to communicate and that there are other ways to communicate other than verbally. WOW, did I hear her right? Like I said, at first I thought she may just be making a point, but she repeated herself at the end of our meeting. I have to say that through this all I have had a peace that everything is going to be OK. However, even though I know that peace comes from the Lord, I also know He hasn't specifically given me what that "OK" will look like. I have a peace that everything will be OK, not a peace that Jed is going to talk. Does that make sense? So when she made those comments I kind of started saying, Ok, Lord what does all this mean, why did she even have to bring that up?
So Jed starts therapy this Monday....woo hoo! I am excited to see what happens over the next few months. And I would be lying if I didn't say I am also a little nervous. Not overly worried or freaked out or anything like that, but a bit nervous. I really hadn't thrown in the prospect of Jed not being able to communicate verbally before. I kind of like having a plan and knowing what to expect. We have a plan, but we don't know what to expect. Time will tell. Now here's the thing. It drives my hubby crazy that I can wait very patiently to open Christmas gifts on time and not before Christmas. I also can wait patiently when I am pregnant to find out the gender of our child at it's birth and not before hand. But I am not feeling very patient with this at all. I kind of feel like we've been living in the unknown with Jed for a couple of years now. Granted we have been blessed to finally know what 'ails' him. But the very nature of his 'ails'...being neurological... make it unpredictable as to how soon or what course he will take. And I want to know now what to expect for him, for his future. But alas the Lord's grace is sufficient for the day, each and every day. I need to enjoy Jed, to work hard with him on the road to verbal communication, and let the results be what they will be.
It is late here and I need to get to bed. I am a bit worn out from the emotional stress of the day. Not to mention a needy baby thrown into the mix. He kept wanting to nurse all day...not a good sign. Could just be teething.......I am hoping it is only teething! Not to mention that it is very evident that we NEED to go back to eating mostly veggie like we were some 10 months ago. (Think lots of children complaining of tummy aches day in day out, multiple times a day...it makes one weary. And it is due to our diet, milk in particular.) We fell off that wagon long ago and we are truly reaping the consequences in many, many ways. But that will need to be addressed in another post for another day. My pillow is calling my name :-)
Wednesday, November 11, 2009
When I go out to take pictures of the kids I try to take a bunch, in hopes of getting one or two good ones. In the video I decided to put a bunch of those pictures together. In the first segment you will see Jonah having fun with the door, until he can't open it! We thought the course of each song was fitting to the pictures. Enjoy!
Sunday, November 08, 2009
We have been ‘borrowing’ our friend’s male goat. We decided to breed our two goats this winter. That way we will have our own supply of fresh milk come spring. Ohhhh, I can hardly wait! Coming home from soccer yesterday I was greeted with this male goat tied up to one of our backyard tress….that’s not where we left him! Apparently he jumped our fence and decided to ‘hang out’ with our neighbors goats….who are all female. And let me tell you….that taste you may get from store bought goats milk….it comes from the males! Seriously, that smell, is the smell of a male. We had read that if you don’t want that smell/taste, then you need to keep any males away from your females. I thought that was silly. That was because I was ignorant! I only just patted two small pat-pats on the top of this male goats head. After washing my hands in hot water and plenty of soap, multiple times, they still smelled like male goat! YUCK! That smell just sticks to you! So now I can totally see why it can affect the milk supply. Hopefully we will have little goat babies come spring :-)
I thought I would leave you all with the links to the two ACC devices we have been looking into. This one is called XPress, by Dynavox. The other is Proloquo2Go, used on the IPod Touch or IPhone. I need to get going. We need to get boys ready for church. Have a blessed Sunday!
Friday, November 06, 2009
Jed's speech therapist called to cancel the afternoon appointment. We will make it up next week. I was able to talk to her about my concerns of getting Jed an ACC devise that will meet his needs. I was pleased to hear that she does not agree with the new (to be) speech therapist's view. She said because of the severity of Jed's apraxia she foresees him being in speech therapy for the next five (or more!) years. She felt that it was very important that he have a way to communicate effectively in the meantime. It has been really neat to see the next 'level' Jed has taken with his signs and communication. He has known the signs for help, want, my turn and things of that nature, but has never used them on his own. Well just yesterday and again today he has used those...totally on his own, with no prompting. As a matter of fact we were wondering what he was signing as he has never signed those things unless we have prompted him. So imagine our surprise this evening when Jeremiah put a movie on and Jed was trying to tell us something, with 'words' and with sign. He made it clear he was unhappy about something. We figured out that he was signing, "don't like" for the movie!!! He didn't want to watch the movie Jeremiah had on the computer! This is amazing!!!!!! Jed has only used signs to label things. He seems like a new child to me as he is just now communicating not liking something, or trying to tell me this afternoon that it was "his turn" on the computer. He likes to get on Word and type in letters. So he signed, 'my turn' and signed some letters! Can you tell I am excited?!
I have other exciting news....well for me anyways. My sister has a new calling plan!! That means I don't have to wait till after nine p.m. or the weekends anymore!!! I remember one rough day, Jeremiah had come home to me being a puddle. After talking for a while he said, I think you need to call your sister. And I had to tell him I couldn't...she didn't have any minutes left (boo hoo). So when the phone rang this afternoon and her number came up I thought that perhaps something was wrong. Thankfully not so! She was just calling to tell me I can now call her any time :-) I truly pray that my girls will have such wonderful relationships with each other like my sister and I share.
I got our new spelling program, All About Spelling, in the other day. I haven't used it yet as I am 'setting it up'. They recommend that each student, or every two students have their own letter tiles. I didn't want to fork over the money for that, so I have been spending time making my own. I am really excited about this program as it will serve as our spelling and phonics program. I will continue to use Phonics Pathways as our learning to read program, but I think that the spelling will help with the reading. I was really disappointed in my lack of ability to use Spell to Write and Read. It was just too much for me. However I really liked their premise and ideas, just too much for my brain to process. Anyone who has the program or seen it will know what I mean. I mean they have seminars to better learn how to use the program! I was a little worried about that when I first heard about the seminars. But the person who told me about it said that it wasn't something you needed, just a bonus. Another person, who was in the field of languages, told me it was the best program out there. So I got it. And like I said, I really like the ideas. I really, really wanted this program to work. I have been holding onto it in hopes that somehow I can make it work. Maybe it's just the season I am in, but it has been sitting there, staring at me making me feel guilty! Ha! So when I read about All About Spelling, I was intrigued as they use some of the same ideas. But they lay everything out for you! I know that working with the letter tiles are really going to help some of my girls with their reading and spelling. I am hoping to start the program come Monday. By then I should be done....at least close enough to start...with the prep work.
The girls have their last soccer game of the season tomorrow. I am hoping they will all make it to their games. It seems we have a small tummy thing going on. Nothing that has stopped the household from running as normal, but they clearly are not feeling great. Moira is on the up and up, Isabella hasn't had it...yet, and Flannery just started. I am assuming Jed has it as well as he 'lost' his afternoon feeding. But this evening he has been fine.
Well the baby is asleep (he went to bed REALLY early), dinner is done, the kids are still watching their movie and I need to do more cutting (the letter tiles). After the kids go to bed Jeremiah is going to teach me how to edit movies.
We just had a short meeting with his future speech therapist. He didn't want to leave as she has a lot of neat toys :-) She thought we should stick with the very low tech talking board for now instead of trying to get something more adaptable. That was a bit of a bummer. Her thought was that our goal is to get him to communicate with speech. And of course that is our goal....just what do we do in the mean time? The board is useful in very specific situations. However if he was playing with blocks and using his board to communicate and then wanted something to eat you have to switch out sheets for him to use the board for the new situation. His current SLP thinks it is a great idea to get him a more advanced device. So, we'll see what happens. We need an SLP to work with us in getting a device for him. As per the rules of insurance. As anyone who has been looking into AAC devices knows, they aren't CHEAP!!!! We are talking some 7 to 8 THOUSAND dollars for one! I just found out of a cheaper alternative that uses and IPod Touch or IPhone. The plus for that is that is is small and very portable. However it involves some needed fine motor skills that I am not sure Jed has. There are ways to help with that, but even if we get this device we are still talking at least 5 to 6 hundred dollars. A far cry from the first option, but all of that will come from our pocket. We shall see. Jed's private SLP (the one who is on board with getting him a device) will be here in a couple of hours, and I'll talk more about it with her.
I will still try to work on those other videos later. I am actually excited about working on them because I get to learn how to edit videos, something I have wanted to do for a little while now.
Thursday, November 05, 2009
Got to go get stuff done. Cleaning and a visit from some friends are first up. Then I need to delve into their new spelling program, that I am really excited about. It came in yesterday. I spent last night and early this morning finishing up making extra sets of letter tiles, so that each child can have their own. Having their own was recommended, but at 14$ I decided to make my own. There are cards that I also need to make up on my own (part of the 14$), but those can wait. I'll let you know how it works out.
Sunday, October 25, 2009
So about that glitch.....Saturday morning I am getting everyone ready for soccer. The last thing for me to do is get Jed's feeding pump ready to go. So I got the pump in the backpack, filled the bag with formula and I turned it on so that I could prime it, which is the last step. But what's this? Where is the bouncing kangaroo, the flash of green, yellow and red lights, the triple beep? Surely I must not have hit the power button hard enough, so I re-hit it....nope, no beeps, no kangaroo, nothing. I was pretty positive that when I went to get his pump that I had to unplug it from being recharged. But to make sure I went and got the plug to plug in the unit to see if maybe the battery hadn't recharged. I go to plug the adapter into the back of the unit, but something funny was going on with the plug, it was all wobbly. I take a look to find that there is a piece missing from the unit and now the plug adapter won't sit firm to stay in contact with the unit to recharge! So later on Jeremiah rigs something up to get it to stay in there, but alas we now get the unit to turn on but with an error that won't let us proceed and it makes the machine power down! In case that was all gibberish to you, as I know I don't always make sense, in plain English: Jed's feeding pump is busted!!! Let me just say that this is NOT good!! With a capital N, capital O and a capital T. NOT good. We are still able to give him his feedings by doing bolus feeds. The good news is that as long as we take our time, he is keeping them down (a problem in the past). The bad news is that it takes me being *right* there to manage it.
Now the game begins to see how this will get resolved. His home health service says we have to contact the manufacturer to see about the machine's warranty. I can only imagine the possible go around we may have. So I am earnestly praying that this is resolved quickly, in a God way. Because I truly believe it is going to have to be a 'God thing' for this to get taken care of in a quick fashion. As it is it is past midnight and I am up because I have to give Jed his feeding bit by bit so as not to overwhelm his stomach.
We are also in prayer concerning his speech therapy. I have sent in the paper work some two weeks ago and we are still awaiting a call or letter that will tell us the next step. We really need to get Jed set up with therapy soon.
A praise though, we have found multiple sources for goats milk for the winter!! Our friend who supplies us with goat's milk for Jed has her goats dried up. Last year we had to buy pasteurized goats milk from the store, and even had to buy powdered milk (which did a number on his pump!). I was praying that we wouldn't have the same problems this year. And praise the Lord He has provided a couple of families willing to give us their goats milk, as they have not dried up their goats. Yeah!!!
So lots going on. I can't wait to show you the cute pictures we got of our farm outing. We were also able to obtain another memory card so that I can make those videos. It wasn't our camera that was messed up, just the memory card. Which is a relief. Memory cards are MUCH cheaper than cameras! :-) We will be borrowing this card until we can get our own. I am so thankful! Now I can show you all how Jed talks.
I need to finish up here and give Jed the last bit of his feeding so I can go to bed myself. I do have another interesting story to tell you all, but I will save it for later as I am too tired to type it out. It has to do with Isabella and a tummy bug. Very interesting indeed!
Tuesday, October 20, 2009
We had a pleasant day today. We got outside for some fresh air and a lot of dirt....a lot of dirt. So two muddy boys and two muddy girls got baths when we came in. I got a lot of my schedule stuff done, but still not finished. It was nice that when it was clean up time a few of the girls were pleasantly surprised when there wasn't much to clean! Yes, that is how it goes if you actually put things away right after you use them, and you keep little boys out of things :-)
Off to do more laminating :-)
Monday, October 19, 2009
Flannery's hair awaiting the scissors! Her hair has been difficult as it is wavy. Even her bangs have some wave in them, which always gives the appearance of it being unkept. The last time I cut her hair I put layers into it which really helped. So I was a bit nervous that she wanted a bob like Moira.
A side view of her lenghth.
Now the finished product :-) Her hair really was even when wet, but here it had some time to dry and it looks uneven....again the wave action. But she is very happy with it, and I think it turned out great.
I parted her hair to the side, which I think helps. Her hair is still only half dry at this point. It looks great this morning all dried.
Here is Moira's new look. I don't have a before shot, but I am sure there are plenty of pics in previous posts to know that her hair was LONG.
A side view. I think I snapped it at an odd moment...oops.
And the back. Her hair was all the way down to her lower back. I think I cut at least 8 or so inches off!