Recovery

Well, I am finally feeling better after my battle with the H1N1 virus! I actually got out for a couple of hrs yesterday afternoon. I am still very weak, though and I have a nasty cough. I think that the trick was getting that Tamaflu in me so early! The dr said that getting it in the first 48 hrs is the best time. Carl and Faith did NOT get it, thank the Lord! So we know that the medicine works at preventing it! We found out my sister is the one who gave it to me, her kids tested positive for it, too, but too late for meds. I have all the windows in the house open, this morning, trying to get the virus out of the house. I have been lysoling everything! Now if I could just get my strength back, I would feel nearly 100%! I better be by tomorrow b/c Carl has to go back to work and my week is going to be busy! My mommy is coming to visit at the end of the week, and we haven't seen her in months! SO I have to get the house ready and keep all of Faith's appt's too. Please keep me in your prayers as I continue to heal.

H1N1.......

I know that by posting this I may become a social pariah because everyone is freaking out about this......

On Mon. I started feeling like I was getting a sore throat. I felt a little weak and by Tues. morning, I knew I was sick. I had a raging fever and could barely get off the couch. So Carl stayed home w/ us yesterday b/c I was so sick I couldn't take care of Faith. He finally convinced me to go to the doctor. They recommended I be tested for the H1N1 virus b/c there was an outbreak in our area. So they stuck this HUGE swab up my nose about 5 inches and did a rapid test and sure enough I have it! I couldn't believe it! They put the whole house on Tamaflu as a preventative. I think Carl might be showing symptoms this morning, though. Faith seems to be fine, I just pray that she doesn't get it b/c it could be really bad for her. The whole house is quarantined until everyone who is sick has had no fever for 24 hrs w/o meds to bring it down.

A new week!

So I am dedicating myself to having a good week, this week. I have been so down in the dumps lately and having a hard time pulling myself up by my own bootstraps. Faith has been putting on a little extra weight over the last two weeks, we upped her Resource formula. Actually, I think we should have done it earlier in the summer b/c she had lost a little but I hadn't noticed. I am very pleased about that, except we have seen a few breakthrough vommitt accidents in the last few days, still trying to work out the exact right amount. I HATE transitions! BLAH!
OK, back to positivity! LOL! I got a new pair of GOOD clippers for Gandalf, this weekend, I have been waiting for almost a yr for them. They cut him down in minutes, instead of hrs! I got his whole body done in about 20 mins, that usually takes about 3 hrs!!!
We finally got the official results of Faith's cognitive testing on Sat. No real surprises but for the most part she was in the 19-22 month old range. They did say that she probably knows more than they could properly test her b/c of her poor expressive language development. BUT I choose to look at it differently b/c if they had tested her a yr ago, they would tested her out WAY lower! So WE know she has come so far in the last yr, and that's all that matters! I have begun to stock up on h.s.ing items for next summer. I know, that's a whole yr away but I am a big planner. We made a trip up to Brevard this weekend and to one of my fav. thrift stores, we found this tiny little plastic desk with a clip on tray and sides for $3! SCORE! Also some craft project books for preschooler with neat stuff to make like... sawdust play dough and homemade glue! FUN! Can't wait to do some of them, heck, for my own enjoyment ( not JUST Faith's)! We also found an old tape set of TALES FROM LAKE WOBEGON by Garrison Keilor... my all time fav. radio person! IF you don't know who he is, you should google him, he does a show on Public Radio called A PRAIRIE HOME COMPANION that I have listened to since I was Faith's age! ADDICTED, WE BOTH ARE! So please pray for me to stick to my positive regime this week, I need some good thoughts my way....

Ramblings......

When Faith was first born, after the cp dx and before all the other dx's, I thought I could just MAKE everything be normal (or as close as possible). For several years it seemed to work, but it seems like it has all caught up with me, in the last year. I have had a hard time associating with people, even close family and friends. I kind of feel like all I have to talk about is weird stuff that NO ONE understands. And it makes me feel weird. I feel uncomfortable and like I just don't want to be around anyone. I have had lots of people tell me that I just have to get out and do some things for myself....etc,etc,etc. But I just can't make myself do it. I wonder if any of you have struggled with similar feelings. Alot of the time I feel like the only person in the world, who feels like that, even though in my head I know it isn't true.
Carl has a good job, that is secure and very good to him but he also goes to school full time for the last five yrs. So he is starting back, next week... BLAH!!! So even though I am behaving like a recluse I miss my hubby. I know it's stupid to just want things to be normal because ..... what the heck is NORMAL? No one has normal! I guess that I am just struggling with the pressure and stress. I think how are we supposed to do this for the rest of our lives? How do you overcome things like this? I have seem others who have suffered much worse and come through it but I haven't figured THAT out! I don't mean to throw my own pity party here, but I guess I am.. LOL! I pray for God to give me strength and I know HE has in many ways but I just can't work out the severity of all this and all the permanance of it.

Nothing special just some thoughts

So I have been thinking about all of the people I have met since I got started blogging, recently. It's really facinating to meet so many people who often are struggling with similar circumstances with their children, or other major life changing events. Being a parent of a special needs child, can be a very isolating thing... you feel like no one understands, like you have been shunned, like people just aren't sensitive to your situation. The worst thing is feeling like you are the only one, b/c for instance, where we live is very rural and there is no good line of connections for families.

So I rely on meeting you guys out there to chat people up, find out what works for different situations and see how other families are dealing. I also noticed something else that has really bothered me lately, that kind of relates back to what I was saying about being isolated. There seems to be an epedimic of sorrow and suffering in this world.

Now, yes, I know that there has always been suffering and pain since man first sinned, but now that we are so "connected" by technology, you can see more of it firsthand. I think, selfishly sometimes, that my life is so hard and it's so unfair to see my only daughter suffer for the rest of her life. Then I see a post from a family/mother who is suffering with a child who has an incurable disease that will end their life. (example). It just puts a different perspective on things for me, anyway. I think that this world must look aweful bad to God, as He looks down here and sees all this sadness and suffering and pain. I think I am being selfish and that I should be grateful for the fact that my daughter is here with us now. I think it just seems like everyone is struck by something aweful at some time in their lives.

The worst for me, is seeing so many parents dealing with such terrible things having to do with their children. Because I know, that there is NO PAIN like watching your child suffer. No parent should have to see that. It is one of the worst pains and it just seems like there are SO MANY of us out there. I am amazed at how many other Faiths, Noahs, Elis, Maxs, Judes, Charlies, Elizabeths are out there. How can that be.....

FATHER,

PLEASE PUT YOUR LOVING HANDS OVER THE FAMILIES OF CHILDREN WHO SUFFER.
PROTECT THEM AND GUIDE THEM, GIVE THEIR PARENTS STRENGTH AND RESOLVE.
SHOW THEM THAT ONLY YOU CAN GIVE THEM COMFORT IN THE MIDST OF A TERRIBLE WORLD AND UNKNOWN SUFFERING. SHOW THEM YOUR MERCY, AS THEY STRUGGLE, AND PROVIDE THEM PEACE THAT ONLY YOU CAN PROVIDE. MAKE YOUR WILL AND AWESOME POWER BE SEEN IN THEIR LIVES AS A LIVING TESTIMONY TO YOU.

GIVE ME STRENGTH, LORD, TO BE A GOOD MOTHER AND EXAMPLE TO MY DAUGHTER.

AMEN.

follow ups

Well, I thought I had gotten my follow up post, posted, but something happened and it never did.

Our appt. worked out, after a late night call from the scheduling nurse. The phycologist agreed to see us on her lunch break... HOW NICE OF HER!!! HEHEHEHEHE we got our revenge in the end, we kept her for almost 2 hrs!! LOL!

They gave us about 50 pgs of materials and evaluations and suggestions for Faith. They did give her yet another dx... Cognitive disorder-NOS (not otherwise specified). Instead of a more socially unaccepted set of terms, which other drs' have suggested. They said that Faith was understanding way more than anyone thinks, that she probably could have been tested closer to her age range if she could express herself more and do more fine motor skills. Basically, she tested in the 20-22 month catagory. (She is 5 1/2 now). Which really wasn't too much of a surprise. They also said that we needed to get her into some groups with children her own age that were typical, developing children. They gave us a list of things to focus on and a list of tests that they want her to take next yr, if she can do reliable y/n type decisions.

We did get chastized a little in a paragraph... Let me defend us here, first. When she was testing, she saw a picture of a warthog.. she wanted me to tell her the sign. Now I FREELY admitt I DO NOT KNOW the sign for warthog! I know pig but not warthog!!!LOL! So in the summery of the test it was said that the parents needed to learn more ASL and keep way ahead of Faith in signing. Now, Carl and I have learned over 200 signs in the last 12 months. We try to stay ahead, learning a few each week and as she wants to know a specific one. But we have had no formal training, learning on our own, through books, internet, asl dictionary(that I carry in my purse, by the way!)!!! I felt a little dumped on! Anyone out there know the sign for warthog? I am serious here, people.
They also gave other suggestions, like if she sees a big dog and signs dog, I should say/sign
"Yes that's a BIG DOG~!" D_U_H! You'r kidding? Or when they were talking about sorting objects... After the child can master simple sorting like spoons and balls into two different containers, you can move to more complicated sorting like spoons and knives! YES FOLKS, THEY SUGGESTED GIVING MY S.N. CHILD KNIVES TO SORT!!! Carl and I couldn't stop laughing, it's going to be a running joke in the house now!
I guess we did get some good suggestions and an idea of where to start focusing with education. I am thankful for that! But most of the stuff was no big surprise for me. The woman did pay us a couple of nice comments, saying that we were the first family that she did not give a personal/family questionaire to, b/c we were so informed about Faith's conditions. GREAT, gee, thanks!

ARGGGGGG!

Ok, everyone, please be prepared because I am going to VENT!


So, Faith has been going to have some congnitive testing done, privately. We have had a series of 3 appt. w/ a "fellow" resident at Dev. Peds. Now, this person is leaving in a week or two, ending her residency. A few weeks ago, when we had our second appt., they called at the last minute and resceduled our appt.( the same day, just later in the day). Frustrating, yes, but I am somewhat used to dr's doing stupid stuff like this. If I cancelled an appt. w/o a 24 hr notice they can charge me a cancelation fee.(Don't recall the exact amount, somewhere in the $25 range)
Fast foward to 4pm today, I get home from therapy (being gone ALL day) and there is a garbled message from this same person wanting to reschedule our appt. that is tomorrow!!! Now, Hubby has already requested this day off, not to mention that she wants to reschedule so she can go to her own dr's appt! So I call the office about 4:10 pm, still well within business hrs, but guess what!!! She has already left for the day!! OF COURSE SHE HAS! No one has any idea what she wanted us to do, exactly, no one has ANY contact info for her, (What the crap?) and there are NO other dr's able to be found or contacted! Where are we here, people, don't business hrs. mean that you work? If you call, LAST MINUTE, and make a ridiculous request like that, shouldn't you make yourself available? How do you run a business, that obviously makes TONS of money, without having a plan for contacting dr's after hrs or during emergencies? The scheduling supervisor tells me that they are emailing her but she probably won't respond until tomorrow morning!!! AGAIN, WHAT THE CRAP? What are WE supposed to do, hubby take off or hubby go to work? Well, they don't know what to tell me.... After I loose my cool (just a little) the very nice girl on the phone offers to take my # and call me from her home if she hears from this dr. I AM THANKFUL FOR THIS GESTURE! Don't get me wrong! But for Pete's sake, two times in a row? Very unprofessional! I still don't know what we are supposed to do in the morning... if I do hear back, I think I am going to tell them that we are showing up for the appt and expect SOMEONE to be there to see us! ARRRRRRGGGGGGGG!

Thanks and Homeschooling conference adventures

First of all I have to plug, my friend, Amy of Inside Amy's World (http://amygenn.blogspot.com/). Amy, I am writing in yellow for Eli's giraffes! Amy was so kind to offer a prize to someone who commented on her blog, a few days ago. Well, turns out I won to drawing, now I say this b/c I know she suffers like alot of us with "is anyone out there" blogger disease. So if you happen here, go visit her. She is a mom of a very special little boy named Eli.

Now on to our latest homeschool conference, today. It was held in Charlotte at a very nice community college. There were very few vendors, maybe 12, compared to last weekend, over 100 easy! But this conference seemed to focus more on seminars and speakers, they had dozens. We found 3 good ones, that applied to us: H.S. laws in SC, H.S. methods and last but not least Unschooling special needs children, which had a huge crowd! We learned alot despite being bored in between the seminars. We also found a great third option group in SC, that should work for what we have been looking for. It is for unschooling, third option families. Very free thinking, open to alternatives, non conforming... which should be just perfect for us, with Faith's situation. The group is called...
www.schoolsoutsupport.com . We are very excited about the prospects. Anyway, that was our exciting trip out of state, today. Very educational!

TEN things about me

Here is a post in response to Lynnette Kraft's Dancing On Weathered Ground blog

Ten things about me!


1. I am a born again Christian, saved before kindergarden. I also attended a baptist church
school until 8th grade. Hated it then, but am soooo thankful now!

2. I Never wanted kids!!! I know I was crazy, I just didn't know what I would miss.

3. I love to scrapbook, for that matter, any kinds of arts and crafts. If I see it, I think I can do that for cheaper!

4. I am crazy over Alton Brown (ie: Good Eats, Food Network) He's a southern boy now, you know! Don't lie, girls, you know you'd love to have a guy who can cook!

5. I love the water, any kind of water: beach, lake, river, streams, creeks, I am NOT picky!

6. I am an old soul, described that way by my family. I relate better to older folks, enjoy doing things that my peers would be bored by (knitting). My mom says I was born like that. Most people my age(31) are already wishing for youth, but not me, I look foward to getting older! Am I too weird?

7. I am not afraid of any kind of animal except spiders! Snakes, bugs, birds, dogs, cats nothing scares me except those 8 legged little varmits!

8. I love ladybugs, my daughter's room is decorated in them. Even when they come in the house, I am ok with it. They just make me so happy, with their beautiful colors!

9. I have known my husband for half my life, in April. We were high school sweeties, the first day I came to school in 10th grade, he told his best friend he was going to marry me! AWWWWWWW, so sweet he is! He is MY soulmate, no doubt, we were meant for eachother.

10. I am mom to the cutest, funniest, sweetest, strongest little girl ever! She IS my reason for breathing every day! The world can be such a cruel place, but everything just seems right when I see that little face, every morning!

So, that's me in 10 or less! Tell me about yourselves!

Backyard frogs and frontyard pumpkins

Mountain Chorus Frog

(Pseudacris brachyphona)

I love living in the country! When I was young, I always wanted to live in a big city, but things change, especially after having Faith. This was my view of the world outside, yesterday evening. I don't know where this huge pumpkin vine came from, but it just sprung up almost overnight in our FRONTYARD! It's a few feet long, already! Carl was cutting the grass and agreed to leave it to see what happens. We tried growing them last yr, way away from this spot but they couldn't keep up with the drought conditions and fizzled out before they ever got THIS big. After all, who else is going to see it besides our neighbors who live half a mile down the dirt road! Seriously, ya'll, our town doesn't even have a stop light!

Then after dark, we had a sudden rain shower, I was getting ready to let the dog out to go pee and I saw this cute little frog on our door! We don't usually see too many frogs, mostly we see toads, but this little guy was just looking right in our house! Actually, he was pretty big for a frog of his kind, he just posed for his pics and didn't move an inch. I am such a nature girl, I love frogs! It just made my day, to have a visitor (who wasn't human!) and new life in our yard. So, do any of you live in the country? What things do you see out there? Any neat, unusual things? Who WANTS to live in the country?

PS. Thanks, Honey, for the cute title! I love you!

Feed me, Seymore!

My little firecracker never ceases to amaze me, when I think she isn't ready to learn something or she won't cooperate with her therapists on a new task. As some of you already know, Faith has a feeding tube, places 3 days after her first birthday. Feeding her was like participating in a marathon. Most days, feeding took up about 8 hrs! We would feed her about every 4 hrs and a feeding could easily be 2 hrs or more! At first we refused the feeding tube but after a yr of this we couldn't take it anymore. Well, the tube worked great putting weight on but alas, we did not continue to force the feeding thing, like we should have. So now, she doesn't swallow voluntarily. As I have talked about before, she spent 8 weeks in an intensive feeding program in Atlanta in 2007, but we had minimal success. So, after the dx of her tumor that summer we quit pushing feeding all together. We quit feeding therapy, stopped forcing food in her mouth, stopped oral motor exercises (exept speech stuff). Well, after all this time, she has suddenly decided that she wants to EAT!!! She has started begging for our food, putting her hands in our plates, pretending with spoons and plates(like she's eating!)!
Which brings me to tonight. At dinner, we started putting her back in her booster seat and giving her a plate and spoon. Tonight we put a few broken up noodles w/ sauce on her plate and she dillegently tried her best to figure out how to get noodles on a spoon and then take them to her mouth. Now, she still isn't swallowing anything, but this is such a BIG DEAL! She gets so excited if she gets a taste of something, anything! I tried giving her a taste of a green bell pepper last night and she went "MMMMMMMM" like it was ice cream or something! It was sooo FREAKING cute! Every time she got it in her mouth we would break into voratious cheers and dance all around the table, and she would just laugh and dance with her hands. I don't want to jinks us but maybe she will eat one day, after all. I must say, I underestimated her and had pretty much given up on eating all together. She likes to do that kind of thing and surprise me, alot. I guess I should not make such quick assumptions (well, not quick after 5+ yrs!). She even begged for my cereal this morning. She is so darn cute, I could never deny her! Way to go, Faithy, keep me guessing, I can take it!

Hotlanta, I mean Atlanta!

YEAH! Today we made it to our first homeschooling convention in Atlanta! We just found out about it yesterday, so I asked Hubby and he was like "Heck Yeah, let's go!". So we went! We got up at the crack of dawn and hit good ole I-85 down to Hotlanta! Now I will say that I hold few fond memories of Atl., after spending 2 months down there in 2007. Faith and I spent 8 wks at the Marcus Inst. for feeding school. I was miserable and lonely the entire time. Anyway, we made it there and spent the day. It was our first one, as I said, and we were totally unprepared for the chaos and people. It was shoulder to shoulder the entire time, (which isn't good for wheelchairs!). We did get to see alot of cool stuff, sat in on a great seminar about H.S.ing special needs children and met a really neat guy who started a therapy play center for special needs children. His daughter has sensory processing disorder and he wanted a place where children could come and just play on safe stuff that also provided therapy for them! He said it was the only one of it's kind in the U.S.! Very cool, we even got a free pass to visit! Can't wait to go. The seminar that we went to was great, this woman who put it on did work with h.s.ing families and w/ the schools to identify how to help s.n. children learn different concepts like reading, for instance. She was also a h.sing mom of 3, one with dislexia. She had alot of good resources and programs. She also pointed out some great things that I had been thinking in my head about Faith but wasn't sure about. Like about the importance of instilling lifeskills as primary learning and not making the academics the biggest focus. She talked about teaching your children to be functional adults who are pleasant to be around and can do things for themselves. I know I am rabbling but I was very excited. Anyhow, we are off to our second convention, in Charlotte, next weekend. Hopefully, we can be more prepared and not so scatterbrained.

Side Note: I just got word that Faith's wheelchair was approved by TEFRA and has ACTUALLY beenn ordered! After MONTHS of waiting and fighting and trying to get things through the system, we did! Her PT said that the mobility co. ordered it last Fri. and they said it should be in by the end of Aug.!!!!! I can't believe it! She said that "everything" was approved, which I hope means that they approved a tray for her chair, too. SOOOO HAPPY!