On My Heart

Grab This!

A friend of mine, that I only know through the Internet, has great need for prayer for her son. They are frequently on my heart and I pray for them whenever they come to mind. But for some reason today, they are weighing heavily on my heart, so I am asking for prayer for the family, especially Jeremiah, there two year old son.

Jeremiah was born in Taiwan, like his brother Noah, but unlike Noah, Jeremiah has a host of medical issues. The main one being, that he has severe brain damage and is not expected to have much of a life expectancy. Tami and Bobby knew Jeremiah had brain damage and cerebral palsy before they adopted him, they did not know the extent, but God did.

Please pray with me for Jeremiah, lift him up to the Lord and ask for His complete healing. Tami and Bobby stepped out in faith and brought Jeremiah home, let's pray for the witness he can be through a complete healing. But let us also pray that God's perfect will be done and all glory and honor are His. Claiming healing for Jeremiah in Jesus name!

Christmas Angel Tree

Christmas Angel Tree TwentyTen

CLICK HERE to Put the Angel Tree Bubble on Your Blog! Thank you! You know these special children are my heart! If I could, I'd adopt everyone of them. The joy that my two children with DS bring me is immeasurable! The simplicity with which they approach life is refreshing and pure. When they are happy there is no doubt, when they are sad it is evident, no hiding or putting on a false face, what you see is what you get, I LOVE that! I pray that if you cannot adopt a child, that you would at least sponsor a family that is in the process of adopting or sponsor a specific child so that they may be adopted. I cannot emphasize how important it is to help these children. If they are not adopted they will spend a life time in a mental institution or worse. PLEASE, I beg of everyone, consider, with an open heart, what God would have you do on behalf of the orphans of the world, especially those with special needs, they live in a throw away society. :o(

Wanna bet?

One of my on line adoptive mom friend's (did you get that?) is betting against her sister regarding football. Now, football, especially college, may not be your thing, not really mine, but adoption is! This little bet between sisters is a way to help Shelley raise funds to be able to bring her new daughter home. Shelley is a great lady who has a heart for orphans, especially those with special needs, Down Syndrome to be precise. For every entry, you get a chance to win an iTouch! So don't delay, get over there and get involved in this loving sisterly rivalry as well as a chance to help bring an orphan home to her family.

From her blog...

Monday, November 15, 2010

football, an iTouch and adoption
If you are not from the state of Alabama, most of this post is going to sound insane to you,
so just humor me and keep reading:


In the state of Alabama, the end of
November means that it is time for one of the biggest events of the year.
I’m not talking about Thanksgiving.
It’s time for the Iron Bowl.....

Anah got a note home...

Yesterday we got a note home from Anah's teacher. She refused to do anything all day, didn't participate and generally gave the teacher and aides a difficult time all day. She is like that all the time and she was wondering if there is anything we do that helps her be more compliant...HA! You've got to be kidding. That's one of the main reasons we sent her to school, she wouldn't do ANYTHING school wise for Mommy. Our hope was that she would be less resistant with school staff.

So today I went in when I dropped Anah off so that I could speak with the teacher. I explained a bit of Anah's past and the results institutionalization can have on a child. I also explained that we sometimes have to "restart" Anah on a task by taking her hand and guiding her. I also suggested that when the children are leaving the room that maybe one of her friends can take her hand and lead her, she's more receptive to other children.

I'm hopeful that some of these "tips" may help my girl adjust to school life and what is expected of her there and at home. If not, we will be considering a one on one aide to keep her motivated and doing the things she needs to do. We didn't want to start with a one on one aide, we wanted to see how she would do on her own and push her to do all that we know she is VERY capable of doing. It's all going to be under consideration and prayer. We just want to do the best for our little girl always.

Jonathan's behavioral specialist was here yesterday to eval. him while his speech therapist was here. He will make up a behavior modification plan that he hopes will help Jonathan not to hit his head so much, but he does it for MANY reasons, so it's not that easy. Let's just say, life is NEVER dull.

Tomorrow I'm going to be volunteering at Anah's school's craft sale. It's the major fund raiser for the school, I'll also get to help Anah pick her gifts that she wants for herself or others (like she'll pick anything, lol). I'll also get all the Christmas ornaments for the family from there, they're special and made in the ceramics area by the kids and adults that go to the school and work in the adult programs.

Failed Miserably

So much for my 31 for 21. Life got in the way, as it so often does. In any case I have a mini Anah update.

Since this is her first year in school she is having a lot of "firsts". We don't participate in Halloween (everyone has their own opinion about it, and I respect them, we however don't). We do however, participate in church Harvest Festivals and the like, where the children can dress up in costumes, just nothing evil, gory or scary. Today is Anah's first year participating in a Halloween event at school. Thankfully, it is really more of a Fall Festival than actually Halloween themed, pumpkins, cider, doughnuts but I guess there are going to be a couple of "not very scary, scary things", whatever that means. I doubt it will bother her, she's not easily scared, I just don't think she'll "get it" at all. Hopefully, she'll just enjoy her time with friends and seeing the costumes. Anah will wear her Princess gown, I made it easy, she just has to take her shirt and skirt off and then put the dress on, tights and shoes don't have to be messed with, neither does hair or anything on her head or face. Easy Peasy.

Next week is the schools annual holiday craft fair. This is their major fund raiser for the year (it's a private school for children with developmental disabilities). I volunteered to work Friday so I can watch/help Anah do her Christmas shopping, I don't know if she'll get that, but she does "get" shopping, so I'm hopeful :o) . I went to help with the craft fair organizing and such (or at least I thought) on Tuesday. Actually, it is a group of ladies (very elderly and OH so dear) that meet every Tuesday throughout the year and make a vast majority of the crafts that get sold at the fair. Only one or two of them every had any children/family attend the school, most just do it out of love and a caring spirit. Needless to say, I found myself recruited...it's only 9-12 on Tuesdays, and I DO have to drop Anah off in the morning anyway....(smile). Now I will have a new group of ladies to enjoy fellowship with and to have as mentors, now who benefits?? ;o)

Anah is talking! Ok, well, that may be a slight stretch, but she is babbling a lot, pointing to things and saying a clear word more often. The other day I was putting on her shoes, I always talk...I know, shocker, and was saying how I was tying her shoes, as clear as day she said "shoes"! I know some people may think...big deal, my two year old can say that, but for a neglected developmentally delayed orphan who didn't verbalize until she was 11, that's huge!! She really is trying to participate in conversations in her Anahese and is enjoying the engagement that takes place in a conversation. That's my Anah update for today.

Open House part 2

Tonight we had Anah's open house at school. Joey and Jonathan went with us, along with Anah of course. It took her a while to warm up, but she seemed to enjoy herself after a while. Of course she didn't "show" us anything, but we did see some of her work and met some of her other teachers and therapists. We were so blessed to be with so many special kids and their families, what a happy school environment my daughter is fortunate to be part of. Joey even noticed and mentioned to us, how special all the teachers/staff are that work with the kids and how they obviously care for them.

Anah smiled and spoke "Anahese" to a couple of her friends, that is such an improvement! Anah's speech therapist and OT did mention that she is progressing very gradually, but considering how her first 11 years of life were, they are pleased with her progress. They did mention she is "strong willed"...haha, Ya think??!!

After visiting with teachers, classes, etc. we went to the cafeteria for cookies and punch, it was about 8ish and a lot of the children were getting tired. One by one they started to do the "Downie Flop", that's what we call it when the kids just plop down and refuse to move. Motivating them to get up and leave can take quite a bit of ingenuity, I saw lots of cider and cookies being used, thank goodness there was plenty to spare!! lol

Open House

My big girl, Anah, will be having her first open house on Thursday. I'm not anticipating seeing much in the way of work (since she rarely complies...deep sigh), but I am anxious to speak to the teacher and aide to see how she is adapting to school life. She has not been having as many "happy" days with a "five" rating, the marking system that shows what type of day the child has had, she's been having "ok" and "threes", strictly middle of the road. I'm not sure why that is, it could just be that they are beginning to require more of her, and SHE does NOT agree.

Today when we got home from school Anah unbuckled herself and then refused to get out of the car. We have an automatic door opener on the van, which I opened, so all she had to do was grab her book bag and come in the house. She KNOWS what she has to do and I reverbalized it to her three times. I then went in the house. She sat out there for 15 minutes. I or my hubby watched her out the window the whole time, she refused to come in. My eldest son then went out and told her to come in, she came right in...OHHHH, that makes me see red, not that I let her know that. My son also got in trouble for going against what I wanted, but he wasn't downstairs when I said it, so he "might" not have heard me...sigh. Some days I feel like I'm going against everyone and that I'm being hard on her, but in truth I'm NOT going against everyone, Anah is just so cute and she's been through so much that the family just wants to care for her and love her, I get it, but in the end I know it's not in her best interests to not require her to follow the rules and directions. I guess I just needed to vent my frustrations, believe me, she's not the only non compliant child in the house! As a matter of fact, I don't think I have one! Calgon...take me away.

Playing Alone

Within the past couple weeks Jonathan has learned to play by himself and enjoy it. He's played with his drum for quite some time now, but that was more of a sensory thing to help with his frustration, his need for sound and vibration. Now he is playing with a ball, throwing it in his basketball hoop, kicking it, rolling it, just having fun. He is also playing with his "friends" (stuffed animals) and including them in his fun. He also likes the musical magnadoodle thingy, anything with noise is up his alley.

He has also really been enjoying Maggie (our dog). She and he play and chase each other around, roll on the floor, sit on the couch and he LAUGHS. I mean fall down, can't breath rolling around like a seal laughing. He has the biggest smile, it takes up his entire face, he's soooo beautiful! He blesses us so much, we can't imagine our lives without him he is a joy beyond measure and we thank God that He entrusted us with him.

Birthday Girl!

My darling Anah will be a teenager tomorrow! She's so tiny, about the size of a 7 or 8 year old, she weighs only 51 lbs and wears a size 7 or 8. She hates being the center of attention, so we are keeping it very low key. Just us, she doesn't like cake or sweets, so maybe we'll put candles in a pizza. We'll just give her a few gifts and she'll "bead" along with M and I tomorrow with her very own beads, string and bead box to organize them in. She loves doing things like that, sorting things into like piles, threading and unthreading beads and she thinks it's terrific when she does it along with us big girls ;o) .

M and I will be making more jewelry for some upcoming craft sales that M will sell her creations in. M does all the creating etc., I'm just the cheap hired help that follows her directions. I enjoy doing things like that, I just don't have the artistic gifts that she has. She is very creative in so many ways, it's amazing to watch. Today we went to the Ronald McDonald House Charities big yard sale. It was huge! We also went on Thursday and got some things, but today was 50% off, so we went back. She got a lot of things that can be made into other things..she has an eye for that type of thing. It was a lot of walking so I am tired out and will be off to bed. blessings one and all.

Still in the pink...

Anah didn't make it to school today, her eyes were still too colorful. Her eyes, and Jonathan's, are clearing up, but still not good enough to be allowed in school, so she was home for another day.

Joey and I had homeschool co-op today. I like having the time alone with him, we need it. It's different when I don't have the younger two with me, it's easier in a way, but I miss my littles :o( . I'm definitely a spoiled Momma, I get to spend everyday, almost all day with my kids, except Anah now that she is in school. But I do get to drive her to school in the mornings, so we have a 45min. drive, just the two of us. And if I pick her up instead of her daddy, I get it again. I talk to her the whole time about anything, nothing, or about the most important thing, God. I recite nursery rhymes, we listen to christian music or she dozes off, it doesn't matter what it is, we are together and that's what matters. She is "talking" more, not much can be understood, but every once in a while she says a real word. The other day she was trying to get my attention silently and I didn't see her, so all of a sudden she yelled "MA!", I turned around all surprised and she started laughing hysterically, she's such a scorch!

Jonathan has been doing well with his feeding skills for his therapist (NOT for Mommy or Daddy, can you say stubborn?) He looks like he is trying to be a "teacher" or "therapist" to his stuffed animals. He gets his two little chairs, puts them facing him and then puts his "friends" in them. He then starts talking to them. No idea what he's saying, but boy, does he tell them something important, he'll then start giggling, apparently they must be telling him a joke or something. He's so stinkin cute!

I Love Pink

Except when it's in my children's eyes...ugh, that's right, they both have pink eye. Worse yet, Anah is supposed to have school pictures tomorrow! Yes, there is a make up day, but she won't be in the classroom picture :o( . Her first year in school and she'll miss the class picture...stinks! I know it's a minor thing, but I was hoping to have her participate in all the "typical" childhood things, not just because she has DS, but because she spent the first 11 years in an orphanage. I know she doesn't know what she is missing and I also know that there will be many more years that she will have class pictures (Lord willing), but I just dislike for her to miss anything since she has had such a late start. I know, I'm a goof.

My little Jonathan does not think much of eye drops. He's had plenty of ear drops in the past, but this is the first (that I can remember) that he has had eye drops. I'm praying no one else in the house winds up with such colorful eyes.

Missed another day

I missed blogging yet another day...heavy sigh. Ah well, yesterday I was a bit under the weather. I went to the doctor (which I only do under duress) because I was having awful shortness of breath with wicked palpitations. I have a benign arrhythmia which I've had for many years, but sometimes it feels far from benign, yesterday being such a day. I also thought I might have pneumonia, since I aspirated lemonade on Friday, while laughing hysterically with my lady friends. The consensus was either a lupus flare up (which I knew) and/or possible cardiac issues, which I pray not. So if I'm not better by the end of the week I have to go back.

Today I had a chat with Anah's teacher when I dropped her off. I wanted to know how she was doing and if she was participating at all in class. She is participating on a limited basis, and is improving in her relations with her friends. Not actually playing or talking, but at least being part of her class. She is more interactive at home so I believe it is carrying over to home, which is all very good! I'm very pleased with her adjustment and hopeful that she will start to communicate with at least an occassional word soon.

I think Jonathan is feeling a bit less frustrated, he is laughing more (which now means "a lot") and appears to be hitting his head a bit less. He seems as if he is understanding that he can communicate with us in sign language and that we will understand that he is trying to tell us something. He is turning into a little ham and loves to use his charm on his family and therapists. He is a love bug and I for one love it (as does his daddy...awww).

Thankful for quiet

I'm not necessarily speaking about silence, although I do like a fair amount of silence, possibly more than others, I am speaking of the quiet that is "uneventful".

Our life as a family is usually quite busy, school, therapies, doctors, homeschooling, church and general family life, so when we can have a day of quietness in that respect, I grab it gladly. Yes, we did have church today, but since I'm not feeling up to par, Bob and I left with the two little ones after church, before Sunday school. Joey stayed for SS then went to a friends house for the afternoon. PJ and M relaxed a bit and celebrated their one year anniversary (of knowing each other). I came home and after lunch I took a nap...ah, how I love a nap! Jonathan had a nap also and Anah colored while Bob did some yard work. When I got up Bob cooked chicken on the grill and PJ and M made stuffing and corn. The kids played a bit then went to bed.

Yes indeed, I'm thankful for silent, blissful uneventful quiet.

Laughter and Tears

I've had a great weekend so far. Friday and Saturday I went to Women of Faith with my best friend and her mom. We stayed over night in a hotel, even though we live close to where WOF was held. It is our one night away without husbands or children. We eat breakfast out once, lunch at WOF and dinner twice. We laugh and cry throughout the entire conference and it carries over through our meals and our time in the hotel. My BFF and I need very little encouragement to do either, we both LOVE laughing and being goofy as well as enjoy a good cry and are very empathetic to others.

Steven Curtis Chapman and his wife Mary Beth were there Friday night, they shared about the loss of their daughter Maria to a tragic accident two years ago, as well as the journey to recovery they have been on since that time. They are both open and honest, sharing their grief and joy, in the hopes that they may be able to minister to others through this tragedy. I don't think there was a dry eye in the auditorium. Patsy Clairmont and Anita Renfroe had us laughing until our sides ached and we were not only blessed by the music of Steven Curtis Chapman, but also the music of Mandisa and Sandi Patty, boy, can those ladies sing!

I'm tired out now and ready to go to bed early since we have to get up for church early. I plan on having a wonderfully lazy day Monday since Anah doesn't have school and Jonathan doesn't have therapy. The kids did well without Momma for a couple days and my dh appeared to have survived just fine, although he said he missed me....awww, isn't he the sweetest!?

Pickles, day 6

Well, I blew it, forgot to blog two days running! Wish I could say I had a great reason, but I don't, just have a rotten memory is all.

I may not a blog on Friday, as I will be away at a Women of Faith conference. My best friend and I stay over night on Friday so we don't have to drive back and forth, not that it's far, lol, but it's an excuse to get a break, so we take it! This year R's Mom is coming with us, I'm sure it will be a blessing for her. I feel a bit better leaving the kids with my dh for two days since he'll have reinforcements in PJ and M. PJ will drive Joey to and from co-op on Friday while Bob is driving Anah to and from school, Jonathan will stay home with M.

Today I went into Old Navy, they had toddler T-shirts for $.47, half off of that, I got 18 of them for $.23 each! You can't beat that! Our homeschool co-op does Operation Christmas Child as a community service each year, so this year our donations will include flip flops ($.50 each), T-shirts and toothpaste (which I also have in abundance), along with our usual notebooks, pencils, crayons, toys etc. Each child packs a box for a child the same sex and age as them, this way they can relate to what their Christmas Child may like. Joey will do 3 boxes, one for Anah and one for Jonathan, even though they no longer go to the co-op, it's a tradition (one I like to keep).

Joseph is majorly struggling with Spanish and Science this year...ugh. We are doing it through co-op and it is a different curriculum than the ones he is comfortable with. To a kid with ADHD and several other diagnoses, change is not easy OR welcome. We have had a battle the past couple days, but I know I will prevail. He just has to realize that I will not back down and let him just "quit" like he would like. We have made a commitment to these classes and he also needs these classes for graduation, so it is not up for debate. I pray that with mine and his older brother's help, he will understand what he is to do and adapt to the different way in which he needs to do this work.

I guess this post wasn't much on DS, but it does relate to our family and we are all involved with DS in that way.

I'm so tired lately...the early morning drives to bring Anah to school and insomnia don't mix well. Ah well, I'm off to at least go rest. Have a blessed night.

Day 3 of 31

Pure joy. When my kids start laughing over nothing it brings pure joy to my heart. Whenever anyone laughs it makes me smile, but when my kids laugh my heart automatically lightens. My two youngest especially bring a smile to my face, sometimes even tears of joy. When I think of the rough start each of them had it blesses me to see them laughing and giggling with their siblings or dogs or even with a toy or book. Their joy is contagious, anyone that can resist it must be very hard or very sad.

Anah loves to play hide and seek with a blanket or jacket. She thinks it's the funniest thing when we "look" for her when she hides her face. Even though she's almost 13 she never developed that stage of development in the orphanage, so we go through all the "baby" stages now, progressing slowly and hopefully filling in the gaps.

Jonathan laughs hysterically when Maggie (our dog) walks past him with her tail wagging. He grabs for her tail and her back legs, I'm not sure if it's the feeling of the fur (Mr. Sensory himself) or the movement, but he laughs so hard he falls down rolling on the floor. And our wonderful dog walks over top or near him, so that he can grab her tail. Apparently she can't resist his laugh either :o) .

Day two and I almost forgot already!

Mind like a sieve, I almost forgot to blog today. PJ and M. have come back to NY to live, so are staying with us. We now have a full house, four adults, three kids and three dogs I know a lot of you have much larger families, but we're pretty full, not that I couldn't find room for a couple more kids with DS ;o) .

Bob and I went to our Pastor and his wife's son's wedding. It was so sweet. Two young people who where homeschooled, met, courted and now married. I cried from the minute she walked into the church until the minute they walked out as husband and wife, of course anyone that knows me, knows that my water works work pretty well!

PJ and M watched the kids, so Bob and I had a day without kids! I can't remember the last time we did that. We then went out to dinner, just the two of us, it was a nice break and the only meat I cut was my own! We are planning on doing that more often, now that we have built in babysitters :oD .

Anah's fever broke last night and has only been very low grade today. She is acting fine, eating and drinking, so as long as she is still ok when she wakes up, she and I will go to church with the rest of the crew. The kids are all happy to have their oldest brother and his fiancee home, they love them dearly.

My day's tidbit regarding DS is this: Children with DS are prone to having sensory issues. Jonathan was hypersensitive when we first brought him home. He now can tolerate his feet being touched (sometimes), can wear socks and shoes (until he's in the car) and can touch most textures of food. He can now also eat most textures, but his least favorite is crunchy dry food. He is finally starting to hold a spoon and cup to feed himself, he used to drop or throw the spoon or cup before, almost like it burned him to touch them. He can pick up some foods with his hands, but often winds up throwing that and then hitting his head in his "stress mode". With Jonathan we take all his sensory issues very slowly, he won't have it any other way ;oP

31 for 21

Yes, it's that time again. October, Down Syndrome awareness month. And to honor that, I will be attempting to post all 31 days in October, as I have the past two years I believe.

Posts will be my randomness, but I will also try to include something about DS each day, of course that isn't difficult since two of my darlings are chromosomally enhanced!

Please feel free to ask any questions you may have, I will answer most anything.

Today my little girl spiked a fever right out of nowhere! She was home from school about 1/2 an hour, when all of a sudden she started getting really cranky. I looked over a couple minutes later and she was crying! This girl rarely cries, so I knew something was wrong, I felt her head and knew just why she was so miserable, she was burning! Of course, I don't have a themometer that works worth a darn, they all give different readings, but let's just guesstimate she was between mid 101 range to 102 something. She refuses to take any meds, so I have to sneak it in stuff. I put Motrin in her juice, which she didn't want to drink...most definitely not like her. I held her and wiped her tears for about a half hour, coaxing her to sip her juice, finally she had it down. Within an hour she wasn't any cooler so I piggy backed Tylenol, finally after about 45mins. her temp started to come down.

That's one thing I feel burdened about, is her lack of communication and her inability to let me know what hurts her or makes her feel sick. No education, institutionalization, DS and autism all add to this situation. So, I hug, kiss, rub and love her and try and make her feel better. If she gets no better, she will visit the doc. on Mon., I'm hoping it's a virus and leaves her as quickly as it came.

School is going well

My darling daughter is doing so well! She is more interactive at home as well as verbal (babbling). She is initiating conversations (we have no idea what she is saying, we just go along with it ;o) ), and is very animated when she is telling us all about it, lol. Like an infant, she is going through the babbling stages first, I am hopeful meaningful words will follow. When she does say an occasional word, it is as clear as day and you better be paying attention or you'll miss it. One of the teachers aides in her room is named Rick, last Friday she said his name THREE times! She's never said Mommy or Daddy, but she says his name, Jonathan, Madison, Maggie, stop it and shut up (I know, of all things, she had to copy what daddy says to the dog when she won't stop barking...sigh). She doesn't say Madison or Maggie clearly (the two dogs), but we know that is what she is trying to say.
This morning she got out of the van and went into school with minimal cues and no attitude! I'm soooo relieved! Even though we knew this is what was best for her and it was what God wanted us to do, I was still so hesitant. I'm blessed that my fears were unfounded!
We will continue to drive her to and from school, 45mins each way, that's 3 hours a day in the car and that is only if traffic is moving smoothly, which is rare.
I have to confess to being exhausted. I'm NOT a morning person and I'm doing the morning run. I chose this since my hubby is less of a morning person than even me, which is HARD to believe! He has the afternoon run. I've been going to bed early, 11ish and getting up at 6:30, you'd think that would be enough, but I guess my body's alarm clock, and my lupus, don't agree. I'm already trying to plan my nap, lol.
Joseph has started his work at home. He is doing well, but is having some difficulty adjusting to the increase in work load that comes with being in 8th grade. This year he is also taking a foreign language, Spanish, through co-op. He has quite a bit of work in that each day and it isn't on the computer, so he is struggling. I'm glad that more of his work is starting to be in book form, he needs to start adjusting to this so he can handle college.
Jonathan is doing well with all his therapies. He has 11 visits each week, so we have quite a bit of schedule juggling to do, but it's worth it. All his therapists have seen an improvement with him since the spring, so I guess we must have been doing something right over the summer!

Day two

Anah did well today. I am so very hopeful for her. She seems to be having fun with her new friends and is getting more comfortable over all. This is a pic of Anah last August...what a difference a year can make!

Diane, I am anticipating homeschooling Joseph until he graduates high school, he does not do well in school, he does VERY well at home, so home it will be. Jonathan is being homeschooled this year as well as all his therapies being provided in the home. We will pray and seek God's guidance regarding where we feel Jonathan will grow and benefit the most next year, we do not have a strong feeling at this time one way or the other. We do evaluate each child throughout the year and in anticipation of each school year. Each child is different and will be treated that way, no matter what the cost, inconvenience or opinion of others in regards to our decision. Not that we don't value others input, we do, at least from people that REALLY know us, but the unsolicited opinion of others, in regards to what is "best" for our children can really get under my skin. Not that anyone has given us any lately, but we have had more than our share in the past.

First Day of School

Today Anah started her first day of school ever! She never went to school in VN and I homeschooled her the last year and a half, so this was her first day of nonmommy school! I was so concerned that she would feel abandoned again, like she was in the orphanage at age 4. I guess the year and a half home and her ability to comprehend have shown her that she is safe and secure with us! She did start to cry as I was first leaving (to wait in the hall and see how she would do without mommy), but she quickly stopped once I was out of sight. I explained to her that she was going to stay to play and learn with new friends and that Mommy and Daddy would pick her up later in the day, after lunch time. After half an hour of hovering in the hall, I left (after checking with the teacher for the third time ;oP ) to make sure she was doing well and letting the staff know I was staying in town for the rest of the day in case they needed me... ok, so maybe mommy was more anxious than Anah, lol. We live 45mins-an hour away from the school, so I didn't want to be too far away. Bob and I have decided to drive her and pick her up every day. She could have gotten bussed, but she would have been the only student on the bus and since she is nonverbal, we didn't feel comfortable with it. Let's face it, we weren't even fully comfortable sending her to school, even though we know it's the best school for her and we were blessed to get her in there.

We have been entrusted by God with our wonderful children and we take that responsibility VERY seriously, we discuss, research and PRAY and only then decide what we feel God would have us do with each child and their abilities and needs. I am praying this will open Anah's communication up and her independence. She is so capable but has such orphanage behavior that she is fearful to do things by herself for fear of getting in trouble. Here is a pic of Anah as M. and I drove her to school. Before we picked her up I drove home, dropped off M. so she could watch Jonathan and picked up Bob. I did tell Anah Mommy AND Daddy would pick her up, so I wanted her to know I was telling her the truth. The teacher and aides said she had a great day and had lots of fun!!! YEAH, Mommy and Daddy were so excited to pick up their big girl from school!! We were so relieved she had settled in and enjoyed herself, Praise God!

New school year and more

We're going to be starting a new school year in a few weeks so have been busy getting things in order. As usual things always seem to fall apart when you're trying to get things together...sigh.

Jonathan of course has a raging ear infection complete with draining blood. The usual antibiotic ear drops didn't touch it, so we brought him to the doctor who ordered oral antibiotics and a recommendation to see his ENT doc. Off to the ENT only to find out Jonathan has a ruptured ear drum and the tubes are out of both ears, great! He's now on different ear drops and the oral antibiotic. We have to wait until the infection is gone before we can schedule the surgery to get the tubes put back in, that will be surgery #3 for the tubes, ugh. Follow up with the ENT on the 30th.

Anah will be getting her school physical that day as well and be starting school the next week. I had her intake appointment with the school this week. I'm sooo excited about her starting there! What an awesome place for kids with developmental disabilities. The environment is a total submerging in language/speech. Even when they aren't having speech therapy they are having speech. The entire room is geared to that, as are the teachers, teaching assistants and 1 on 1 aides. They all use sign as well as verbal speech and picture cards for everything. That may not seem so unusual in younger grades, but Anah is going to be 13 in Oct. and they still do it in her class. She's ungraded, all the classes are, so they are assigned by their age. There is one class for each two years of age, so she'll be in the 12-13 yo class. Each child gets work at their level, whether the child is nonverbal or can read almost at typical age level.

I got to meet her teacher, a really pleasant happy lady, I'm sure Anah will not feel threatened by her, at least after a couple days :o) . I also got to meet the TA and some of the 1 on 1 aides as well as some of the children that will be in her class. The children were in their summer session, not all go, but most do, I'm pretty sure Anah will go next year as well, at least for part of it. I was blessed to get to speak with the school nurse, the school social worker and several other staff members. No matter what age of student (5-adult) walked by any staff member, they all knew the student's name and addressed them individually, it was awesome!

I have a few school supplies for Anah, book bag, lunch pail and some clothes, I still have to get a couple more outfits and shoes. We are still trying to find out how we get paid for mileage reimbursement, since we plan on driving her to and from school daily, but our biggest issue is we don't have a car that runs well! UGH!!! We're down to one car and that one is having transmission trouble! So please, pray that God will provide a means for us to get a car so that we can drive Anah to and from school and to get back down to PA to finish up our "family crisis" that we have been dealing with since the spring.

Joseph has had a boring summer pretty much, except for a few weeks here and there, that was mostly because we were in PA for a most of it. The past five days Joseph has gotten to be with a friend of his who has moved out of town. Joey got to go stay with him, it's been a real blessing for him and his friend. Since we got to go back to our church as well (which I can't even tell you how much we have ALL missed it) he got to see some of his other friends too, so that was encouraging for him. When we go back to PA we are hoping to go to Knoebels Grove, an amusement park near our cottage. It is one of the few that I know of that the parking is free, to get in is free and you only pay for a wrist band if you want to ride the rides OR you can buy a book of tickets, which are good year after year if you don't use them. I love going there because I don't ride any rides and neither does Bob. The little ones only go on a few, but Joey will ride everything, so it works out to be a very economical fun day for us all.

I have to confess to being warn out. As tired as I am I still am not sleeping very well, I can't stand that! Bob is the most wonderful husband ever. He is so supportive and helpful with the kids, as a REAL man should be, he is such a blessing to me. He lets me nap whenever I'm tired and does all the housework that hurts my joints and back...yes, he's a dream come true! My back has been all out of whack, I got to the chiropractor once since we've been home, he told me I needed to go a couple more times to get my back into alignment again. I know it's real bad when my right arm is numb, the migraines won't quit and I can hardly move my left hip, which is where I am now. Hopefully I'll get back at least one more time before we head down to PA.

My parents had their 50th wedding anniversary party last week. What a blessing it was. To see two people still so in love after all that time. To see what a true marriage is, one that lasts through the good and the bad, that is an inspiration. My Mom's sister and her two daughters came down from Canada and my Mom's best friend from Scotland came to celebrate with us all. My parents got to spend the weekend with my aunt and cousins and got to spend four weeks with Mom's friend from Scotland. We all enjoyed being together to honor Mom and Dad's years of marriage.

I guess that's it for our updates, it's been a bit of a mixed up type of update, but then again, that's how my mind works I'm afraid. Blessings one and all.

Insomnia Strikes Again

It's almost 4:45 am and I'm still not tired...sigh. After I write this post I'm going to go to bed anyway, I'll at least get some rest before the kids get up.

Today M. (son's fiancee), Joseph and I went to the local library near our cottage. I got a couple children's DVDs for the kids to hopefully teach them some sign language. We left our Signing Times DVDs at home, they don't have them at our local library here, so I got the only two they do have. We'll see what they look like later today, after they wake up.

M. got a couple books, one on how to teach yourself to knit. I haven't knit since I was young and I didn't cast on/off or decrease or increase the number of stitches, so I really am no help to her.

Joseph got some books on Mythology and Medieval Weapons, he wants to write a book/cartoon series. Anything to get him to write both for his creative writing needs, but also for his penmanship. He is going into 8th grade but writes like a first grader, I should say prints, he can't do cursive at all! He has a learning disability that makes it difficult for him to write mechanically. He is capable of reading at a 10th-12th grade level (some college) and is intelligent in Science and History, but ask him to write, spell or remember where he put anything...well, you might as well forget it. But, he wants to write this book, so I gave him a composition notebook and told him to write it down. He was going to try and remember it all (which is NOT beyond his abilities), but I told him to get it down on paper was a much better plan, he's willing to, so I'm hopeful. He has taken the summer off of homeschooling, but has read all summer long. His behavior has caused us many challenges and much grief this summer, so he has been grounded from all forms of electronics this entire summer. It didn't start that way, but it has continued to progress that way. It's difficult to be that consistent for that length of time, it feels like cruel and unusual punishment, but believe me, it isn't and hasn't been, it's just the consequences of sinning and poor decisions on his part KNOWING ahead of time what the consequences will be. He has been seeing a counselor and will be seeing a psychiatrist to see if there is a medical reason for his behavior which may require medication, either way he will continue counseling with our pastor (he is also a christian counselor) since it is a sin issue bottom line.

Jonathan has turned in to such a Momma's boy...oh my gosh, he won't leave me alone for a second. I love him dearly, but I don't get a second to myself the whole day! If I go out of sight he starts banging his head. We still have the helmet on him and have tried all kinds of behavior modifications, without success. He will be having a professional evaluation by a behavioral specialist some time in September. We have also started doing brush therapy which works while we do it, but doesn't last long.

We also got approval for Anah to go to an autism play day type thing at our nearby college twice a month. We'll see how it goes, it's totally voluntary on our part, nothing she is committed to, but I hope it may help her with initiating play and imaginative play as well.

I still haven't sent in my end of the year fourth quarter reports for Joseph and Anah, I have to get on that, as well as my letter of intent and IHIP for Joseph for the upcoming school year.

Oh, and did I mention that it all is on my lap top that crashed yesterday?! We brought it to a computer guru and the hard drive has crashed...ugh, so we either have to buy a new hard drive and get it installed and have the files transferred, or get a new lap top. Of course money is a huge consideration, so it's on hold for a while until we can find a good deal on a hard drive and go home and get my operating system CD for my computer. Life is never dull in our household, of that you can be certain!!

Gone For So Long

Yes, I have taken a long time off of blogging. I have continued to follow my friends blogs, follow along on facebook and through emails. I can't say that I'm back, because I don't know if I am. We've been going through a lot as a family, nothing I can really share out of respect for my children. We are all physically well so I'll leave it at that. Prayers are always appreciated.

Some news that I can share, is that Anah will be starting school this Sept. She's been home for a year and a half now and has grown physically and appears to have grown emotionally, however academically and verbally not so much. I homeschooled her, like I do Joseph and Jonathan, but she is more than a little resistant to my teaching her anything. To say she is stubborn is NOT an overstatement. It is much more than strong willed, believe me, after five other children I believe I know the difference. I would have happily gone on trying except after seeing her with other children that have DS. She absolutely blossoms! She chatters, laughs, interacts, pretend plays and just all around has a good time. She does NOT do this with any other children, even her siblings, not to the same degree. And it is not just one specific child with DS, it has been any she has met! This is what prompted me to check into the private school near us that is specifically for children with DS. I know I've posted on this before, but I do believe that this is causing me some sadness. I only want to do what is best for her, as I do with each of my children, I guess I'm just sad that I wasn't "the best" in her case.

Jonathan will be getting almost double of all his therapies when we start back in Sept. I'm anxious for that to start up again too. I guess I'll just be glad to be back home and back into some kind of routine. Although we've been at our cottage all summer, it still isn't home and I miss our church family something fierce!

We just finished our 10 days of campmeeting. That was awesome, but I just didn't get the same rejuvenation that I usually do, which is unfortunate. I think it is because I'm feeling distant from God right now. Oh, I know He is always with me, He is faithful, I still pray and converse with Him daily, the distance is my doing. It's not intentional or any "wrong" that I perceive God having done or allowed, it's my lack of "feeling" at the moment. I know love is not a feeling, neither is faith, it is a choice; and I choose to love God and believe in God, it's just my feelings are a little flat right now. I know I will once again burn with a deep passion for my Lord, it's really still there, I just can't seem to get it to the surface. I know, I'm rambling, I'm not sure if anyone will even read this since it's been so long since I've blogged, but it feels better just putting it in writing, admitting it to myself and to others. God has known it all along, it's just my realizing and admitting it that is the first step in my returning to a closer walk with my Lord and Savior.

All right, enough of my ramblings, it's 4:30 am and I have to get some sleep before the kids get up...insomnia stinks.

Loooong Time No Blog

Yes, I have been MIA. People that know me personally will know why I have been missing, others...just know we are all ok health wise and we will be spending the summer in PA. I am unable to share the reasons, since they are not mine to share, but it is something that will keep me busy the entire summer. I will try and blog more, anything would be more compared to what I've been doing...lol.

Anyway, the thing that got me back blogging is my friend's awesome give away. It is for some great products that she has found. Go to her blog and watch the videos of her boys learning from these books. Only 1 Mom

I love the Preschool Prep Package.

Less Poop

Well the poop isn't gone, but it does seem to be slightly less in frequency and amount. Two out of his three stool cultures came back and they were negative, so I just don't know. He's still happy, still eating so I guess I won't concern myself too much.

All of a sudden he has figured out that if he signs it actually means something, so he's been signing up a storm, he's so cute and so smart!! It's amazing, a little light went on, hooray. His helmet is working when it's on, beautifully actually and he keeps his glasses on all the time too, but as soon as that helmet is off so are the glasses and the head hitting starts...I pray it will stop in time altogether.

We had a dinner for my dtr. tonight, in celebration of her graduating college and getting a new job in her career field. My parents came over and my son and his future wife came home from college for several days. It was nice having everyone together, but boy am I exhausted. We had church all day til almost 3, Deacon's meeting, then I had to run to the store to buy the ham for dinner as well as other odds and ends. We rushed home and I got the ham in, made two apple pies from scratch, made 5lbs of home made mashed potatoes, peas, corn and dinner rolls and finished cleaning the house, all by 5! Now I'm draggin my waggin ;o) . It'll probably be a 1/2 day in bed tomorrow without much activity after that...ugh, the side effects of lupus, ah well, praise God I'm still moving and able to do it.

Well, I'm getting the kids ready for bed now then I don't plan on moving after that. Just wanted to give a brief update on the poop situation.

Oh POOP!

And plenty of it! Warning, you may want to turn back now...you have been warned! My poor little guy has had diarrhea for over a month now! At first we all seemed to have a little stomach bug, no big deal, we all got better, except for Jonathan that is. He kept on pooping every time he ate, drank and would wake up in the morning with poops. He wasn't uncomfortable, as far as we could tell, no fever, still had a great appetite, drinking plenty of fluids, wetting his diaper by the gallon, so I figured we'd just ride it out.

He's lactose intolerant, he drinks Lactaid, but has always tolerated yogurt without difficulty and had it every night, with probiotics, to keep him regular. So I cut that out, figuring he may be increasingly sensitive to any lactose since his stomache bug...didn't help. I had him on a strict BRAT diet for a couple days, didn't slow him down at all, not even a little. I always cut his juice in half with water, he drinks only that, Lactaid and water, never any pop or sugary drinks so it couldn't be sugar, corn syrups, or any artifical sweeteners.

All right, so it's been a month and nothing has worked, so I called the doctor today. She checked him out, he's gained a pound since November, not a lot, but at least he isn't loosing weight with all the diarrhea. No signs of dehydration, which I knew, no obvious distress, tummy is soft and she asked all the questions that I'd pretty much covered up above. Oh, and did I mention?, the smell can empty a room! As soon as he's "done" there's no doubt what he did, the whole house reaks! We don't even keep the diapers anywhere in the house, they go straight outside, even during the blizzard, THAT should give you a fair idea of just how ripe our little guy is. WARNING, POOP AHEAD>>> Anyway, after he poops tomorrow morning, which he will, I get to play in his diaper to collect enough for a sample for the lab to test for any number of things...sigh.

So tomorrow morning, when you're sitting drinking your morning coffee/tea/soda, think of me won't you? And try not to laugh too hard.

Much Better Today

My little princess is doing so much better today :o) . She didn't like taking her pain meds. , the Motrin and Tylenol were too syrupy for her I guess. So Momma had to hide it in her fruit juice. I don't like giving meds. that way, but I knew she had to be in pain, so that's how she got it. She was so much happier today, I only gave her the Motrin this morning and before bed. It's so nice to see her smile, she has a cute little smile now that all those bad teeth are out of her mouth!

She and Jonathan were "talking" today, they were talking to each other and the dog, and it struck me as so funny. I was so happy that they were trying to talk and communicate I was just sitting there smiling away like they were having a conversation of the deepest order. Then I pictured if someone came into our house, they would see this crazy Momma, smiling at these two adorable children that were "talking" (jibber jabbering) to a little black puppy, they'd think we were all certifiable!

Anah's Oral Surgery

After a frustrating year of fighting to get Anah's medicaid straightened out it finally was fixed two days before her surgery! This would have been the third time I had to reschedule her surgery due to the incompetencie's of many people, who shall remain nameless and, who blatantly lied time and again. This week I spoke to the supervisor's supervisor, the supervisor, the case worker, Anah's service coordinator and the billing lady at the hospital. I basically told them they had better get it straightened out because Anah WAS having her surgery on Friday (today) and I was not going to pay the $1500 copay since I had prior approval from her primary insurance and medicaid was supposed to pick up the copay.

I really am a very easy person to get along with and I have great patience when it comes to health care and billing, after all I am a nurse and was a community health nurse for years, so have tons of experience. But a year is way too long and it wasn't a matter of anything other than laziness on other peoples parts, THAT is one thing that doesn't fly with this momma bear!

So, my little girl finally had her oral surgery she needed. Now, you have to remember, she hadn't so much as seen a toothbrush in her 11 years before she came home and her teeth were in a bad way. We had brought her to the dentist, but she was very uncooperative so rather than traumatize her, when they wouldn't be able to do much anyway, they decided to wait for xrays and the cleaning and do it all at once when she was out.

This is what they found: had to yank four permanent teeth on the bottom, (the two incisors and the two six year molars), got stitches, sealed all the teeth biting surfaces, pulled the two baby incisors and filled three or four cavities on other teeth, crowned one, x-rays to all and a cleaning. She has severe periodontal disease that is irreversible and will probably loose the teeth on the bottom within 5-10 years. She will then have the option of dentures, IF she will wear them, we will cross that bridge if/when we come to it.

She was one ticked off little girl when she came out of anesthesia!!! I expected it, since I've seen it plenty before, but the nurse felt bad for me, lol. I didn't feel bad for me, I just felt badly for my pumpkin since she was crying and didn't know what was going on. After she threw up all over mommy she felt much better ;oP . She was sick a couple other times on the way home, but she's settled down now. She is drinking her green tea and fruit juice, so life is good. She is also taking her Motrin and I guess that is doing ok for pain control since she appears comfortable and isn't moaning or crying. That's what bothers me the most about her being nonverbal, I don't know if she is in pain or not feeling well. I have a good idea from her facial expressions and body language, but it would be helpful if I knew exactly what was causing the discomfort. I just have to trust my intuition that God has given me.

I am hoping she has a good night and forgives her momma come morning ;o)

Connecting the Rainbow

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This is a new part of the Reece's Rainbow ministry. It is designed to help families in Eastern Europe (at least at this time) gather information and supplies in order to be able to keep their children with DS and not automatically feel like they have no option but to put them in the orphanages, as is the practice at this time.

Actions speak louder than words

Jam 2:17 In the same way, faith by itself, if it is not accompanied by action, is dead. NIV

This is one of the verses that prods Bob and I to adopt children with special needs. If we are not actively living out our faith in action, how much faith do we really have? We need to be a living witness of God's love in our lives. God so loved us, that He gave His only begotten Son....talk about ACTION!!! Why then shouldn't we adopt children that have special needs? We need to be willing to lay our lives down as well, to make sacrifices, to face adversity and misunderstandings. To go against the "norm" of society.

We are called to walk out in faith, trusting that our actions will bring glory and honor to God. How I need to remember this when I'm tired and just want to kick back. When I don't feel I can do any more. That if God has called me to it, He will see me through it. He never said it would be easy or without cost, but it WILL be worth it.

Sometimes I feel as if I've "done enough", but if Christ felt that way, He may not have sacrificed Himself for all of mankind. We need to keep living out our faith in action, not just in lip service. I pray the Lord gives me the strength to actively live my faith, for His glory. I lead a blessed life, I have so much more than I need and definitely more than I deserve.

I have a God that loves me, a husband that adores me, children that make me know I'm a blessed woman. I have a roof over my head and more than enough food in my belly. I have parents that have always been there for me and have shown me what selflessness and family really means. I belong to a wonderful Godly church, with a pastor that preaches/teaches God's Word with no apologies. I have friends I can call on at a moments notice for anything. I have friends on line in my Reece's Rainbow group that really "get" special needs adoption and all that it can entail, the good, the bad and the ugly...but mostly the blessings.

So Lord, I ask You, if I ever get to feeling low, please remind me of this post, so I can come back and count my blessings and realize just why I must live my life in deed and not just in word.

Bring them Home

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Little Loaves and Fishes

http://mysite.verizon.net/resss9if/torussiandbackagain/

Derek's Legacy

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Derek Loux Memorial Fund

Please join me in advocating for this wonderful man of God and the vision he had to save orphans. Click on this link to see how you can be a part of a truly amazing ministry.