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My husband is loading up his tractor to sale. He has a buyer, just has to get it to him. He has our 3 year old with him today (he loves Daddy time), so I am here with baby boy all to myself. He's napping as we speak. Tomorrow morning is speech therapy and I have to make an appointment with the nutritionist for our 3 year old. (hates all meats, likes veggies, fruits and all that stuff, has quite a few allergies AND is on a GF/CF diet - yeah, try to figure that one out)
Tuesday is MOPS steering team meeting. I am also doing the bulk of my housework that day so I don't have to deal with it the rest of the week.
Wednesday morning is my 3 year old's evaluation with the private OT. That night is AWANAS.
Thursday is speech therapy.
Friday is his evaluation for the school based therapy program (Autism program).
Saturday is our fundraiser walk for Alzheimer's.
Sunday is church in the AM and the PM.
Monday is our baby boy's neurologist appointment and then rush back quick for 3 year old's speech therapy. I am not sure what days he will have hit private OT, so we might be adding that into the mix. Sigh. See a pattern here? Hehehe
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We have an appointment for our youngest son (7 1/2 months old) with the same pediatric neurologist that our older son sees. Baby boy is actually the one that made us take a harder look at our older son's issues. He has been having issues from literally the moment he was born. They are saying it's sensory related, and I am sure it is. But neither me nor my husband are satisfied that that's all it is. Last time we felt this way was with our oldest son and we walked away with speech issues, sensory issues and Autism. So I now trust my gut. I know that's God whispering the unseen. I do not know what this could be though. Autism wasn't a shock for us with our 3 year old. What could be happening, since birth, with a 7 1/2 month old dumbfounds me.
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We have the BEST, and I do mean best, SLP there is. Yes, she is a personal friend, but she is this passionate about every child. I met her in 2005 at Walmart. We were both on the baby aisle (my oldest was just a few months old at that time) and she stopped to comment on how cute he was (which I will always listen to those types of comments - hehe). We started chatting and got along well. Out of the blue she said, "you look like you could use a MOPS group". I could. I was actually online earlier that day looking for one. Years later she told me she didn't do things like that and wasn't there for something like that, but just felt led to say it.
I started to attend the MOPS group that she coordinated, the next year I served with her on the leadership team, the next year I was with her in a new MOPS group and we were both "just" Mommies, and this year I a coordinating and she's no longer able to be in MOPS due to now working as a private SLP.
When we started to notice issues with our oldest son's speech, I started going to her more as a friend for support. Then our pediatrician noticed his speech issues and wanted us to have him evaluated, I called her knowing she had just gone private. We both wanted her to check out our son. We trusted her.
Now she's his SLP. We pay privately and will do that as long as we can afford it because we are paying for quality. Even our neurologist was impressed with her evaluation report. He said he's never seen one so thorough and it gave him a lot of information he normally has to gather himself.
She meets our son's needs in every area of his life. She sees a speech issue, she starts tackling it. She sees an oral motor issue, she starts tackling it. She even saw my heart when I was sad about my son and his issue with not being able to say his Bible verses in AWANAS this year. Instead of "sorry he can't do that" she said, "let's figure out a way". So now we have a plan. She brought over, on a non-therapy day, this awesome help to teach him his verses using pictures. She also gave me an idea to present to our AWANAS director that will allow him to use pictures, instead of the spoken word, to communicate his memory verse. They were all over that and thought it was a great idea.
She really gets that our kids are a whole being and how well they move their tongue is not the only thing that speech affects. She gives tons of praises, high fives and even car stickers (which just delights my son). She really sees him and who he is. She thinks outside the box (like during testing when she needed him to point to pictures and he couldn't/wouldn't, so she gave him sticky notes to place on the appropriate picture instead. He did much better with that and gave us a more accurate testing.). She is a Godly woman that has a passion for serving.
We are so, so very blessed to have her in our son's life, and in ours. I am blessed beyond words to count her as my friend.
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Hey ladies,
For all of us who are cutting paper and other chemicals out of our lives, this is a great giveaway. Enjoy
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It seems that's all I do these days, update. There is not much else happening. We have slowed life way, way down while we figure out where we are going with our boys. Until we have them all settled in their different therapies, doctors and so on, we can't really plan anything else.
So for now...
Big Boy - He's improving on his communication skills. He has actually learned 2 or 3 new words. You should hear him say "baby baluga". It comes out "baba googa", but he was never able to get even that much out after his speech regression, so I will take it and be glad.
We have his appointment with his pediatric neurologist on Friday. I have not heard great things about this guy. Of course, I heard this AFTER I made the appointment. Oh, he's great at diagnosing, but not so great at giving you the news and giving you any hope. Pretty much he's a "he has autism and there's nothing you can do, goodbye" type doctor. Thankfully we know the second part of that is not true. But since he's supposed to be so good at DXing, we will keep our appointment and just hang on after any testing is done. I just really need to hear the words since we have 3 people concerned for him (his pediatrician, his OT and his SLP). I need to know if this is what we are looking at or not. Just tell me and I can deal with what it all means. That's how I work best.
We have already started doing a lot of research in preperation for what we might hear on Friday. We started reducing the gluten and casein in his diet in preperation of a GFCF diet should we get a confirmation of ASD/PDD on Friday. We have added a much higher quality multivitamin to his daily routine and Omega 3 (fish oil).
Baby Boy - Oh my, he still isn't sleeping. He turned 7 months old on Sunday and has slept through the night one time (Friday night). Sleeping through the night means 6+ hours in this house. I am so tired I think I honestly border on the exhausted scale and might not be safe to drive, so I don't. On days I feel extra tired, we don't go out.
His new OT comes on Thursday, right after Big Boy's SLP comes (speech pathologist). Thursday will be a very busy day, especially since we have to get ready for Big Boy's appointment the next day. But we will make it. We always do.
He still won't really eat any solids. He nibbles a little every few days or so, maybe 2 - 3 times a week, but not enough to lower his formula amount. He is still eating so much formula it's rather freakish. But he's thriving and until we get his other issues handled, he won't be able to handle solids.
Other than that, we are good. My Mom took Baby boy Saturday night. I got to sleep all night long. We got up, weren't rushed to get to church and had a nice lunch with Big Boy. This next Saturday I get to go to Elizabeth Arden's Red Door Spa . My Mom bought me a gift certificate for Christmas last year and I am finally cashing it in. I am having a 1 hour massage (oh, I will be jello once she is done), a warm cream pedicure (don't know what the warm cream means, but it sounds wonderful), my eyebrows waxed (never had that done, but my Mom says it doesn't hurt, we will see), my hair cut and styled, lunch, makeup applied (I don't really wear makeup, but it's part of the package so why not have fun?) and then home. That is great timing, the day after our appointment.
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It's just been one of those times when everything happened all at once. We started speech therapy for our 3 year old. We "rehired" ECI with a new service coordinator and a new OT with the understanding that the arrangement would end if any of the stuff that caused us to "fire" them the first time happened again. (boy, was that a fiasco) We are looking at our OT options for our 3 year old. Tomrrow my Mom is taking our 7 month old overnight to allow us to have a full night's sleep (he doesn't sleep all night, not by any stretch of the means). Next Friday we have our pediatric neurologist appointment for a formal confirmation of PDD/ASD (autism spectrum) or something else on our 3 year old. Did I mention I am coordinating our MOPS group this year AND teaching AWANA? Yeah. Hehe.
It's a really, really good thing I thrive in chaos. Because I live in chaos. It's good though. My boys are thriving and we are all happy. We are following God's path and boy has it been interesting. I can't wait to see what tomorrow holds.
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Wow, where to start on us. I guess, at the beginning.
I was single and actually enjoying being so. He was single and, well, sort of enjoying being so. He wasn't really wanting to date anyone, just needed to meet some new people since he was new to the area. He liked to rock climb and needed a partner. His room mate told him to type that in on Yahoo search to see if he could find anyone to climb with.
One day, while sitting at home minding my own business, I got an email. That simple, innocent email was the start of a family, though we didn't know it at the time. It was a simple request to get to know someone in hopes of finding a rock climbing partner. Since I rock climbed, I was eager to find someone to go with as well (I don't climb alone, you have a partner on all climbs for safety reason).
After months of emails we decided to talk on the phone. It went well, though his voice sounded much older than he was. I used to joke that he sounded like a 40 year old businessman making a deal on the phone. I would come to find that he was just very formal on the phone because he did not like to talk on the phone, ever. So, it was actually a compliment that we spent so much time using that device.
Finally we decided to meet. It was time to decide if we were interested in going rock climbing together. Now, before you get any ideas, we had a few climbing gyms in our area, so this was not a trip to another location we were planning. It was a climb locally. We planned a dinner for a Friday evening after we both got off work.
The day came and I arrived first. I was standing on the little deck outside of the restaurant when a gentleman walked up and said, "are you ready?" I turned to look and it was him. Uh oh! We had an issue. The issue was, he was cute. Sure, I had seen a few pictures of him that he sent. But they didn't do him justice. He had a problem too. Yeah, the same problem. He thought I was beautiful. This of course was nothing I couldn't handle. No biggie. I was not nervous. Yeah, right. I did what any woman would do that was strong, confidant and capable, I totally clammed up during dinner. I hardly spoke two words to him. This lead him to believe that I didn't even like him.
He decided to test the waters and ask me to a movie. I agreed. Why sure, why wouldn't I? A movie with a nice, charming and good-looking guy... I would be nuts to pass it up. We arrived much to early for the movie and sat in the eatery to chat. That's when the flood gates opened and so did my mouth. We talked the entire time. We reluctantly got up to see the movie, which was a terrible movie by the way.
After parting company I went home. The next day we went to dinner after he was finished with a training exercise he had to go on.
That was it, we were both sold. We were not just looking for a rock climbing partner anymore. We were looking for a life partner. And we found one in each other.
Just as a side note, we never have been rock climbing together. God sure has a sense of humor doesn't He?
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Yes, those three little words really brought a whole new way of life into our household.
I started to research this "disorder" to decide if this was something to even be concerned about. The friend that told us that hit the nail on the head. I went to the first place I could think of, an occupational therapist. We went through ECI so that we could receive in home therapy since he seemed to over stimulate at the simplest of things. As we started with his evaluation, some things came to light via their questioning about family history and such. They kept focusing on my 3 year old and his behaviors. I reassured them that he was fine, he was nothing like my 6 month old. They were polar opposites. Their "OK, well then let's focus on "E"" didn't set well with me. You could hear the tone in their voice that they weren't convinced something wasn't going on with "I".
I started to dig deeper into SID/SPD and all it entailed. That's when I discovered why their tone was not one of ease and comfort. "I" met the qualifications for a sensory seeker child with SID. Sigh! The only good thing was, this explained his out of control actions and wild as a march hare tendencies. We could not figure out, for the life of us, why we could not get this little boy to calm down. My husband was a wild child, but he was comatose compared to our 3 year old. We have baby gates on his bedroom windows because he runs into them so hard he nearly broke the glass in one and almost knocked one out of it's frame. He knows very no pain when he's geared up. He can't stop and he won't stop.
Life just got a little more interesting with that. We already had concerns over his speech and were seeking therapy for that issue. "I's" speech was not always a concern. When he was 2, he was a master talker. His doctors even commented on how advance he was for his age. He was using 4 and 5 word sentences of his own creation multiple times a day. He spoke clearly and was able to say 3 and 4 syllabyl words. I felt like I was doing a good job with him. Then one day that all stopped. He stopped progressing. We thought nothing of it, until he started to regress and lose the words and sentences he had previously been able to say. He also lost the ability to count (he had been able to count to 10) and lost the ability to identify some of his letters. Friends and family would point out signs just to get him to tell them the letters they contained. He can't do that anymore.
All of this confusion of diagnoses has led us to apply with a Neurodevelopmental Pediatrician for evaluation of both boys. They need to be seen by a team of doctors that can look at their entire being and tell us how this all fits together. We want to make sure we have them diagnosed correctly and being treated correctly. We just got our letters of acceptance in the mail and have appointments in December. It was exciting to get them, but also a bit scary. Scary because that means they saw enough on the 11 page application to warrant them being concerned enough to want to evaluate them. Exciting because someone with a huge amount of knowledge is going to look at them and give us their opinion.
We have since "fired" ECI. They were doing some things with our son that made us very uneasy and made us lose confidence in their abilities. We are now on the hunt for another therapist for "E". We have an evaluation with a sensory certified therapist for "I" on Monday morning.
That is as far as we have gotten with the boys. Life is about to get crazy with appointments, but at least it won't ever be boring!
My last installment will be about me and my husband. Talk write to you soon!
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On with life....
So we now have two incredible little boys and had to stop. We wanted more, but with the extremely difficult pregnancies I had, and both boys coming early than planned, we knew we couldn't put my health at risk when we had two little boys that needed their Mommy to be in full health and vitality. I was a bit sad when this realization came to us after much prayer, but God put such a peace in my heart that I knew we were following Him in this decision.
Now, you notice I commented on how I don't have time for my hobbies right now, let me explain this comment to you.
From the moment our second son was born, he was different. He screamed louder and longer than any baby I had ever seen. He did this from the mere second he was born. I kid you not, my OB looked up to see what he was screaming about and to make sure he was OK. The nurses commented on the sheer level of his screaming. He wouldn't stop. They wrapped him quickly, after his assessment and brought him to me. He immediately stopped crying. This was a picture of what life was about to look like.
He was discovered to have some transient tachypnia and they feared he would have a NICU stay, which would mean a hospital transferas their NICU was full. But after some CPAP treatments and such his lungs cleared out, and his screaming got worse. Seems when he could breath right he could really get his voice going.
They brought him to me and he hasn't left my side for long in the past 6 months. Even in the hospital he knew his Mom. He would not sleep in his bassinet. He would not let visitors hold him without ear shattering screams. He would not even let Daddy hold him. But put him in my arms and he immediately quieted and went to sleep. So, he slept with me, sat in my arms as I ate, rested in my arms and so on. We just accepted that he needed this during his first few days. We knew it would clear up and change, so it was no big deal.
Boy, were we ever so wrong!!
We never got him to stop being a "Mommy's boy". He wanted Mommy 24/7/365. Add to that the enormous amount of time he was crying, and the decible level of that cry, we were rattled beyond belief. We heard the word "colic" so much we started to believe it. However, something just didn't set right in my soul with that word. It was those Mommy senses tingling. He didn't sleep like normal babies. He wasn't a sleep all the time, wake up to eat, go back to sleep kind of infant. It's not gotten any better. He still fights sleep and wakes up at least 3 times a night, often more. (last night he woke up 2 times to eat and 4 time to be comforted) He only goes to sleep if I wear him in his wrap. He sleeps only on his tummy and for short periods of time.
After feeling like we were spinning out of control, someone mentioned three little words that changed our lives "Sensory Integration Dysfunction".
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For those that I haven't met on my old blog, I thought I would do a few "Get To Know Us" posts. Otherwise many things I say won't make a lick of sense. 
I am married to a great guy. This is the kind of man that if I wasn't married to him, I would want to be his friend. He works outside the home to support his family and never complains about that responsibility. Oh sure, there are moments when he doesn't like aspects of his job, but he doesn't complain about having to work, ever.
I am a stay-at-home Mom. This is what I always wanted to be "when I grew up". I am living that dream every single day. Boy, that dream looks very different in reality, but it's still beautiful to me. I enjoy a few hobbies, though I don't have time to do them right now due to life circumstances (which you will read about later). I enjoy reading (doing a lot of reading right now, but it's "have to" reading not "enjoyment" reading), cooking, hiking, camping, visiting family, movies on occasion, hanging out with my boys (Dh and our two sons) and so on.
We have two sons. I will call them "I" and "E".
About "I" - He is 3 years old and our little busy man. He was a very unexpected surprise. We were sure we weren't going to be able to have children, but on our very last attempt at some fertility meds (after a surgery) he came into our lives. God blessed us with a lively spirit that is happy, fun and all boy. He was active from the first time I felt him move inside of me and has never stopped moving and grooving. He's full of love for those he knows and willingly and freely gives kisses, hugs and smiles.
About "E" - He's 6 months old and such a great kid. He's got the cutest toothless smile there is. He was our easy to make baby but hardest to live with once he got here kid. We are learning about him every single day. He's almost bald, just like "I" was and is just a chubby monkey. We lovingly refer to him as "triple thighs". He can roll, hold his head up and grab for things he sees and wants. He's a delight and joy to have as a son.
Then comes our third child, who is actually our middle child. This little life we never got to meet. "He" (we felt it was a boy from day one so we refer to our little life as "he" and "him") was a surprise to us. Not long after the joy fully bloomed, the bleeding started. That's when tests and more tests happened. My levels weren't rising and we felt it was a miscarriage, until the pain started one afternoon. There was a mad rush to the hospital. But no baby could be found on ultrasound. They did many tests and finally my awesome and wonderful Christian (pro-life) OBGYN came in and said we had no viable baby. This baby was not making it. For HIM to say that, you knew he was right. He was a protector of life on so many levels and lived out his faith in his work. He suggested a DNC. We called family that was knowledgeable about this issue and sought advice. Then we prayed. We were at peace with the DNC option. So we went forward an hour later with it. They drew blood and watched me over night. My levels went from 52 to 900. That's when we knew that we had an ectopic. The lab results confirmed there was no baby tissue in the DNC labwork. That meant my baby was alive in me at that moment, but would not make it. We prayed more, talked to professionals we knew more, spoke to our OBGYN more and he came to a conclusion, we had two choices. One was to use a medication called Methotrexate to help with the ectopic ending, or we could have the traditional surgery to remove it. Since we caught it soon enough, the Methotrexate was an option. After much time in prayer and speaking with those we trusted, we chose the medication. That was the hardest thing I have ever done. To sign a piece of paper asking for that medication to stop the progression of life that is not really living, but dying and hurting you as well went against everything I believed, but I knew what reality was. God carried us through. It was excrutiating. There was pain with the acutal medication injection, pain for days afterwards, so much nausea that two antinausea meds barely kept me able to eat a cracker or two a few times a day. I slept constantly due to the nausea meds and time passed ever so slowly. 9/6/06 was the day I got my two injections of Methotrexate. That is the day that our little Ethan went to be with his Heavenly Father. We will hold you, dear Ethan, in Heaven one day. My arms ache to hold you often, but I know you are living in Eternity and in perfection.
That is where I will stop today. More to come...
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I am trying out this new space on the blogosphere. I like my old address, but want a little more creativity in the setup. I picked the porch swing motiff because of the feel. There's nothing more "home" than sitting on a porch swing, in the dusk of the day, cool breeze blowing gently across your face, tea in hand, kids playing tag on the front yard, sigh. Ahh, to dream.
So come, join us as we walk in the reality of our lives. The porch swing is in our minds, so all else will follow suite. 