Monday, December 1, 2008

Dentist = Vomit x 3

Ian went for his first dentist appointment a couple of weeks ago. Actually, it was his second, but the first dentist called it a "happy visit" since not much was done because Ian wouldn't let them in his mouth. So, in the meantime I found this great pedi dentist that we took Benjamin to when he had bruising on his gums (due to teething, ouch!). I had told her about Ian and she had heard of Fragile X. That's the doc for me!

So we get there and Ian's a little on the nervous side. I explain to the dr. that he will probably vomit because he has a huge gag reflex, particularly when he gets upset. Add in the fact that someone will have their hands in his mouth, and that's a recipe for disaster. He ended up having to lay on my lap with my legs around him. We just tried to talk him through it all. She didn't overdo trying to brush and all, but she did a good job at making sure she did what she needed to do. However, in the midst of it, Ian screamed and vomited.....THREE times! And get this, the dr. apologized to me because she had tried to keep it off my clothes.

As I made his next appointment for 6 months, I was already dreading it. The kid does better getting a shot at the pedi's office. But he was quite happy after it was all done and we got to get a burger at "Old MacDonalds".

Sunday, November 30, 2008

I Am Still Alive....I Think

It's been so long since I've been on blog land. I'm looking forward to catching up on reading everyone's entries that I'm so behind on. I think I just got in such a funk cause everything seemed to be so negative, I didn't want all my entries to be so pessimistic. Quick, quick update:

So much for dying without making a turkey. We had Jim's family come to our house....don't ask how that happened. That made 10 adults and 4 children. Okay, truth be told....Jim made the turkey. We had a really good time, and I was so glad we had it at our house. It gave Grandma and Papa a break this year. Plus, even though I kept telling everyone that Jim cooked, I cleaned, I still got all the credit for the meal. I finally gave in and just said, "Thank you." How great is that!

Trip to Oklahoma City to be with my family was much different. Everything has been much different since my dad's stroke. I am very thankful that he is alive, walking, talking. However, I want my pre-stroke dad back, and my mom wants her pre-stroke husband back. It's been very difficult for my family. I think I feel like I get to 'run away' from it by being here. But going back home shows me how real it really is. I felt like I either cried or was griping at Jim for some reason the whole weekend. It definitely forces me to concentrate on what the meaning of Thanksgiving is and to remember all the blessings the Lord has poured down. Blessings are great, but I also have to remember that we were never promised an easy life of roses. It's what I do with all the hard times that determine how thankful I am for Jesus. After all, He didn't exactly have a rosy life when He walked the earth. Next....

Benjamin is officially a toddler!!!! A clumsy one, but oh well. While he's still quite weak and can't walk for enormous amounts at a time, he way prefers to walk on his two feet than to crawl. I had forgotten how adorable they look.

Avery is pretty much officially potty trained. The only thing we haven't tackled is nighttime. The latest joy is that she has finally started to poop more on the big potty than on the little one. Cleaning that thing out gets pretty gross after a while. I'm so proud of her.

Ian is still a day by day. We've been struggling a lot more with his behavior. Jim is ready to go for stronger meds. I AM NOT. This is a big source of contention with us. Probably the hardest thing we've had to try to work together on. More on that later. I just love my little boy so much......

My friend, Rian, had her baby boy!!!!! His name is Malachi "Kai" Ellington, and he is adorable. He was born November 17. I got to see him come into this world and it was amazing. Rian did great. I already can't wait for him and Benjamin to play together!

That's about it for now. Thanks for those who wrote to check up on me. I'm still in a bit of a funk, but working through it.

Tuesday, October 7, 2008

I've Been Tagged

Thanks Vicki at for tagging me with this meme:

The Rules:
1. Link your tagger and list these rules on your blog.
2. Share 7 facts about yourself on your blog. Some random, some weird.
3. Tag 7 people at the end of your post by leaving their names as well as linking to their blogs.
4. Let them know they are tagged by leaving a comment on their blog.

I apologize now for the incredibly boring list you're about to read. Sorry, no cool pics.

1. My nick-name from my childhood best friend's dad was Donna Doo-Doo. Don't know why, never figured it out, never wanted to.

2. I love Taco Bell's Frito Burrito and wanted to protest when they quit making them.

3. I've always wanted to climb Mt. Everest. Backpacking in Alaska is the closest I've come.

4. I sucked my thumb until I was in high school.

5. I'm 39 1/2 and I've never made a Thanksgiving or Christmas turkey or ham.

6. I want to move to North Carolina before I die.

7. Bodily function sounds crack me up!

Okay, sorry, that's the best I could do....and it took 2 days to think of. You watch, I think of some great things after I post this.....nah!

Your turn. Here's who's tagged next. If you've already been tagged....hopefully I'll get to catch up on my blog-reading soon.

Thursday, October 2, 2008

Dad Update; Argh! on Drugs; Nine Years; And Poop Galore

After a week of being with my dad, I'm back home now. The Lord let me leave with more peace than I thought I could have. During the day before I left, my dad was very coherent and his speech was great. He was very tired and sleepy still, but he didn't have many disoriented moments. They have him on Tylenol now instead of the morphine. His bandages are off to expose the staples (27 of them!). My mom said he had a very good and restful night last night. He was able to eat food (dysphasia diet), and his swallowing test came back clear. So please continue to be praying for a full recovery and for him to get out of ICU, and also for no other issues to arise. And keep praying for him to come to know the Lord as his Savior through all this.

Now the yuck part. We're still working on the medication stuff for Ian. It's been a bit of a contention area. I think we aren't giving it enough time, not to mention it doesn't seem really fair to judge it after only 3 weeks, when one of those weeks has been complete chaos for gone for a week, dad taking care of them, other caregivers taking care of them, and green snotty nose. Hmmmm, sounds like enough to throw ME over! So, we've taken him off the Strattera and have an appointment with the new neurologist on the 24th....hoping for a cancellation before then.

Today is our 9 year wedding anniversary! We both agree that we are even more in love now than when we first married. The Lord can do great and amazing things. He really has shown us a lot during our marriage, especially during these hard 3 years of our 3 childrens' diagnoses. I've decided that for us there are 2 options in our life circumstance....we either work together, or we don't. And our working together has to include the Lord as head of our marriage. He's much better at peace than we are. Anyhoo, I'm very fortunate to have Jim as my husband, best friend, and daddy of my children.

I can't forget to mention my darling Avery. In the last week she has twice disappeared to bathroom with us knowing. Then we hear a sweet little, "Mommy!" or "Daddy!" By the smell on our way to the bathroom, we know what to expect. Our little girl has gone poop completely on her own! I am sooo happy and soooo proud.

Saturday, September 27, 2008

Out of Routine

I'm sitting here at my sister's computer 3 hours away from hubby and kids. I got a phone call Tuesday that my dad had a stroke. It was one of those, "Do I leave now or wait?" type things. After a couple more phone calls from my sister, I was ready to leave at 1am. However, that probably wouldn't have been the best idea in the state I was in. Plus I needed to feel like I had things 'in place' at home before I left for an unknown amount of time. Finally it was decided. My best friend came to stay the rest of the night (starting at 2am), so that Jim could go to work in the morning and prepare for a sub then come back home. The rest of the details would be worked out by my hubby, best friend, and grandma and papa. I set my alarm to wake up in 1 hour (which turned into and extra 1/2 hour), packed up, and took off north. Hardly any traffic and NO rush hour!!!!!

It's now Saturday and I'm still here. I'm very fortunate that I can still be here....thank you Zane and Grandma and Papa.....and of course, JIM!!!!! And also to my other good friends who have volunteered to help out when needed! My dad had an aneurism (could have spelled it wrong). Luckily it only had a leak and not an explosion. The neuro-surgeon did surgery on Thursday morning. Hopefully my dad will get out of ICU my tomorrow. I don't want to leave until he's out of ICU. He's really disoriented and confused. I thought by now, his faculties would be a little bit better. He does generally know where he is, what his name is, what year it is...when they ask him.

We're just waitin most of the time. My mom is hanging in there, but I think barely. I think when none of us kids are there, she probably feels relieved to cry.

So, if you're a prayer like me.....please ask Abba to heal my dad and give my mom an overwhelming peace that can only come from him. If I new 100% that my dad would be face to face with Jesus, I don't think I would be struggling so much with this. So, in light of that, please be praying also that the Lord draws my dad to Him during and after all this.

Oh, also be praying for Jim and the kids. They have been knocked out of their routines and don't have Mom there. This is the longest they've been without me. Jim's done a great job of trying to maintain some normalcy, but you know how it's usually still the stable point. I am very proud of how Jim has been able to take over with everything so that I can be here. I know it's not easy for him. I love you, Jim!

Tuesday, September 23, 2008

Avery Saying

I don't normally post a blog just on one of Avery's cute remarks, but this one was so cute I didn't want to forget to post it.

I pulled out some pictures the other day, one of Nana and Papa taken 20 years gray, no wrinkles, you know. So here's the convo:

Avery: "Mama, that's Nana."
Mama: "Yes, that's Nana."
Avery: "Mama, that's Papa."
Mama: "Yes, that's Papa."
***Silence, silence, silence***
Avery: "Mama? Is that a NEW Papa?"

She is sooooo cute!

Saturday, September 20, 2008

Oh, It's Been a Good News Week!

I adore weeks like this. First, the weather allows for open windows. Next I get great news about my kids.

Week before last, I had been getting not-so-great reports from Ian's teacher. This was after we thought he was improving on the Strattera. On top of that, his nights had drastically began to change, for the worse. He was a lot more irritable and aggressive. So we called the neurologist, who then up'd the dose to 20mg. I don't want to make an assumption since he's only been on the new dose for less than a week, but here are the reports:

Ian is being pulled out of PPCD for 1/2 hour a week, with an aide, into a real PK class. I have had a good report both weeks. The other day, Jim came home and said that the PK teacher wanted to be sure he told me that they watched a movie while Ian was in there, and after the movie, she asked some questions. Ian answered 2 questions....correctly!!!!!! SO excited.

Then his teacher told me that he VERY CLEARLY AND VERY CORRECTLY said, "Mrs. K, Susan hit me." And she commented on how he can read his classmate's names....she even had me watch him do it. His nights have amazingly improved. He still impulsively hits, but will say he's sorry a lot easier (still with prompting). He has been playing more nicely with toys. And, some words were on the TV (I think with Word World), and Ian pointed to the word "dog" and said "dog". I love these moments!

Benjamin's (he is 16 months old) ST and his service coordinator for ECI came out last week to do a DAYC test on him, which would tell about where is his developmentally. Results:
Adaptive - 16 months, Fine motor and gross motor - 11 months (still not walking), language expressive and receptive - 12 months, personal / social - 20 months, cognitive (the biggy for me) - 16 months. Wahooo was all I had to say about it!

Also, we have been trying to work on some sign language with him, but he just never seemed to 'get it'. He would always just look at my hands, or grab my hands as I would do hand over hand with him. WELL, the other day I cut up some more sandwich for him, asked him if he wanted more (I didn't do any sign), and he signed "more" to me!!!!!!! EXCITED! Avery just looked at me and asked why I was screaming.

Avery has had some very good progress with pooping in the potty. She's kinda on the regressing side again, but we just hang in there and praise her when she does it. Not to sound gross, but when she does poop in the potty, it's like the size of Manhattan! Why on earth would ya wanna hold onto that!?

Friday, September 12, 2008

Let's Talk Grandparents

Well, last Sunday was Grandparents Day. We really don't celebrate it, but I do want to 'kudos' my kids's grandparents.

My parents, Nana and Papa to the kids, live 3 hours away and are in their 70's. They love their grandkids so much, and I know they wish they could do more for them. They have 3 other grandkids where they live. My dad and I have improved sooooo much on our relationship since Ian was diagnosed. I know that sounds strange. But actually, my parents had a child with Downs that died at the age of 5. So if anyone in my family or Jim's can relate, it's them. That has meant so much. I keep praying that my kids will be the ones who will eventually lead my dad to a relationship with the Lord.

Jim's parents, Grandma and Papa to the kids, live here in town. They are only in their 40's and 50's (his mom married a younger man....go girl). I wish you could all see them with their grandkids. They have our 3 and 1 more. They would do anything for them. They even have my niece living with them while there are some family issues going on. My niece has no doubt of their love for her. They own a courier business (where I work part, part time). They are already making plans for growing the business so that Ian will have a place to "work" when he gets older. The kids have soooo much fun with they are there. Grandma and Papa have been such a tremendous help to us, especially when we've reached our max and need a break.

I could go on and on and on and on. But I won't. My kids' grandparents RULE!

Tuesday, September 9, 2008

Ahhh, Rain!

I get sad to think about all the people affected by the hurricanes and other such weather, but at the same time, I am thankful for the rain it brings to us. I love rainy days...especially after really sunny, hot days. Actually, it'd be better around here if the humidity didn't hit as well. BUT, football has started, which means fall is here!!!! LOVE FOOTBALL, LOVE FALL! We were even married in the fall. Oops, side-tracked. So, my precious daughter and I sat and watched the rain fall last night. Next time it rains during the day, I want to take them out to play in it. I don't think I've once let them play out in the rain. Who doesn't love to play in the rain!

This morning we were one of 'those' people who have the sprinklers running right after a rain. We've all seen them, and we have all commented. Now I no longer comment. We haven't quite figured out the system in this house since we've moved in. I know it's not possessed, we just can figure out how to set it right. So hopefully others will drive by and think, "oh, they must not know how to work their system either", instead of, "what dummies!"

I've been digging out stuff to start working on Avery learning to read. Anyone ever use Alphabet Island? I'm going to a friend of mine tomorrow so she can lead me through the curriculum. Avey just seems to really want to read. She loves recognizing any letters that she can and flipping through pages of books, telling the story.

I think a lot of it is also that I'm feeling like I've got to see some academic learning going on in our house. After going over and over and over colors, Ian still can't recognize them...although he does understand the concept of what a color is. He just doesn't say the right one when asked. He goes over them in school, he's gone over them when he was in a separate ST, and we go over them here at home. I know, I know, I'm way too hard on myself. I just get so sad for him. After reading many of your blogs, I know Ian is not alone in it all. And he IS only 4 with FX. I guess with each new stage of life, I just need to remember God has blessed me with something new. And I know He will lead the way to how to get things through to him and how to help teach him.

Have I mentioned how much I love the rain........

Sunday, August 31, 2008

First Week of School Over

I know some of you have been into the swing of school for over a week now, but we just finished our first week....and yes, we have sick kids now. The week was hectic, but they did well. Avery goes 2 days a week to a Christian pre-school. Ian is in his 3rd year of PPCD. I really want to work on being more a part of the goal making this year for Ian's ARDs. I'm just not sure how or what. So, if any of you have any input, I'd love to hear. They would need to be for his age (he'll be 5 in November). I'm mainly not sure what is logical for the school and what is not.

Wish I could write more, but hubby is needing help with getting the kids to bed. More later.

Thursday, August 28, 2008


Hey I got an award. My first. Thanks, Betsy at My Five Men! It came at a great time a few days or so ago. I commented to Betsy that just when I think I have nothing left in me, the Lord sends a friend to show me that I do have something left. Thanks, friend!

p.s. Can I use the picture of the green zinnias on my sidebar? I love that picture!

Tuesday, August 26, 2008

Straterra Anyone?

Okay, we took Ian to his neurologist appointment yesterday. We adore our current neurologist. However, he does not deal much with FX. Getting to the point in life where we need to start thinking about medications, we really need a neurologist who is more familiar with the syndrome and treating it's symptoms. So, off we went. BTW, Ian did so great! I was so proud of his behavior. I really appreciated the doctor, his thoughts, and his personality. Unfortunately he will be leaving soon to join a practice out of state. Figures! But I decided that if I liked him, chances are he would have another doctor in the practice he would recommend based on what I would be looking for.

After asking a lot of questions and answering a lot of my questions, he suggested starting with what he called a less intrusive drug....straterra (and keeping the clonodine). One of the things we like is that it is an anti-stimulant instead of a stimulant like a lot of the others. He also said it isn't as difficult to manage the dosage and regulate. We started Ian on it last night. The doctor said it would take about a week or so to notice a change. So, we'll see.

If any of you have heard of this or have used it with your child, please give some feedback.

Thursday, August 21, 2008

Bittersweet; Avery Saying; Family

What an adorable face this is! This was our dog, Dante. We got Dante pre-kids. You know, when you have infertility issues, you get a dog! Well, we WAAAAYYYYY spoiled him. I wish I had some of the old pics on my computer to show you. Dante would sit in a chair with us at the table as we played cards. No, he wouldn't play cards, but he would eat pretzels and drink wine with us....don't worry, only a sip. He's a great dog.

Well, then we were blessed with children. I think our first really did him in with his loudness, inability to pet easily, etc. etc. We could see Dante's personality start to change. It's like he was trying to say, "Hey! What happened to my family, and who is this little terror taking my place!" Imagine his dismay when we had a second....then a third! His world was rocked. Sad to say, he growl at the kids, but it was more like a "Get out of my space and quiet down" type growl. Some friends couldn't believe we still kept him. Sometimes I couldn't believe it, but I just couldn't give him up. If I really believed he'd hurt the kids, I would have in a heartbeat. Anywho, times have gotten worse for Dante. He has really bad skin allergies and started "leaking" pee everywhere. After spending a lot of money at the vet (twice), we found out he had a really bad urinary tract infection and was put on meds.

We decided we really weren't being fair to our first baby (Dante). The vet agreed that under our circumstances, he was greatly stressed. So, we listed him on Craigslist (if you haven't gotten on this "better than ebay site" you should try it). We noted our circumstances with the SN kiddos, and commented that he needed a stressfree home with no small children. Long story long, we had someone come look at him and wanted to take him. Jim called to tell me so I could come say good-bye, but I couldn't do it. So, I drove around until Jim told me he was gone. We've been able to email the new owners to find out how the transition went, because we wanted to make sure that if it didn't go well, we got him back. They love him! They even kept his name. I had Jim email them again to let them know he liked to 'sing', especially to "Happy Birthday."

Thus, the bittersweet moment. I miss him dearly, especially when I see all the pictures of him. How are the kids doing you ask? The don't even ask about him! I couldn't believe it. Neither Avery nor Ian even miss him! Probably a good thing. We won't be getting a new dog for quite some time.

Avery Saying: One morning Avery was jabbering stuff. She said, "Mama, I'm such a mess." I said, "You are? Then what am I going to do with you?" She sat and thought for a moment and replied, "Throw me in the trash." :) :)

Family: Do you ever get so frustrated with family that you just don't know what to do anymore? I know from some of your blogs, that you deal with the same thoughts. I recently did a Beth Moore Bible study that mentioned that unity among family is more difficult because you don't choose your family. You can choose your friends. Face it, how many of us would choose to be friends with people with have nothing in common with or have a difficult time being around? If you said, "Hey, I would" ....more power to you. But the study reminded me that God chooses our family, and He knows the complete story and all the why's. He calls me to persevere with family and do my best to rise to peace and unity....even when others do not and no matter how I am treated. It's a tough battle everyday. If we ask and seek, He even shows us amidst the issues, the areas in our own lives where we need to be humbled and where we need to be prayer warriors. Isn't He great.....even when we are not!?

Saturday, August 16, 2008

Sweet Avery and Tough Day

A little over a week ago we had a good friend pass away. When I was letting Avery know that she would be taken to a friend's house while mommy and daddy left, she asked where we were going. I told her we were going to say good-bye to Jamie. Here's the conversation:

Avery: "Is Jamie still sick?"
Mom: "No, Jamie isn't sick anymore."
Avery: "Where's Jamie?"
Mom: "Jamie is heaven. Do you know who he gets to be with?"
Avery: "Jesus."
Mom: "Yes."
Avery: "Is Jamie happy?"
Mom: "Yes, Jamie is very happy. Do you know why?"
Avery: "Why?"
Mom: "Because he gets to dance with Jesus, he's not sick anymore, and he gets to see your smiling face everyday now."
Avery: Big Grin!

Oh, it was such a sweet moment.

Today: One big YUCK. We're out of town visiting family. I don't know if I was just over emotional today or if the kids really were tearing at my last nerve. Then we went to my niece's birthday party. It was at Little Gym. I did my usual letting the gym people know about Ian so they wouldn't think he was a 'bad' boy. He did okay in the beginning. Then he just couldn't handle the excitement anymore, so we left with him and had family bring home Avery. I cried the whole car ride and pretty much the rest of today. I just want him to be able to be a part of things in a 'normal' way. Jim made the point that he DID have a good time. That helped a little, but I guess not enough.

I try really hard not to cry in front of my family, particularly my mom, when we're back home visiting because I don't want them to worry. Sounds fake, I know. But they worry so much anyway, I hate to give them anymore reason to. I blew that today. Couldn't hide it. Maybe it's pride? Maybe I just want them to think I really can handle our life perfectly. Ha Ha

Anyway, it's time for bed now and tomorrow is a new day. I will get up like a do everyday and ask Christ to give me strength for another day. He is sufficient....even when I cry.

Saturday, August 9, 2008

Friends are the Greatest!

You know, I often wonder what life would be like without friends. I think it'd be a sad, sad life. Tonight was a wonderful example of great friends.

About a month ago, my good friend had set up a date for her and her family to come over and eat dinner with us...they would plan to bring dinner. Hey, can't beat that. She set the date a month out. I thought, "Well, what a great planner." The night was to be tonight. I had tried to let her out of cooking dinner because her husband ended up going out of town and we had a funeral for another friend of ours. :( I thought that was a lot for her to have to worry about in one day. Nope, she was all gungho.

Then, I call her after my nap, around 4:00pm and told her she would have to ignore my tornado hit house of toys. She tells me that I'd better start cleaning cuz she had a surprise. I finally got it out of her. She said there would be a bunch of people over here for a housewarming party for us. Let me tell you, I was totally surprised. I just don't know how everyone kept it secret. I really thought she was joking. So, I hung up the phone and Jim and I started cleaning like mad. Sure enough, they came. We had a wonderful time! The kids loved having friends over to play with and they did great. No vomit! And they had all pitched in for a Home Depot gift card for us.

This is not the first time this family has blessed us in such a great way. They don't have to do anything and we'd want them for our friends. But they are so thoughtful and really really care about us and always go out of their way to bless us.

So, for anyone who thinks they can make it through life without the joy and love that comes with friends, think again. What a lonely life it would be.

Thank you to all my precious friends! Christ shines through each of you!

Tuesday, August 5, 2008

Stuff Again

Betsy asked if Avery was still potty trained. Very good question. Well, no more poops in the potty since the big one. And, a day or so after I did my bragging to ya'll, she wet THREE TIMES in her panties. What's up with that? She must have been having an emotional day that day. Since then, she's still doing good with the pee part. School starts for her the last week of this month. I'm just gonna pray she doesn't have to poop while she's there. I guess I'll find out the true meaning of potty trained from her teachers!

Avery saying: I was going to get on the treadmill this morning and Avery was going to fingerpaint. She asked me if I was going to work-out. I said, yes (but quickly changed my mind when I felt how sweltering hot it was!). She grabbed her fingerpaints and said proudly, "I'm going to work out my fingerpaints."

I can't believe Ian's ESY is almost over. His last day is this Thursday. I have to say, his time there has way exceeded my expectations! I've been very pleased. He'll start his last year in his PPCD program the end of this month. I don't want to think about the future.

That brings up another stress point time. Drugs. I know you've all dealt with them or the thought of them. Ian will turn 5 this year, and I know that reality says he can't concentrate or sit still unless he's sleeping....even then, it's debatable. When he was diagnosed and I started learning more about it, I was absolutely against him ever being on drugs (other than the ones that help with his sleep). I saw too many kids, FX or otherwise, who just totally lost their personality once on drugs. I can't stand the thought of this for Ian. He has such a great personality. It makes me cry to think of him any other way. However, it also makes me cry to think of him having to go through life as hyper as he is. It's like his brain just never stops being on overload. He's beyond HDHD. It hurts to think of how he must feel having to live with it. Anyway, our neurologist is a great guy, but not very knowledgeable about FX. We're going to see another one that has been recommended. I don't want him medicated by anyone who doesn't really understand his diagnoses. Truth be told as well, I don't know how long the rest of the household would stay sane if Ian doesn't get help. He's only getting bigger and stronger. Anybody have any words of wisdom for me?

Can't they just stay young?

Saturday, July 26, 2008

Is it Safe to Say......Potty Trained?!

Well, I think Avery has done it. I think she has passed the mark into potty trained-hood. She wears panties all day now, even if we go out and even at nap time. She's still a little weak in the poop arena, but her last attempt was completely on her own and she succeeded.

You might ask, why the rush. After all she just turned 3. Why push it. In order for her to go to her preschool this year she has to be potty-trained with few accidents. So, we used that on her and told her she couldn't go to school if she didn't start pooping in the potty (she's been doing good at the tee-tee part for a while). Her reply? "I don't want to go to school." Okay, can't use that anymore.

So then it was walk around the house with no skivies. Long tee-shirt only (gotta keep modesty). That made her mad. When she would have to poop, she would tell me she wanted a diaper on. I would say no, and off she would stomp and yell. Well, she learned quickly, that if she just hung onto it long enough, she would get a diaper/pull-up on at naptime, and she would do her business then. Luckily, I'm working with a full deck and figured that out quickly.

Next step....panties during nap time. I was really avoiding that because, well, who really wants to clean up a mess like that? But, it was time to jump the cliff. She's a smart little princess. After stating her obvious objection, she asked if I would put her little potty in her room. What a great idea! So, I did. The first afternoon, she got up and went straight to that potty to tee-tee. The next day, same thing. The next day I get woken up from my napping to, "Mama! Mama, come here." I found her sitting on her potty when I got to her room. "Mama, I pooped." And she had. Not just a small itty bitty that I posted on the blog the first time she ever did it. Nooooo sir! This was a full fledged, bonified......I'll stop there. Lucky for you, I've gotten over posting pictures of it.
I was soooooo proud of her! Now that was several days ago, and she has messed in her panties since then. But overall, as far as school goes, she has the control and she knows when her body is telling her she needs to. I've still got another month or so to work on consistency. I'm very proud of her.

At the grocery store yesterday, she stopped me during shopping to tell me she had to tee-tee. So we went. She sometimes gets scared of the restrooms because the noise of the toilet is so loud. But she's getting over that. She did what she told me she needed to do.

And Ian....well, he's not what I would consider potty-trained, but my goodness, he is further along than we could have imagined for his age with FX. His teacher at ESY has even been helping out by letting him wear underwear to school. That's for 3 hours, and usually 2 potty breaks unless he requests to go any other time. He's only had one accident while at school...lucky for her it was only wetness. I KNOW YOU FX MOMS know what I mean. Scary thought.

Friday, July 18, 2008

My Little Girl Turned 3 and More

It's been a while since I've gotten on blog to read or to write. I've been blessed to have my family in town the last 2 weeks. My sister and niece came in last week, and my wonderful mom has been here this week. And I had all my family in (well, except for my oldest niece who I don't see too much anymore.....teens!) for Avery's 3rd birthday. Since she has the only summer birthday, she gets the pool party at Grandma's.

Sorry, but since I can't figure out how to get the pics to position correctly with the text, you'll have to figure out what pics go with what. It won't be hard. First 2 pics are birthday/birthday cake.

Avery also had her first haircut. Yes, 3 years after her birth. She has unfortunately been blessed with hair like mine.....very thin....very fine. Well, her hair hadn't even gotten really long anyway. Then on top of that, Ian pulls her hair. He doesn't just pull it, he pulls it OUT. I started noticing that the girl just didn't look right. Her hair was uneven and had gotten bizarrely short. Her hairdresser also said that sometimes baby hair falls out. That made me feel a little better. Now, hair is short again...hope it grows fast.

Now, the cake. I have a friend named Julie who is AWESOME at making cakes. One day if I remember, I'll post some of the cakes she's done for my kids' birthdays over the last 4 years. To my total horror, she was going to be out of town for Avery's birthday and couldn't make the cake. Oh my, I almost thought I'd have to cancel the party. Her cakes are that fun! Back on I decided to make the cake this year. I found a recipe for a butterfly cake and flower cupcakes on I didn't want to just do the butterfly cakepan. I figured it take me longer to figure out how to decorate it. They were both so easy to make and if I may say so myself, they turned out pretty good (not as good as Julie's, however).

Okay, the finale picture is my best friend, Zane. She was in charge of pictures at the party. I figure if she was brave enough to take a self-portrait, then it was good enough to post. Seriously, we are playing jokes on each other all the cell phones with different ringtones and backgrounds; turning on the wipers, A/C on high, and radio really loud in the car for when she gets in to go to work in the morning; taking self portraits for me to see when I look through the pics....stuff like that. She's great! I don't know what I'd do without her all these years!

Oh, I can't forget the Avery saying for today. We were in the van and she wanted to hear a certain song from her CD. She kept saying "guac-a-roni". After my mom and I put our heads together, we finally figured out she wanted to listen to "Yankee Doodle" know, the part that says, "....called it macaroni".

Monday, July 7, 2008

Wednesday, July 2, 2008

Furniture and Stuff

Here is the furniture set that we got for Avery's room - headboard, nightstand and dresser (has mirror too). It's all real wood and all handpainted. You probably can't tell from the picture, but some of the butterflies, bees, tulips are raised. It's sooooo cute. We're going to give her room a 'garden' theme. We've already painted, so now to hang pictures. I have several that a good friend gave me. I'm a procrastinator and very undecisive person, so getting them up will be a feat for me.

Other stuff: Jim's last day of teaching summer school is today. He is sooooo relieved. This is his hardest summer school so far. Ian is still doing great in ESY. He's starting to get a little more comfortable, so we'll see if his behavior changes any. I'm praying he keeps up the way he's been. The teacher is really trying to get him to use the potty and stay dry while there so she can go for the real underwear......go girl! I got to meet her today at a splash time the kids had up at the school. She seems just as nice as she does in the notes she writes to me.

Other, other stuff: Benjamin went to the dentist the other day for the first time. It was more of a consultation, not a cleaning. He went in for the bruising he's been having on his gums. The right side finally popped a tooth through and quit bruising. His left side is still swollen and bruised. She confirmed that it's just a tooth waiting to come as well. It's called a something hematoma. She said it doesn't happen often, but it does happen. So, we'll just wait.

Also, has anyone done PECS with their child? Our ST recommended trying it with Benjamin since he has no real vocabulary yet. It seems to take a lot of commitment. I'm really going to work hard at it, and hopefully get my husband into it more. He's more of a "if it doesn't show results in a day, I'm not gonna do it" type thinker. So if any of you have done it and would like to comment about it, please, please do. I'd love to hear others' stories with it.

Thursday, June 26, 2008

Can I Brag?

I'm sitting here drinking a chilled coffee recipe I got from My Five Men (delicious), listening to my beautiful daughter wake up from her nap singing "Glory, Glory Hallelujah" (that's what she calls "The Battle Hymn of the Republic") in her room. I'm also smiling from head to toe. I've been keeping notes going back and forth with Ian's teacher at ESY. I asked her to try to keep track of his behavior with other kids and let me know if he's hitting, pulling hair, pushing, etc. This was her reply. I'm not making any of it up.

"Not a problem! He's been the best of all our students - been minding quite nicely and keeping hands to self. I teach behaviors during the year as well as the summer - and Ian is actually one of our stars - will let you know if it changes."

I think our Faithful Father knew I needed to hear these kinds of things. She's had nothing but good things to say about him so far. Now, I was a teacher once and I know that sometimes we 'over positive' things, but believe me, I wouldn't add in extra positive statements if they weren't true. I was very pleased after reading how his 1st week went. I really hope he keeps it up.

Did I already blog about my fears after hearing one parent tell me her son did not start self-mutilating behaviors until after he started ESY? I can't remember. Anyway, that about did me in. So, hesitancy set in as to whether this ESY thing was a good idea or not. But, I figure if I just keep in constant contact and go up and visit a few times, I should be able to get a good picture of things.

Our days seem so nicely organized now. He comes home, we eat lunch, he watches a video and plays, and he easily goes down for a nap. Now, if we can think of something nice and structured for evening times, we'll be doing really great! I'm so glad we're putting him in AM PPCD classes this fall.

Wednesday, June 25, 2008

Avery Cuties

I was watching my daughter today and just giggled at all the really cute things she says. I try to journal most of them, labeling them, "Cute Saying".

A while back, she was in the garage while I was cleaning some stuff out. She started saying, "Mama, there's a crab!" Of course I had no clue what she was talking about or how she even knew what a crab looks like. Well, after further investigation, I discovered it was a spider. So, now when she informs me that there is a crab nearby, I know that it's really a spider.

Another cute thing she says (which I may have posted before) is she calls McDonalds, "Old MacDonalds". We're not a huge fan of feeding them McD's food, but you know.....every once in a while necessity calls. When she sees us pull up, she'll say, "Mama, we at Old McDonals?"

Here's an Ian one: Last night we went to Braums for a "surprise". After finding out Avery wanted "pink" icecream, I asked Ian what flavor he wanted. His quick response was, "Hamburger and french fries." Hmmmm, sounds gross!

Tuesday, June 24, 2008

He's A Boy!

Remember my good friends I told you about a while back that had had consecutive miscarriages and difficulties getting pregnant? Well, I told you she was pregnant. Now I get to tell you that they're having a boy! I'm so excited for them. They will make wonderful parents. She's about 21 weeks now. She let me go with her to her last sono (a level 2). It was sooooo great seeing that little guy, and seeing him so active. Rian is really starting to shine now, after understandably having a difficult time enjoying this pregnancy. I can't wait for Benjamin to meet his new friend in November. Rian can only hope he's as cute as Benjamin! Hee hee, not biased!

Monday, June 23, 2008

ESY in Progress

Ian's extended year started today. We decided that although we live very close to the school he where he will be going, we would go ahead and let him ride the bus. I started to have huge reservations last night and this morning. I thought I would cry putting him on the bus. I kept thinking, "Oh, I'm letting someone take him away without me, to a strange school, with a strange teacher. How could I!" Well, he did what I figured he'd do. I got right on the bus! Then 3 hours later, he got right off the bus! The note in his folder said he had a good day and that he was a doll. (Hope I get that remark clear til the end!) They even said that if I wanted to let him wear 'big boy underwear' while potty training, they would do that as long as I didn't mind doing the laundry! Got me thinking!

Ian was famished when he got home. That was a good thing, as he told me exactly what he wanted for lunch and he ate it all without a word! No goofing around, no vomiting, no laughing at Avery who was right across the table from him. It was wonderful.

Then, he watched Barney and part of Word World, then didn't argue a bit when I said it was naptime. OMG! As a matter of fact, they all went down without a fuss.


Okay, seriously, it has been a very good day.

Thursday, June 19, 2008

Brownie Bliss

See these beauties? A friend of ours, who happens also to live in our neighborhood, made and brought these to us a couple days ago (and yes, there's still some left). These mammas are so big, I can barely get my mouth over to bite it. Seriously, they're huge. They are brownies made with marshmallow on top, and on top of that is a mixture of chocolate, peanutbutter, and rice krispies. It's about 11:30pm and I just finished my 3rd one for the day (and a glass of milk, of course). Treadmill means nothing tomorrow! I laugh at the thought of Ian getting hold of one of these. Sugar high for a month! Avery did catch me eating one, so I gave her a bite. She came back for more.

Tuesday, June 17, 2008

My Precious Joy

I was given this poem at one of our FX meetings. I found it the other day when I had my little "pitty party". You may have already seen it somewhere, but I thought it was too great not to share. Get your tissues!

My Precious Joy

Sweet Father in Heaven whose love is divine,
Thank you so much for the son that is mine.
To others he'd be a burden to bear,
But to me he's a joy wo which none can compare.
I know that hes' different from most girls and boys,
He speaks kind of funny and plays strange with his toys.
For him, change is hard, he can get so upset,
He must seem so odd to those he has met.
Sometimes his anger gets out of control,
And he has a huge meltdown which torments my soul.
Yet as I look into those precious blue eyes,
I know that you Lord gave me this surprise.
For life doesn't always turn out like we hope,
You know what is best, and it's through you I cope.
You help me to see as others do stare
That this is my precious boy, not a burden to bear.
Although he is different than some other kid,
I'm so glad that you did what you did.
When others comment, "I don't know how you do it!"
It feels as arrows in my shoulder they have hit.
How could they not see what I see?
I just can't believe they don't envy me!
And then it occurs as if from above,
You knew that I was the one for this love.
You knew I'd rejoice in his triumphs though small they might be,
And urge him to greatness despite what they see.
I'd find joy and laughter where there could be tears,
I'd see his limits and proceed without fears.
You knew I'd be best for this special boy,
So, thank you, Dear Lord, for my precious joy.

Saturday, June 14, 2008

Why Am I Crying?

Okay,'s about 1:00am and I can't stop crying. I got on the FRAXA site to see if I could find a particular Quarterly issue (which I didn't), and there was a You Tube video. I guess after watching it, I realized how alone I really feel in all this. The funny part is, I'm not. But I still feel that way. To see those kids on there so much like hear the stories from the parents (particularly about goof-ball pediatricians who kept saying "don't worry about it, he'll catch up" UGH!)...etc. Just tonight, trying to brush his teeth, I wondered if this would ever get better. Well, then they showed an older boy who's dad still had to brush his teeth, and he still didn't like it. A mom who still drives by kids' ball games with sadness....

I need to regroup! I just want to go in and hug and kiss all over my kids! Of course, if I do at this hour, there'll be absolutely no chance of sleep for me.

Dad is away for the night with men from our church, doing 'guy things'. I'm so glad he decided to go. I only wish it was more than just overnight. He starts teaching summer school Monday and he's not looking forward to it. But, better some time than no time. He's such a great husband and dad.

On a better note, we painted Avery's room. It's a light, light purple (like lilac'ish). It looks great with her new furniture. It still didn't do the trick of getting her to want to sleep in her room....the dogs are still there on the other side of the fence and she knows it. She reminded me tonight that she didn't like our neighbor's dogs. But, she's working on it. Jim stopped sleeping on her floor about a week ago. The dog sleeps in there now (partially against his will). The great news is she went to bed tonight very easily. No tears, no manipulation tricks. I think we finally might be getting somewhere!

Ben is standing up against anything he can now. I can tell he really wants to let go and take off, but his little body just can't do it quite yet. One thing I'm excited about is that when Ian was 14 months, he didn't really seem to even have the desire to walk. I think Benajmin watches his brother and sister and wants to join in all the reindeer games!

Gotta go before it's time for the kids to get up. And yes, I did stop crying.

Monday, June 9, 2008

Just Stuff

The night of the day Jim got the mohawk, we put the kids to bed and got out the clippers again in hopes of making his head look somewhat normal. The mission was successful. I've never seen his hair that shaved before, but I must say, I did quite a good job!

After hitting Benjamin's one year since diagnosis mark (June 8), I decided I'm not really in the mood to go through the details of each diagnosis like I thought I wanted to. So, that's that.

A month in our new house (well, new to us) and Avery still hates sleeping in her room. We finally got the carpet in, which we hoped would help....NOPE. Then we got her this ADORABLE handpainted bedroom set, hoping that would really get her excited about sleeping in her room by herself....NOPE. So, tomorrow Jim will paint her room. She picked purple, so purple it is...a much lighter shade. Then I'll work on getting girly stuff on the walls. Yep, all in hopes that it will finally get her excited. We put our foot down tonight and told her that Daddy would not be sleeping in her room tonight. She was not thrilled, but luckily tiredness does win over in the end.

Remember a while back I mentioned a friend of mine who is pregnant after several miscarriages and had just gotten to hear her first hearbeat? Well, I am sooo excited to say that she is at 18 weeks! She goes this week to find out the sex of the baby. I'm hoping to be able to go with her.

That's it for the stuff.

Tuesday, June 3, 2008

Mohawk Pic

The deed is done! The kids, teachers, parents, principals loved it. Jim wants to work on 'fixing' it a bit tonight. He would like to look a little more professional for his ARDs tomorrow! :) I wanted to write something in his head with the clippers.

Desperate Times, Desperate Measures

Okay, so my husband is a teacher. In this state, the standardized testing is everything....yeah, messed up. The school where my husband teaches is Title 1, and they generally have lower scores. So, Jim tells the 4th graders that if they (meaning the whole 4th grade) get at least 80% passing on all the tests then he will shave his head to a mohawk and color it pink.

YOU GUESSED IT! They did it! And today is the day. I will be packing up the kids and heading up to school this morning. During the 4th grade "graduation", I will be shaving my husband's head to a mohawk and spray painting it pink. I hope our children don't freak out! I'll let ya know how it goes.

Saturday, May 31, 2008

It's Been 3 Years

I failed to blog about this earlier...mainly because we were in the middle of moving. May 12 was our 3 year mark of our lives being forever changed by Ian's diagnosis of Fragile X. I remember that day well, and will never forget it.

I think this part is good - this year I remembered the date before the date, but on the actual May 12, this was the first year that I did not cry on the date. Make sense? June 8 will be one year since Benjamin's diagnosis. October will be 3 years since Avery's diagnosis. All three times were excruciating and eventful - not in a good way. I'll have to blog about those next time....too late and time for bed right now.

Tuesday, May 27, 2008

Where's the Time Gone?

Wow. I can't believe it's been a month since I've written (or read) any blogs. Hopefully I can stay on track now. AFter 9 months of trying to sell our house, we sold it and moved into another. It all happened so fast. We've had the joy of watching the Lord answer very specific requests regarding buying/selling. One of those was more space for not much more money (and not major work needed). Another was perfect timing of buying/selling so that there would only be one transition for the kids (versus having to move out of old house, into a temporary place, then into new house).

Once we had a serious offer on our house we went out to look at thte insides of houses we had look at online. Oh, did I mention the buyers wanted to close in 2 weeks! Those houses had to fit our price range and have a similar layout to what we were looking for. So, the good thing is, we knew what we were looking for and what we were not looking for. When we found this house, I could see great potential with just some paint and new flooring in some of the rooms. We put in our bid way low, believing the Lord would be working to get it for us if He felt this house would meet the needs of our family. The seller countered at a reasonable price. Long story short, we got the house WAY under the original asking price! So even if we had to put in a good amount of money for carpet, flooring, paint, etc., we still would make out great. Anyhoo (as my friend, Rian, would say), this house had been on the market a while, so the guy was more than eager for a quick closing! We ended up closing both houses on the SAME DAY!

There's so much more, but it would make for a really long entry. We are loving the house (still unpacking). Avery is really the only one having a difficult time adjusting. She is highly afraid of loud noises, and we have 3 big dogs living in the backyard next door. Avery has had a really hard time even going in her room to play, much less sleep in there. We've made progress. Instead of sleeping on the couch (we are not fans of our children falling asleep in our bed....with exceptions of course), she is in her bed in her room, with Daddy sleeping on the floor. We figure we'll go at it one night at a time. Last night was the first night she did not go to bed screaming and crying.

Okay, I'll end for now and update more later on the other kiddos. I look forward to getting caught up on the rest of you!

Thursday, April 24, 2008

I Hafta Tell Ya......

Ian has gone 4 nights, yes 4 nights, without having to be pilled in the middle of the night! This is sooooo great! We still pill him before bed, but just having him sleep through the night is great. What's even greater (I suppose, depending on how you look at it since he does still wake up sometimes), is that twice when he has gotten up, he's told me he wanted a drink, drank all he wanted, then went back to bed. He normally has a hard time communicating what he needs when he's so tired. But I don't mind him waking up if I know I don't have to give him drugs to go back to sleep.

Tuesday, April 22, 2008

Still Moving Along

Okay, it's been another little while since I've written. We've had a lot going on. We sold our house....after 9 months. And we put a contract on another. It all happened so fast that my head is still spinning. I'm trying hard to just take one moment at a time. I tend to think WAY to large and then get really overwhelmed. I blame it on being a FXC. So, I've chosen to just take one prayer request at a time. The first one is that the buyers won't get the inspection done until after tomorrown (Wednesday). Jim is taking the day off so that we can hopefully get some things taken care of that we know will show up on a report....trimming bushes away from house, cleaning out gutters, adding a french drain, and digging some dirt down away from the brick. Can we get it all done in one day AND have the kids????? I've got my bets. But, no worries. We do what we can. The second prayer is that our house passes inspection as far as the foundation is concerned. That's always an 'iffy' thing to deal with.

The house we will hopefully be moving into needs a lot of cosmetic work. Paint, light fixtures, window treatments, tile, blah, blah, blah. Most will be done in little shots, but I'd like to get the painting done right away.

We totally believe that if this is the house for us, then the Lord will continue to orchestrate everything for it to work out. If not, we still trust Him and move on. Except for a soundproof room we would love to have for Ian (only half a joke), it has most of what we have been looking for space-wise.

So far, the kids are pretty clueless about what's going on. Avery did say, "I want to see my new house." She doesn't quite get what that really means yet. Ian's the one we're worried about, with transitions, but I bet after all is said and done, he'll end up having the easiest time with it.

So, I've missed reading your entries, but hope to catch up on them soon. It's always relaxing to get on, read that I'm not alone, and write out thoughts others can relate to.

And oh, Benjamin turns 1 year old this Friday! I can't believe it.

Sunday, April 6, 2008

Moving Along

It's been a while since I last wrote. Here's a bit to catch things up.
Benjamin is working on getting into a sitting up position. He's doing well with it and can stay in the sitting position for a while. He still can't quite get the crawling thing done, but he still tries. I'm starting to notice some differences in him and when Ian was his age. He throws little 'tantrums' when I take something away from him or when I walk out of the room. Ian never really did that. I was always so proud of that, being a new mom and thinking, "Hey, he doesn't throw a fit like other kids. I must be lucky." So during the "well baby checkups" (something I DON'T do anymore) when the nurse would ask, "Does he......" , I would proudly say, "No." You'd think at some point they would have bothered to tell me that it wasn't normal for him not to notice. That's one of the smaller reasons we left our first pediatrician. Anyway, so now I get to actually look for things and have some clue. He also really watches my mouth when I'm exaggerating a word I want him to imitate. It's like he really wants to say it. He turns 1 year old on the 25th. I can't believe it. My last 1st birthday!

Avery was invited to her first birthday party from her preschool. Twins. She mentions their names all the time. And I was told by their mom that they mention Avery's a lot as well. They had the party at a kid's gymnastics place. It was really fun. Avery had a blast. Boy, was she smaller than all the other kids! My little, petite princess. No more poop in the potty since the first. Trying to wait patiently.

Ian still fluctuates quite a bit between good days and not so good days. I have something I wish I could write about, but better if I don't. Hmph. I've decided on something I'm going to get him in hopes he will start to leave his sister alone. Today at church our pastor used a bopping something, something, something. I can't remember the name of it, but it's a blow-up thing that is shaped kinda like a bowling pin. You put sand in the bottom of it. Then, when you hit it, it goes down, but bounces back up again. I was thinking maybe he could use that for his aggression. Think we could teach that to him? I just don't know how long we can handle him hitting Avery and pulling her hair. It's so fustrating, and even more frustrating that we just can't understand it. Sometimes I wish I could get into his little head. Sometimes I'm afraid that would make me feel even worse to know. We just keep praying for him.

That should be it for now.

Thursday, March 27, 2008

A Lot of Grace Required

I hope I'm allowed more than one entry per day.

I've decided that people who have not been blessed with a child that teaches you even more than the 'typical' child, require a lot of grace. One day, you're being told, "Hey, you don't know what the future will hold. You don't know what your child will be able to do that you didn't think he/she could do. You don't know how God is going to bless you in all this. Etc., etc., etc. Then, if the mention of the possibility of another child comes in the picture, you're told, "What!? Why would you do that when you don't know what the future will hold for what you have now?" Hmmmmm, see the dilemma? I realize there is concern, but why should I be the only one looking to a bright future? Why can't everyone else as well? I have wonderful children, and while I do have plenty of days that I worry about what the future will hold for them and the things they may or may not miss out on, I also have days where I really am excited about what God has in store for us. My life verse (even before knowing I would have special needs kids) has always been Jeremiah 29:11-13. The Lord DOES know the plans He has for us. And we don't make decisions without asking Him for guidance first.

Okay, I know this is all rambling to you all because you have no idea what I'm talking about. BUT, I'm sure you've had circumstances that cause you to relate to what I'm saying. I just needed to get this off my chest. I just know I need a lot of grace for friends and family because they are NOT in our circumstance 24/7/365. I need to remember that, and not expect them to understand all our decisions as if they were. That's not fair to them. I shouldn't expect our decisions to be okay with others all the time (nor do we really worry too much about what others think when we make decisions for the betterment of OUR children), but is it too much to ask for others to respect our decisions, whether they agree or not? We will make mistakes and I realize this...we've made enough already. :) This is also where I need a lot of grace, because I too was once without children. Oooo, how the things we say can come back and haunt us!

Okay, I think I feel better now. These feelings actually came out of combined circumstances starting from about and year and 1/2 ago. Thanks for, reading!

Monday, March 24, 2008


I'm not quite sure what a meme tag is, but sounds fun. I also got tagged by Fragile What? So, here goes.

The rules:
Write your own six word memoir.
Post it on your blog and include a visual illustration if you like.
Link to the person who tagged you in your post.
Tag six more blogs with links.
Don’t forget to leave a comment on the blogs you tagged inviting them to play along.

Wife, mother, friend; blessed with much!

I tagged:

Rian at A Day in the Life of a Moody Person

Becki at We Have Big Plans

Hidi Family

Party Time! And More

***She did it!!!!! My Avery pooped in the potty this morning! Yes, I may be a bit over the limit by putting a pic on the blog, but that's the kind of mom I am. :) I put her on the potty when she woke up this morning and as I was fixing her breakfast she hollered for me. As I got closer, she said, "I pooped." Well, how many times have a heard that before!? This time, no crying wolf. She stood up, and there it was, in all it's little bitty splendor! And no, I did not smell it to be sure it was poop. I trusted my eyes on this one. So starts the celebration. She got to write in her 'special' potty book, she got a 'special' sticker, and she got 5 M&M's. AND, of course, she wouldn't forget....she gets a party tonight. She'll go with Daddy when he gets home to go pick out her cake and icecream. When her daddy and aunt Zane called, she was very excited to tell them the news. Hopefully, this is the beginning of a continuing adventure!

***Update on Avery's trip to OKC. We picked Avery up at the 1/2 way mark on Saturday afternoon. She had a GREAT time with her aunt, uncle, and cousin. Her cousin has one of those big kid-size really moves Barbie jeep. Avery is normally afraid of it. She not only rode in the jeep, but she sat in the driver's seat and worked on driving it! My sister said she was well behaved and polite. And she got to show off her incredible hollow leg appetite. She's so tiny, you'd never believe how much she eats!

Friday, March 21, 2008

Letting Go is Hard to Do

Okay, all my children have at one time or another (actually several times) stayed the night at other places or with other best friend and in-laws. Not too far a distance at all. Yesterday, I met my sister half way (she lives in another state) to have lunch with her and my niece, and to give her Avery to take back and stay a couple nights with them. There was something different about this time. I knew Avery would have tons of fun because she loves playing with my niece (5) and she loves her aunt and uncle. But my heart had a hard time letting her go that far away without me. I'm better now, but I was surprised at my feelings when putting her carseat in my sister's car.

I'm not one to normally check up on my kids a bunch when they're with someone else. I have friends who will call every 10 minutes to check up....nothing wrong with that.....I just don't do that. I've done well this time too. I called last night after they were in bed to see how she did, and I called 1st thing this morning to talk to her. She's doing great.

One of the reasons we did this was to give it a test for the summer time, when we'd like for her to stay a week (or shorter, if she misses home) there. It's really been tough for my sister and I to have our kids live far apart. It's hard enough for us to live far apart. We are only 13 months apart in age and our oldest kids are only a year apart in age. ( A lot of "aparts" there) I think Jim has a hard time understanding because his family all live within 15 minutes of us. It's great most of the time (there's still those 'in-law" moments every once in a while), but you know how it is.....just not the same as having MY family when I need them. I've gotten somewhat used it since I've been here since I was 18. OMG, that's 21 years now (as of next week when I hit my last 30-something birthday). I definitely don't think we could have made it (mostly emotionally) without my best friend and in-laws here. They do so great with our kids and love them so much. My best friend even takes them all on at once by herself! And she loves doing it!

So, with growth comes heartaches too. But they're the good kind of heartaches, if there's such a thing.

Friday, March 14, 2008


We tend to take heartbeats for granted....unless you're waiting for one. I have a friend who has been trying to have a baby for 3 years. She's had 4 miscarriages and has not once heard a heartbeat....until today! I was blessed to be able to go with her and her husband to the RE doctor (her infertility specialist) for this baby's first sonogram. My friend, Rian, had a lot of fear going into it because the last time she went in for a first sonogram, there was no heartbeat. She had lost the sweet baby.

When we got into the room, I immediately got out my camera (actually, I took the first pic at her house this morning before we left). She's a scrapper, so she needed pics for the book, right? RIGHT! When I got the camera out at the office, she said, "Donna, don't act like a tourist." I ignored her. The doctor was kind enough to not be bothered by the pic taking. I think deep down, Rian is very glad pics are taken to remember this day! Right, Rian?

I was sooooo excited to see the smiles on their faces. We will continue to pray for the sustaining of this life and that his/her parents will experience the joy of holding and raising their first born child! I only wish I could be pregnant with her....oops, don't tell my husband I said that! hee hee

Wednesday, March 12, 2008


Ian has started this thing a few months ago about shutting doors. Well, it's more like slamming doors, but we're working on that part. Everytime I go around opening the doors to get ready for someone to come look at the house (up for sale), I turn around to notice Ian has shut them again. So, we usually get him packed up in the van to go, then I go back in the house and reopen all the doors. It's really kinda cute, cuz if I'm in the room, he'll go to shut the door and say "bye" he just now did. I'll go open it, he'll come close it, on and on and on. Watch, I just opened it without saying a word. Give him a minute and he'll be back to close it. Okay, not even a minute, it was 10 seconds. This time he left puppy with me...oh the joy! I'm going to open it again...15 seconds. Fun for hours!!

Sunday, March 9, 2008

Vomit Alert

If you get queasy at the mention of vomit you might not want to read on. :)

My children fooled me again. Ian seemed so much better on Saturday. If you hadn't seem him Friday, you'd never know he looked near death. Today we went to church and he was still great. Then, after, at grandma's he puked. Then, at home, he puked....twice in one hour! And I'm talking liquidy (cause he hasn't eaten much food), projectile vomit. Once on me, then second on the floor.

Avery was so cute. She came up and said, "Mama, Ian vomited?" "Yes, Avery, Ian vomited." "Mama, Ian barfed?" "Yes, Avery, Ian barfed." "Mama, Ian puked?" "Yes, Avery, Ian puked." I think she just wanted to play thesaurus.

Avery came home with 102.4 temperature. She went straight down for a nap. When she got up, she and Ian went outside and played.

Benjamin is acting like he's going to get sick, but I hope not. He's not eating well and is a bit whiney. I'm hoping he's just faking me out.

Hmm, wonder what they will be like tomorrow!

Saturday, March 8, 2008

Sick? Hmmmm

During the night the other night, Ian woke up (not a shock), but he was whining and had a fever. The next morning, he woke up a bit whiny and really lethargic, so I took his temp. It was 100.something. He looked not so good. After being up for maybe 2 hours, he wanted to go night-night again. A short time later he came out in the living room, waited for me to get to him, then vomited. He was really warm at this point. So I called the dr. and got him an appointment for around 3:00pm. Sure enough as the day went on, he started acting a little bit better. But I thought, "No, don't cancel the appointment. Just see what happens up til time to go." Well, by the time I got him to the dr., he looked really bad. When they took his temp, it was 103.6. She tried to look in his throat, but he wouldn't let her. She got a small peek and said it looked red. So, she was going to swab for strep. I warned her that he would throw up. The tech was supposed to come in with a towel or gown or something. Did she? Nope. I warned her. Sure enough, as soon as she tried to swab, VOMIT. The doctor thought it could either be strep or flu, but since she didn't want to take any chances in case it was strep, she went ahead and treated him for that with antibiotic. He was pitiful the rest of the day.

Okay, so this was just yesterday. We divied out Avery and Benjamin in hopes of keeping them from catching it....praise God for friends and fam. And'd never even know he was sick! I think a lot of it has to do with the other kids being gone. We've enjoyed him being so enjoyable today. We still want to keep the others gone, just to be on the safe side. Our luck, we would get them home and Ian would start vomiting again. I'm also glad Avery is able to be out having fun without having to share attention or getting hit from him all the time. I know in time, their relationship will change for the better. They really do love each other, but I also think they enjoy time away from each other. Who likes to share attention anyway?

I just love my children!

Thursday, March 6, 2008

Disgust - a - What?

Puppy - Before

Puppy - After

Okay. I mentioned once before that I was going to blog about Ian's puppy. We have affectionately named this puppy Disgust-a-puppy. Just look at those before/after pics, and I'm sure you can figure out why. As you can see, it used to have two eyes and a mouth. I recently found the last eye on the floor.
After we weaned Ian from his pacifier at about age 2 1/2, he gained a greater love for his 'puppy'. The way he shows his love to puppy is to chew on him. Needless to say, we needed a game plan for when puppy needed a 'bath'. So, we bought another one. Simple enough. When puppy A was chewed on for a day or so, we'd wash it and get out puppy B. Problem solved. That lasted for a nice while. Then all of a sudden, Ian wouldn't have anything to do with puppy B. He would throw him, and keep saying, "puppy" until he got puppy A back.
Now, I have to work harder to stay on top of keeping puppy clean. If I forget to throw him in the washer while he is at school, it's all over for that day. The first thing he looks for when he gets home is puppy.
Both grandma's have done 'surgery' on puppy, but eventually the stitches come out. The big joke now is if Ian throws puppy at you. Basically the whole room says, "GRROSS!" Except Ian of course. He just can't see the grossness.
Maybe, hopefully soon, Ian will outgrow puppy, or start to grow to like his other one once again. Until then, puppy is just part of the family.

Tuesday, March 4, 2008

Feeling' Down

Yeah, so I'm not doin' too good today. Actually I haven't been for a while. I'm not sure what it is. I basically feel defeated. My body hurts (I've been dealing with back pain for a while), I'm tired, I'm frustrated....I'll just stop there. Yes, there are things I can probably do about each of those, but to be honest, I'm just not motivated. I'm putting on my happy face, trying to beat it all out of me, but it hasn't worked yet. I get up, pray that I will receive His strength and joy and gentleness, and that I would only seek His approval (which is funny because I already know I am marked with an "A" - approved, accepted, adopted - in His eyes). I make it for a little while, then I let the "go ahead, beat me up" take over. I'm usually tougher than this. Ian has been a bit louder and more hyper than usual. Maybe the added craziness is getting to me...I am a FX carrier after all. :) And although I'm surrounded by people who are very involved, I still feel very alone. Sounds crazy, I know, but I bet a lot of you moms can totally relate to that....even those with great husbands. It just happens sometimes.

So, my plan? I just got up. So before I get the kiddos up, I will go once again and seek the face of God. I've no doubt He has something sweet for me today.

Monday, March 3, 2008

Nine Words and Three Stickers

Saturday, Ian came into the kitchen as I was making his lunch. I guess he decided he wouldn't wait until it was ready to thank God. So, he folded his hands and clearly said, "Thank you God for Avery, Ben, Mommy, Daddy, today."

Yesterday he got 3 stickers for tee-teeing in the potty. Two of those times, he let me know he needed to go. He does this by walking around with his pants to his feet, trying to pull off his diaper.

Go Ian!

Friday, February 29, 2008

Time for Joy

I'm so excited because my good friend, Rian, and her husband Josh are expecting a baby. This is not just any ordinary thing though. Josh and Rian have been struggling with infertility for the past 3 years. She has had 4 miscarriages. They have been married 8 years. They have been praying so hard for a baby they will meet here on earth. She goes in for her first sono in a couple of weeks. I would like to ask you to join me in praying for this wonderful couple and their baby. Pray specifically for this baby to sustain and grow, and that he/she and Mommy & Daddy would meet n 9 months.

Like me, I'm sure at least most of you have had at least 1 miscarriage. We also had a difficult time conceiving, but conceived Ian via IUI after about a year of trying. I've only had 1 miscarriage (which was way enough), so I can only imagine what losing 4 must feel like. Josh and Rian have been up and down on a rollcoaster ride, but have done very well trusting the Lord for His best. As you might expect, they work each day to let their joy overshadow any fear.

I can hardly contain my joy for them and am privileged to be walking along side them. We love you Josh and Rian and Baby!

Thursday, February 28, 2008

Wah-hoo Moment!

This is a wah-hoo moment for our household.

Well, Avery has been doing great tee-teeing on the little potty. We're still working on doing the 'other' in the potty. Gotta look for some good books.

The big story is Ian working on tee-teeing. Today before taking a shower, he TOLD me he needed to go tee-tee. He has occasionally been going on Avery's little potty, but he's really getting kinda big for it. But, hey, whatever works! Anyway, today he wanted to stand up and tee-tee at the big potty (which is how they work with him at school). AND HE DID IT! Usually he gets so excited, he squirts a little, then stops (then sometimes finishes on the floor). I used Avery to talk him into going more. It worked. He even came back to the toilet a minute later to finish up. Oh, he was so proud (not to mention how proud Mommy and Avery were of him!). He high-tailed it, naked, to his bathroom to get his 2 M&M's and put a sticker on his calendar. Then he was proud to call his Aunt Judie and tell her what he did.

I know it will still take a while, and we will go through lots more diapers, but I'm sooooo proud everytime he goes! Every step is a big one to me! Wah-hoo!

Monday, February 25, 2008

Too Many Questions

I always knew 2 year olds start to ask a lot of questions. I just wasn't expecting some of the ones I get. Avery is very interested in my body parts. When asked about my upper parts, I told her it was called a chest - sounded safe. Today she asked about the clothing item I was putting on my chest. Forgetting what a great memory she has, I went ahead and told her it was called a bra to cover my chest. Yeah, well, she then came up, lifted her shirt and said 2 things..."Mama, I have a chest too," and "Mamma, I need a bra." G R R R E A T!

Saturday, February 23, 2008

Would the REAL .... Please Stand Up!

Okay, after posting the previous blog, I kept typing in my kids' real names, and then I kept mixing the names up. So, I've decided to post as their real names. Ian is our oldest son (4), Avery is our daughter (2), and Benjamin (10 months) is our youngest. Whew! I feel better now.

Veggie Tales, Here We Come!

One of the movie theaters near us has a special showing of certain movies once every couple of months or so, just for special needs families. They show the movie in one of the theater rooms and it's only for special needs. This means they don't play the movie as loudly, they adjust the lights before the movie, and of course, the kids are welcome to make noise or walk around. This particular theater serves food as well - a must for my children. We took David to see Ratatouille (however it's spelled). He liked it, but didn't make it through the whole movie. It was quite a long one.

We decided to take both James and Grace to see Veggie Tales' The Pirates Who Don't Do Anything this morning. I couldn't wait to see Grace's face when she saw the big screen. During the week I kept preparing her for the movie and saying it was on a big screen. Then later she would come up and say, "Mommy, I want to go 'scream'." It didn't take me long to decipher that that was actually "screen".

Grace's face was priceless when she saw Veggie Tales pop up so huge! She also did really well with the size of the room and the people. She didn't act as nervous as I thought she was going to. She even said, "bye bye" and waved to one of the workers.

They did really, really well during the movie. I think they may have liked the food even more than the movie! James was able to walk around, dance when music came up, and talk to anybody he wanted to.

I met a man sitting next to me with his son and had a very interesting conversation. When I told him we had a family of Fragile X'rs, he proceeded to tell me that he was the first in five generations to NOT have Fragile X! Imagine, someone who actually was familiar with the disorder. He does, however, have a boy with Down Syndrome. He also has a sister who has a 5 year son with Fragile X and CP. This same sister is 47 years old and has a daughter who has her own family! Wow! His story is very interesting.

The first time we went to one of these movies, we didn't really talk to anyone else. We were more preoccupied with how James would do. After today's conversation I decided I was going to do better at meeting other families at these events. I only wish I would have gotten this gentleman's number so that maybe our families could have hooked up at some point.

We had a great time!

Thursday, February 21, 2008

They Really DO Love Each Other!

I was witness today to a beautiful sight. James and Grace were sharing and playing WITHOUT FIGHTING this morning. They were rolling the ball to each other and taking turns bouncing it. The beautiful moment lasted about 15-20 minutes, but it was a glorious 15-20 minutes!!!!!!

Wednesday, February 20, 2008

My Child Can Do More!

Oh, how I hate the 'testing' time at speech therapy for James. She's a great therapist, so I'm not dogging her at all. However, she only gets him 45 minutes once a week, and he's out of his 'element' there, with new toys, new books, etc. AND, sister is not there to distract him, although he gets plenty distracted even without her. Oh, and let's not forget how difficult it is for him to do things "on command" when they only ask once or twice. And he only has 45 minutes or less to say things 'sporatically'. So, when I was told that in a year's time he's only made about 50% or less improvement, I was less than ethusiastic. I was downright depressed, and cried all the way home. I'm not quite sure what I was expecting. He's got Fragile X. Without a miracle, he's not going to drastically improve over time, especially as things get more complicated. BUT EVEN THE SMALLEST IMPROVEMENT IS GREAT FOR ME! So, I went through a lot of emotions. As I was driving home, the Lord showed me some great things.

One, He reminded me of all the things I mentioned above about how once a week 45 minute testing in therapy just isn't reality for testing. His everyday life at home and at school are better indicators. He also showed me how far James has come in his vocabulary, especially since Grace has been talking.

Second, after we got home that day I started to fix James' lunch. He came up to me and sporatically said, "May I have turkey please." FIVE WORD PHRASE! I decided reading the same books over and over and over and over again is a gem. That phrase came from the book, "May I Have a Cookie Please."

So, needless to say, I couldn't deny all those reminders and blessings. The Lord also reminded me that He alone entrusted my husband (okay, I have to fess up....his name is Jim....I can't keep calling him Henry - doesn't fit him - HAPPY RIAN?!) and I with these great kids, and He alone will continue to hold all the plans in His hands. While I wish I could see them all layed out, I know that would ruin all the joyful moments of watching them happen.

Thursday, February 14, 2008

Marathon Mom

Okay, I wanted to give my sweet and wonderful husband a break. So, I decide to go to Oklahoma for my sister's 40th birthday party....with all three kids! What was I thinking! Actually, it wasn't all bad. The 3 1/2 hour road trip took a bit longer due to 4 stops. One to seatbelt James back in after he undid himself. One to check on David, who was crying and NEVER cries on roadtrips, and one to clean up James and change his clothes after he vomited! Yuck. I forget the last reason...oh yeah, I was hungry and wanted to get something to eat on the go. I can deal with poop and pee, but vomit...not my forte. Henry is the one who saves the day on that one, except that day. To top it off, James vomited again (smaller this time) about 10 minutes from reaching our destination. Okay call me a horrible mom, but I didn't stop. After he had sneezed once and, well, I won't even say what came out, I figured he was messy enough and could hold on til we stopped.

So we get there and guess what. I basically missed the party! Must have been the shortest party in history cuz I didn't think I was THAT late. My brother in law was kind enough to come to the van to get James and stick him in the tub. I wouldn't let anyone near him cuz he smelled so bad.

At first, I figured his vomiting was due to getting hyperaroused, which happens quite often. The next day after nap time I found out this wasn't the case. He woke up extremely flushed with 103.8 temp. Could it have happened at any worse time!? He puked again that day all over the carpet. Again, brother in law came to the rescue with the clean up. I hope they were able to get the stain out better after we left! Poor James was so sick and so sad to watch. However, he was WAY calmer than normal. My husband and I always joke that as much as we hate for the kids to have to go through sicknesses, they are easier to handle in some ways when they're sick....more calm anyway. So, he sat in the chair watching Cars most of the day while Grace happily played with her cousin without her brother chasing her to hit her.

That was basically the worst of the trip. James' fever never really went down and he didn't eat a lot. On the trip home I called the pedi to get an appointment for when we got home. They said they couldn't fit him in!!!!!!!! 103.8 fever and they can't get him in?????? Hmmmm.

We only had to stop once, really quick, to retrieve James' "puppy" (I'll have to blog on "puppy" someday) that he through out of reach. Then, about 5 minutes or less from got it, Grace vomited! So I did clean up duty on this one since Henry was still at work. So, not only did I have the kids all weekend, now they've been home from school all week too. Yes, I've lost my cool a few times, but overall, not a bad week. Funny thing is, when Grace went to get in the van 3 days later she went to get in James' carseat. When I asked her why she was getting in his seat, she said, "Mama, vomit in my seat." So I explained the glory of the washing machine!

Tuesday, January 29, 2008

Fragile X Reality

Well, I recently got some news that my 18 year old niece (I'll name her Renee) is planning on moving in with her boyfriend. I don't mean to offend anyone out there, but this is not something I believe is right to do. Now, let me also say that I have not had an angel of a life by any means. Luckily, the Lord came and saved me and I have had a personal relationship with Him as my Lord and Savior since 1996. So, just to set the record straight, although I do not agree with what she is planning, I am NOT judging her. I love her all the same.

Okay, now I can go on. Basically I want to just get off my chest that I am sooooo worried about her getting pregnant. Bit of background - my older sister (40) got tested for Fragile X after our 1st diagnosis. She is a carrier, but her daughter is not. My oldest sister (51 and mother of Renee) has not been tested and doesn't plan on getting tested because she won't be having anymore kids. She has 2 kids - my 25 year old nephew and Renee - who also have not been tested. My nephew and I have a very close relationship and he knows exactly how I feel about the importance of him getting tested before he thinks about marrying someone. He would probably do it just to get me off his back! :)

Renee is pretty immature and easily influenced, as you might figure for an 18 year old girl in today's world. I think she also has the mentality of most 18 year know, the one that says, "Oh, it won't happen to me" or "You're just exaggerating what could happen". Thus, she would have no intention of getting tested, at least not now.

My problem is that I just don't think the rest of my family (who does not live in the same state as me and does not see my life day after day) sees the reality and severity of what could happen. I can understand this from their point of view, not having to actually LIVE with the full mutation Fragile X. But being the one living the life with my awesome children, I see all the reality. While I'm sure they agree that the pre-marital sex is not what God intended, they are more focusing on "get to the doctor and get on birth control." Hate to be the bearer of bad news, but that doesn't fix the problem and there are no guarantees with that. There's always the chance of the pill not working, forgetting to take it, etc. I would rather her see a different side of this. Problem is, we don't really have a close relationship. It's not a bad one, just not close.

Maybe I'm too much into trying to 'fix it' or protecting her. But is that really a bad thing in this circumstance?

Monday, January 28, 2008

To Go or Not to Go

My husband (I'll name him Henry) and I had a difficult 'communication' time this past weekend. We're better now that we had a talk and understand where some miscommunication happened. I want to say that he probably needs some time alone and so I was going to take the 3 kids to visit family about 3 hours away in a couple of weekends. I think I just try to figure him out and then try to figure out what he needs, then I try to fix it. Things like, I try to farm out the kids if I can when I have a night out, or I try to set him up with time with friends, etc. Maybe he doesn't really want me to be doing these things. He can be difficult to read because he's so laid back. But after these years of 3 fragile x kids, you tend to change a bit. Not necessarily for better or worse....just change. You almost have to just to survive.

I don't do a very good job at remembering that men and women deal with things differently. What I might need is not what he might need. I should just stop my 'mothering' on him and let him decide what he needs and let him do it. I just get sad when I see him down or 'not quite right'. So, being a woman, I want to make it better. Problem is, I don't always make it better.

We have a hard time sometimes relaying our feelings to each other because a lot of the time we don't even understand what we're feeling ourselves. Is it tired? Is is stress? Is it sadness? Is it frustration? On and on and on. The only way we know how to answer is 'YES' to all of the above.

We have a GREAT support system. While we are very grateful and realize after talking to others with fragile x families that we are very blessed, it's sometimes hard to call on them without feeling like we've been beat. Most of the time we can get past this, but I hate feeling like I can't handle life without so many 'breaks' in between. I know, I know, I should just be grateful and take the opportunities. We are and we do, but it can get hard to. Sometimes when I tell my little girl (I'll name her Grace) that someone is coming over, she'll say, "Mama stay here?" I hate that she thinks I'm going to leave everyime someone comes over. Overall, she handles it well and doesn't seem so afraid when we leave (we talk a lot about "mama always comes back cuz mama loves her babies"). But still.....

I'm also about to start my period. I tend to think and analyze more than I should doing these times. :)

Happier notes next time.