20 April 2013

Gluten free, casein free - take one

We have "officially" started our gluten-free, casein-free diet and I think it's going pretty well. I looked up some recipes that are gluten free, made my grocery list and hit the commissary. I was expecting our grocery bill to increase, and it did.

I was actually really surprised at what the commissary offered in terms of gluten-free, considering that the commissary is a regular grocery store (i.e. doesn't specialize in any particular kind of food market, like the local Sprouts grocery store here in Albuquerque).

This is what our menu is for the week:

Monday: spaghetti with gluten free pasta - Mike couldn't even tell the difference, and I don't think the kids did either.

Tuesday: Southwest Steak Salad, courtesy of Premeditated Leftovers (thank you Alea!). It was so delicious and I almost felt guilt eating so healthy. Basically, it was grilled steak, red pepper and onions atop a mixed green salad with celery, carrot, cherry tomatoes, cucumber (that's not technically in the recipe, but I had some that needed to be eaten, so I threw them in) and topped with an incredibly delectable mustard honey lime dressing.

Wednesday: It was baked potato night at the Chapel's Family Night! Yay! Very easy to go gluten-free, a little harder to go casein free (no sour cream or butter, sniff, sniff).

Thursday: Jambalya - I need to do further research on my chicken bullion, I think it might have gluten in it.

Friday: we're going to a friend's house for dinner. :) (Excited about that!)

Saturday: minestrone soup with herbed bread, both recipes courtesy of Premeditated Leftovers again. :) I made the gluten free veggie broth yesterday in the slow cooker - it was surprisingly simple and smelled so great while it was cooking.

Sunday: Slow cooked honey glazed ham with pineapple, mashed sweet potatoes (I'll have to skip the butter, sniff, sniff), and green beans.

Monday: roast with potatoes, carrots and mushrooms that I'm going to cook in the slow cooker.

All in all, I'm pretty excited about this menu. :)

Butterfly has a choice for breakfast of gluten free chex cereal with almond milk (which she really likes), or gluten free pumpkin bread (BEST pumpkin bread I've ever had - hard to believe it's gluten free, but I know it is because I made it myself, recipe again from Premeditated Leftovers).

For lunch I've been doing various fruits, gluten free rice cakes, more pumpkin bread, fruit snacks and veggies. I found a recipe for hummus online, also gluten free, and Butterfly really loves hummus, so that's lucky. :) Actually, everyone so far really likes hummus, so I'm sure we'll be eating a lot of that around here.

So far, I think we're off to a pretty good start on a gluten free, casein free diet. :)

18 April 2013

Sweet Times

I just wanted to capture a little snippet of my day here.

A few weeks ago, a precious, sweet moment was born out of crying and chaos. I putting Little Man down for his nap and he was really not happy about it (normally it's not a problem and he just goes and lays down with no fuss). In the past, I would have just shut the door and let him cry and within 10 minutes or so (he's 3 now), he would stop and be quiet.

But on this particular day, I just really felt that he needed me. He needed reassurance of my love for him and he needed attention. So I laid down on the bed next to him, and I hugged his luvie, Squawky, and covered up with his blankie. The crying immediately stopped. This was new - what was Mommy doing?? said the look on Little Man's face.

"My Squawky", Little Man whispered, climbing into bed and laying down next to me.

"My Squawky", I whispered back, smiling at him.

"My Squawky," Little Man whispered again, curling up close to me and snuggling in.

I handed Sqawky over to him.

"My blanket", Little Man whispered.

"My blanket", I whispered back, giving him a hug and a kiss.

"My blanket", Little Man whispered, completely calm now.

"Do you want to cover up?"

"Cover up please."

"Okay", and I transferred the blanket over to Little Man and he smiled contentedly and cuddled Squawky as I tucked in his blanket around him.

I lay there next to Little Man and just looked loving into his beautiful, deep brown eyes. My sweet Man Child, my precious Little Man.

Now we do this just about every day. It's become a little five minute nap time ritual and I absolutely love it. It's a few minutes in a busy day that is quiet, peaceful, tender and filled with love. While I lay next to Little Man, I tell him how much I love him, and what a good boy he is and how proud I am of him.

I think he really needs this time. And I do too.

14 April 2013

Carrying a Burden

Last night I couldn't sleep, of course, so there I was laying awake at 3 am or something like that and I just had to get up and write what was floating around in my head. So here it is:

"Carry one anothers burdens and so fulfill the law of Christ." Galatians 6:2
What is the law of Christ?
Love one another.
"And this commandment we have from Him: that he who loves God must love his brother also." 1 John 4:21
"And this is His commandment: that we should believe on the name of His Son Jesus Christ and love one another, as He commanded us." 1 John 3:23
Since the news of Butterfly's developmental delays, I have felt like I have been placed with a huge burden. The knowledge of it weighs heavy on me, as does the possibility of what is to come - therapies, schedule changes, uncertainties. I have been going through a sort of grieving process, as Sierra said I would, and I have to be honest, I have found myself crying out of nowhere - driving down the road, fixing food, reading. It's been tough.
The Lord has given me wonderful, amazing friends though who have rallied around me with love and support and prayer for which I am so thankful. They are the embodiment of Galatians 6:2. They are the fulfillment of the law of Christ - by loving me, for which I am so humbled, so grateful, so thankful. They are love in action. I don't feel so alone and the burden feels lightened. Praise God for friends who fulfill the law of Christ!
"Thank you Lord Jesus for sweet, loving friends and family. Thank you for Dad, Mom, Ruth, Sierra, Natasha, Liz, Lindsey, Nikki, Carla, Debra, Angel, Elizabeth and the ladies in my 1 John PWOC Bible study: Susan, Jodi, Caitie, Sherry and Hang. Thank you Lord so much. In Jesus name, amen." (I hope I didn't miss anyone!)

"And we know that in all things God works for the good of those who love him, who have been called according to his purpose." Romans 8:28

Unexpected Journey

Often times in the course of history, or great literature, those who find themselves on journey's for the greater good of another person, or group of people, are often not put on that journey by choice.

Either fate has resigned them to it, or they were chosen for it, but either way, because of their moral character and/or dedication to those they love, they stay on the journey, no matter the cost, and often at great cost to themselves.

I find myself about to embark on an unexpected journey, of a kind. And even though I don't particularly want to be on the this journey and certainly didn't choose it for myself, it is one that I will not deter from until the destination is at hand, the goal obtained. Even though I'm not entirely sure what that looks like right now.

I have been writing about in recent posts how Butterfly has been found to have developmental delays. (I hesitate to write diagnosed because has not had her official diagnostic evaluation yet, but it seems to be clear that she needs treatment and there is most definitely a problem.) My life is on the cusp, I feel, of changing in dramatic ways; ways that perhaps I cannot even imagine at this point and time. I am in some sort of limbo between finding out/realizing that there is a problem and defining what the actual problem is. It's weird. I don't really like. It's rather paralyzing. I wish that there was less time between appointments. Less time for agonizing uncertainty. Less time for speculation.

Certainly the whole family is on this journey as well, and we will all make changes. I have read a little that a change in diet (no dairy or gluten) can help some children with autism. I don't know if Butterfly has autism or not, some of my friends think she doesn't, but I haven't ruled it out of the realm of possibilities, which is terrifying in and of itself in a myriad of ways (and one reason I have not done any research on autism itself). Anyway, I am putting the whole family on the CF/GF diet for minimum 90 days. CF/GF is casein-free/gluten-free. Basically no diary, no gluten.

And we're going to start this week. As soon as I go grocery shopping. Which will be after I get some CF/GF recipes.

This journey is going to get really hard, really fast. We have some cheese lovers in this family. And some ice cream lovers. And some bread lovers. I want to try it though. If it doesn't work, then we've only lost three months of eating dairy and gluten and most likely a bit of money since I'll be upping our grocery budget 1.5x to cover the anticipated cost of this. (Thank God my student loan bill went down  considerably after a generous donation from Mike's parents and a hefty tax return put towards said loans.)

I just feel powerless. I feel like I'm watching my sweet little girl slip away from me. I feel like Butterfly is regressing and I don't know exactly what is going on, much less how to deal with it or stop it. Maybe a diet change will help, maybe it won't. I don't know. But I have to try something. Besides prayer, of course.

I'm going to try to chronicle this journey I find myself on here on my blog. Just as I chronicled the journey through bed rest during Flower's pregnancy. And a plethora of other topics in the last five years of blogging.

Blogging is a good catharsis, and who knows? Maybe someone will read this and be helped.

Let the journey begin.

Not textbooks this time

I recently posted about how Butterfly had a screening appointment and we found out that she had some developmental delays that are to be further evaluated.

It has been a rough almost-week since then. Just letting the news sink in. Mike and I are both very saddened by this and we fear that she has autism. I don't know if Butterfly is autistic or not, but she the more I read, the more signs I see.

My sweet Mom sent me an email with some research on developmental delays and assumed I had already been researching, but honestly, I haven't been. I know I usually research things to death, but this time I just feel paralyzed about doing research, at least so far. Why? Honestly, I'm afraid of the answer. Which is just ridiculous because I have always believed that knowledge is power and equates to the erasing of fear. Whenever I have feared something in the past, I have researched and researched and read and read and poured over materials from a variety of sources until I learned what I considered to be a sufficient amount of information to no longer be afraid.

But this time, I'm just waiting. I am reading a book a friend gave me, so I guess you could call that researching, but I'm not highlighting every other line or taking copious notes while I read it. Maybe I should so I don't have to read it twice.

Part of what has gotten me so down is that I feel that I have failed in seeing the changes in Butterfly before now. I'll back up.

Let's go back to summer 2008 and that little pink cross on the stick I just peed on. Holy cow, I'm pregnant! Then panic: I'm pregnant! I have no idea on earth how to be a parent and it's scary. Really, really scary. I'll be in charge on a tiny, completely helpless human. They're going to call me Mom!

Research time! I took parenting classes, I read books, I read articles and posts online. I was involved in two government studies that educated soon-to-be-parents on being parents when we lived in Oklahoma (Family Expectations and Parents as Teachers). I took classes with the Health Department and even at UCO, where I was going to college at the time. I researched the heck out of parenting. And I considered myself knowledgeable (foolish pride, I know now). Three days before Butterfly arrived, I finally stopped feeling terrified and felt ready. A lot of that was also God's peace filling me.

So after all that learning and educating and researching, I still missed all the signs. Talk about ouch! I just can't believe I missed it. (Have I ever mentioned how I'm a recovering perfectionist?) The more I hear and observe about developmental delays and the more I watch Butterfly, the more I can't believe that I missed it and the realization that something terrible, something really wrong has happened to my sweet little girl right under my eyes and it is very scary indeed.

I'm not to the point that I feel it is too late, but how do I know that, really?

And then I read one of the final devotions is Lysa TerKeurst's book, Unglued Devotional on Friday. And I had to put the book down and cry. I'll copy what I wrote in my journal:

"Let us approach God's throne of grace with confidence, so that we may receive mercy and find grace to help us in our time of need." Hebrew 4:16
"And that's what makes this parenting thing so stink' hard. There are rally no textbook answers. Only God can prepare me with the wisdom and discernment necessary for each and every potentially unglued parenting moment." Lysa TerKeurst, Unglued Devotional, page 180.
Butterfly was screened through Child Find APS [Albuquerque Public Schools] on Tuesday of this week and found to have several developmental delays. I have been so shocked by this news and am going through a grieving process. One thing that has been bothering me is that I took a lot of parenting classes and researched as much as I could so I could get parenting "right" and I still missed this.
And then I read the above Scripture and quote. Wow. Right to the heart. "There really are no textbook answers." And textbooks, studies, literature, etc were how I tried to find the right way to parent. And they failed me.
"Only God can prepare me [to parent]." I need to rely more on the Lord, for only He can guide me and help me through this time of uncertainty.
"Dear Lord Jesus, please guide me and help me through this time of uncertainty with Butterfly's developmental delays. Teach me and show me how to care for and parent Butterfly. I don't know what to do and I'm afraid I'll make things worse. Please help me Lord God. Help me to rely on you and trust in you with all my heart and lean not on my own understanding, but to acknowledge you in all my ways so that you can direct my paths, and Butterfly's too. In Jesus' name, amen.""

So there you go. Man (and his wisdom) can always fail you, but God never will.

12 April 2013

Unglued Devotional by Lysa TerKeurst




If there was ever a book that I needed to read right now, in this moment and season of my life, it is this one. Lysa TerKeurst’s Unglued Devotional is poignant, witty, gut-wrenching and filled with the truth of the Word of God.  Using 60 short devotions, each based on a passage of Scripture, Lysa writes to women who often feel unglued by emotional reactions in their lives and how they handle those reactions. Speaking as a woman who has been there, lived that, Lysa writes from the heart in a such an honest way that you feel like you can completely and totally relate to her.

I loved this book, but I must say that I loved because I felt like Lysa observed my life, read my thoughts and then wrote the book just for me. Every single one of the 60 devotions had a truth that I could apply to my life. I laughed, I cried, I underlined and highlighted and circled and starred a lot. Some of the devotions hit so close to home, I had to put the book down and just cry, and then pick it up again and let the words act as a balm to my soul, guiding me to the Lord and His truths and promises in the Lord.

I highly recommend this book to any woman (or really, any person) who has ever felt like they have come unglued again and again and they just want to fix it but they don’t know how.  You aren’t alone in being unglued and Unglued Devotional may be just the book you need to read so that you can start to get out of the unglued rut and start applying the promises and truths in God’s Word to your life.

Disclosure of Material Connection: I received this book free from the publisher through the BookSneeze.com <http://BookSneeze.com> book review bloggers program. I was not required to write a positive review. The opinions I have expressed are my own. I am disclosing this in accordance with the Federal Trade Commission’s 16 CFR, Part 255 <http://www.access.gpo.gov/nara/cfr/waisidx_03/16cfr255_03.html> : “Guides Concerning the Use of Endorsements and Testimonials in Advertising.”

10 April 2013

Thoughts on developmental delay and plans




“For I know the plans I have for you,” declares the Lord, “Plans to prosper you and not to harm you, plans for a hope and a future.” Jeremiah 29:11

Plans, plans, plans. I am a planner. However, most of my planning has come to no avail. That hasn’t stopped me from planning though. Every once in a while the Lord will let me keep some of my plans, but not for long, because He has something else planned for me.

It seems my plans for next year will probably not be unveiling like I thought they would. . . .

You see, today, Butterfly had a screening appointment for some developmental delays . . . and it seems that she needs further evaluation because she has quite a few developmental delays. She doesn’t understand a lot of what people are saying . . . what I say, what her teachers say, to her.

To back up, I first became concerned about four to six weeks ago when she started stuttering. This was very disconcerting to me. I thought maybe it was because she couldn’t get her words out fast enough, like she had more to say that she could get out – but then sometimes she would get frustrated about her stuttering.

So I started to pay closer attention to how she acted and reacted in various situations.
 


And then there was the morning I asked her to retrieve some train track pieces that had fallen behind the couch (actually they were put there by Flower, but anyway), I asked Butterfly to go get them. Instead she took some train tack pieces and put them behind the couch. I repeated my instructions and she didn’t seem to be getting it. Finally on the fourth try, she seemed to understand what I was asking her and went and retrieved said train tracks. This worried me, that she didn’t get the instruction the first time. She was just about to turn four years old when this happened (turning four was just days away).

I asked her teachers about this kind of behavior and they confirmed that yes, sometimes Butterfly didn’t seem to be understanding what was being asked of her or would do the opposite.

At Butterfly’s four year well child check a few days later, I brought this all up with her pediatrician, and her pediatrician confirmed that this was worrisome. I had already by this time scheduled an appointment with Child Find APS [Albuquerque Public Schools] for an evaluation for her stuttering, so I was advised to bring up the possibility of verbal processing delays.

Today we had that screening appointment.

Shocked. That’s what I was. Shocked at how little Butterfly actually understands. That she has delays in language processing, gross motor and social interactions.

The appointment went something like this:
 Butterfly sat in a chair at a small table with the evaluator and myself. There was a stack of colorful blocks in front of her. Butterfly was asked to stack the blocks, which she did very well. Then she was asked to name the color of each one, one at a time, which she was able to do. Then she got to pick one block out of the pile and the rest went away.  “For I know the plans I have for you,” declares the Lord, “Plans to prosper you and not to harm you, plans for a hope and a future.” Jer 29:11

Plans, plans, plans. I am a planner. However, most of my planning has come to no avail. That hasn’t stopped me from planning though. Every once in a while the Lord will let me keep some of my plans, but not for long, because He has something else planned for me.

It seems my plans for next year will probably not be unveiling like I thought they would. . . .

You see, today, Butterfly had a screening appointment for some developmental delays . . . and it seems that she needs further evaluation because she has quite a few developmental delays. She doesn’t understand a lot of what people are saying . . . what I say, what her teachers say, to her.

To back up, I first became concerned about four to six weeks ago when she started stuttering. This was very disconcerting to me. I thought maybe it was because she couldn’t get her words out fast enough, like she had more to say that she could get out – but then sometimes she would get frustrated about her stuttering.

So I started to pay closer attention to how she acted and reacted in various situations.


I asked her teachers about this kind of behavior and they confirmed that yes, sometimes Butterfly didn’t seem to be understanding what was being asked of her or would do the opposite.

At Butterfly’s four year well child check a few days later, I brought this all up with her pediatrician, and her pediatrician confirmed that this was worrisome. I had already by this time scheduled an appointment with Child Find APS [Albuquerque Public Schools] for an evaluation for her stuttering, so I was advised to bring up the possibility of verbal processing delays.

Today we had that screening appointment.

Shocked. That’s what I was. Shocked at how little Butterfly actually understands. That she has delays in language processing, gross motor and social interactions.

The appointment went something like this (this is not verbatim, mind you):
 Butterfly sat in a chair at a small table with the evaluator and myself. There was a stack of colorful blocks in front of her. Butterfly was asked to stack the blocks, which she did very well. Then she was asked to name the color of each one, one at a time, which she was able to do. Then she got to pick one block out of the pile and the rest went away. 



The evaluator asked Butterfly to put the block on the table, then under, then behind her, then in front of her and so on. She couldn’t put the block behind her until it was demonstrated.

Then Butterfly was shown a strip of paper with a cat, a horse, a bird, a dog and a person, in that order, on it. She asked to name each one, which she did.

Which one flies? Butterfly points to the bird and answers. Yes, good.

“Which one says meow?”  Butterfly is not sure . . . “Horse says neigh.” “That’s good, but which one says meow?” Points to the dog. “Which one says meow?” Not really sure . . .

Okay, moving on.

“What do you do when you get hungry?” “chocolate” “What do you do when you get hungry?” “find easter eggs!”

“What do you do when you get tired?” “Special treat!” pauses, then “Brave!” [a favorite movie]. What do you do when you get tired?” more random answering.

“What does Mommy do when she gets tired?” “Mommy goes to the doctor!” [internal haha for me here]. “What does Mommy do when she gets tired?” “Mommy lies down at the doctor.”

Butterfly was asked to copy a circle on a piece of paper. Scribbles all over the paper. Instruction was repeated three more times and finally on the fourth try, she did a wobbly partial circle. Same with a line, although it wasn’t straight at all.

And so it went on like this. No, Butterfly can’t dress herself entirely, she can only put on underwear and pants sometimes.

When asked to name a friend at school, Butterfly talked about Little Man. When asked again, she said Little Man’s name again and signed “brother”.  She couldn’t name a single classmate.

She can stand on one leg for at least two seconds, but not the other. She can jump (yay!).

She passed her hearing test and the vision test (yay!) so we know that she doesn’t need further evaluation for that.

In four or so weeks we go back for an thorough evaluation appointment, which will be five hours over two days (two and a half hours each day) and from there Butterfly will get a diagnosis and a treatment plan, whether that will be speech therapy, occupational therapy, physical therapy or special preschool at a local public school, or a combination of any or all of the above.  This will start when the new school year starts in August.

So for now we wait. And ponder how in the world did we (Mike and I) as parents miss this?? How could I miss this? I spend every day with her. Hours every day. I’m a stay at home mom. I don’t work outside the home. I only volunteer at the chapel when we’re all already there. I don’t go to school. How could I miss this? How could I miss all these signs?

Looking back, I can see where things might have been noticed . . . why didn’t I do something? I’m a knowledge collector for crying out loud. I have researched so much about parenting and child development and when a child should get screened and yet I missed what was right in front of me in my own child. What kind of parent am I?

Even my dear friend Sierra mentioned that I should have gotten Butterfly checked out a year ago. I can’t understand why I didn’t. I feel like I’ve been absent in my own life, but I don’t know where I’ve been or what I’ve been doing. I mean, I’m at home. I don’t want TV. I only watch a movie at night after the kids are in bed and asleep.  Same with blogging and reading . . .

Am I just so busy with life, taking care of three small children making sure they’re fed three times a day minimum and laundry is kept up with and the house is somewhat decent that I was too busy to notice what was going on with my own child? The precious human that the Lord has given me to watch over and protect?

How am I doing those things if I don’t know what’s going on with her? I feel like I don’t even know what I’m doing as a parent . . .  I feel so . . . lost . . . I’ve doubted my parenting abilities many times, as I’m sure just about every parent does, but this . . . I can’t believe I missed it.

I am grateful that we are in a city and a country where Butterfly can get help and that she will be able to get the help that she needs . She won’t have to be like this her whole life.  She can get therapies and tutoring and lots of help from professionals who are trained specifically to help her. That brings me great comfort.

I am grateful for my friends who have comforted me and rallied around me in support today. Just listening. Sharing their story down this path.  Being in a state of unbelief with me . . “Butterfly . . she’s so sweet . . .”. I am so grateful. Thank you to my friends.

For now we wait. Wait on the Lord, and His plans. Wait on a diagnosis. Wait on a treatment plan. Wait and see what will happen.  Wait with the knowledge that the Lord knows our future, and it is not to harm us, but to give us a hope and a future.