Friday, February 25, 2011

A Precious Gift...

A few weeks ago my daughter was the recipient of a precious gift from a kind and generous woman at our church.

Audrey's birthday was the same weekend as the Super Bowl. We went to church to watch the game and hang out. At some point during the day one of the women at church asked Audrey if she got something she really wanted for her birthday. Audrey smiled sadly and told her, "No, Mommy says it's way too expensive and I didn't get it." A little while latter the woman came back up to me and made the most generous offer....

So a few nights latter I told Audrey I had a SUPER SPECIAL surprise for her and she had to hide her eyes for it...

You see, my daughter has been REALLY wanting an American Girl Doll for sooooo long, but dang those dolls are EXPENSIVE! I really tried at Christmas to make it work, but it just would not come together. Audrey has been very understanding, yet she still yearned for the doll.

This special woman from church had had a treasured American Girl doll growing up. She told me that the doll went EVERYWHERE with her and that she was very special to her. This woman had many special memories of her American Girl doll but as she grew older she had packed up her doll and all of her doll things and put them in storage until she had a daughter to pass it on to. After she heard about Audrey's deep desire for an American Girl Doll and knowing our family situation, this woman so kindly GAVE AUDREY HER DOLL! I was completely speechless .....

And as you can see from Audrey's face when I gave her the doll, she was so surprised and happy.

I still get tears in my eyes every time I think of it, and even as I sit here and write the story. This is a woman I know a little from church and small group, not someone I have a deep relationship with, and yet she kindly and generously gave something so close to her heart to delight my daughter. What a precious gift! It might be just a doll to many, but to me it is so much more...

After Audrey got over her initial surprise and joy I let her hold Addy and explained to her how Addy came to join our family. Audrey, although just 8, was very impressed with the story and very insightful. She said to me "This is better than a new American Girl Doll because she is already loved and I get to show her I can love her MORE! She is special just for me!" I was so happy that she got how special this gift is.

Nathaniel, the lover of all babies, was there too when Addy got introduced to our family, and he was pretty darned excited too. Since then Addy has gone many placed with us, has slept with Audrey every night and has a special place in our family.

This special doll was a very precious gift from a dear woman and my family is so blessed!
Can't you see the joy in that young lady's face???

Thank you Lord for the kindness of this dear woman and this precious gift to our family!

This gift is so much more than an expensive doll. It is about the heart of kindness, the joy of sharing and the extreme love of those God places around us. American Girl Dolls are always special, but Addy is so much more special because she has a "history" and is truely a gift.

*on a side note... you are supposed to be noticing the pure joy of the people NOT the disastrous kitchen in the back ground of the pictures!! :)

Thursday, February 17, 2011

Bear Hug Time!

Not long ago (ok... two weeks ago, but who's counting!) Nathaniel got a Bear Hug award at school!

I feel so blessed that even as a fifth grader, my son STILL does a happy dance when he gets a Bear Hug award!

Nathaniel is ALWAYS proud to earn an award, but I was VERY PROUD of him for this award. You see, it was awarded to him for:

*Making new friends
* Becoming more independent
*Being a self starter

This are HUGE changes for the good in my son since all of the medicine changes he has gone through. (if you missed that you can read about it HERE). I am so happy to see the great changes in him, but also to see other people seeing the changes!

The group of Bear Hug winners from that day!

And my, becoming more independent, big boy!
(Who is in desperate need of a hair cut....)


Right now it is all about finding the blue skies in the midst of the storms, or finding the silver lining in the clouds, or however you want to say, finding the blessing in the hard! Right this minute I want to set aside the journey, the struggle, the heartbreaking and share the sweet moments...

Yesterday I was TIRED. (You know, having a sick munchkin can throw me for a loop sleep wise) So mid morning or so Nathaniel says to me "Mom you forgot to call me in sick today." Oh man, he was so right! So I quickly called the school and this is the conversation that followed:

Me: This is Gretchen, I am so sorry I forgot to call Nathaniel in earlier. He will be out today, and probably the rest of the week.

School Secretary: I know.

Me: You know? How?

School Secretary: The note on my desk right here that says "Nathaniel out today. At hospital. Sick."

Me: Ok..... so WHO called my kid in sick for me? (remember I am a single mom, it's not like my other half did it for me, right?)

School Secretary: Not sure hold on.

In the background: Hey, who called Nathaniel in sick today? Mom says it wasn't her....

Other Secretary: Audrey came in this morning and told me. She said that her brother was in the hospital last night so he couldn't come to school today and that her mom was so tired she was going to forget to call him in sick and she said that she did not want us to be confused, so she would take care of everything. That Audrey is a big helper.

And there you have it. I don't even have to do my job because my youngest can do it for me!

When we were at the hospital Tuesday I looked around and felt so blessed. I mean, yes my son was very sick, but really we were so much better off than many around us. We had clean, warm clothes. My son was not there alone (another small child WAS sitting on a bed alone for hours :( ). We had a warm home to go home to. We are blessed in so many ways. Then Nathaniel brought it all home in a way that just SLAMMED into my heart. He really is SO insightful!

There was an older couple in the curtain next to us. The woman was obviously way out of it and very needy. The man was sweet and attentive to his wife, in a really heart touching way. I had never met these people before, but there is not much privacy in our ER so we cold hear everything they did and said. The woman was pretty whiny and at the same time belligerent. They were there due to some issue with her eyes and she was MAD about it.

At one point the doctor came in to talk to them and the wife was WAY RUDE to the doctor while the husband was very contrite and apologetic saying he just wanted to figure out what was wrong with this wife so he could help her. The particular doctor dealing with them didn't have much empathy or any bedside manners. He said to the man "She is DRUNK, you could help her by not letting her get drunk!" And walked out of the "room".

The man was real quiet for a while, then said to his wife "Really? Are you drunk? Did you have something to drink today?" He sounded in shock, which was really difficult for me, because I could  SMELL that she had been drinking when I had walked past her in the waiting room. But the husband seemed  very real in his shock, he even cried asking his wife why she would do that and stuff. It was very sad.

This whole time Nathaniel was playing his DS and I didn't think he knew what was going on, nor did I think he understood what was happening in there. I was sort of hoping and praying he just glossed it all.

A bit latter the doctor came back, telling the husband that his wife had pink eye, but that the bigger problem was that she was very intoxicated. She was 4 times over the legal limit to drive here in CA. The husband was very broken by this (or so he seemed) and they finished up and got ready to leave. The husband still caring for his wife and helping her, but not really talking to her.

As they walked past our room Nathaniel looked up at the man and said this:

Nathaniel: Hey! Mr?

The man looked at Nathaniel at this point.

Nathaniel: Mr. you are so nice to her. That is good. You take good care of her, but it is time to let God take care of her now. He is ready to.

Then Nathaniel went right back to playing his game. It was like he had never stopped in his world, but the rest of us were just staring at my with our jaws on the floor! Even the not nice Dr was shocked. The husband cried a little more, said thanks to Nat and went on his way. The Dr stood and stared at Nathaniel a bit longer, shook his head and went on his way. And I was left there looking at my son trying to figure it all out.

What a weird moment, but at  the same time what a powerful moment! I mean come on, my son is 10! And when I asked Nathaniel about it (once my shock passed) all he would say was "It just needed said Mom."


See how blessed I am?

And my final story for now....

Yesterday afternoon was the local food giveaway that I usually attend for my family. It is such a blessing to us, I LOVE these people, their hearts and the fact that they let their lives be used by God to bless families like ours. At the same time, attending means waiting in line for and hour or two usually.

Now I KNOW that I am blessed, that there are people FAR worse off than me, and standing in line for two hours is not a big deal, but yesterday? Yesterday it WAS a big deal for me. I was tired. I didn't WANT to stand out there. I didn't think it was good for Nathaniel to stand out there with me in the weather. But at the same time I knew we needed the food.

Enter an angle.

A dear sweet angle.

She knew that I was going to  go stand in line because that was what my family needed, but that I really needed rest and to keep my sick boy warm. So she called in a favor with a friend of hers who volunteers at the giveaway. Not only did she arrange for our food to be pre set, but then she even ran over picked it up for us and delivered it to me. How sweet. What a blessing!

So instead of standing in line trying to keep my chin up I was able to curl up on the couch with my children and let them watch Netflix while I rested my body and mind.

See how blessed I am? It is the little things like this that remind me HOW involved God is in EVERY little detail, and how He will work it all out.

The angel with groceries.

The words of wisdom from my two young children.

The two special friends at small group that GET the road I walk with my husband.

The LAUGHTER God brings into my life.

The HUGS that are like God putting his arms around me filling my tank and getting my through another hour.

 It really is all the little things that make me know He cares at such a PERSONAL level!

So on this day, I CHOOSE to see the JOY, be filled with the PEACE and FIND the blessings in it all!

2.16 Nathaniel Update

Many people have asked how Nathaniel is doing today, and I know many of you are praying for him, so I feel that I SHOULD give an update. But I have to warn you, my heart is heavy tonight. Heavy in ways that will be hard for me to explain and even harder for many to understand. So, I ask you, please read with grace!

Today Nathaniel got to spend at HOME!
That is an awesome answer to prayer... no hospital stays today!

Today Nathaniel has battled:
Triple Staph infection
Ear infection
Swollen joints and body
And just plain feeling YUCKY!

Today Nathaniel has been one SICK little boy waiting for doctors to decide how to treat him.

As I sit here reflecting on all that happened today, all that has been happening this week, and the roads we have traveled I am amazed and humbled.

My kid is SICK. He is quiet literally fighting for his life. His little body is invaded with infection and the whole thing seems to be attacking itself. The doctor yesterday said "It is like there are sick parts and there are healthy parts, but the sick parts are SO SICK that it is making his body think it has to fix EVERYTHING so his immune system is attacking everything, good, bad and neutral. And it is exhausting it's self in the process." And the kicker is, that we (as a medical decision making team) are concerned about introducing anything else at this moment and making things WORSE, so we are waiting for lab results in hopes for an answer of WHAT to give his body to help it fight better. And yet, through it all Nathaniel is filled with JOY, LOVE and GRACE. Yes, he has his moments of fear, moments of angry and moments of grumpy, but for the most part he is a happy little guy traveling on a VERY HARD road. What an AMAZING guy he is!

Looking at that little guy I am HUMBLED. Humbled that the Lord chose ME as his mom! Humbled by the lessons he teaches me everyday! Humbled that in the midst of the storm I get to experience the BLESSING of knowing God's love and provision for my family.

I admit, it is HARD. I don't try to focus on the hard, I even try to just do the walk, but on days like today I can honestly say this road He has us on is HARD! Not that I would trade it, for I know it is God's will that we are here, but I can acknowledge the toughness of it.

This week has been rough emotionally too on me. In addition to the journey that my family is on, 2 of my dear friends who are also special needs moms lost their kids this week. One was a child who has been on a TOUGH road for a few weeks, and her little body just couldn't take it anymore and she went home to Jesus. The other child was a special needs kid, but the death was completely out of the blue, blindsided this whole family. My heart is heavy for those families, and yet I look right here at what is going on and I have so many questions for God.

I LOVE my son with my whole heart, but each of my friends loved their children too.

 I don't WANT God's will to be to take Nathaniel home anytime soon, but neither did either of my friends.

I WANT my son healed COMPLETELY from all of this infection.

I WANT him to grow old and have a long life.

But at the same time I FIRMLY believe in God's will here on earth as it is in heaven, and I have to fall on my face at the foot of His cross with my desires and pray for HIS WILL and my acceptance of His will... and that is HARD! Oh so hard....

So I walk the road we are on, praying with out cessation, praising the Lord in all things, big and small, and finding the place that I can be in peace and grace for all things, no matter what. And I am NOT saying I have perfected it, but I am doing it to the best of my ability. I can truly say that I am NOT living in fear, which is a HUGE step for me. But I am not sure I am completely accepting His will either, and that I need to work on!

Many have asked how they can help us.... and to be honest I STINK at asking for help!
I am a helper and it is always tough for the helpers to ask for help... That being said I have taken it to heart and these are the things I have come up with:

We have been blessed beyond words with TONS of food, but I am too tired to cook it! If you like to cook, you could come cook something for us with all of this food overflowing my fridge and freezer!

My long hair and my shower drain are arguing... I know HOW to fix it, I just don't have the energy to fix it. And to be honest a HOT shower is my BEST quick treat for myself in the midst of all of this stress, but a shower that bathes my feet at the same time is not exactly relaxing to me. So if you know HOW to fix this and want to give it a go....

Someone to help with some of the house work that is falling behind would bless me. Dirty floors and piles of filing are two of the big things that are bugging me right now. And, yes I admit it, I like an ORGANIZED environment, it helps my brain work better, so these are silly things in the scope of life, but they bog down my brain!

I have TONS of stuff ready to upload on the new business site and lots of "stuff" to do for that, but also TONS of orders to get out too(thank you Lord for providing for us!), if you like to or are good at playing on the computer and want to come help me with some of that.... I would be right here working away on orders and could help talk you through it .....

Things have been tough around here. I have missed almost 2 weeks of work taking care of Nathaniel, and child support has been none existent for almost 3 months. If you feel called to help us with our medical expenses or day to day expenses we have a Pay Pal Donate button on the left sidebar... We are NOT begging for this, but if it is how you feel called to help I WILL make sure it is put to good use.

And I could always use a cup of Chai and some conversation :)

But mostly.... we just want your prayers!
It means the world to me to know that our family is being lifted up and covered, and through that act alone I KNOW that God will meet all the other needs!

Thank you for checking in with us.
Thank you for praying with us!
And thank you for loving us!

Wednesday, February 16, 2011


Just a little public announcement....

I am truly sorry to those of you who comment here as "anonymous" and are REAL with your comments but....

I have been getting way TOO MUCH Spam so I have had to knock the security setting up a bit to Registered Users.

I REALLY LOVE and VALUE all real comments, but when links to porn sites start getting posted as comments I draw my line! (Especially as a woman married to a sexual addict.... just way too much for me to handle!)

Please feel free to continue to leave me comment love, and I hope that Open ID works for the few of you that use anonymous and are real, because I treasure you!

Thanks for understanding!

Monday, February 14, 2011

Nat Update

It has been brought to my attention that I have not given a Nat update on the recent infection in a while.

It is not that I haven't WANTED to share, it's just that I haven't had information to share... or time to be honest!

I did speak to Nathaniel's primary doctor today and it is confirmed that he does indeed have a Staphylococcus infection (commonly called Staph Infection). Exactly what we figured based on his history of Staph at that site. The BIG BUMMER is that he has THREE strands of Staphylococcus attacking his body right now! Oh man.. not fun!

The current treatment plan is to remain on the oral antibiotic he is currently on at the very high levels. The primary strand of Staph is treatable with that medication, as is the third strand. The other reason we are choosing to stay on this is that he is responding to the infection well. His foot is once again cold (I know it sounds weird, but if you are a SB parent you know what I mean... their feet are cold!), the redness is greatly reduced and the swelling is down. I am still draining the infection site twice a day, and am bummed to say that we are still draining puss, but praying that will change SOON! And best news yet is that the pain and discomfort is greatly down. Nat is being pretty good about staying in his wheelchair (it has GOT to be hard to stay in the chair when he can't FEEL most of what is going on in his feet!) and off of the foot to give it time to heal.

The bad news is that the antibiotic seems to be wreaking havoc with the rest of his body. His bladder is showing signs of infection (which is CRAZY when you see how much antibiotic he is on!), he can not sleep for more than about an hour at a time (which in turns means this single momma is not sleeping!), his attitude stinks (probably greatly influenced by the lack of sleep) and his appetite is way off. I am glad to see his body fighting to heal, but he has NOT been a joy to be around the last few days. I know some of it is the meds, and I know another large part of it is his fear, so I am trying to be patient and filled with grace.... but dang it I am TIRED and concerned for his health too!

So anyways... that is today's update and with that I would love to ask for some prayer:

That ALL THREE Staph infections be HEALED COMPLETELY!

That we find a way to get some rest (I am even considering hiring a sitter over night so I can sleep through the night!)

That we all lay our fear at the foot of the cross and stop carrying it with us daily!

That Nat's bladder and kidneys hold their own and stay healthy through this!

For good attitudes and a home filled with grace.

And for all of the health care professionals working with us. For wisdom and discernment. For grace, patience and understanding. And for them to be healthy and fulfilled so we get their best efforts! (selfish I know, but happy healthy doctors make better choices!)

Thank you for checking in with us and joining us in prayer!

Hope to resume regularly schedule (non medical crudish) blogging soon!

A commentary on Valentine's Day!


I confess.

I may be a bit annoyed by this day, but not for the reasons you might think.
(or maybe for the reasons you do think, how am I to know?)

Here is my question....

If you are married, in love, in a relationship or have a significant other isn't part of what you signed on for DAILY showing that person that they are important, that you care and that you are willing to work to keep that relationship strong?

So then WHY do we need a day set aside for that every year???

I mean, if you are lovey dovey on February 14th of every year does that mean you get to take the other 364 days a year off?? If this is the mentality then the sad divorce statistics that plague our country are no surprise...

And if you are doing your part in your relationship on the other 364 days a year WHY should society pressure you to go over the top on February 14th??

Love, relationships and marriages are an EVERY DAY job, something you must work to keep fresh and alive every single day. I feel like Valentine's Day just thumbs it's nose at that commitment that SOME people make and do!

On the other hand, if you are one of those LONGING for a relationship, longing for earthly love, longing to feel treasured, then Valentine's Day is thumbing it's nose at you too! Because for this one day of the year, every where you look it's about love, and it is INSANE!

Seriously, the only "good" that I see coming form this day is money spent, and I am not sure that is good for everyone. Sure people make money off of it and some use that money in great ways, but some is just big business getting bigger..... It frustrates me to no end.

So on this day of frustration to me. On this day where I ACUTELY feel the loss of the dream of feeling treasured by my husband I ENCOURAGE all of you in relationship to make sure you let those you love KNOW they are loved and FEEL loved! And if you need practical help or encouragement in this are I HIGHLY recommend The Five Love Languages by Gary Chapman. That book has forever altered (in a great way) how I look at ALL relationships.

And in my own grumbly way, I will wish those of you blessed enough to be in a relationship, Happy Valentine's Day!

And to those of you, like me, sitting around grumbling and feeling lonely tonight, I remind you life will be back to normal tomorrow and we don't have to endure this nonsense for another 364 days!!!

Saturday, February 12, 2011

You Interviewed!

My sweet friend Krystina did this on her blog and it is way too cute, so I am going to have to join her.... won't you join us too? I would love to learn more about each of you!

This is the post in which I interview each of you. Yay!!

I'll answer these questions too so it's fair :)

1. what is your favorite treat? (any type)
          Key Lime Pie.... oh yum! And also ANYTHING that someone else cooks for me!

2. what makes you happy?
         The opportunity to "talk" to friends who live far away and I miss.... Watching the sun set..... Listen to my children giggle...A hug, always a hug!

3. what would a special day be for you?
          As much as I LOVE my children, as a single mom with 100% custody, a special day for me would be one where I was kidless and KNEW that their needs were being met so I could just do grown up stuff.

4. what is your favorite color?
          Brown and Turquoise

5. what book are you reading right now? why?
          The Bible (always read that daily!), In The Eye of the Storm by Max Lucado (because I need to figure out how to live in the Eye with more grace than I currently do!), and Shades of Blue by Karen Kingsbury (because I need a relaxing book too!) Can you tell I LOVE to read??

6. what pushes your buttons?
         Whiny, bickering children. Judgemental people. Narrow mindedness. People who can't live in grace and love.

7. what makes you melt?
           In a good way: Hugs. Thoughtful gestures. Snuggles and giggles with my babies. Dear friends.
           In a bad way: Having my buttons pushed too hard. Medical crud on tired days. Watching my children suffer.

 8. what do you want people to say about you?
          That I am kind. That I care. That I live a life reflective of Jesus. That my heart is bigger than my humanness.

You can answer in comments or you can blog your answers and add your blog link to comments.

Ok your turn.


Friday, February 11, 2011

A Tea Party fit for Princesses!

I know, I know... It is about time I posted for Audrey's Birthday (It was last Sunday!) but darn it, it has been a BUSY week. And while it HAS been a busy week, I think the biggest problem is that I take TOO MANY pictures (even when my camera dies half way through the party!) and that takes time to edit for posting. Ok, now I am done with the excuses....

Remember you can click on any picture to see it bigger if you would like!
 On Sunday my baby turned 8!
HOW has that much time flown by so fast????
(and the other bad thing about my baby growing up? I want another one... funny hu?)

The Gown~
Audrey picked the theme of Princess Tea Party a few weeks ago. One day when she was sketching she drew the "perfect princess dress" and showed it to me(picture 1). She said "Mommy, THIS is the dress I want to wear for my Princess Tea Party!" So I tucked the sketch aside and hoped I would find time to make it for her. The night before the party I remembered it, and was feeling creative.... so when she woke up Saturday morning she found the dress form on the table (picture 2). She was THRILLED and it was fun to watch her parade around in her Perfect Princess Dress all day! Hey, and I thought I did well.... I finished the dress a WHOLE 15 hours before the party! For me,  that is good! You know the whole the shoe makers kids go barefoot thing... yup! 

The Setting~
Setting up and decorating to the theme that my children pick is one of my favorite things about birthday parties for the kids! (All the screaming, giggles, spills and shouts... not so much!) So we had fun transforming our house into a tea room for the party! And I was very please with the out come, both how it looked and the fact that I did it for less that $25.00!!! I guess being a pack rat has it's benefits....

The Girls~

When the other princesses first got there they had to get all dolled up by decorating crowns and getting tattoos! Sweet fun watching them get all prettied up!

Tea Time~ 
Okay... what totally amazed me about this party was HOW MUCH tea those people drank! Seriously! Those girls DOWNED the tea :)

The Presents~ 
I loved watching the expressions on her face as she opened gifts. So sweet! The other thing that really blessed me was that she was working VERY HARD to read most of her own cards! It is so good to see her gaining confidence in her reading!

The Game~ 
There was a sweet game of pin the tiara on the princess to be played! I thought it was so funny that the first one to go got it PERFECT but no one else did. Innocent minds still!

The Cake~ 
Or CUP Cakes as the case was. So cute. So sweet to hear the singing and see her think so hard about her wish. So yummy to EAT! I think homemade cupcakes are so yummy, I don't know why anyone would buy them, they are just almost never as yummy!

Princess Pool~ 
After the final round of food, it was time for Josie to contribute to the girls' education.... teaching the proper way to play pool!

Just in case you thought there were way to many girls at this party (WAY too many giggling princesses!) This little Prince supervised everything and kept them all in line!

Overall, a very fun and blessed day.

I love my little Princess Audrey and hope that this is a party that will bring fond memories for her for years to come!!

Wednesday, February 9, 2011

What I Love Wednesday!


I am going to link up with my darling friend Krystina for What I Love Wednesday today! I have been wanting to do this for a while, but life keeps getting in the way! Life will try today (and has tried if you read the earlier post from today!) but I am going to get this :)

What I Love this week.....

1. Wonderful, dear friends who mean the world to me!

2. This DARLING necklace with the BEST message on it found in a dear friends store HERE

3. The color Turquoise is IT these days to me... Love it!

4. My Family unit. Love those kids, miss seeing those girls as much!

5. The BREATH TAKING area I live in. Could a girl be more blessed when she walks down her street???

6. This super cute new headband I created today.... to be found HERE as soon as I get home from Bible study and list it :)

And my final What I Love thing is not a picture, but is heavy on my heart today....

I LOVE medical technology and the advances it is making EVERYDAY!
Thank you Lord that I live in a place we can get the care we need!

Infections AGAIN! Ugh....

It has been an interesting few days.

Saturday Nathaniel got mad at me and ran out of his room into the living room..... without his braces on.... on the hard wood floors of our house. Not good....

Sunday his foot was swollen and sore, but not enough to take him to the ER (they just don't GET HIM there).

Monday his foot was swollen AND hot (due to his SB his feet are usually VERY cold, hot feet is a clear sign of infection with him) AND bright red. Time to see his doctor.

Doctor looked at him and said, "yes, deep tissue infection again." AGAIN! SO tired of these infections with him. Started a new round of broad spectrum antibiotics and jumped back in the wheelchair to take all pressure off of the foot.

Tuesday he went on an all day (12 hour!) field trip with his class. I kept getting texts that he was tired but good.

This morning I was doing his usual foot care before putting his braces on him and the bottom of his foot literally exploded in my hands! GROSS!!!!!!

So we....

Had wound explosion!

Did wound care (gross!)

Drove south to meet his orthopedic surgeon.

Had a consult that I was not thrilled with (Looked at wound, cleaned wound, ordered 2 weeks of broad spectrum oral antibiotics, then labs and x ray and recheck, but this always moves SO FAST with Nat that two weeks scares me!).

Headed back north.

Got a call from Nat's primary Doctor (I had left a message with  the answering service earlier) who wanted to see him ASAP so we swung by there.

Dr B looked at the wound again (he just saw it 2 days ago) and swabbed the wound for culture. Then we discussed options. The decision (at this point and always subject to change!) is to take Nat home, continue to clean, debreed and medicate wound, continue on broad spectrum antibiotic until Friday when the cultures from this morning should be back and we can see just what we are dealing with.

Took cultures to lab.

Had blood work drawn.

Took kid to school (the infection is INSIDE his body, he is not contagious so I might as well make life as normal as possible for him right?).

Hit my knees in prayer.

I am SO THANKFUL he is home, not in the hospital.
And I am thankful I have doctors that I love and trust working with me.
I am thankful for all of those people that I hit with text messages this morning that I know hit their knees praying with us.
I am thankful that I could put off my work and care for my son.

I am praying for....
Grace and patience for me!
That is is NOT 3 strands of Staph like last time, or anything worse than that!
That Nat continues to have a good attitude and be the rock star he was this morning!
Understanding, knowledge and discernment for our doctors.
Provision and grace through it all.
And did I mention.... COMPLETE HEALING!

So that was my morning (it is not even noon yet...)
..... what did you do today?

Time to get a few orders done before it is time to pick the kids up from school!

*on proof reading this I noticed 2 things.
First I forgot to share the cutest story from this morning.
Second, for those of you who don't know me, you might read this and think I did not pray till the end. Not true. If you will notice I said HIT MY KNEES in prayer.... all the rest of the time I was praying on the go (while cleaning the wound, and driving the car, and sitting in waiting rooms and everything else). I was in a state of prayer ALL MORNING!

So onto the cutest story! I was driving south and Nat was in a great deal of discomfort. He was complaining loudly when I noticed that the music in the car was off. Not normal for my car. Thinking music my distract Nat from complaining  I filpped KLOVE on. Before I could even register in my mind what song was on Nat was yelling at me to turn up the radio. He started singing his heart out to "How Great is Our God" and when the song ended he said to me so sweetly "Isn't it cool that our God is so great that He gives us great songs to sing when we feel yucky?" Tears....

Ok, now I am done :)
Have a BLESSED day!

Tuesday, February 8, 2011

Contest Time!!!

It is contest time around here!!

For no other reason than I NEED your help! :)
And because I love anyone who takes the time to read what I write!

With the chaos that has been going on around here (which I have been far too tired to blog about recently so most of you don't even know what I am talking about!) my creative juices have all but dried up. But I need creativity, so I am hoping that you all can help me out!

One of the many things I am working on is setting up a new company/business that will encompass many parts of my life all into one area. The things that I want to encompass are:

  • The company/business that will oversee and pay the new personal assistant folks working with Nathaniel.
  • My Etsy site where I sell my handmade creations to help off set the costs of a special needs child.
  • My alteration and custom work that I am doing privately now, which the proceeds of will also go to Nat's care.
I NEED to get my papers filed for a new business license and EIN number so Nat's special helpers can start working! But the problem is that I can NOT seem to come up with a business name that wraps it all up for me!

I am usually pretty good at stuff like this, but I am so tired and beaten down (have I mentioned that Nat has a deep tissue infection AGAIN? Have I mentioned that I am under HUGE stresses in MANY areas of my life? Have I mentioned that my diva is being a DIVA these days? Have I mentioned that I MISS my friends? ... yes... beaten down!) So here is the deal.. I KNOW you guys are creative and smart, so I am BEGGING you, please help me come up with a name for this endeavor!

Please leave a comment with your idea for our new name.
Comment as many times as you like!
Share the contest as you feel lead (and leave a comment for that too :) )
And pray with us that the PERFECT name is revealed!

And for your creativity and help, the person who came up with the winning name will get a $25.00 credit in my Etsy shop :)

Contest will end Friday February 11th!

Let the creativity begin!

Monday, February 7, 2011

Brianna Entertains!

I love this kid!

I really do....

But she was cracking me up today!!

 Brianna works the Monday am and pm shifts helping with Nathaniel. Today she was VERY energetic. Energetic in a way that only Brianna can be. She talked NON STOP all day. On a day when I had a stress headache most of the day. I asked her to settle down. She talked A LOT more. I asked her to quiet down, her talked a LOT just quieter. I asked her to play the quiet game, that lasted less than a minute! She just kept going. My other in home and I were just laughing at her at one point, because no matter what we said she kept talking!

At one point tonight I said to her, "Brianna, since you are so energetic tonight you can do_____ (something, I don't remember what I was assigning her to do)."

Her response was "Aunta, I am not energetic. My mouth is just energetic. I am actually quiet tired!"

Oh man.... I laughed so hard at her!

Doesn't she know talking takes a TON of energy?!

Someday I AM going to teach her that different situations call for LESS talking! :)

Until then.... pray for me!

Nat update..... finally!

*I apologise for the length of this post here and now, but this is a long story that NEEDS to be told. I hope that it will encourage other parents like me out there and be worth the long read!*

 I AM going to do this....
I AM going to get through this Nat update and get it posted....
Sometime soon.

If you are new around here, or blissfully unaware of our life I will give you a touch of back story.

Meet Nathaniel.

My darling 10 1/2 year old son, who happens to have Spina Bifida and some of the fun sideshows that go along with SB (neurogenic bowel and bladder, behavioral issues galore (OCD and ODD being the two biggest ones we deal with daily), processing challenges (especially linear processing), social quirks and rages, lots of rages) to name a few.

Nathaniel is a lover of all sports and will play anything as long as it has a ball, bat or racket in it!

He HATES to read, and loves to listen to anything (stories, books on tape, movies, music... anything!).

He thinks art is for girls, painting is to express anger, and creating is NOT his strong suit.

He can figure out ANY electronic game without reading and will play them for hours on end.

 Friendships are not something he is good at building and he is fine playing alone, unless he needs a body for sports and even then, he will play the sport with you, but conversation is not a part of it to him.

I love my son to pieces. But I do have to admit he has a few quirks!

We have been having increasing problems with Nathaniel, his rages and his quirks.

Some blamed the problems on my unstable marriage. My husband and I have been separated for 15 months, the kids have limited and supervised visits with their father and our home environment is no longer a battle field, yet Nathaniel's rages continued.

Some have blamed the problem on my parenting skills. I open my home and life to outsiders and they come in daily, we are constantly under a microscope.  I have been praised time and time again for my parenting and coping skills and yet the rages continued.

Many have blamed Spina Bifida, but that is a fact of life in our family and it can't be taken away. On the other hand I see so many others deal with SB daily and not have the rages, so I continued to seek answers.

Then there were others that said we had him on the wrong mental health medications, so this seemed like the next area to look at to me. In late November I FINALLY got the authorization to have a Neuro Psych evaluation done on Nathaniel. This was a LONG process, yet we walked in out in hope and prayer that answers would come from it. I was definitely seeking answers on HOW to better the quality of my son's life and our families life.

In the end I was disappointed with the Neuro Psych report because I felt like it was just passing the buck to Spina Bifida and medications used to treat that. The one thing that I saw was some finger pointing to a certain medication that Nathaniel has been on his whole life for bladder management. I was crushed because I have researched this medication before and tried to have him taken off of it before to see if it made a difference, but met brick walls with the urologists. But I had an appointment with the urologists just days after the Neuro Psych report came back, so I hit my knees in prayer over how to best proceed.

At this point in our life the rages that Nathaniel had were completely out of control. He would rage almost daily and HURT me most days. I was always walking around covered in bruises from my son, physically exhausted from dealing with the situation and constantly keeping my children apart to protect my daughter. It was emotional hell, and physical torture for me. I knew that something had to give with the rages, or I was going to have to seek out of home treatment for Nathaniel and I DID NOT want that. So I resolved that I would speak to the urologist and INSIST on a 30 day trial period without the medication.

The day of the urology appointment I prayed all the way there (and since it is over a 4 hour drive I had lots of prayer time :) ) and I went in KNOWING how we were leaving the appointment. After the urodynamics test I presented my case. I took my time, I cited many medical reasons for wanting to try a period off of the medication and I tried my hardest to remain non emotional, just the facts. And I got shut down by the nurses and doctor.

This is the only medication approved for use in children.
He HAS to be on a medication.
They are just telling you this to blame it on SOMETHING, it is not really this.
ALL kids with SB have to take this medication, it is just life.

Those are some of the  things that I heard, and I KNEW that they were just scare tactics! I had done my research and I KNEW that some of those things were just lies. So it was time to play hard ball.

"I understand that you don't WANT to take him off of the medication, but the bottom line is that I am his mother I and I have 100% legal right to make his choices medically speaking. I AM taking him off of this medication for 30 days with or without your support. Now, do you want to discuss how you would like to see this handled or shall I leave now?"

To say that they were TICKED at me would be an understatement, and our appointment ended up going another hour as we discussed all kinds of aspects to this. But I got what I needed. I just NEEDED to know that it was not the medication before I looked into the extreme and heartbreaking options of out of home treatment.

I did NOT tell anyone around us what I was doing. Not that I wanted to be secretive, but I wanted to see what people's reaction was without my input. Within days we started seeing a difference.

The first to notice anything was my mom. She was traveling with us that weekend, and within 48 hours of taking Nat off of the medication she came to me and said "Nathaniel is not stuttering anymore. I have not heard him stutter all day." I had noticed the clearer speech pattern too, but was unsure if I noticed it because I wanted to or because there was a difference. But my mom knew nothing about the meds change and she heard it!!

The next thing I really noticed was his tracking in conversations. He has always been able to articulate well, but seldom would he follow the same conversation as those around him. He would just interject random things where ever he chose to. Within the week I noticed that he was actually following and participating in the conversations around him without us changing the topic to whatever he was talking about! This is one of the first things his pediatrician noticed when I took him in off of the medication! His teachers also really noticed it.

About 3 weeks in I could honestly report that we had gone 3 WEEKS without a rage! This was HUGE! We went from violent physical rages almost daily to 3 weeks without a single incident!

Now 9 weeks in I can see so many changes.

His conversation skills are much more age appropriate. He tracks in the current conversation whether it is a preferred topic or not. His stutter is completely gone unless he is very agitated. And he is INTERESTED in others thoughts.

His attention is so much better. He can participate in self regulate in ways he has NEVER done before. He can REMEMBER simple sequences where he ALWAYS had to have them visually in front of him before. And he is starting to self start on daily routines instead of being completely dependent on his visual routines.

With his improved attention and concentration he is making huge leaps in school things, especially reading!! (He was reading at a 1st semester 1st grade level as an incoming 5th grader!) He is also telling me about things from school from memory without looking at his papers to remember! Overall he seems so much more calm mentally!

The HUGE things that we are seeing in our home are that he is much more empathetic to those around him and the rages are almost completely gone! This is making for a MUCH more calm and peaceful home. We all feel safe and supported now, and we are enjoying each others company like never before! I have NEVER seen my children so kind and caring to each other. Nat has never cared before and Audrey has been scared to go near him for so long. It completely melts my heart to see them now! And the rages.... they are virtually GONE! He is MUCH more age appropriate in his emotional pattern now.

The overall quality of my son's life has increased more than words can express. He is a new child and I am head over heals in love with him all over again! And the kicker??? The psychotropic medications that he was on to help manage his behaviors.... we have taken him off of 2/3s of them since eliminating the bladder medication!! It looks like we were having to use those medications to manage the SIDE EFFECTS of the bladder medication!

I am SO GLAD I stood my ground and insisted on trying this even though it was against medical advise. The issues that have come up around bladder care are a pain the booty, but I will take them any day of the week over the neurological side effects we were dealing with. The quality of life is SO MUCH better, we will NEVER go back to that medication!

I really wanted to share our story, not to scare anyone or to bad mouth any doctors, but to encourage parents.

Parents REALLY DO know their kids best.
Parents really are the only ones that see the WHOLE picture of our children.
We DO need to research what is happening with our kids and advocate for them.
And it won't always be easy, but we can do it!
If things are going in a way you are not ok with don't be afraid to try it a different way.
Don't be afraid to say "I need to SEE that what you are saying really is."

I could sit here and kick myself that I didn't take this battle on years ago, or I can accept what I can not change and learn from it.... and I choose to learn, to grow and the be eternally thankful that I took the chance now, before something worse happened! I am so thankful for the new child I have now. I am so thankful for the peace and joy that now abounds in our home. And I hope and pray that if anyone else is going down the road we were on that they can take hope and courage from our story.

Monday Mumbles

I adore my friend Tooje and her Monday Mumbles, so I am linking up with her. In NO WAY do I think I am as clever or funny as she is, but still I am joining up :)

  • The Lord is SO AWESOME!!!! I was STRESSING about being short on rent, out of TP and out of gas, but He graciously provided my pay check two days early AND a little extra too. Now I can pay my bills AND get TP :)
  • We had a princess tea party this weekend (pictures to come soon) and it was so much fun to watch Audrey host her party!
  • What wasn't quiet as fun was listening to her tell EVERYONE at church that it was her birthday yesterday.... must work on humble with that child!
  • Long hair and old pipes DO NOT get along ..... It is NOT fun taking a shower with my feet in a bath. Anyone want to come snake my shower for me?  :)
  • It is another gorgeous day here, and I have ten million things to do.... Not fair!
  • Nat's foot is swollen and hot AGAIN. I was looking through records and in the past 6 years we have not gone more than 6 months at a time without some sort of infection or problem with that foot. I am tired of that foot! And if I am tired of it, how does Nat feel about it? Lord PLEASE heal him!
  • I am beginning to get concerned that I am too picky about workers for Nathaniel and will never be able to fill my positions, but at the same time I am not willing to lower my standards for people who will be working in my home. Laying this too at the foot of the cross.
  • Building relationships with people here locally has been a big burden on my heart recently because NONE of my close friends live here and that makes it very lonely. During the Super Bowl yesterday I was very blessed to play board games with 3 of the women from my Bible study group. I felt like it was a start of relationship outside of the group setting and that was good for me.
  • On the subject of building relationships I am super excited to start a Secret Sister program at church. I got my "assignment" yesterday and can't wait to get started!
  • My son is in his room getting dress for school while singing the "Bear Necessities" from Jungle Book, while my daughter is in the bathroom singing "Trading My Sorrows"..... those songs do NOT go so well together! Thank goodness the dog has not decided to sing too!
It is time to get ready for my day.... but thanks for listening to my mumbles :)

Tuesday, February 1, 2011

Sweet Valentines Available!

It's time to make some $$ for all of the medical bills hanging over my head!!!

All of the proceeds from my Etsy shop go to Nathaniel's care and expenses not covered by insurance....

For the princess in your life....

To head to my Etsy shop and check it out go HERE

And PLEASE feel free to share the link with anyone you think might be interested :)

And what was the boy doing while I was working with the girls you ask????

Playing with his newest obsession!!

He is ADAMANT that mommy needs to get a new phone... and Android to be specific!

Dream on boy......