Monday, December 20, 2010

In Which My Son Egged My House

Yes, it's true. My house was egged just a little while ago.
I am sitting next to my tree to relax while the perpetrator sits in time out.....I keep hearing "Sorry Mama, sorry Mama."

Caileigh and I were upstairs watching a Christmas movie and folding clothes. Braedon was in there with us but wanted his juice. He came back with eggs instead. Upon reaching the stairs he decided to take them out one by one and throw them at the steps.

Caileigh went to check on him and I hear "Mom!!!!! Come quick!!!!"

PLUNK....PLUNK....

More eggs cracking on the steps. As soon as I heard the sound as I walked down the hall I knew what it was.

So yes, my son should be great at pranking high school classmates because he already has a head start on everyone else. :)

PS-Eggs on white carpet do NOT look good.

Thursday, December 16, 2010

It's Beginning To Look Alot Like Christmas....

Or NOT! :(

We were forcasted to start accumilating snow last night and through the night and day today. Well, we got a few flurries this morning and that quickly our 10 inches turned into a dusting. So disapointing! :( Such a bummer because the temperatures are fridged and gloomy, all of us are ready for a nap and the snow would make a nap so much better! (Don't ask me why, not sure but it just sounds good)

This weather is crazy! A friend of mine is on the east coast and just moved to Va and is experiencing her first real winter as they've been in Georgia. It has snowed the last three or so days and she has no idea how to get around in it! While she is stuck...we are enjoying bipolar weather ranging from 62 one day to 27 the next!!! :)

I am so excited for tomorrow to come! It is C's last day of school and then we are off for two weeks! I am se relieved! We need a break and definitely need some time together as a family to just have fun and relax. Here's hoping we have some snow over break to play outside in! It's always so hard to do so when there's school, schedules packed.

Have a great and safe evening everyone!

Saturday, December 4, 2010

Heaven's Blessings

I have been thinking a lot about what is important to me in life; what I want most out of it and when people ask what I want for Christmas....what do I really want???

It's no secret that any mother that loses a child will forever think of her unborn that she was unable to hold. That is my constant wish. Sometimes I wish God would just give me a glimpse of their face, or what they are doing in their days in Heaven. I pray for it and quite frankly the last few months...I NEED it.

I was talking to my sister about this a few weeks back and she said something that really touched me. While it doesn't make all the sadness go away or the desire to hold them just once disappear, it gives me hope.

She told me that those are the blessings of Heaven. Isn't it great to think that I have children who have never known one instance of fear, pain, saddness or disapointment. They have never gotten in trouble, never sinned and had to face the consequences. They were born into the arms of God, perfect and whole; just how He designed them to be. Someday, I will be able to look upon their faces and see how beautiful God made them and know how they blessed God's design.

That makes me smile and makes the sting of pain less.

So while what I want for Christmas isn't fancy gifts or even those more simple, I atleast have the gift of hope in knowing God has a gift waiting for me when I enter the gates of Heaven. I hope and pray every night that is what God fills my dreams with. Such a wonderful way to dream! :)

Tuesday, November 16, 2010

My "left-over" casserole

Or "I haven't posted in so long...I don't even know where to begin...so I am throwing it all in here and hoping it turns into something great"

Things are crazy...they are always crazy it seems. Soapy is still traveling and I am still teaching dance.

The studio is preparing for the Nutcracker right now. We started about the last time I posted (embarassing) and it is hard to imagine that we are three weeks away (only one more Saturday rehearsal left) before we begin our week of performances. The first week of December is always dedicated to performing for the local schools. Teachers are able to bring their classes to a local high school to watch the performance. We not only perform but help to instruct the audience in some of the steps or terms behind the scene.
The following week begins our formal public performances. We do three days, Friday-Sunday and most likely we will do two on Saturday...one as a charitable performance I believe. It is so much fun but I would be lying if I said I was not completely ready for a break with silence immediately following those first two weeks.
The rehearsals are going so well and the kids have really done a great job this year listening and practicing their parts. It should be a great show and  I can't wait to see it...or from the side of the stage anyways. ;)

I have also been working two new businesses...one more than the other as the second is still in the stages of prep and learning. The first is Partylite. I became a Partylite Consultant October 12th as a way to make some extra money. We are desperately trying to pull ourselves out of debt from the immediate repairs onthe house, Braedon's debt from the beginning of the year and loans we have had for a while. I want them GONE GONE GONE! I want us to be able to breathe deeply, easily and frequently. I want to be able to send my husband on the hunting trip of his choice next season and I want to go spend some much needed time with my sister on the beach. I have been working this business like mad and thankfully it is getting up and running quite quickly. I am setting my goal to be a team leader by December 1st. This is a little intimidating as I need 5 more people to join my team but I have the financial aspect of how much it takes to qualify already taken care of.
The biggest things that drew me to this business was obviously being my own boss, the fact that I didn't have to pay one penny to start and I love candles. Until now I haven't burned much since Braedon was born. Something about his fearless attitude and fire just haven't sounded wise. Now though, Partylite offers so many amazing versatile products. There are some with and without flames. THe ones with flames do not burn hot enough to burn you...they snuff out themselves if spilled over, they don't contain lead and now there is a new line coming out made of 96% soy! The candles are non toxic so the next time Braedon decides to take a chunk out of a candle for snack...there is no need to call poison control!!!

My other business is photography. It really is a passion and a stress relief for me. Right now I do not feel qualified to charge photographer prices so I am practicing on friends and family in order to build a r eputation and a portfolio.All I am asking for is enough to cover the cd for the pictures and gas for travel. Hey, a girl has to start somewhere. :) I am hoping that by spring I will be assisting a friend of mine with her wedding photography (she asked me to join her Dec 4th but....that's Nutcracker...um, no thanks). She is a long time friend and my newest team member with Partylite. We are so excited to jump into this together!!!!

Caileigh is really starting to pick up energy wise. Unfortunately this week she is battling a cold gone sinus infection. I am trying desperately not to catch it and to keep Braedon's at simply a runny nose. We shall see how that goes. Other than health she is doing so well! She is reading chapter books and recently started bringing home 2nd Grade homework! We are so proud of her and how well she is doing in school!

Braedon is as much a handful as ever. He is constantly runnign around and tearing things apart just so you will chase him....he is going to either kill me early or keep me young. I haven't decided. His health stuff has been relatively low key the last few months. We have had some yucky GI issues the last month or so but they never become full blown episodes like they were in the spring. I am praying it stays that way.
We had an appointment for him @Children's Hospital last week but the results from labs at Mayo in MN are still out. Something about questionable results that they would like to test further. Please be in prayer over that; I am trying to not think about why they have not talked to us about it yet and assume the worst...we moms like to do that.

Braedon is talking up a storm now! He has a lot of words that are now recognizable to others outside the family. I am so relieved that he suddenly flipped that switch. We are still working on the potty training. He was so motivated to start and now...he could care less about getting a treat. He can tell us when he is wet or dirty but that's as far as he goes. He will sit sometimes but nothing happens.....

In other news we are going to TX for Thanksgiving! We are leaving early and heading down there for a bit and back before school starts. It will be great to see everyone and especially hold my little niece Elyse and see Soapy's cousins brand new little girl Abby who will be born this week! I should have a nice wide variety of little ones to practice on and no other errands or committments to attend to! Let the clicking begin!!

I believe that has me somewhat caught up. Please continue to pray for Braedon's tests. Please pray that his cold doesn't go into his lungs like it did last year. Please pray for Caileigh that her body fights this off soon; the doctors said after getting out w/Meningitis that her body could take a lot longer to rid itself of infections. Also, please pray for Soapy and me. We are praying over some ideas and decisions we have coming up and things we feel God may be calling us to. Please pray for clear answers and directions as we approach those deadlines.

Monday, October 11, 2010

Our house is going to smell great!

Right now we are in the stages of potty training and sleeping in a "big boy" bed. Both are proving to be challenging and rewarding....more the first than the ladder.

Braedon is on day #3 in his big boy bed for both nap and night time. The last two weeks I have been transitioning him gradually to his toddler bed to try and make this switch as painless as possible for everyone involved. The one lesson I have already learned though, is he can unlatch the childgate in his doorway. I hate the idea of putting one up, sort of like caging him in, but he is not safe to be allowed to run the house. He will do just that, run the house. :) I awoke to him screaming...to find toothpaste all ove the bathroom floor, syrup smeared all over the kitchen and him laying right in a great big puddle of it. I either didn't have the latch on the gate pulled all the way down or he just figured it out himself. Bad morning.

I quickly cleaned everything up, gave him the first of three showers for the day and we went about our day.

Potty training is another challenging moment. He wants to do it so bad and asks to sit in there often. We go occassionally, most successfully right after breakfast but he is getting too independant. He wants to take his own diaper off, he wants to wipe his own bottom.....do you see where I am going with this?? Well, urine wound up being ALL over the bathroom floor and him, and his clothes. Thus began more household cleaning and disinfecting.

Last week I started a new business. I am now a Consultant for Partylite! This works out perfect for our family. Soapy and I both enjoy burning candles 24/7, Caileigh loves how "pretty" they are when flickering and Braedon loves to smell and of course expects everyone within a 20 foot radius to smell too. It also works out that these wonderful scents are helping to keep my house smelling toothpaste-minty fresh, like fresh served maple syrup pancackes and the most favorite...stale urine. (side note: why is it that no matter how hard you scrub a bathroom with disinfecting wash that smell cannot come out of the floor and grout?)

In the next month I am to hold 6 parties. I had my starter show this past Thursday and honestly was very disapointed. I had 8 women coming and 4 outside orders...well, 2 came and I had 1 outside order......I only had 2 orders from the party. The premise of the company is there is no startup costs for your kit and to join the company, all you are asked to do is a $350 starter show to pay for your starter kit. Easy enough...or atleast it normally should be. I am hurting for sales. I am atleast $125 short and really need to finish these orders tomorrow morning. I have been praying all weekend and today that God would send me my final orders needed to provide me with the sales required to start my business. I know that once I can get past this show, I will be great! I have my shows booked (I still need one more but I am sure it will come) and am determined to be successful.

I have to, need to be successful. Not for the fame, or the trips, or the money...well, kind of for the money. I just want to be successful so Soapy can come home. I am tired, the kids are tired, he is tired of working such long weeks away from us so much. It makes it so hard on the kids. To try and find a non traveling job is very difficult right now and the pay is way less than what we can afford to live off of. I need to be working but with Braedon, I cannot put him in daycare just yet. I need a different idea. I need this business to work, to be our answer to our prayers for our finances. When Braedon was sick we put a lot on our credit card in order to make things work. We now have debt there that we have been working so hard to erase. Trying to make this house healthy for the kids has had its costs too. I need to be able to start paying these debts off.

Please, please pray for me that God would send me the final orders needed for my show by tomorrow. I need them to come through. Please pray He would lead me to the right shows and the right people who would like to hold parties and take advantage of the wonderful gifts and sale opportunities Partylite is offering. I do have to say, some of the sales are too good to pass up! Not only are the sale prices great but hte product is unmatchable in my opinion. They are lead free, the burn clean, they are long lasting and don't burn hot enough to burn little hands. They are non-toxic which, for us, you can imagine is a wonderful thing. Braedon has already tested out this claim and it is true; the worst that will happen is his diapers may be a little loose. Not that I feed him candles, I promise there is real food in the house.....2 year olds are just so quick and so quiet sometimes!

So anyways, that is me reaching out for prayer in my "suffering" of today and giving my stress and worries over to God. Now, I am going to head to bed because like it or not, tomorrow morning is going to come early and school will not wait until I feel rested to get up and take Caileigh to school. :) Goodnight!

Growing in our Sufferings

Our small group from church recently started a new book study, Be Hopeful by Warren Wiersbe. We have only gotten through the first two chapters so far but it is speaking to me in so many ways. The whole book is centered around 1 Peter and what his letters were about and why they were written. The hope is that you are able to see how God is using you during your suffering and the hope that He has you there for a purpose.....like I said, speaking to me.

The past two years have been particularly difficult on our family. I am normally one to shrug to the world and say, "It's ok, we'll make it through." or " It's just life right? I'm ok, don't worry." while inside I am crying and screaming, " I am not OK! Someone please see right through my smile and pleasantness and just take over! I am drowning and too proud to ask for help or even prayer."

Because, you know, I am a first born perfectionist....Irish and German stubbornness runs deep and the pride of asking for help admits weakness and then I have to admit to myself that I am truly, in fact, struggling. I HATE HATE HATE that! I am better at denying my struggles and smiling because if I admit to having them, then I panic and get overwhelmed and begin to fall apart. I put the cart before the horse and am doomed to failure before I start.....are you seeing a pattern?? I,......I,.....I....there are too many "I's" in this paragraph.

One thing we talked about yesterday is admitting your sufferings to yourself and to others. It is not healthy nor is it wise to deny them; especially to yourself. Denial does not allow for God's full growth in you. If you deny that you are struggling, you are not admitting that you need help beyond yourself. You are not opening yourself up to allow others to serve you, or to allow God to speak to your soul through your trials and the kindness awarded by others.

I am often at fault for this. I think, "Well, I am doing the single parent thing this week, there is no one else but me. I don't want to call for help from others (you know, the ones that offer help and really mean it) because I don't want to burden them; they are already maxed out in their own lives." And then I do the worst thing possible. Instead of turning from my friends and turning to God...the one I should go to first off, I turn back to myself and try to solve the world's problems on my own.

In the above scenario, I have just pushed God and my friends away. My friends either think I am doing just fine and then are stunned to hear that things have been a wreck; or they are turned off by knowing full well that I am struggling and too proud to ask for help. It's a mess!

Lately I have not done a good job of asking for help and crying out to my God for his help and comfort. I have instead "muddled through" the crisis, asking others to pray but not stopping to pray myself like I should. I blame severe fatigue, being overwhelmed, trying to just make it through the moments. I am ashamed of this and realized yesterday that I have not given God my sufferings.

How do I expect Him to lead me to my final lesson in all of this if I cannot give it completely over to Him to begin with? I feel like I did not learn a single thing from Braedon being in the hospital in May. I mean, I did, and I will never forget what God has done in our lives since that moment...but somehow life gets to be too much about the world and not enough about Him and you begin to forget to give Him the time he deserves. You lose sight of what you learned and swore to never take for granted (I do believe that is why God asks us not to swear....it's always a lie, we never stick to our promise).

I believe that is why God allows us to experience sufferings and trials a few times in different ways; until we get it permanently. I know I "get it", I just don't know what to do with "it" or how to allow it to change my life. I am still not sure how I am supposed to grow out of all this.

I have found myself the last 3 weeks kind of going on a backwards slope in this area. Since we closed on our house, my mom had a stroke, I got a concussion which has been and is still very difficult to heal from, Caileigh was hospitalized with Viral Meningitis, Braedon got a concussion and a puncture wound on his head, Soapy and I got food poisoning, Braedon had what I fear my have been his first real full circle GI episode since June....and now I am starting a new business venture that is not starting up in the most promising way. I am swamped with mental overload. I am overwhelmed with so many emotions and want to just sit and have a really good cry. I told my sister yesterday via facebook that I just don't know how much more my heart can take of this no beach thing. When I was stressed or overwhelmed, that's where I went; the beach. I would sit and think and pray, cry, go for a walk...it always cleared my head. I need to clear my head for a bit, gain some perspective and listen for God's direction.

I feel like there is too much noise, too much chaos here in town to hear anything. I am trying to grow through my sufferings but I feel more or less like I am passing from one to another without learning anything from the previous. Tonight I am praying for some help, some guidance, some silence so I can hear God speak and grow through my sufferings.

Monday, September 27, 2010

Today was better

Today was a much better day. Caileigh struggled with a fever and nausia all night, poor thing. I let her sleep next to me so I could hear her happenings. Her fever finally broke around 5am and she slept until 1030! I think her body really needed that.

She was pretty low key until her brother woke up this afternoon and it was like she hit a whole new high! She was so hard to keep toned down and on the couch or in bed. I kept trying to remind and coax her into calming down but she has missed her brother so much and he so wanted her to play with him.

We had dinner and....you guessed it, the tummy aches came back and a slight fever too. I bathed her to cool her body down and put her to bed; which she was more than obliged to listen. Here's hoping that the bath did the trick and she sleeps peacefully through the night. I hope we are on the mend and it's only up from here. :)

In other news, I put her to bed and tried to give Braedon some quality snuggle time. He loves to rock and have me sing to him before he lays down. On the way to his room I thought he grabbed his milk cup on the table as he walked through. It was a waxed birthday candle instead. He had taken a huge chunk out of it....so to the poison control number I went and laughed about his attempt to give me a nervous breakdown. She assured me it is ok, not to worry and to just give him extra water.

There is never a dull moment in out house! So glad she is getting better, thank you everyone for your prayers. I know the extra thoughts going up has helped her to heal!

Sunday, September 26, 2010

Catch up and apologies

Wow, I cannot believe it has been over a month since I have posted....I am sorry. So much has been going on that I have not even had the energy.

Quick recap: in the last month my Mom has had 2 possible TIA's, we are waiting for MRI results. We bought a house on the 18th of August and have been working night and day to tear out the old carpeting (32 years old) and replace it with wood floors ourselves in order to try and make it as clean for Braedon as possible.

Two weeks ago I gave myself a serious concussion while trying to build a fence on our property. I am scheduled for an MRI this week since my dizziness and nausea has not gone away yet.  My mom went from being the one cared for to caring for me since Soapy is gone. I have not felt comfortable driving until recently and even now I don't go very far.

A week ago, Braedon had a pretty good outbreak with his digestive stuff. It's the first real bad one since June. We meet with his allergist this Wednesday and we are hoping to hear about test results soon from the genetics lab at Children's.

This past Wednesday Caileigh came home complaining of a headache. That night at Awanas she burst into tears and grabbed her head with sudden pain. We went home where she soon after began vomiting and running a high fever. Twelve hours later she was complaining of a stiff neck so we headed to the doctors. They tested her visually and decided to send her home and treat for a sinus infection. Thursday night we were back at the hospital doing a spinal tap and taking blood tests. Her tests showed Meningitis! We have been at the hospital doing IV fluids and antibiotics ever since...up until last night. Saturday night the vein collapsed and we had to restart her IV. Normally this wouldn't be anything big except her veins are extremely hard to find. We worked on it from 6:30 pm until midnight with no luck. They called in the ICU nurses, NICU, flight for life EMTs and anesthesia to try. NO ONE could get it in. They decided to stop as it was not working and she was in hysterics by then. The decided to wait until this morning to make a decision.

So far there are no growths in her cultures which is GREAT! That means she most likely has a viral form of meningitis. She could have caught any virus and her body mutated it thus giving her meningitis. It is NOT the meningitis that is contagious but the virus that is. It could simply leave someone feeling yucky, tired may be a slight fever but would be gone a few days later. She was not so lucky and her doctor said he only sees maybe one or two cases a year of meningitis. He was so excellent. He was on call the night she came in and he met us at the hospital to see her for himself. He has been on call all weekend and has come to check on her several times.

After talking with him this morning and observing Caileigh, he decided to send us home....with strict rules. She is NOT to leave the house. We are NOT to let anyone new in to the house until after the cultures are finished. While he is fairly certain it is just viral, as the cultures so far are clean; it is not unheard of to see something pop up the last day of observation. We don't want to infect anyone else. Since they tried the IV again this morning and still cannot get it, the next option would be to sedate her completely. That is very invasive since so far there is no bacteria to require the antibiotics. He has decided to leave them off until something is found otherwise. Since there is nothing hooked up to her, they sent her home as they are not doing anything for her right now but watching her. We can do that from home. If anything gets worse we are to come straight back.

Right after we got home she got extremely nauseous which scared me and she was very weak but she never vomited. I have her in bed sleeping. I am praying that all it was, was over stimulation from getting out to the car and driving home and the adrenaline of excitement of being home. She has really missed her brother and he has missed her too.

I am going to go take a quick nap before either of them wakes but will post some really cute pictures of them tonight once they are back in bed and asleep. Thank you EVERYONE for your prayers and well wishes. There are so many of you that I don't even know but I am grateful for all the prayers. I told her today, "Caileigh there are so many people sending up prayers for you that I think God decided to make you well enough to go home so He can think straight!" She laughed and thought that was pretty cool, she also is in awe of how many people from all over the world are now prayer for her.

To our family and close friends, thank you for stepping up and helping with Braedon, coming to the hospital when I needed help and strength. Thank you for your prayers for Caileigh and for me.

To all of you who just happened to read about our struggles this week, thank you for caring enough to follow along and pray for her. It's so hard sometimes to be here caring for these two babies of mine when Soapy is gone. I am so lucky to have friends and parents close and a God who is AMAZING!

PRAYER REQUESTS:
1. that the cultures would remain clear and we don't have to return for more iv's
2. that Caileigh continues to mend and the rest of us don't end up sick with the virus she had
3. that Braedon stays healthy this week because Mama is T.I.R.E.D!
4.continued prayers for Braedon and that the doctors at Children's Hospital in Denver can stumble upon what God wants them to see. That He is able to provide them with the wisdom to a diagnosis and a cure for him.

Thanks so much and have a blessed weekend!

Monday, August 16, 2010

Why Can't They Just Stay Little

I am still sitting here awake. I just have way too much on my mind and I am honestly dreading going to lay down. So in the mean time I have been reading blogs and watching videos posted to FB and catching up on my friends' lives.

I have a friend who just posted her son's first video at 2 weeks old! He is precious and I want to hold him and smell his baby sweetness. He is precious.

Another friend just posted on facebook that she is FINALLY in the hospital and 7cm! I am so excited for them as they prepare to welcome into this world their third child and second daughter. I can't wait to go meet her and find out what her name will be. ;)

I also found a sister mom who lost a child recently to still birth. It breaks my heart that any parent should have to lose their child. I have been having such a hard hard time with this lately. I miss my four children so bad. I have been overwhelmed with emotions this past week of missing them so badly it gives me pains in my chest and makes my body ache for the children I can no longer hold, laugh with, play with, learn with....it just sucks. I desperately want to have more children but I don't see how I will ever get to be pregnant again. That hurts and I pray every day and spend time in God's word trying to find peace and acceptance and happiness for the ability to move on to the next step in life and close the door on infant childhood in our house.

It is SO SO hard. I don't want it to be over. I want to wake up several times a night. Have spit up and streaming diapers flying out at me. I want to snuggle the innocent sweetness of a newborn child that only God has entrusted to me.

I wish in the same token that my two children now would slow down just a bit. Braedon moves at such speed 24/7! He never slows down. I miss the time when he would snuggle up because he wasn't feeling good at all (though I don't miss the reason behind the snuggles) or when he was so tiny that I was all he needed.

I miss my Caileigh monkey thinking I was just amazing and wanting to play and spend time with me without the arguing. We are at the stage of testing our limits, discovering what she can decide to do and what she is required to do as a member of this family.

Then there are moments. Moments that take my breath away for how small they are and how I wish I could just freeze time for a bit to enjoy it. It goes by too fast. I need it to slow down because I won't be able to get it back again. Yesterday after church, we were talking about the service (it was on adoption), she asked if we could adopt a girl so she could have a baby sister to play dolls with. She said, "Mom, I think you should adopt a little girl. You would make an great mom to a little girl. You have one already and have done a really great job." It melted my heart. I want so much to be able to give her a little sister. Someone she can play dolls and dressup with. That can go shopping with her and watch girly movies with. A sister, like mine, who can get ready for the school dances with her. SHe would have made and EXCELLENT big sister to a little sister. Don't get me wrong, she makes an excellent sister to a little brother too. They absolutely adore each other. Braedon misser her so much when she is gone or simply just not in sight.

I love my children. I wish they could slow down for just a bit so I can hold on to these days for just a little bit longer. I never want to forget a moment of them.

Wednesday, August 11, 2010

Happy Wednesday!

So the title isn't much but I am not running on creativity today. :)

Yesterday was a very long long day. We were at Children's Hospital in Denver by 9:30. We got right in to the doctor on the metabolics floor. Braedon has gained weight!! So that was wonderful news! We began the forever-long process of the family history, his history, his current state, our concerns....etc, etc, etc.

The doctor came in at 11 and observed him for an hour or more. He watched him run, talk, play with a ball, walk, retrieve things and how he reacted to being picked up and stretched. After the exam he rattled off about 6 codes to the other doctor of things to test for. One I know was a cholesterol test. He is concerned with whether Braedon's cholesterol is high enough. He said, most people think of it as a bad thing but it's even worse to not have enough of it.

The doctor was also concerned with Braedon's muscle strength. He runs like a 13 month old, not a 20month old. His hips extend too far (mine do too but I attributed that to dance and my joints have always hyperextended) and the muscle that runs under his armpit down his side does not flex as you pick him up. Rather, he goes somewhat limp and slides down through your arms. You have to have a tight grip on him when you pick him up. I always thought it was him being silly or throwing a fit but the doctor said he can feel that the muscles don't retract at all there. So they are doing some testing for that.

The other big thing they touched on briefly was autism. While his social skills are wonderful and he is totally outgoing, there are some behavioral patterns that concerned the doctor (and others before him) to watch him closely over the next 6 months to see how he develops. His speech is not as good as it should be, his GI problems can go hand in hand with autism, so can seizures. While he hasn't been ruled to have seizures yet, he has had episodes of staring off and not responding to sounds, objects, voices calling him. The doctor said if he is, it will most likely be on the lighter side.

Some of the other concerns are his mood swings and how quickly they change and explode over nothing. They want to monitor those as well to see if it is a personality trait (yay for me!) or something more.

I did ask before we left to draw labs, if there was a chance these health conditions could have been caused in utero. I have frequently worried and blamed myself for his health problems. I had a stomach infection when I got pregnant and before I knew I was carrying this beautiful baby boy I began the medication packs to clean it all up. The meds were not safe meds for pregnancy. Then you add on the blood thinner injections and the reflux medication and I have beat myself up over what I could have done to him before he was ever born. It is a horrible feeling. The doctor assured me that there was nothing I could have done to create these problems, they are genetic...whatever he is dealing with. I need not worry about how I damaged my child's health and future and well being before he even had a chance to breathe his first breath.

That gives me a sense of peace (a small one but I will take it). After four miscarriages, you begin to wonder what you hae done wrong and the next time vow to be perfect. You strive in every fasion to be perfect, eat perfectly, sleep/drink/exercise perfectly. Nothing is out of place and at the frist sign of something wrong you rush straight to the doctor because the thought of losing another precious child is more than you can bare. That was/is me. I stay awake...like tonight, wondering what "we" are missing in his diagnosis. I am praying, pleading with God to heal him and I believe He will and is doing it right now in front of me.


Please pray with me, my husband and my family that God would allow these tests to come back clean, that the IGE that was way high would come back normal and the doctors would scratch their heads and chalk him up to a medical mystery. Thank you thus far for all the prayers, advice and well wishes. We appreciate them so much!

Sunday, August 1, 2010

A day of Rest

Today at church the pastor spoke about rest. How it is a gift that has been given to us from God and we should not feel bad using it because really, He commanded us to. I have thought about this a lot today. I am so quick to say, "I can't right now, I have too much to do. When I am done we can do ....." or "I don't have time to relax, there is too much to do. I can relax when I am done...which will probably be when I am dead".

God wants us to STOP doing our "TO-DO" list and rest. To meditate, take in His wonderous creation, enjoy the children and family He has given. Today, I did that. I needed to pack up our things but I didn't. I needed to work on a benefit and block part but I didn't. I needed to finish the cleaning and laundry that I didn't finish yesterday...but I didn't. It was a slow, relaxing day; and I loved it!

The pastor also said, "Our life is not determined by our work. Our self worth is not determined by our work. Our success is not determined by our work." Nothing is determined by where we work, how much we make, how far we have excelled on the corporate ladder. It doesn't matter. That is not what God created us for. When you face struggles in life, they do not define who you are or your success/failure in life. When you experience unemployment, take the time to see what God has planned for your life; what you are destined for. Those things are important. He will provide the job and the money and the right amount of success.

I loved this sermon. It was so inspiring and talked to my heart so deeply. I am going to try and make my resolution for the rest of this year to focus on what God has for me and be proud of my accomplishments that He has ordained. It is ok for me to put motherhood first and to enjoy it. It is ok for me to want to strive to be a Godly wife. This doesn't mean that I may win the mother of the year or stepford wife award each day but that is ok. As long as I strive for my best, cherish every moment as though it were my last and rest when He gives that time to me, then I am fulfilling His plan for my life at that moment.

This has spoken to my heart and I hope that some part of it has spoken to yours. May you have a blessed week and have moments to cherish.

Tuesday, July 27, 2010

A "Good Mom" Day

Today has been a very nice, pretty uneventful day. Braedon went to the bathroom twice in the toilet!!! I was so proud of him, his sister and I did a dance in the bathroom! Followed by a sticker for trying and a smarties for actually going!!

We took Caileigh to swim lessons and I watched her stick her face in the water and float on her stomach! Anyone who knows our daughter knows this is about as big as Hell freezing over. LOL...we are not fans of water on our face. Putting her in swim lessons was the best thing we have done all summer!

I had my second interview today for Ballet Emmanuel. I am nervous but I know I did my best so the rest is in God's hands. It is intimidating to think of going back to work after not working for someone else for nearly 6 years. Sure I teach dance but....this requires me to bring in bookings for tours...their means of making money and spreading their message. The best part is, it is part time and works from home for the most part. It can't get better than that!

I am reading an amazing book that I picked up from the bookstore at church last week. It is titled, " Am I Messing Up My Kids...and Other Questions Ever Mom Asks?" I am on chapter 4 and it is hard to put it down. It is set up as a few page chapter with a reflection section at the end of each chapter. It ties in scripture and helps you to work through some of the major mental struggles we as "super moms" have.
Here is the link on Amazon.com to Lysa's book. She is a mom of 5, her children are grown or at least some are in college and the baby is still younger. I have been struggling with our oldest and establishing a God inspired mother/daughter relationship without compromising my duties to instruct and discipline according to His teachings. I admit, I get these messed up all too often and have been frustrated as of late trying to fix them "on my own". This book is set to help you "...release your stress and become refilled and refreshed...". I recommend this book to every mom, whether you are cradling your first born or putting your sixth child through their senior year of high school. I think it is a valuable tool to any mom no matter their stage of motherhood.

Well, I am headed to bed. I am going to try and put some of the principles I am learning in Lysa's book to good use tomorrow and enjoy a blessed day with my two children, making memories we will treasure for a lifetime. May you all enjoy and treasure those you love and tell them often how much you love them! Goodnight! :)

Sunday, July 25, 2010

Prayers For Hailey

A dear friend of mine, Robin , could use every prayer out there for her daughter, Hailey. This is Hailey:





I met Robin through MckMama's blog sometime at the end of last year. Hailey was in the hospital with her 6th round of Encephalopathy. Things were not good, Robin was scared and she reached out for prayer support. I contacted Robin through Facebook and we began talking. I began praying for her and Hailey and her husband Jeremy. They also have an adorable little boy, JJ.


Robin and I have been there over the past 7 months for each other. Talked, been mad, laughed at some of the silly things our husbands do sometimes. We have met when our kids have been in the hospital and made lunch dates in between. It has been great meeting and making a great friend.

Hailey is back in the hospital as of yesterday. This is her 8th episode and this particular round has been much worse. The doctors over the last several years have tried several tests, labs, drug mixes to help but nothing has worked. Currently, they are in the PICU and talk has been made today of sending Hailey to Boston Children's soon to run better, more detailed tests.


This particular round has been so hard on Robin and Jeremy. They are tired of watching their daughter battle through this. They are worn down physically, emotionally, mentally and especially financially. A few weeks ago Robin told me their insurance company had dropped Hailey and no longer would be covering any of her medical expenses. Her medications alone are nearly $4000 a month, not to mention the doctors visits, which are many and typically several a week and the hospital stays.

They are so tired of being separated and scared not knowing what is causing these episodes or how to correct them. There isn't a doctor yet that seems to have a good idea or willingness to come to a conclusion. They need help NOW!

Please be in fervent prayer for them. Please pray for the doctors, that they may come to an epiphany as to what is wrong. Please give the doctors wisdom and grace as they research and listen to Robin's concerns. Please pray for Hailey, that her little body would stay strong through these episodes. They are very violent and tough on her and many times can necessitate a crash cart being close by. Please pray for Robin and Jeremy as they try to stay strong in each other and parent two children who are not allowed to be together during these times. Please pray for their spirits, that God would life them up and comfort them; bring them peace. Please pray for their financial stresses as they are many and overwhelming. Please just pray.

We met this past Friday for lunch while I was at Children's Hospital with my son. Hailey was so happy and smiling through the entire lunch. It is hard to see these pictures (they were taken during lunch) and know that less than 24 hours later she was rushed to the ER. It breaks my heart to see this and hear the pain in Robin's words; any mother can relate.

The dance studio I work with has decided to organize a dance benefit for the Visbal family. We are still ironing out dates but it looks to be the end of August or first week in September. We would love all the local Colorado support that we can get. If you are not local and would like to give to the family, please send me an email at cmartin2773@gmail.com and I can give you more information and arrange a donation site if I see interest. We are trying to raise as much money as we can to give them, to help alleviate the heavy financial burden they have on their shoulders. Since Hailey's episodes are so unpredictable and can last several weeks, Robin is unable to work. She has created an Etsy store called Hailey Bug Creations to try and bring in any money she can from home. Jeremy works full time and bears the brunt of their burden. Please consider stopping by and browsing her store. I have purchased many things from her and they are always adorable and very reasonably priced. Like this headband Caileigh LOVES to wear:


I also am an Independent Mary Kay Consultant. I am committed to giving back part of my sales to Robin and Jeremy. If you would like to help that way, please visit my website, www.marykay.com/cmartin2773 and help yourself to wonderful products for your body and valuable tips and learning materials. I will give 20% of my sales to Robin and Jeremy as my own way of helping.

If giving is not something you can do right now, please pray, send her a message, leave her a comment that shows support. When your child is laying in a hospital bed, machines going off and doctors scratching their heads, it brings on the worst thoughts and extreme panic a mother could ever feel. I have been there and thank God that He is healing my son. I pray the same for Robin and Hailey.

Please check back often and I will continue to post updates on Hailey's condition as well as more information on the dance benefit as it comes available. Thank you for your prayers and thoughts in advance. This family deserves a break and miraculous healing. Their daughter is too precious to be suffering like this.

Thanks and God Bless you and your family.

Saturday, July 24, 2010

Stream of Consciousness

I can't sleep. I have been trying for the better part of 4.5 hours. I have a pinched nerve or something in my back that is making it extremely difficult to breathe; this has been happening for about 3 days now. I layed in bed for a while and decided it wasn't getting me anywhere so I got up to work. :)

I have cleaned out unwanted pictures from my files. Played around with Lightroom; I downloaded a free trial and it is wonderful! I am going to be spoiled now....wonder if that could count as a Christmas in July gift??

I read up on some new products and press releases for Mary Kay and may I say, they have some really cool new products! I found an article on their Facebook fan page that talks about the new Oil-Free Eye Makeup Remover and how it is economical and sensitive for your skin!

Mary Kay is also committed to building a Habitat for Humanity house in Dallas, TX this July during the annual Mary Kay Seminar (this is an annual convention at the beginning of the Mary Kay year for all sales force). From what I have read, consultants from each division are helping to build this house while in Dallas for training. That is absolutely AMAZING!!!!! What a wonderful idea and way to give back to the community!

I have also read on Mary Kay's Charitable Foundation fan page that a group of Mary Kay sales force went to Washington, D.C. in June to stand before Congress and address the issue of domestic violence and petition for Family Violence and Prevention Services Act. I love how Mary Kay, as a company, is standing behind valuable causes for our country and is taking an active approach to stomping out things like domestic violence and cancer!

I am so pumped and excited!! If you would like to learn more, please visit their Facebook fan page or check out my website at www.marykay.com/cmartin2773 . There are links on my webpage to all sorts of wonderful information and exciting happenings for the company and the community it services!

Ok, I am not tired. Quite the opposite actually. But it is 4:16am and I have to go teach a whole room of preschool children how to dance like a ballerina in 5 hours....coffee yes?? Hope this post was as informational for you as it was for me. Have a great weekend and tell someone how much they mean to you!! God Bless!

Friday, July 23, 2010

Free and Clear!

That is what the GI doctors gave us as a diagnosis today. They were more than pleased with Braedon's development and weight gain (he went from the 33rd% to the 50th% in 6 weeks) and his tummy sounds were great!

They were overjoyed with how well he has done the last month since he has been clear of episodes throughout that time frame.

Our protocol now is to try taking out his morning dose of the medication helping his digestion and see how his body responds to that. She agrees the evening dose for now is still wise until we see how he does and then maybe go to every other night if he tolerates the first decrease well.

We went over lab results and everything looked good except his IgE levels. There were very off. This is an immunoglobulin that deals with allergies. It can be a result of a parasitic infection (he has more than been tested for these and everything has been clear) or allergy issues. We have an appointment scheduled with his allergist at National Jewish mid September (that was their earliest :( so we will have to be patient) to do more testing. The most popular I guess are feline, dust mites, mold and pollen. So I guess that is where we will start. These antibodies can be hyper-active if he has been in contact with his allergies. So we will see what they say and possibly try adding soy and/or dairy back into his diet.

I did ask what would be next if the weaning of meds doesn't work. She said they aren't sure. There are clinics around the country that test the digestive issues, they don't do these certain test. They are in Columbus, Ohio and Milwaukee, WI. She said even if they were to give a diagnosis, they would treat it the same way and there isn't a cure/fix to the problem. He would be this way for life...yay! =/ She said there is the possibility of using Botox to inject into the sphincter (sp??) between the stomach and small intestine to keep it open so food can be passed through. Please be in prayer about this. They have someone who can do this but it doesn't sound very fun or easy to me....

Heading to bed now, thankful beyond measure that the labs came back mostly normal and the doctors were pleased with how Braedon looked and acted while we were there. Praising God for one step at a time!

Monday, July 19, 2010

Prayers and Thanksgiving

It has been nearly a month since I have posted here. I feel horrible. It isn't that I have been away from my computer or haven't had time to log on to Blogger....I have had time, I did log on. I would get ready to post and was just without energy.

My lack of energy has not been due to Braedon being sick and thus not getting any sleep. Instead it has been because Braedon is doing so incredibly well that we have been going NON-STOP. He has not had one single episode since June 9th! We are giving him medications for digestion and respiratory functions but other than that, he is free and clear. He has decided, based on his new found freedom from being sick, to bless us with a wake up call every morning between 6-715 am....I am not a morning person so this is really not acceptable to me but what do ya do??? He goes fast forward, almost as if he is making up for all the lost time of being sick. His vocabulary has suddenly taken off; we hear nearly 2 or 3 new words every day and he doesn't forget them! He is happy, running, playing and developing his own personality. It is wonderful to see but also very exhausting!

We have spent some much needed family time and gone for day hikes or overnight camping trips in the mountains. We are in swim lessons with both of the kids and having a great summer together.

We are also buying a house! It has been made clear that for now, God's plan is not for us to pick up and move to the East coast. As much as this pains me and is truly not what I want....it doesn't really matter because it is not what HE wants. Through all of our trials and struggles with Braedon I have come to learn to accept God's plan and will much more than I used to. We are not going to be far from my parents and the kids will have their own room....who am I kidding, I get me own room too!! That is a big thing when you have shared your room with the laundry room, bathroom, and nursery for nearly 3 years. We are so blessed with the house God is providing us and can't wait to make a new start for our family.

This Thursday I am taking Braedon to Denver Childrens' to talk with his GI doctors on the next step. He has been doing well and thriving so that is a plus. All the tests they have done are coming back normal or negative which is also a huge plus (they have been testing some very scary, terminal things). It still remains to be seen if the meds are making him feel better or if God has miraculously healed Braedon. I half expect them to try weaning him off the meds to see what happens. I am nervous about this but know that God will protect my son.

Both Soapy and I have job interviews this week. His would bring him home permanently and mine would be a great Christian company that will allow me to work from home. Please be in prayer that if these are being sent from God that the doors will fling wide open.

I am also considering a mission trip to Alaska this October. I have received information about the trip today and am going to be in prayer and meditation to see if it is where God wants me to go. It will be delivering VBS (Vacation Bible School) to a community of missionaries' children. This retreat is once a year and is highly anticipated by all serving in Alaska. Because of this, there is a great amount of spiritual warfare going on that week. I am praying and deliberating on whether it is where God wants me to serve and if He thinks I am spiritually strong enough for this trip right now, in my walk with Him.

Happy Monday and have a wonderful, blessed week!

Monday, June 28, 2010

Not Me Monday!--almost too late :)


We have been going and going today. We started Caileigh's swimming lessons and I taught dance, cleaned in between and played outside! It's been so busy!! But I thought I would put a few things together for MckMama's Not Me Monday. The idea is you get to confess whatever embarassing, frustrating or just dim whitted things you have done over the last week and get it off your chest! This week she is giving away a special prize! Head on over and check it out and hop in soon!

So this past week I did not take my children to the doctors for what was supposed to be a simple appointment for Caileigh only to find out she's allergic to the sun and Braedon has a double ear infection. While at said appointment, I definitely did not get thrown up on by Braedon and then wipe out the inside of my bra and clothes with baby wipes just to make it home. I did not treat this as though it was a normal occurance because my son never throws up on a regular basis all over me. I did not tell the nurses that it was ok, I have one of those wonderful plastic puke buckets in my car complete with towels if needed on the way home.

I did not wake up one morning to find Braedon outside running around pantsless in the backyard. I always make sure he is safe and secured in his crib and would never sleep through him crawling out and walking out of our room to go play by himself.

I would never crawl through the front window after locking my keys in the house. I always make sure they are in my pocket before closing the door.

I most certainly did not look at Braedon the other day and ask him to please take the waterfall rocks out of his mouth and tell him "Son, please put those back. I told you yesterday these are not for eating,they are for watching". Apparentl watching rocks in water is not fun for a 19 month old!

Happy Not Me Monday!!

Quick Post with GREAT news!!!

I can't stay long, Caileigh starts swimming lessons today! Just wanted to leave a quick note letting everyone know that we got test results for Braedon back.

He does NOT NOT, let me repeat, NOOOOT have Cystic Fibrosis or the Mitocondria Disorder!!!!! PRAISE GOD! I am so relieved these tests were normal and we don't have to worry about them anymore. We still don't know what he has or any ideas of what to do next. We will meet with his team of doctors on July 23, unless a cancellation comes up before then.

The last two weeks he has been so much better than the last few months! Braedon went to the doctor Friday for a fever, found out it's a double ear infection  but we found out he is 26.1 pounds! He has gained all the weight back plus a pound since May 7th. That is amazing and exciting! We are so thankful and amazed that God is allowing him to feel better, have more energy and being able to live like a normal 18 month old.

We are praying for ultimate healing and that God will show us what His will is and direction through all of it. We are praying that somewhere along the way a test can be done to determine why he has this problem and how to fix it. We are looking forward to not having to worry about when he will have another episode.

Well, I have run! Wish us luck!! Caileigh is not a fan of putting her face in water so today may be a bit interesting to say the least. :)

Tuesday, June 22, 2010

Great Day!

Have you ever sat at the end of the day, when the kids are in bed and asleep and thought, "I can do this! I may finally be getting the hang of this parenting thing!"...well that is where I am right now. I am too excited to go to bed so I am blogging. :)

Braedon has been doing much better the last 10 days or so. We have gone without a major episode. He has had some GI cramping I think (pain and swollen abdomen, fussiness) but know violent vomiting or mini seizure-like episodes for almost 2 weeks! I am so excited!!! It's been nice to be able to have a somewhat normal life! We are still waiting for test results for the cystic fibrosis and the genetic tests. They said 4 weeks on the CF so that puts us at 2 weeks out. The others should start trickling in any day now. I am going to put calls into the labs to see if anything has come back yet and to make sure the results are being sent to the right doctors.

Today Caileigh, Braedon and I headed to my old high school parking lot to practice riding bikes. Caileigh is to say petrified of riding her bike would be an understatement. She loves the idea and really wants to ride but she is a very cautious child. I decided since Braedon is doing so well this past week GI related, I have the time, energy and attention span to help her. The school lot is flat (which is impressive in Colorado) and it's warm (which is also impressive for CO as most of the year the bike has sat in the garage due to cold, snow and hills).

She was nervous at first but after a few minutes was pumping up and down the parking lot. We had a few problems with the training wheels turning and stuff so we ended our practice time early. She was a champ though! She would get off and fix it and hop right back on and take off (if you know my daughter, you know this is totally out of character for her and she would rather watch grass grow than to try something that intimidates her).

Our goal for the summer???......GET THE TRAINING WHEELS OFF!!!! Caileigh is a very tall almost 6 year old. With that comes a heavier than average almost 6 year old. Part of the complications I would imagine come from her weight exceeding the maximum capacity for the training wheels. Our goal is to have her riding without them be end of summer.

The best part though, aside from seeing her smile, trusting me and having fun, was her coming home and while in the bathtub, said, "Mom, I had a really great day today. Thanks for helping me, it sure was fun!" For those of you who know my daughter you know what a step that was. For those of you who don't, she does not trust anyone for any reason. She wants to and it breaks her heart that she doesn't. She is very cautious and has always had a somewhat panic-type personality about trying new things (unless she is away from us and with friends and then she seems to branch out a bit). I was SO proud of her today!

I took some video and pictures of her so I will post them tomorrow. I need to get some sleep so I can function, I promised to take them to the Cheyenne Mtn Zoo in the morning. Should be loads of fun, you can feed the giraffes right from your hand.

Also, thank you to any of you that have been praying for us. I definitely feel the peace lately. I am working hard on my time with God and letting Him take control of our lives and the outcome for Braedon. It is not easy to let go of your child and acknowledge you can't control their fate but I am getting better. Also, two weeks ago Soapy was able to catch a bid on another crew for work. They are in the same place as his old crew and he is doing the same job but this foreman is infinitely times better than the last. Soapy has more enjoyed (as much as possible) going to work than regretted having to spend time with these groups of guys. I am so thankful for that answer to prayer while we search for a local position of some sort.

Wednesday, June 9, 2010

Encouraged

I am so excited and encouraged and wanted to share with y'all what is happening that is making me that way.

In the last three weeks I have been noticing some changes in Braedon. His GI stuff is still occurring but on a much less frequent cycle and I believe that to be a little bit from the medications they have him on for digestion and a lot from prayer from so many people! His energy has picked up and he is active from dawn to dusk! As a parent of a chronically sick child, I much prefer the go-go activity to the listlessness that was his daily life this time last month. I can't believe how far he has come in a mere 4 weeks!

Other things I have noticed changing in our youngest is his balance and mental advances. He is much more sure footed lately and is picking up speed chasing his sister around the house. He has also added a large (for him and all things considered) list of vocabulary and sounds to his repertoire. He can now make the sounds of most zoo and farm animals (before he went into the hospital the beginning of May he could bark and meow and that was it!), he can say "ish, Nana, papa, started saying Dada again, drink, cereal, juice, Elmo". Before the beginning of May he said, "mama, da (dog), ba (ball), ou (out)". I can't believe how his vocabulary has just taken off!! I am wondering if his body was just deprived of so many nutrients since he wasn't digesting anything and was lacking what he needed for his brain to function. It's is so great to see the excitement on his face when he uses a new word and we make such a big deal out of it. He is noticeably less frustrated in his communication than he was a month ago.

Three days ago, he started really pulling on his diaper and getting upset when he was wet or dirty. Once, Caileigh came running to tell us he took off his shorts and diaper because it was wet. We brought out Caileigh's old training potty. He has gone in a few times each day just to sit on it, especially if I go in to go to the bathroom. Yesterday, by chance, he actually was sitting there when he went! He was so excited. So we now have Smarties as treats for going to the bathroom. :) I am hesitant to start potty training with his current issues but if he's ready, why not start? So wish us luck and anybody out there with training advice for a Mommy with her first boy......I will take all I can get!

Monday, June 7, 2010

More Tests today!

We went to the Childrens Hospital (it's actually a wing of a main hospital here in the Springs but is partnered with Denver Childrens) today for more bloodwork. We sent Caileigh to VBS with my Mom (who volunteered so we could get a discount for registration, THANK YOU MOM), Soapy and I headed to the hospital with Braedon.

Do any of you have those mornings where your child(ren) are just being exceptionally happy and good? You wonder when is it going to unravel and pray that it never ends?? Well, that was our day today. Braedon was all smiles and giggles all morning. He waved at everyone as we walked to the outpatient lab and was so pleasant and well mannered. I hated to take him in so they could stick him, I knew it was going to make his mood turn south.

Well, it took three of us to hold him down but they were able to get it in the first few seconds and soon after that the blood draw was over! I was surprised by the small amount they drew but she assured me it was enough for the tests so we said our thank yous and goodbyes and headed out the door. Braedon was understandably upset....that was until we saw a therapy dog on our way out and he got to pet the dog and then ride the rest of the way out in a wagon (he loves the wagons). The boys dropped me off to teach dance and then picked me up, upon arrival Braedon was asleep.

We got home and I noticed we had a message on the home phone so I played it. "Mrs Martin, this is D from the Outpatient Lab. I need to talk to you right away. Please call me immediately."  --Not the kind of message I was hoping for but I called her back: "It seems when we printed the faxed lab orders from Denver that only 3 of 10 pages printed. We need you to come back as soon as possible so we can draw the rest and get it sent with the draw from this morning." 

Not what I wanted to hear. By this time, Soapy was packing for work, my mom and Caileigh had just gotten home and we were preparing to go get lunch so that later today we could play in the kiddie pool I had set up this morning. Instead we had lunch, said our goodbyes to Daddy and headed for the hospital...again. Braedon was still in such a wonderful mood, I was dreading this second trip.

Sure enough, we needed 6 more tubes of blood and I had the priviledge of holding him myself. :( Not a happy Mama. We left with handfuls of stickers as the nurses felt so bad and then felt worse once Braedon waved bye and blew them kisses (that mandated atleast 5 more stickers). His mood however had turned and not in a good way. He never recovered and to say I was glad to put him in his crib is an extreme understatement.

All in all, they tested for Cystic Fibrosis (this time as a blood draw so it will take 4 weeks for results, the sweat test is within 24 hrs but I had no desire to do that again and have it not work a second time), several immunoglobulin disorders and a few more autoimmune disorders as well. We still don't have results back on all the genetic tests yet but I don't really expect anything for another 4 weeks atleast. It is a long process but a necessary process none the less.

Please continue to be in prayer for these tests and the ones we are waiting for already. We have his 24 hr EEG scheduled for the end of July unless they have a cancellation. This past week he has been doing much better GI wise and I can't recall a starring episode this past week but his sleep has been very restless and at times the GI stuff looks as though we may be heading into another episode but so far so good. We are so thankful for that.

Thank you everyone who is reading this and praying for our son and our entire family. We so appreciate all the prayers, tips and words of encouragement that we are getting. It helps get me through some of the time when Soapy is away. Eventhough my parents are here all the time, it is hard as the parents to be apart when your child needs both of you there.

Wednesday, June 2, 2010

Much deserved, and belated pictures

Here are some very belated pictures from a photo session with had with Jennifer McKinney when she and Israel came to Colorado Springs for Focus On The Family's Focus on Marriage conference in February. I was so excited to be able to get these pictures done, even if I did have to sacrifice both anniversary and birthday dates to get them! It was worth it, there were so many pictures and they were all so good. We made some good friends in the process and have memories to treasure forever.

ENJOY!

This was one of our family pictures on the steps of the castle. Caileigh was so upset we were taking her to a castle for pictures and not letting her wear a dress. She was so worried she would run into a real princess and not be properly dressed....yes a girly girl and she's all mine!




I love this one just because I'm the Mama and if I had it my way I would love to keep him like this for a while. He is such a sweet, precious little boy who loves his Mama very much. Don't be fooled though, sweet/precious do NOT exclude him from being a handful/over active and ALL boy!



I love this one of Caileigh blowing snow. We had so much fun with this picture. It wasn't that cold, it was in the 40's but had snowed the night before. She picked up a handful and started blowing it all over.





We had just gotten to the Castle, Braedon had just woken up and I took the oxygen sticky tabs off his face (FYI, don't just pull them off, it takes off skin thus leaving you with sores on their face and a very upset little boy)


I loved this one, Caileigh played peek-a-boo with Jennifer and they turned out great.



What can I say? I just love his eyes and he can be so sensitive when he wants to be.


Well, that is it for now. I will post more later but I am going to bed. I was able to put Braedon back to bed in between posts and I am going to hit the bed before he wakes up again! Good night everyone and God Bless!

Stream of Consciousness

I feel horrible for not updating sooner. We have had a very busy three weeks. After getting Braedon out of the hospital, my sister came out to visit for a week to help out. She left and the next week my mother in law, sister in law and brother in law came to visit for a week. This past week my uncle came out to visit. We have been blessed with the ability to spend so much time with family lately and the wonderful help that they bring.

The medicinal cocktail they have Braedon on seems to be helping a bit. They have put him on probiotics and zinc to help with his appetite and some of the stomach discomfort. He is on some respiratory medicines to help the asthma and nasal secretions. He is on some antibiotics that, in this weaker concentration, are used to promote digestion. All of these, while expensive, are actually helping. Instead of the daily vomit and diarrhea routine we were experiencing, it is much more tame. We have two really bad days a week where he just suddenly starts throwing up and will every 20 minutes for about 5 hours, during that time the bowls get worse and they persist for about 48 hours. He gets very week and just sleeps in my arms until his body starts to heal and he wakes up with more pep. He has gained back about a pound and a half since the 11th of May. We are grateful for that, he is nearly at the same weight he was last June and even though he has always been  a good six months ahead in his clothes size, he is now sporting 12-18 month clothing (he actually fits 9mos shorts best around the waist, 12 months are now even too big). We bought him 12 mos clothes last June for our vacation to Charleston. I am trying to not freak out about that and be patient and let the medicines help to encourage him to eat.

I am rejoicing in the fact that my husband met with his VA counselor today. She helped him with his resume and said she believed she could help him find a new job that would offer great benefits fairly soon and easily. I am praying for this; I need him home, our kids need him home.

Braedon has also added some new vocabulary this week and I am praying it sticks this time. He has a habit of adding new words or sounds and then loses them just as quickly. He can now ribbit like a frog, he started saying "DADA" which he hasn't said since he was about 7 months old. He still barks and meows and I think he tried to say "sissy" and crow like a rooster today. If I can remember I will try and record him imitating a frog and post it soon.

Tomorrow we leave for Denver again for more blood work. The sweat test they did last week didn't collect enough sweat for the test. If anyone is ever faced with having to do this for your child, save yourself the trouble and torture of your child afraid and screaming, just get the blood test; they will do it anyways if you have a positive sweat test. We are going to do the blood test for Cystic Fibrosis tomorrow and a whole gamut of tests for antibody allergies that would coincide with the autoimmune disorders they are testing for. I don't know how long those take to get back, I am hoping not long.

Caileigh is out of school now, has been for almost two weeks. She is getting bored already, not that she has told me or that the action packed adventures our family members have taken her on hasn't been enough but I can tell she isn't being mentally stimulated anymore. Time to break out the crafts and workbooks I bought just for the summer!

We are having a garage sale this weekend to get rid of things we don't need or can live without for now. We are taking all the money and paying off some debt. Braedon's health stuff is starting to get up there in $$ and I am concerned it may get worse before it gets better. We are talking of relocating to a few different locations as we figure out what Braedon's problems are. We don't want to have debt to hang over us along with the financial burden of a sick child. A friend of my husband, his wife does medical billing from home; I am looking into it. It may be an option for now until I can have the time to pursue photography or Mary Kay. Neither is working for me right now, I just can't plan on being anywhere when I am not sure Braedon will be well.

Please pray for us that God shows us where He wants us to be and what He wants us to be doing. Please pray God provides us with conclusive test results so we can begin to move forward. Please pray I can get some sleep tonight; Braedon has already been up twice crying in pain and I have typed most of this while holding him asleep in my arms at one point or another.

*****Thank you to everyone praying for us and for loving on my son from a distance. It means so much to me to know there are other prayer "warriors" out there petitioning on his behalf while I hold him.*****

Thursday, May 20, 2010

We Keep Going

I took Braedon back to Children's Hospital today to meet with the GI team. They came in and evaluated him, took a diaper sample from this morning and left the room for nearly 45 minutes. When they came back, they sat down, looked at me and said, "We have no idea what is wrong with your son." What horribly frustrating words to hear but comforting at the same time. I was so happy that they weren't trying to lie to me and comfortable telling me the truth. It was so frustrating that there still, is no idea.

What do we know?

Well, we know that he is still having blood in his diapers. The stool samples taken in the hospital came back clear for bacterial growth and infection. We know that his weight right now puts him in the 35% for his age where as in February he was in the 68% and at birth was 98%. That is not good. We know that something is wrong and thankfully the GI doctors still have some ideas up their sleeves while we are waiting for the mitocondrial tests to come back.

I expressed my concerns over the fact that no one knows anything and he is 18 months next week. I expressed that I have started doing research on my own in an effort to advocate and help search possible conditions. Instead of being brushed off, Dr S sat down, stopped what he was doing and asked me what I thought it could be.

I told him I was concerned about the autoimmune disorders since we know some are on both sides of the family. They have only tested one and there are atleast 5 or 6 more that I researched. He agreed and had that on his list. We both suggested Cystic Fibrosis, I have thought about that for a while and he actually brought it up so we are doing a sweat test next Thursday.

He said there are a few other things he would like to consider but would like to get the sweat test done and some more allergy tests done that he said were not normal allergies (I am wondering if it has to do with antibodies we carry and how some people actually have an allergy to them; it is part of the auto immune diseases).

So, we don't know any more and no less. They have put him on zinc, probiotics and more erythromicin to see if we can boost his weight again and the antibiotic to help wtih the digestion problems. He has been getting worse again the last two days and I have wonder/fear what tomorrow may bring just by the way his diapers have looked today. We will see, I am praying everything is fine and he remains comfortable. He has not been sleeping much at all and that has us both tired and moody.

I hope this helps, I am trying to keep everyone updated as soon as I can. I have been a little overwhelmed keeping up with him and Caileigh's last week of kindergarten that the house has suffered and so has my correspondence in how Braedon is doing. If anyone has any questions or hasn't heard from me, please give me a call or email me with your questions.

Tomorrow I have some absolutely beautiful pictures to post of our kiddos. A friend of ours took them back in February and it took a bit to get them due to prior commitments (which was no problem at all) so I am just now getting around to uploading them. Check back tomorrow for some very beautiful and colorful pictures of our babies. :)

Good Night!

Monday, May 17, 2010

No Masses!

We had our followup with the neurologist today. She was excited to inform us that there are NO MASSES OR TUMORS on Braedon's brain!!!!!!

We are so excited and releaved about this! She wants to monitor his development process over the next six months to make sure he is on track with his speech. He has a few "words" and I say that loosly because to anyone besides immediate family, they don't sound like words; except "mama" that is a wonderful word that I love to hear. :)

She doesn't have any test results back yet and unfortunately the mitocondrial tests that everyone is particularly interested in will take forever to get back; like it could be late June at earliest that some of those start coming in.....it's a waiting game.

Yesterday I sat and listened to a wonderful and much needed sermon. It was on being in God's waiting room. Sometimes just being in His waiting room is what He has called us to do. To see what we will do while we are there. Sometimes there is nothing more, no perfect job, perfect house, etc. Sometimes He just wants to see what we will do in the midst of waiting and how we will portray our love for Him to others during that time. When we cloud our lives with worry and stress and complaining, we ruin the opportunity He has given us to wait and wait patiently on Him.

I am taking these valuable lessons and trying to apply them moving forward. I need to give it all to Him and I am trying, I really am. I am praying God gives me the insight to see what I can use this waiting time for to glorify His kingdom.

Right now, I am cherishing my children, rejoicing in a clean MRI and blowing bubbles in the backyard with the two most beautiful gifts I have ever received. :)

Sunday, May 16, 2010

Bring on the results!

So, after posting in the very very early hours yesterday morning because I couldn't sleep, I finally went to bed. At 6:45 my sister left for the airport and about 45 minutes later, Braedon started throwing up violently. He was like that until about 1030 before the vomitting slowed down. The vomitting also brought on the diarrhea. Friday night he missed one dose of his medication, I didn't think it was that big of a deal or I would have woken him up when I realized it. The last few days I have noticed him not doing as well as he was right after we started the medication. Yesterday morning was horrible, you would have never known he had been on medication at all.

I was so discouraged. I was so angry and I spent a few moments yelling at God to make sure he knew I was angry that Braedon was sick again. Poor thing would just crawl up onto my chest and lay there.

Today has been better. He only vomitted once, the diarrhea finally died off a bit this afternoon. Thank goodness! We have not missed any of the medication today and I won't make that mistake again. :)

Church was very convicting this morning. I attended Seacoast Church online. I love that church! The sermon was on God's waiting room and what things can make us miserable while we are in the waiting room and how sometimes God's calling is simply for us to be in the waiting room. Brought a lot out in front for me to think about and pray about.

Tomorrow morning....or later this morning if you want to be technical about it, we go to meet with the neurology team. We will find out what all of their tests showed, including the MRI. I am nervous and really not wanting to go by myself but no one is going to be able to go with me. Please pray that they are able to tell me what his episode was two weeks ago when he was admitted. I say that hesitantly because I dont want anything serious to be wrong that cannot be fixed easily.

I also have appointments with his primary, the gastrointestinal team, ENT, allergist and I think I am missing one over the next week and a half. Please pray these go well. It is still too early to get genetic results back from what I have been told. It will most likely be the end of June at the VERY earliest.

I am going to head to bed now so I can get some sleep. Braedon has been waking up crying a few times already but has been able to go back to sleep alone. Please pray tonight is not like yesterday morning.

Saturday, May 15, 2010

Trying to find a peace

We still don't have any word on any results. I have 5 appointments already made with Braedon's specialists this next week and two more to make Monday. I am trying SO. HARD. to be patient....today was a very hard day.

Braedon didn't sleep much last night, he didn't throw up but was very restless and screaming out in pain before calming down and falling back to sleep several times. His diapers are getting worse again, they most often look "radio-active green", I swear they could glow in the dark. He is getting more restless and discruntled during the days and sleeping restlessly during his naps.

I am so tired and so drained. I had a followup appointment with my primary yesterday and the receptionist, a wonderful woman and new mom, noticed I "looked exhausted". My primary asked how things were going, she called me two days before Braedon ended up in the hospital. I recounted everything quickly and she kept telling me how strong I am. I don't feel strong. I am struggling.

I am struggling with how to be strong for my kids. I am struggling with how to care for Braedon and cherish every minute while in the forefront of my mind I am constantly aware of what lies ahead of us if we receive positive results for some of these disorders. It is tearing me apart to know the prognosis is not good, that some doctors only give life expectancies of a few years to a max of living until age 30ish....that is NOT acceptable.

I am struggling to find peace in this and know God is in this no matter what. I fear losing my children; a mother's deepest fears I think. I am struggling with how to resist looking at anything else on the internet and journals until we hear from doctors. I am struggling with how to set Braedon aside and give Caileigh the time she deserves to have and needs badly. I struggle with the thought of missing any part of Braedon, with the thought of missing any part of Caileigh.

I need peace. I need answers and for them to be ok and for God to give Braedon the miraculous healing he needs because I am so tired and am finally realizing I have to give up all control to God. I have realized this week there is absolutely nothing I can do. It's almost as if God has given me several chances over the last 29 years to give it all up and I have never been able to do it; the circumstances have never been great enough. Well, now they are. I HAVE to give it all up to Him. I NEED to give it all up to Him. That honestly scares the crap out of me!

My sister flew into town for the week to be with me and the kids, and to help me with Caileigh. She was amazing! I miss her so much; she is my best friend. She and I had a chance to sit here and talk today while Caileigh was in school. It was so good, so healthy. I cried a lot, so did she. We have made a "To-Do"  list of things I need to do in steps to help myself move forward. There are things for my marriage, for me personally to grow and become the person I used to be, things to help me as a mom and things for me to do to be able to give it all up to God and rely on Him the way I expect to be able to do with Soapy.

SHe said something that really stood out to me. I am looking to my husband to support me, encourage me, fill me and comfort me in a way that is totally impossible. It is just a very unrealistic expectation. She told me that God needs to be able to fill those needs for me and He will if I let Him. She related it to a first romance, you know, the kind you have in high school. The kind where anything is possible, the person is the most perfect guy you've ever met. They do everything right, you will be together forever, blah blah blah. :) Well, she said that is a glimpse at the kind of love relationship we are to have with God. Once that first love ends, we are hurt and our perception of love changes forever. Most women put such high expectaions on their husbands and it leads to such problems later in their marriage. Their husbands feel defeated and overwhelmed and unsuccessful at being the perfect husband. The women wonder how they could have married someone so wrong for them who doesn't fill their every need.

Husbands are not supposed to be able to fill those needs. My sister said, about her own marriage, that there are things she always imagined having in her marriage, that her husband would do for her that he will never do; she will never get them. That's ok, he's not supposed to. God gives you just enough love on earth to keep you wanting more in Heaven. He has given us a companion to live life with that we can love but not whole heartedly. If we loved them whole heartedly and they fit every pre-requesete we had, we wouldn't need God in our lives. God is to fill the voids of our life, of our marriage. He is to be our true love.

This is the peace I am dwelling on tonight and reminding myself as many times as it takes to keep myself looking forward and positive and committed to caring for my children and finding my son the best care possible. GOD is going to take care of us and of Braedon. I am praying if these results come back positive that He gives a miraculous healing because that is what it's going to take. I am praying if they come back negative that He gives a miraculous healing and totally baffles the doctors. Either way, I am praying...praying...praying.

Please be praying with me.