tag:blogger.com,1999:blog-56949477448391645442024-03-19T07:16:17.583-04:00Brooks Family Red Thread JourniesA blog about the life and times of our family! Originally this blog was all about our adoption, now it's mostly to keep family and friends up to date on medical stuff with Emmie!
<a href="https://www.youcaring.com/emmiebrooks-976538"><b>Emmie's Crowd Funding link</b></a>Brooks Family Red Thread Journieshttp://www.blogger.com/profile/11145492897290327969noreply@blogger.comBlogger82125tag:blogger.com,1999:blog-5694947744839164544.post-79938408389982109342017-10-17T22:35:00.001-04:002017-10-17T22:38:12.073-04:00A momma's perspective on Day 1 of chemo<div style="background-color: white; color: #222222; line-height: normal;">
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<span style="font-family: "verdana" , sans-serif; font-size: large;">Arrival @6:15am. I slept very little last night. I was tired and for the first time feeling really stressed about what I was about to put my daughter through. Right before they took her, we went potty. I tried to convince Emmie to run for the exit with me!! She said "no mommy, we'll get in trouble." Wow! Who is this rule follower?!?!?!</span></div>
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<span style="font-family: "verdana" , sans-serif; font-size: large;">She came through the port placement surgery like a rock star! Came out of anesthesia doing great! Spunky! Asking for crackers and water! She knows the drill! She was in a little pain from the port, but over all doing great. </span></div>
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<span style="font-family: "verdana" , sans-serif; font-size: large;"><span style="color: #222222;">It was at this moment that I suddenly hit my wall. I'm not sure what did it for me, but I had this overwhelming flood of emotions, like someone opened the floodgate and I couldn't hold it back anymore. I had to leave the room. I try not to ever break down in front of Em. I spent a good 20 minutes pacing the hallway outside of surgery in tears, but I collected myself and returned to my little super hero who was ready to get discharged. </span></span></div>
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<span style="font-family: "verdana" , sans-serif; font-size: large;">We worked our way up to the oncology/infusion area with the help of Tiffany, a really great RN coordinator! She sat with us and went through an overwhelming amount of information. She was seriously the sweetest, nicest person ever! </span></div>
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<span style="font-family: "verdana" , sans-serif; font-size: large;">Emmie's infusion started at 12:12pm it was done by 1:00pm. They had already given Em her first bag of chemo drugs without her really even noticing! She was seriously amazing today! </span></div>
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<span style="font-family: "verdana" , sans-serif; font-size: large;">We left at 1:15pm. Emmie wanted chicken nuggets and a milk shake. We stopped and got food, were home around 2:15. Emmie started playing like nothing had happened to her today. In fact, she was mad that we wouldn't let her go run around outside?!?! What?!?!</span></div>
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<span style="font-family: "verdana" , sans-serif; font-size: large;"><span style="color: #222222;">The stress leading up to day one has been overwhelming at times. I'm happy day one is over. I'm happy she handled it like a rock star! However, this is going to be a long road. It's a 28 week regimen. For the next 10 weeks, we get weekly infusions. After that she will get an infusion every three weeks until April 24th. It's going to be a long winter! I pray she continues to take all of this like the superhero she is!</span></span></div>
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<span style="font-family: "verdana" , sans-serif; font-size: large;"><span style="color: #222222;">A friend showed me this quote yesterday. I added it to our family photo. It fits Emmie so well!!! </span></span></div>
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<span style="font-family: "verdana" , sans-serif; font-size: large;"><span style="color: #222222;">God is within her; she will not fall. Psalm 46:5</span></span></div>
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Brooks Family Red Thread Journieshttp://www.blogger.com/profile/11145492897290327969noreply@blogger.com4tag:blogger.com,1999:blog-5694947744839164544.post-81571848194075627972017-10-10T18:54:00.000-04:002017-10-10T18:54:31.103-04:00Update on Emmie's latest surgery and cancer diagnosis<span style="font-family: "verdana" , sans-serif; font-size: large;">Well, here we are again. It seems like we were in a very similar spot last year. I'll give you a rundown of the latest events in Emmie's medical journey and a look ahead.</span><br />
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<span style="font-family: "verdana" , sans-serif; font-size: large;">We have been feeling pretty good about Emmie's medical health lately. She's off all BP meds, she's completely recovered from the major vascular surgery last November, her cancer scan in July was clear, all was looking great! </span><br />
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<span style="font-family: "verdana" , sans-serif; font-size: large;">Late August, we met with the neurosurgeon who will do Emmie's first back surgery, the tether cord snip. He wanted an updated MRI of her spine. The MRI showed a spot on her spleen that looked suspicious. So, oncology looked at it, as well as a few other doctors. They wanted another image study on the spleen, so on Sept 15th, she had an MRI of her abdomen and brain (for other reasons which I'll get to later). The new imaging of her spleen showed the spot had already grown a centimeter in a month. This rapid growth pushed the oncology team to act quickly. So, on Sept 25th, Emmie's spleen was removed. The spot was a tumor and it was another Wilms Tumor. The same cancer she had last winter.</span><br />
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<span style="font-family: "verdana" , sans-serif; font-size: large;">So, now we will put back surgery on hold again, and we will yet again conquer this ugly thing known as cancer. Unfortunately there is no getting out of chemo this time. So, this week we will meet with Emmie's oncology team to answer any questions she has, or we have. Next week Emmie will get a port placed in her chest, and the following week she will start getting chemo for a Wilms Tumor.</span><br />
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<span style="font-family: "verdana" , sans-serif; font-size: large;">There is no other way to put it.... Cancer Sucks!!!</span><br />
<span style="font-family: "verdana" , sans-serif; font-size: large;">I hate this ugly disease. It has taken so many people from my life, and now I have to watch my baby girl endure something no one should have to do, but especially not a child. Emmie is such a fighter though. She inspires me every day. She is stronger than most adults, and she will persevere through this battle. She will come out on top, and she will beat cancer! She is my super hero! When she said she wanted to be wonder woman for Halloween, I thought, wow how perfect! She really is a wonder!</span><br />
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<span style="font-family: "verdana" , sans-serif; font-size: large;">There are still so many pieces to this puzzle. The doctors are still discussing neurofibromatosis. We have gone through some genitic testing, which came back negative. We have had a pathology report from MOTTS that came back positive. We have had a pathology report from Riley come back negative. So, the MRI of her brain was to look for signs of it in her brain. They did find one neurofibroma in her brain (at least that's what they think it is) but they did not find the other markings they were looking for. So the saga continues.</span><br />
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<span style="font-family: "verdana" , sans-serif; font-size: large;">One thing is for sure. Emmie is unique. She is not a cut and dry case. Even with the tumor on her spleen, the doctors are baffled by it. They have never seen a Wilms Tumor on the spleen before. They can't find it in any of the medical journals. The urologist told us that he has removed hundreds of spleens, but never for a tumor! This girl is going in medical journals for all kinds of things! </span><br />
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<span style="font-family: "verdana" , sans-serif; font-size: large;">I am constantly reminded of this passage when I look at Emmie! </span><br />
<span style="font-family: "verdana" , sans-serif; font-size: medium;"> Psalms 139:13-16 For you created my inmost being; you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. My frame was not hidden from you when I was made in the secret place, when I was woven togeher in the depths of the earth. Your eyes saw my unformed body; all the days ordained for me were written in your book before one of them came to be.</span><br />
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<span style="font-family: "verdana" , sans-serif; font-size: large;">Please continue to pray for us and Emmie. Your thoughts, prayers and words of encouragement keep us going during this long and sometimes difficult road.</span><br />
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<span style="font-family: "verdana" , sans-serif; font-size: large;">Thank you!!! Tracy (Emmie's mom)</span>Brooks Family Red Thread Journieshttp://www.blogger.com/profile/11145492897290327969noreply@blogger.com1tag:blogger.com,1999:blog-5694947744839164544.post-45151722417551751792017-08-12T22:27:00.002-04:002017-08-12T22:27:15.423-04:00You've got to know where you've been to know how far you've come<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjw1cqag92mleSJwt21nRIpKtxMfGsGkOUtAjCoveyVgd6ua-0GoFbdIootPG9LPKENsxpVA6d50wDzZMryLy7YYPnGvRKz_jRSFLBT1rrXxyOjUSKk0naZ8RWbcPYL2kqBUC_rQN2C_A/s1600/IMG_4029.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1067" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjw1cqag92mleSJwt21nRIpKtxMfGsGkOUtAjCoveyVgd6ua-0GoFbdIootPG9LPKENsxpVA6d50wDzZMryLy7YYPnGvRKz_jRSFLBT1rrXxyOjUSKk0naZ8RWbcPYL2kqBUC_rQN2C_A/s320/IMG_4029.jpg" width="213" /></a></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Sometimes you have to know where you've been to know just how far you've come. Tonight I ran across these papers. I keep them in a clay jar that I have recipes in, so every now and then, I see them in there and I pull them out to look at. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">The first one was printed out by Emmie's nurse on the heart floor in March of 2010. I can still remember that day like it was yesterday. I remember looking at that piece of paper and lots of thoughts running through my head, I didn't say anything out loud, just stared at it. I was the mom that couldn't remember to give my kid a vitamin. When they were sick and needed antibiotics, I would forget to give it to them! I'm staring at this med list, knowing my daughters life depended on me being able to follow it to a T! The pit in my stomach was indescribable. How was I going to do this? I desperately wanted out of that hospital, I wanted my life to go back to normal, I anted Emmie's life to go back to normal. But I didn't think I could do it, I wasn't sure I could handle this, maybe the hospital was the best place for her. Those thoughts of doubt that creeped in, I know was Satan. But in the quiet moments I could hear the voice of my Lord, telling me to be still and know that I am God. He gave me this child, and he would give me the strength to care for her the way she needed to be cared for.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Fast forward 7 years! If only I knew then what I know now! Normal? What is that anyway? HA! We found a new normal, one that involved lots of trips to Riley, and now MOTTS. A normal that included lots of medication, a back brace, surgeries, tests, scans, ultrasounds, xrays, MRI's. The latest also includes oncology appointments, and cancer scans. But I'm reminded every day of how unique Emmie really is, and how God knitted her together in such a fabulous way that no one can predict what will happen next....... or what she will do next, much less what she will say next!</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Emmie is doing fabulous! She is cancer free!! She has not had to do chemo or radiation. She is getting scans every 3 months, and as long as those remain clear, she will not have to do treatments. She is currently off ALL medication!!! That is the most amazing thing ever! It was a day I never thought would happen! We were all so thrilled for her! </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">She is seeing her back doctor for scoliosis. It has gotten worse, she is getting fitted for a new brace, and having an MRI of her back in a few weeks. We will also see the neurosurgeon again about tether cord surgery, which will hopefully happen in November. After that, she will need one more back surgery to correct the curve in her back, and then hopefully we will be all done with surgeries!</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">She continues to have check-ups with cardiology and nephrology. All seems to be going fine with her kidneys and heart. Her aortic stent will need adjusted again, and that is something that will continue to be adjusted as she grows.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">She had her 6 month post op check up at MOTTS a few weeks ago and they were very pleased with all of her progress! She was given the all clear by her vascular surgeon! Praise God!</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">All in all, things are great! Will she continue to need doctor visits and surgeries, yes, but when I look back at just how far this little girl has come, I'm OK with where we are. She is my warrior princess! She amazes me every day!!!</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Thank you for following us on this journey! And thank you for the support and prayers!</span><br />
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<br />Brooks Family Red Thread Journieshttp://www.blogger.com/profile/11145492897290327969noreply@blogger.com0tag:blogger.com,1999:blog-5694947744839164544.post-19267995765570680192017-02-04T23:14:00.004-05:002017-02-04T23:14:46.100-05:007 years after the first surgery....<div class="separator" style="clear: both; text-align: center;">
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<span style="font-size: large;">This is what I wrote last year on this day. It is now 7 years.</span></div>
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<span style="font-size: large;">February 4th</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">7 years ago today at 7:30am, I handed Emmie (my 12 month old baby) to a nurse, watched them walk away, and balled my eyes out! That was by far one of the hardest and most challenging days of my life. I had no idea that we were stepping into a new world, one that comes with lots of ups and downs, medications, dr appointments, blood pressure checks, blood drawls and procedures. I thought Emmie was having a one-time "fix", and within a few weeks, everything would be back to "nor<span class="text_exposed_show" style="display: inline;">mal". (What is normal anyway??)</span></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">2-4-10, was just the beginning of a lifetime journey for Emmie and our family. As I look at my posts from that day, it was clear that things didn't go as planned from the beginning. Things didn't go as I had planned, or the doctors had planned, but they did go as God had planned. I have never felt more comforted, more held or more peace from God than I did on that day and the days to come. That doesn't mean I'm ok with what has happened and continues to happen to my baby girl, but I'm at peace with it. I hate the struggles in her life. I hate the medication that she takes, I hate the continual dr appointments and surgeries, but I don't hate God. He made her this way for a reason, and I trust in that. He loves her more than I do, and I trust in that.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">2-4-10 was also the day Elise was born. On the other side of the world, in a remote area of China, called Poyang, Elise was born. While I was stressed out, a crying emotional mess, God was blessing me in ways I didn't know.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">I serve an awesome God! And I trust in his word.</span></div>
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<span style="font-size: large;"><span style="color: #1d2129; font-family: inherit;">Just when I think I'm </span><span style="color: #1d2129; font-family: Helvetica Neue, Helvetica, Arial, sans-serif;">beginning</span><span style="color: #1d2129; font-family: inherit;"> to get a handle on things, we get another curve ball. Even looking at what I wrote last year, I realize how much has changed. Last year, we didn't know Emmie was going at have a 10 hour surgery in Michigan. We didn't know she was going to be diagnosed with cancer. We didn't know just how vast her renal arteries, aorta and kidney deformities were. It still makes my head spin when I really think about everything that has happened in the last year. </span></span></div>
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<span style="font-size: large;"><span style="color: #1d2129;"><span style="font-family: inherit;">But one thing remains the same. I still believe and trust in God. We trust Emmie in his care. I truly believe he lead us to those doctors in Michigan, and they quite possibly saved her life, or at the very least altered the path of her future. She has a bright future ahead. Does she require more surgeries? Yes, at least 1 and maybe 2 for her back. She will also possibly have her aortic stent adjusted, and possibly a new one </span>inserted when she has reached her adult height. She still requires lots of doctor visits and lots of monitoring, but she only requires ONE medication!!! God has brought her and us again through some very dark and scary times. And I felt the same way during this surgery and recovery as I did 7 years ago. I have never felt more comforted, held and at peace than I did during those 2 weeks. I'm still not ok with it. I still do not like it, but I am at peace with it, and I do not hate God for making her this way. Time will tell, but I know God is molding her into something great, and all of this medical stuff has something to do with it.<span style="font-family: inherit;"> </span></span></span></div>
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<span style="color: #1d2129; font-size: large;">Every time</span><span style="font-size: large;"><span style="color: #1d2129;"><span style="font-family: inherit;"> I look at the miracles of Emmie and Elise's lives, I am reminded of God's hand in my life. He blessed us with this beautiful baby girl on the other side of the world, and it was the very day we were </span>beginning<span style="font-family: inherit;"> this life long journey with my other beautiful baby girl. Only God can orchestrate such an amazing masterpiece. You can't make this stuff up ,and you certainly can't plan it yourself!</span></span></span></div>
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<span style="font-size: large;"><span style="color: #1d2129;"><span style="font-family: inherit;">My updates from February 4th 2010....</span></span></span></div>
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Brooks Family Red Thread Journieshttp://www.blogger.com/profile/11145492897290327969noreply@blogger.com0tag:blogger.com,1999:blog-5694947744839164544.post-91832155198249753072017-01-28T17:31:00.001-05:002017-01-28T17:34:21.331-05:002 Months Post Op and So Much Has Happened!<span style="font-size: large;">Today is January 28, 2017. We are exactly 2 months out from Emmie's major vascular surgery, with aortic patch, renal reconstruction and nephrectomy. So much has happened in the last two months. At times it feels like a roller coaster, so many ups and downs! Well let me tell you, I'm ready to get off the ride!</span><br />
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<span style="font-size: large;">The biggest and most exciting good news we have is that Emmie has not started chemo!! We sat down with her oncology doctors the first week of January, fully prepared to hear the details of her chemo regimen. Instead we heard such amazing news. Truly an answer to prayer. "Emmie does not need chemo right now!" It seems that after reviewing Emmie's case in much detail, which included a meeting of the minds (where the entire oncology team sets down to discuss difficult cases, this is not the first time Emmie has been the topic of one of these meetings, and not the first time she has been called a "difficult case"), looking back through Emmie's scans that go all the way back to February 2010, and sending her records & pathology reports to a Wilms tumor expert in D.C., the conclusion was this.......</span><br />
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<span style="font-size: large;">Emmie's Wilms tumor has likely been slowly growing on her left kidney since the age of one. In 6 years it had only grown to the size of a baseball, and never spread outside of that one tumor. We believe that God protected our daughter in ways only he can do. That portion of her kidney received very little blood due to the tiny thread like artery that was feeding it. Lack of blood flow, meant lack of growth. It also is what kept doctors from suspecting the "suspicious" looking upper pole was a tumor because her blood work never showed the typical signs they look for when cancer, or an infection, is present in the body. Wilms tumors are also typically diagnosed between age 2 and 4, and they are almost never seen past the age of 8. Given all of this info, the oncology doctors decided not to start chemo right away. We are instead, scanning Emmie every 3 months for the next 2 years. If something shows up, we will start chemo and radiation immediately. At the 2 year mark, as long as nothing has showed up in her scans, we will scan every 6 months until she has had 5 years of clear scans.</span><br />
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<span style="font-size: large;">Its hard to put into words the feeling of joy I had when I found all of this out. It's also hard to put into words the gravity and weight I felt when I thought I was going to put my daughter through chemo. These are emotions a mother doesn't prepare for. You aren't given a manual about babies and kids when they are born, and if you were it certainly wouldn't include a chapter on "how to handle EVERYTHING when your child gets cancer" because you just aren't supposed to have to do this. But here we are, killing it!</span><br />
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<span style="font-size: large;">In other news with Emmie.....</span><br />
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<span style="font-size: large;">Her blood pressure continues to stay at a normal level, in fact lower than it used to be! She's averaging 97/54. We used to try to keep her around 110/70 and that was on 6 medications. Now she takes 1 BP med, and it is 1/2 the dose she used to take. We are hopeful that at her next appointment with her nephrologist, they will let her come off the med and see if it stays under 110.</span><br />
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<span style="font-size: large;">Her blood clot is gone! YIPPEE!!! No more twice a day shots!</span><br />
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<span style="font-size: large;">The renal stent that was placed during surgery was removed a week ago. She did fabulous during that procedure!</span><br />
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<span style="font-size: large;">Her iron is low, which didn't surprise me. She did this after her first heart surgery too. She has a tendency to not eat a lot but drink a lot of milk. Too much milk and not enough food causes the milk to absorb the iron. So, she's taking an iron supplement, which is helping a lot with her energy levels. We are hoping her body will reset itself by April and she will come off the iron then.</span><br />
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<span style="font-size: large;">Emmie went back to school! She made it through a full week of school this week! YAY! She's still on a lot of physical restrictions. She's not allowed on the playground, and she can't do PE class. But over all, she is doing really well! And I think she was even happy to be back in school! (If you know Emmie, you know she's a home body and wants to be home schooled! However, she missed her friends!)</span><br />
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<span style="font-size: large;">Going forward, Emmie will continue to be seen by oncology for 5 years. We are praying for clean scans for 5 years! She will continue to have nephrology and cardiology checks every 3-6 months. She will also follow up with her surgeons in Michigan at the 6 month mark, and the 1 year mark.</span><br />
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<span style="font-size: large;">The next major item up for Emmie is having the tether cord surgery, which will hopefully correct some of the scoliosis. That will probably take place in the fall. We have also started the genetic testing required to find out if Emmie has neurofibromatosis. If she does in fact have this, then there will be additional doctors and scanning done to check for other tumors. However, typically with NF the tumors are benign.</span><br />
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<span style="font-size: large;">Even though I would like off the roller coaster ride, I know this ride is far from over. Emmie has a life time of ups and downs medically, and I will never leave her to ride alone. Just as God will not leave either one of us. Deuteronomy 31:6 Be strong and courageous. Do not be afraid or terrified of them, for the Lord your God goes with you; he will never leave you nor forsake you.</span><br />
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<span style="font-size: large;">Thank you for reading, but more importantly thank you for the overwhelming support! We have had so many people bring food, help with kids, help financially, and praying for us, the support has really been a testament to God's people working together as the body, hand and feet of Christ. Thank you just doesn't even feel like enough! Please continue to pray for us as we move forward through all of this medical stuff! Pray for clear scans and answers for Emmie.</span><br />
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Emmie at Riley Hospital the day we found out that she would not be doing chemo!</div>
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Emmie with her daddy and sister, Elise, going to the Princess Ball</div>
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(AKA, daddy-daughter dance)</div>
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Emmie turned 8!!!! The magic number for Wilms tumors to not return!</div>
Brooks Family Red Thread Journieshttp://www.blogger.com/profile/11145492897290327969noreply@blogger.com2tag:blogger.com,1999:blog-5694947744839164544.post-7732019577713148512016-12-17T01:14:00.002-05:002017-01-28T16:24:10.821-05:00Where we are right now.....Some updates on Emmie......<br />
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We've been home from the hospital for 9 days now and Emmie is 2 weeks, 4 days out from surgery. She is such a trooper. Her ability to work through her pain and overcome obstacles in her way is amazing to watch. It's also sometimes painful to watch. As her mommy, I want to do it all for her, and I can't.<br />
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Her aortic patch looks great! Dr. Coleman made her aorta the size it needs to be when she's fully grown, so she will grow into it, and not need to have it redone EVER!<br />
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Her right renal bypass looks good too. There's just this one area of the lower artery that looks like there is a blood clot. It's effecting the flow of blood to the lower portion of her right renal artery. So, she had to be put on a blood thinner to prevent the clot from getting bigger, and allow her body to absorb it.<br />
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Emmie had a check-up with her nephrologist (kidney doctor) last Friday. They were super impressed with her recovery. They were also very pleased with the fact that she's now only on one blood pressure medication and it's half the dose it used to be. We are monitoring her blood pressure and checking in with the nephrology doctor via email weekly. They do think its possible that after the blood clot in one of her renal arteries dissolves, her BP numbers could improve, maybe even enough to come off of all BP meds.<br />
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Here's where we are right now......<br />
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Emmie's blood thinner medication is an injection. This means Tom & I have to give Em a shot twice a day. She's handling this really well! Probably better than me or her dad! Thank goodness the needles are super tiny, and her medication does is very small, so it's a quick shot!<br />
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The word cancer and your child's name in the same sentence is something that shakes you to your core. It's everyone's worst nightmare. And its happening to my daughter. I don't even really know how to describe the feeling, and it's not something I would wish on anyone. We've had a few weeks to let this information sink in, and I can't say it's gotten any easier. I just about had an anxiety attack/nervous breakdown on Monday when we went to Riley Oncology for the first time. We had our first appointment with the oncology doctors. They are pretty sure she's stage 1, since her lymph node tested negative for the cancer cells. This will be confirmed on January 3rd when she has a CT scan of her chest. Emmie has what is called a Wilms tumor. On January 10th, Emmie will have a port placed in her chest, and she will receive her first round of chemo.<br />
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Chemo will be 18 weeks long. We will have to go to Riley once a week for an infusion. The regimen is pretty light compared to some. We will need to be there for an hour week 1, then week 2 & 3 will only take about 15 minutes. It starts over on week 4, and the 3 week cycles will continue for 18 weeks, or 6 cycles. She will finish chemo in May, and we will be having a very big PARTY!!!!<br />
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While non of us are happy about this diagnosis. We are very happy about a few things. One, we are so grateful that God intervened and allowed us to find this cancer before it spread. Two, we are so very happy that it is a "favorable" type of kidney cancer, and that she has a very high chance of being cured and going on to live a full life. It has about a 95% curability rate! Three, we are ever so grateful that she is doing so well!<br />
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Her recovery has been somewhat miraculous. She was wowing several doctors and surgeons in Michigan. One day while Emmie was still in ICU (the day before they moved her out) I asked the ICU team a question (can't even remember what I asked) But Dr. Tim looked at me and said "Well, we don't really know because Emmie isn't following the rules about how this is supposed to go." I said "Welcome to my world! She's been like that since birth!" He laughed and said "Good luck when she's a teenager!" This same doctor came into Emmie's room multiple times to talk to me. He was always amazed at Emmie's quick progress. The day we left the hospital, Emmie's surgeon, Dr. Coleman, looked at Em and said "Emmie, can I tell you something? You are the strongest little girl I've ever met, and I've operated on lots of little girls and boys, but you are the toughest, strongest one. I have no doubt that there are big things in store for you."<br />
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The journey has been long, and at times hard,and it's not over! But I look at the beautiful little girl sleeping beside me and I can't help but think God is cultivating her for something bigger than I ever could have imagined when I first held that little baby girl almost 8 years ago. I think he's cultivating me too. I'm not the same person I was before Emmie's first heart surgery. I'm not the same mom. I'm not the same friend, or wife, or sister. Each procedure, test, stent adjustment, surgery, diagnosis, medication change, doctor appointment, shot, blood draw, they all change me. Some of the change is for the good, but I know some of it has jaded me. It's a daily struggle to stay positive and keep my eyes and heart focused on the things that are important. I know that God has a plan for Emmie and me.<br />
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"For I know the plans I have for you" declares the Lord, "Plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11<br />
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I know this goes without saying, but please continue to pray us through this journey. Your continued support and prayers have gotten us this far. It is overwhelming to see the hands and feet of Christ at work though our friends and family and church family.<br />
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If you'd like to help us with the ongoing medical bills, a go fund me page was set up by Emmie's grandparents.<br />
https://www.gofundme.com/emmie-joy-brooks-medical-fundBrooks Family Red Thread Journieshttp://www.blogger.com/profile/11145492897290327969noreply@blogger.com0tag:blogger.com,1999:blog-5694947744839164544.post-89894774834352069752016-12-03T22:29:00.000-05:002016-12-03T22:38:40.441-05:00December 3rd 2016 Post-Op Day 5<span style="font-family: "arial" , "helvetica" , sans-serif;">My last update was Tuesday, the day after Emmie's big surgery. Emmie's surgery went great. All three surgeons were beyond thrilled with the outcomes from the surgery. They have basically attained the impossible by giving Emmie a somewhat "normal' vascular system.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Emmie continues to amaze the doctors, staff and her parents! She is the toughest little girl around. All the doctors have called her a rock star. She is so brave in the face of such huge obstacles.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">From the beginning we were told that it would take several days for her digestive system to "wake up" because they cut the blood supply to several organs during surgery, they also move things around to get to what they need. The digestive system, particularly the pancreas, doesn't like this. What we didn't know is that the average time spent without food or water for these kids is about 7-10 days, and that pretty much none of them eat before that 7 day mark, and some kids are stuck in the hospital for a month or more waiting for their digestive system to wake up. We were also told to expect her BP to go back up and that she would need an IV blood pressure medicine within about 24 hours after surgery. We were told to expect her to spend a week in PICU.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">What actually happened for Emmie wasn't anything like the events described above. The doctors are calling it amazing, incredible and unheard of. I'm calling it the power of prayer!!! Emmie came off the vent about 4 hours sooner than anticipated. From the beginning the doctors were impressed with her numbers. All the things they were checking such as creatin, BUN, potassium etc. All numbers were consistently improving with every blood drawl. Her BP stayed in the normal range day after day making the doctors eat their own words when she never did go on an IV blood pressure med. She has now started an oral BP med, and will go home on 1 med that is 1 time a day (compared to the 6 meds 2 times a day that she did before surgery). But the most amazing thing was that Emmie started having "digestive' sounds on Thursday, only 3 days after surgery. She had a bowel movement on Thursday afternoon too! So her surgeon said ice chips and gum on Thursday were fine. On Friday she got to start a liquid diet! All the ICU doctors were amazed. She's 4 day's post op and she's on a liquid diet! One ICU doctor told me "Emmie's not read the rule books about how this is supposed to go! She's doing everything ahead of schedule!" Her nurse on Thursday also told us that she has NEVER had a "re-vasc" (what they call kids who have vascular surgery similar to Em's) kid ask to get out of bed. She says these kids are in so much pain they NEVER want to move. Emmie was asking to get out of bed!!</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Through all of this, we saw God's hand on our daughter, and on us. We felt the power of prayer. Things I was asking people to specifically pray for, and things I was specifically praying for were being answered. Was it difficult? ABSOLUTELY!! I cried, Emmie cried, Tom cried. It was hard. It's still hard. </span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">In my last post I said "now we start the next phase of hard. Because, really every phase of this has been hard." What I didn't know, was that there was going to be a whole new level of hard. We were completely in shock when our team of doctors and surgeons all came into Emmie's room together on Wednesday evening at 5:30pm and relayed the most difficult news I've ever heard. "The mass we removed from Emmie's kidney was a malignant tumor called a Wilms tumor. It is a form of cancer......." To be honest, I don't think I heard much else. I heard malignant and cancer, and I heard my child's name in the same sentence. Every parents worst nightmare. The doctors were truly just as shocked as we were. No one saw that coming.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Tom and I took about 24 hours to let this new information process in our brains. We cried a lot, and we prayed a lot. We told only immediate family and our pastor and a few close church members. Once we knew when we were meeting with the oncologist, we asked for prayer from the church elders. Waiting on that meeting seemed like an eternity. In the hours leading up to it, I became more anxious. I wasn't sure I wanted to hear any of it, yet I knew I had to. The oncologist gave us some positive news though, at least as positive as it can be after receiving a cancer diagnosis. Emmie has what is called a "favorable" form of kidney cancer. The believe they got all of the cancer by removing the upper pole of her left kidney, however scans will be necessary to ensure that is the case. The vascular surgeon told us that she looked, rubbed and felt each of Emmie's organs to make sure they all looked and felt normal. She did not see anything alarming. Everything looked just as it should. The urologist is quite confident that he got the entire tumor and left nothing. He also took a biopsy of a lymph-node while in surgery, which came back negative! They believe she is Stage 1 or Stage 2, which has a 95% cure rate. If they found spots in her lungs, which they do not think is the case, she would be considered a Stage 4. Even at Stage 4, this type of cancer has an 89% cure rate. Regardless of the Stage they put her at, and even if her scans prove that there is no cancer anywhere else in her body, she will still go through 6 months of chemotherapy. While I can't stand the thought of it, I'm happy that what she has is treatable and curable. And in the last several days I've heard of multiple success stories of kids who were diagnosed, been cancer free ever since and are now in their 20's. Even her surgeon told us yesterday that we are now a part of her family. She want's pictures and updates of Emmie doing sports as a teenager! She said I have no doubt that Emmie will go on to do great things as an adult. </span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Another way God has showed himself to us in these hard and stormy waters is that quite possibly Emmie's deformities saved her life. Wilms tumor is a very slow growing cancer, and it's quite possible that it has been there since she was 4 years old. At the age of 4, we had scans done of her kidneys and renal arteries, in the hopes that they could stent her renal arteries. They could not be stented, but those scans revealed a deformed upper pole left kidney. The urologist actually used the term bumpy and cauliflower like. They thought it was just deformed tissue, which is also what the surgeon's at MOTT's thought until they opened her up. It has grown since she was 4 years old, but not that much. The doctors say it's possible that the deformed tissue and lack of blood flow to the kidney could have prevented it from growing. I think it was God's unique way of protecting Emmie's body.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">I have said all along that I felt God brought us here for a reason. Now we know undoubtedly so! I thought we were here to get Emmie off meds, which does seem to be happening, but now I know we are here to find a cancer that might not have otherwise been found. The surgeon who asked to pray with us before surgery was also the surgeon who had to tell us Emmie had cancer. He prayed with us after telling us that horrible news. Our night nurse that night was also a christian who goes to church with the surgeon. He also prayed with me in the middle of the night. God has seen me at my darkest worst hour, and he lifted me up in the midst of my pain. He surrounded me with complete strangers that were able to console and pray with me.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Obviously the next 6 months or so aren't really going to be any easier on us or Emmie than the last few months leading up to this point. In fact, I'd say we are entering something even more difficult than the phase we are leaving, however, I know my God will not leave me or forsake me. He will not leave Emmie either. We will get through this together and with the support of all of you.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">As for right now, Emmie is doing better than expected. We moved to the renal floor yesterday. (3 days ahead of schedule) She's been up and moving around today, doing crafts with her sister and cousins. She's eating! Not much, but she is eating. Her pain has been pretty well managed. We are transitioning her now to oral pain meds and weening her off the IV meds. We will still be here for at least another 5-7 days. She will have some imaging studies on Monday to ensure the surgery was a success, so we will have new images to compare to the ones we got in October. I'm excited to see what that will look like. Emmie is enjoying all the gifts and surprised that have been brought to her.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Please continue to pray for us. We are entering a new phase of hard. As we get more info about the stage of cancer, treatment plan & timing we will pass it on! Thank you for your continued love, support and prayers!</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">I can do all things through Christ which strengthens me. Philippians 4:13</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>Brooks Family Red Thread Journieshttp://www.blogger.com/profile/11145492897290327969noreply@blogger.com0tag:blogger.com,1999:blog-5694947744839164544.post-88536493212820514212016-11-29T16:29:00.001-05:002016-11-29T17:21:32.183-05:00November 29, 2016 Post-Op Day 1<span style="font-family: "arial" , "helvetica" , sans-serif;">So A LOT has happened in the last 48 hours......</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;"> We checked into CS MOTT Children's Hospital around 9:30pm on Sunday night. I think we got about 2 hours of sleep on Sunday night. Emmie was determined to eat right up until midnight, so at 11:00pm we are eating mac-n-cheese, yogurt, pretzels, apples, chocolate milk. The girl was literally counting down the minutes! At midnight they came in and did blood work. Around 2:30am they came in to put her IV in. And we had to be up at 5:30am.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Monday morning at 7:00am they took us down to the surgery pre-op. We met with all the surgeons and anesthesia team. One really cool thing that happened, was when we met Dr. Parks, the urologist responsible for her partial nephrectomy. He said to us "I have a habit of praying for my patients before surgery, would it be ok if I prayed for your daughter?" We have never had a surgeon ask us that. Of course we said yes, and we prayed with Dr. Parks over our daughter. God is good all the time and he places people in our paths. I firmly believe that God brought us here to this team of surgeons.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Surgery was LONG!!! She was taken back around 7:45am. That was hard for me. The separation is always hard. I start to have all these second thoughts, like what did I just do to my kid! I know that's Satan creeping in. We received updates throughout the day via text and phone calls. Everything seemed to be going according to plan.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Around 4:45 we received notice that one of the vascular surgeons was ready to update us and we needed to return to surgery. We consulted with Dr. Eliason. Let me say, it was one of the most uplifting post-op consults we have ever had! He said <span style="background-color: white; color: #1d2129; line-height: 19.32px;">everything up to this point went</span></span><span style="background-color: white; color: #1d2129; font-family: "arial" , "helvetica" , sans-serif; line-height: 19.32px;"> better than planned! The vascular part is done. Her aortic patch went well. Her right renal reconstruction went well too! They were able to construct a normal sized artery on the right side, which is amazing! They made her aorta the size of a teenager so she will grow into it, so no need to go back in and patch her aorta again. Her pressures were good the entire time, no complications what so ever! He even thinks it's realistic for her to be medication free within 6 weeks! Praise God!!!</span><br />
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<span style="background-color: white;"><span style="color: #1d2129; font-family: "arial" , "helvetica" , sans-serif;"><span style="line-height: 19.32px;">Around 6pm, Dr Parks showed up in the waiting area to talk to us. His part, which was the last phase of the 3 phase surgery was complete, which meant surgery was done! They were closing her up. He said Emmie did great! And he was really glad they decided to take that upper pole out. He said it was a hard cauliflower like mass, the size of a baseball!! It was providing her with no good kidney function, but quite possibly contributing to most of her blood pressure problems. They have sent it off to pathology to see exactly what it was. We told our crowd of family that Dr. Parks was the one who prayed with us before surgery. We had a nice conversation with him about his mission work in other countries, and how a few years ago he felt convicted about praying for his patients in the states like he does in other countries. Instead of praying for them in secret, he decided to start asking families if he could pray with them. The amazing thing is, he's never had someone tell him no. God is doing amazing things with Dr. Parks and his gifts in medicine.</span></span></span><br />
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<span style="background-color: white;"><span style="color: #1d2129; font-family: "arial" , "helvetica" , sans-serif;"><span style="line-height: 19.32px;">Our final consult of the day was with Dr. Coleman. That lady looked exhausted. She was by Emmie's side doing very tedious work for hours and hours. She was there in the beginning, and she was the one who closed her up. A long day for her. She is saving lives and I am so grateful she was able to help my baby. I can not say enough good things about her. She's so polite, soft spoken, and nothing but good things to say. She was so happy about the outcome of Emmie's surgery. Everything went better than they planned. No complications. I will never be able to thank her enough for her work on Emmie. Because of her, Em could likely be medication free! She will likely live a very normal life with little to no complications from her congenital defects.</span></span></span><br />
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<span style="background-color: white;"><span style="color: #1d2129; font-family: "arial" , "helvetica" , sans-serif;"><span style="line-height: 19.32px;">We were able to see Emmie for the first time around 7:30pm. She was resting peacefully, still intubated, which we were warned about. She looked good, a little swollen, but over all good! Unfortunately, (or maybe not, it's hard to tell) Her feisty personality started showing through! She fought the tubes, tried to extubate herself, bit down on her airway. It was a nightmare. The nurses assured us that this was actually good. Feisty is good, and the fact that she came out of sedation faster than anticipated meant her kidneys were working well.</span></span></span><br />
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<span style="background-color: white;"><span style="color: #1d2129; font-family: "arial" , "helvetica" , sans-serif;"><span style="line-height: 19.32px;">It was a rough night! She woke up several times, each time a little less traumatic than the last. Each time a little more calm than before, but by 2:30am the nurse said it wasn't good to keep sedating her and making her stay on the vent when she was fighting this hard to come off, so she set the process to extubate. At 4am they finally took her off the vent. She was much more content with out that. She was able to talk to us, which was good. She was still very loopy, but rested much more peacefully after that.</span></span></span><br />
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<span style="background-color: white;"><span style="color: #1d2129; font-family: "arial" , "helvetica" , sans-serif;"><span style="line-height: 19.32px;">Now we start the next phase of hard. Because, really every phase of this has been hard! Her digestive system is basically asleep, which is normal. We were told all of this ahead of time. She can not eat or drink until Thursday. We are giving her a little sponge of water to wet her mouth, but that is it. It's really hard for her, and hard on us. The kid was asking for chocolate milk while still on the vent! She was mouthing it to me! ugh! other than asking for me or Tom, chocolate milk was what she wanted! It's like her coffee, and we can't give it to her. So hard. Her pain is being managed well. She is on a morphine drip, and unless they move her, she's ok. It's really hard to see her in pain though, and they have to move her around to keep from getting bed sores. Tough stuff.</span></span></span><br />
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<span style="background-color: white;"><span style="color: #1d2129; font-family: "arial" , "helvetica" , sans-serif;"><span style="line-height: 19.32px;">Please keep praying for us. Pray that God will sustain us during these difficult hours. Pray for Emmie to be peaceful and comforted, and rest easy during the next few days. Pray that she continue to surpass expectations and her digestive system will wake up sooner rather than later!</span></span></span><br />
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<span style="background-color: white;"><span style="color: #1d2129; font-family: "arial" , "helvetica" , sans-serif;"><span style="line-height: 19.32px;">Casting the whole of your care (all your anxieties, all your worries, all your concerns, once and for all) on him, for he cares for you affectionately and cares about you watchfully. (Ps 55:22) 1 Peter 5:7 AMPC</span></span></span><br />
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<span style="background-color: white;"><span style="color: #1d2129; font-family: "arial" , "helvetica" , sans-serif;"><span style="line-height: 19.32px;"><br /></span></span></span>Brooks Family Red Thread Journieshttp://www.blogger.com/profile/11145492897290327969noreply@blogger.com1tag:blogger.com,1999:blog-5694947744839164544.post-54443164954636411372016-11-25T00:22:00.000-05:002016-11-25T00:22:25.776-05:00Thankful HeartsWe have a lot to be thankful for this year. Our family, friends, and church family have gathered around us in a show of support that is truly humbling. God had blessed us with such an amazing support system. I do not feel worthy.<br />
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Our family has rallied around us to be at the hospital with us, Tom's mom is coming all the way from Florida! My aunt is also coming from Florida to stay at our house to care for Blake and Elise. My sister is helping with kids, and helping my aunt learn the routines! My parents plan to drive back and forth to Michigan several times to help us where needed. My brother and sister-in-law have also offered to help where needed and will be at the hospital. Tom's brother and sister offered to drop plans and be here if needed.<br />
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Our church family has been amazing. They have offered so much to us. Our pastor and one other church member will be going to Michigan with us, and bringing the boys back home on Tuesday. Two small groups at church took up love offerings for us, and another small group took the time to write us encouraging words and Bible verses on note cards to help keep us positive throughout the next few weeks. Our small group is providing meals for us when we return from the hospital. We also have a group of people surrounding us on Sunday to pray over our family before we head to Michigan.<br />
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My gym family, and yes they are family too! My training studio is so much more than a job to me. My clients become my friends. I become involved in their lives, and they in mine. They care for me and my family, and I don't know where I'd be without that support. When I first set out to be a personal trainer, it was something I could do while staying home with the girls. I quickly realized that God had more planned for me than just training some people. I never saw myself opening my own studio, I never saw it moving out of my house, and I never imagined it would grow into not only a training studio, but a ministry. Lots of times, I find myself being more than their trainer, I become a counselor, a friend, a shoulder to cry on, someone they can count on to help them out. Well, they have returned the favor in a big way. They took weeks to collaborate gifts for all of my kids, gift cards and gifts for me and Tom as well. It was so sweet, and so unexpected! They also want to do meals when we return from the hospital. And one special lady already made up her "made from scratch" meatballs and marinara and froze several of them for my aunt, or us to use in the next few weeks.<br />
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There are countless others who have offered up support. Past training clients who are still friends, high school class mates, family friends who have all dropped off gifts, or sent them via amazon!! But its more than the gifts, while they are very nice and will truly help alleviate the financial burden, and will help Emmie recover by giving her things to entertain her while she's down, it's the outpouring of love on my family. All the kind, encouraging words and the prayers that I know are going up on our behalf because I feel a peace that surpasses all understanding. A peace that only comes from God the Father.<br />
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The next few weeks will test me, Tom & Emmie. We will be tested spiritually, emotionally and physically. The task at hand is no small task, but it is what God is asking us to do. Difficult decisions have already been made for Emmie, and I'm sure there are more to come. I just pray we are doing what is right for Emmie. So please continue to pray for us. Pray on Monday every chance you get, pray every time we pop into your head over the next few weeks and months.<br />
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Surgery is Monday. 6:30am check in time, 7:30am start time, which probably means they'll take her from us around 7:00am, which will be the hardest part for me. Then 6 to 10 hours of surgery. We will get hourly updates, and I'll update on facebook and text message. I'll blog at the end of the day, hopefully, as long as I have time and Emmie is sleeping peacefully.<br />
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Thank you just doesn't seem like enough. Thank you for reading, praying and supporting us!!<br />
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Psalms 28:7 The Lord is my strength and my shield; my heart trusts in him, and he helps me. My heart leaps for joy, and with my song I praise him.Brooks Family Red Thread Journieshttp://www.blogger.com/profile/11145492897290327969noreply@blogger.com0tag:blogger.com,1999:blog-5694947744839164544.post-61344671339476115582016-10-27T22:23:00.000-04:002016-10-27T22:23:34.979-04:00Surgery is set!!!<div style="text-align: center;">
Emmie's surgery is set for Monday, November 28th. </div>
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We talked to the surgeon, Dr. Coleman, this week. The test results are in, and they were able to get all the information they needed from those tests. Here's what they found: both kidneys are working evenly and the rennin is coming from both kidneys. However, they do believe that most of the rennin on the left side is coming from the upper pole, which is the deformed portion that is being fed by the tiny string-like artery.</div>
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Dr. Coleman and her surgical partner, Dr. Eliason, set down with a pediatric urologist, Dr. Park, to discuss the findings of the tests. Dr. Park is recommending that we remove the upper pole of her left kidney. It is functioning, just not very well, it's deformed, they are not sure it's all there, it's getting very little blood flow and it's secreting lots of rennin. They also feel like the lower left is functioning very well and getting great blood flow, so they do not think anything else needs to be done to her left side. </div>
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So her surgery will take 6 to 10 hours. They will do the aortic patch and the reconstruction of the renal arteries on the right side, then remove the upper pole of the left kidney. If you need a refresher on what they are doing see my previous blog post where I explained in detail with pictures what was happening. </div>
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We now have a 3rd surgeon involved in Emmie's case, Dr Park, who will remove the portion of kidney that needs to be taken out, and Dr. Coleman & Dr. Eliason will do the rest of the surgery. While the doctors are quite confident in the prognosis for Emmie, they do not believe she will come off of all her meds. They do think they can get her down to 2 meds though, and we would be very happy with that! She now takes 6 meds, and at one point in her life she was on 9. So 2 sounds great. However, we also know the Great Physician can completely heal her body, and how awesome would it be to see her medication free!</div>
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We ask that you continue to pray for us and Emmie as surgery approaches. It's nice to have a date and be able to plan, but it's also stressful and the anxiety tends to build as we get closer. We ask that you pray for these 3 surgeons. That God will be their guide for steady hands and minds during this long surgery. Please continue to pray for our other children, especially Elise. She's too young to really understand. I am hopeful that she will "get it" when she gets to visit her sister in the hospital. There are lots of details to work out for kids, pets, jobs, finances. Just pray for all those things to work out smoothly.</div>
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Lots of people have asked how they can help, or if they can get Emmie something. As far as help, we are working on things that we will need. God has already been so good to us in providing just what we need when we need it, but I know things will come up. For Emmie, if you are interested in getting her a gift, let me know. I can give you ideas. We have also put together an amazon wish list of things she likes, and can do while she isn't allowed to move around much! She will be in the hospital for 2 weeks and out of school for 6 weeks. Once back at school, she will not be allowed to go to gym class or recess for several months. So, lots of down time for her! I can email the wish list to anyone interested, but please do not feel obligated in any way. </div>
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Thank you for reading, and thank you for praying us through this difficult journey!!!</div>
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I've been co-leading a GodFit group at our church since August. A wonderful group of ladies, working through a study on getting our bodies ready for service. It's all about being spiritually fit, mentally fit and physically fit to serve. When I agreed to help lead this study, I had no idea any of this with Emmie was going to happen. But the week we were at MOTT for testing, I was reading week 4 of the devotion series, and it was titled "Simplicity: faith without worry or distraction". My first thought, was ya right! I'm totally distracted and worried! This isn't good timing! But God knew what was ahead for me when I started reading this book. His timing is always perfect and he knew I'd be setting in a hospital room with my daughter when I was reading it. So, rather than skip it, which I almost did, I read it. Two of the verses in that weeks study really spoke to me.....</div>
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"Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own." Matthew 6:34</div>
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"Cast all your anxiety on him because he cares for you." 1 Peter 5:7</div>
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Here's a little blast from the past for you. Emmie the morning of her very first surgery. February 4, 2010. 12.5 months old. Also, the day Elise was born! That's another "God's timing is always perfect" story I'll have to blog about later!</div>
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And here she is almost 3 weeks later. The first time she got to leave her hospital room. The first time I got to do something somewhat normal with her in 3 weeks, which was simply a ride around the halls of the hospital in that little red car she loved so much! With cords and monitors in the engine compartment, we strolled the halls, and she was so happy!!</div>
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Brooks Family Red Thread Journieshttp://www.blogger.com/profile/11145492897290327969noreply@blogger.com0tag:blogger.com,1999:blog-5694947744839164544.post-83377459327621659712016-10-19T22:24:00.001-04:002016-10-24T15:59:31.452-04:00C.S. MOTT Children's Hospital Part 1 UpdateSo we survived our first trip to C.S. MOTT Children's Hospital in Ann Arbor Michigan. It was actually a really nice hospital, not that I was expecting less, I just didn't know what to expect. The staff was very nice, the nurses were great, they really exceeded my expectations. Every doctor that came in to discuss Emmie was kind, respectful and very knowledgeable.<br />
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Emmie had 2 procedures while we were there. The first was the more serious of the two. She had to be put under, they had to go in with a catheter in both legs and go up into her aorta, then into renal arteries, inject dye and take lots of images to get a clear picture of what was going on. They also took rennin samples from all arteries leaving her kidneys to see which one is secreting this hormone that sends signals to the brain to up the blood flow. If you've ever had one of these cath/angio type of procedures, or know someone who has, the insertion sight for the cath isn't stitched up, they use compression to close the sight, then you have to lay flat for several hours with as little movement as possible to keep the sight closed. When Emmie was waking up from the anesthesia , she started coughing, and reopened on of her cath wounds. They had to reapply pressure to close it again. I wasn't there for this, thank goodness, I might have lost it. Emmie is bruised on one hip from the pressure they had to use. She made it back to the room around noon, and had to lay flat til 5:00pm. Despite them telling me they gave her an extra sedative to help her sleep off the day and stay still, by 3pm she was asking "how much longer?" She also had her finger on the button to move her bed to the seated position every time she asked, and would smile at me when I said "Don't you do it". Then she would touch it just for a split second, just enough to make the motor click on. She definitely still had her spunky attitude, even drugged up! (I really don't know where she gets it!) On day two, she had a nuclear scan to check kidney function, this was a walk in the park compared to day one. She watched cartoons for 30 minutes and it was over.<br />
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The surgeon, Dr Coleman, came and talked to us around noon on Tuesday. Let me just say, that she is fabulous! She is so kind & so knowledgeable. She handed us a packet of information on Emmie, all the images they had collected, all the tests they ran, a CD copy of everything, her business card, her cell phone number. (Really, what doctor hands you their personal cell number?!?!?) She went through step by step what they want to do with Emmie while looking at the printed copies of her imaging.<br />
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Step one: Reconstruct the mid aorta.<br />
There is a significant segment of her mid aorta that is narrowed, they measured a 20mm pressure gradient across the narrowing, which is fairly significant. They want to do an aortic patch to correct this. Basically they will cut open her aorta and patch it to make it wider, essentially making it the same width as the rest of her aorta.<br />
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Step Two: Kidneys and Renal Arteries<br />
Emmie's right kidney is larger than her left. It also sits up higher than where a normal kidney placement would be. Her left kidney is smaller, the top is somewhat deformed, and it sits lower than where a normal kidney would be.<br />
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On the right side, Emmie has two arteries coming off of her aorta to feed the kidney. Typically you have one artery, that branches into two, one feeds top pole, one feeds lower pole. Both of these arteries are narrowed where they attach to the aorta. The surgeons will create a bypass that attaches to the aorta and connects to both arteries and passes over the narrowing.<br />
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The left side presents more of a problem. The left kidney has always been in question, since the very first MRI she had after her first heart surgery when it became clear there was something else wrong. They questioned that left kidney. It just didn't look right, but on a one year old its hard to tell what's going on because the kidney is so small. Now that she's 7, they can see it more clearly. There are 3 arteries branching off of her aorta feeding this very small kidney. The top pole isn't all there, it isn't formed correctly, and is functioning very poorly. It is being fed by a very tiny artery, almost string like. They were able to get a catheter in it and inject dye and see it flowing into the kidney, so they know there is something going on there. The middle is fed by an artery that looks to be fairly normal in size with little to no narrowing. The bottom is also being fed by an artery that looks fairly normal, with little to no narrowing.<br />
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The surgeons want to wait for the results of the kidney function test and the rennin samplings to come back before determining what to do with the left side. If the upper pole, which is badly deformed, is making a lot of the rennin, then they are proposing we take out the upper pole, and leave the lower half in tack, and do nothing with those arteries. So, she would have a partial nephrectomy on the left side. That thought is very scary to me, but if it will help get her down to 1 or 2 meds, and help her live a normal life, then I'm on board.<br />
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Psalm 139:14 I will give thanks unto the Lord, for I am fearfully and wonderfully made:wonderful are they works and my soul knoweth well.<br />
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We will hear from the surgeon next week as to what the results of the tests were, and what they decided to do with the left side. We will also get a definite surgery date. They are struggling to find an open OR that is available the entire day (6 to 10 hour surgery) and that both surgeons are available on that day as well. It could happen anywhere from the Tues before Thanksgiving til the first week of December. We have a tentative date of Nov 29th, but at this point, there is no open OR that day, however both surgeons are available.<br />
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Thank you for all your prayers. We can definitely feel them. We feel comforted knowing so many people are praying for our daughter and us as we walk through this next step on her journey. I felt at peace with the hospital, the surgeons and the nurses. I know God led us here, and I know its the right time. It doesn't make it any easier on my mommy heart. I still struggle with everything she goes through. I want to take it all away, I want to take it on myself. I want to go through this for her. If there was any way to trade places with her, I'd do it in a heart beat.<br />
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It makes me realize though, how much God loves us, to sacrifice his only son for our eternal lives. He traded places with us. Unconditional love. John 3:16 For God so loved the world, that who soever believeth in him, shall not perish, but have ever lasting life.<br />
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Continued specific prayer requests.....<br />
1. That we get a surgery date soon!!!!<br />
2. That the results of the tests are exactly what they are hoping for.<br />
3. Emmie, that she will do well, and her surgery and recovery will be smooth.<br />
4. For me as I still struggle emotionally with all of this.<br />
5. Elise, she's struggling with Emmie's special treatment, at least that's the way she sees it, and its so hard to explain to a 6 year old.<br />
6. Insurance will work out, vacation time for Tom will work out, and that my gym will stay steady even when I'm not there.<br />
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<br />Brooks Family Red Thread Journieshttp://www.blogger.com/profile/11145492897290327969noreply@blogger.com0tag:blogger.com,1999:blog-5694947744839164544.post-46116415813540839172016-10-14T19:41:00.000-04:002016-10-14T19:41:20.114-04:00Back to Reality.... and surgery date<h3>
We had a great little get-a-way this week. Me, the girls and my mom headed to Fort Walton Beach to my aunts house. I can't thank my mom enough for making the trip with me and I can't thank my aunt enough for hosting us. We got to play with our cousins and some friends, enjoy the pools and a lazy river, look for sea shells and build sand castles. Some much needed stress relief for me and Emmie. Unfortunately, we headed back to reality on Thursday. I guess I can't whisk her off to a Caribbean island and pretend she's not sick, because that's what I really want to do. Instead, I was greeted with a large packet of information on MOTT Children's Hospital. It is really happening, ugh! To be honest, my gut reaction was to vomit, and burn it :(</h3>
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<h3>
Emmie will be admitted to MOTT Children's Hospital Sunday. She will undergo a few tests on Sunday & Monday, and should be released on Tuesday. She will have a nuclear test of her kidneys, which shouldn't be a big deal. She doesn't have to go under anesthesia for this. Should take an hour or so. The second test is an angiogram of her renal arteries. This is a little more difficult for her. She will be under anesthesia. It's done in the cath lab. They go in through her leg with a catheter and inject dye into her renal arteries. They want a very clear picture of what they are dealing with in order to decide on the best course of action. She will need to be monitored after this test, so she will stay the night, and we will come home sometime on Tuesday. </h3>
<h3>
<br />Right now her surgery is scheduled for November 29th. (It could possibly change after they see the images of the angiogram) It will be a 6 to 10 hour surgery. The first few days after surgery will be rough for her, and for me. She will be in a lot of pain, and I won't be able to take it away. The recovery should get a little easier as each day passes, but it will be long and hard.</h3>
<h3>
<br />Specific prayer requests we have right now.....</h3>
<h3>
<br />1. That the testing this Monday will go well, no complications, and Emmie will not be too anxious.<br />2. That we will be able to work things out with our insurance. Right now they are telling us the hospital is out of network, which means that 30% of the bill will fall on us.<br />3. That my anxiety level will come down a little. I've not been this emotional about surgeries and procedures with her for a very long time. I know it's due to the difficulty of the surgery and the recovery, plus its a new hospital, new team of doctors, new everything. We've never done a surgery like this, I have no idea what to expect from Emmie afterwards. I had grown "comfortable" so to speak with Riley, our team of doctors and what to expect out of Emmie, this feels so foreign to me and I'm really struggling with it. As I struggled this evening even writing this post. I began searching for verses of comfort. 1 Peter 5: 6-8 says "<span class="text 1Pet-5-6" id="en-ESV-30455" style="-webkit-font-smoothing: antialiased; background-color: white; box-sizing: border-box; font-family: "Helvetica Neue", Verdana, Helvetica, Arial, sans-serif; font-size: 16px; line-height: 24px;">Humble yourselves, therefore, under the mighty hand of God so that at the proper time he may exalt you,</span><span style="background-color: white; font-family: "Helvetica Neue", Verdana, Helvetica, Arial, sans-serif; font-size: 16px; line-height: 24px;"> </span><span class="text 1Pet-5-7" id="en-ESV-30456" style="-webkit-font-smoothing: antialiased; background-color: white; box-sizing: border-box; font-family: "Helvetica Neue", Verdana, Helvetica, Arial, sans-serif; font-size: 16px; line-height: 24px;"><span class="versenum" style="box-sizing: border-box; font-family: Arial; font-size: 12px; line-height: 22px; position: relative; top: 0px; vertical-align: top;">7 </span><span class="crossreference" data-cr="#cen-ESV-30456N" data-link="(<a href="#cen-ESV-30456N" title="See cross-reference N">N</a>)" style="box-sizing: border-box; font-size: 0.625em; line-height: 22px; position: relative; top: 0px; vertical-align: top;"></span>casting all your anxieties on him, because <span class="crossreference" data-cr="#cen-ESV-30456O" data-link="(<a href="#cen-ESV-30456O" title="See cross-reference O">O</a>)" style="box-sizing: border-box; font-size: 0.625em; line-height: 22px; position: relative; top: 0px; vertical-align: top;"></span>he cares for you.</span><span style="background-color: white; font-family: "Helvetica Neue", Verdana, Helvetica, Arial, sans-serif; font-size: 16px; line-height: 24px;"> </span><span class="text 1Pet-5-8" id="en-ESV-30457" style="-webkit-font-smoothing: antialiased; background-color: white; box-sizing: border-box; font-family: "Helvetica Neue", Verdana, Helvetica, Arial, sans-serif; font-size: 16px; line-height: 24px;"><span class="versenum" style="box-sizing: border-box; font-family: Arial; font-size: 12px; line-height: 22px; position: relative; top: 0px; vertical-align: top;">8 </span><span class="crossreference" data-cr="#cen-ESV-30457P" data-link="(<a href="#cen-ESV-30457P" title="See cross-reference P">P</a>)" style="box-sizing: border-box; font-size: 0.625em; line-height: 22px; position: relative; top: 0px; vertical-align: top;"></span>Be sober-minded; <span class="crossreference" data-cr="#cen-ESV-30457Q" data-link="(<a href="#cen-ESV-30457Q" title="See cross-reference Q">Q</a>)" style="box-sizing: border-box; font-size: 0.625em; line-height: 22px; position: relative; top: 0px; vertical-align: top;"></span>be watchful. Your <span class="crossreference" data-cr="#cen-ESV-30457R" data-link="(<a href="#cen-ESV-30457R" title="See cross-reference R">R</a>)" style="box-sizing: border-box; font-size: 0.625em; line-height: 22px; position: relative; top: 0px; vertical-align: top;"></span>adversary the devil <span class="crossreference" data-cr="#cen-ESV-30457S" data-link="(<a href="#cen-ESV-30457S" title="See cross-reference S">S</a>)" style="box-sizing: border-box; font-size: 0.625em; line-height: 22px; position: relative; top: 0px; vertical-align: top;"></span>prowls around <span class="crossreference" data-cr="#cen-ESV-30457T" data-link="(<a href="#cen-ESV-30457T" title="See cross-reference T">T</a>)" style="box-sizing: border-box; font-size: 0.625em; line-height: 22px; position: relative; top: 0px; vertical-align: top;"></span>like a roaring lion, seeking someone to devour.</span><span style="background-color: white; font-family: "Helvetica Neue", Verdana, Helvetica, Arial, sans-serif; font-size: 16px; line-height: 24px;"> </span><span style="background-color: white; font-family: "Helvetica Neue", Verdana, Helvetica, Arial, sans-serif; font-size: small; font-weight: normal; line-height: 24px;">Satan is preying on my weakness right now. </span></h3>
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4. Pray for the surgeons. We are handing our daughter over to them and we are trusting them. I pray for a clear decision on what is the correct procedure, steady hands and focused minds during surgery.</h3>
<h3>
<br />I know whose daughter she is. She is a Princess. She is the daughter to a Heavenly King. He goes before her, he will be with her, and he will never leave her. </h3>
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Brooks Family Red Thread Journieshttp://www.blogger.com/profile/11145492897290327969noreply@blogger.com0tag:blogger.com,1999:blog-5694947744839164544.post-15940892626408272082016-10-07T23:05:00.000-04:002016-10-07T23:05:15.291-04:00Who knew you could be so emotionally connected to a doctor??????Well, I wish I had more to report, and better things to report.....<br />
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The latest on surgery and testing....... Emmie will have a nuclear scan of her kidneys and an angiogram of her renal arteries the week of Oct 17th. We do not have the exact date yet, however we do know that we will need to be in Michigan 2 to 3 days for testing that week. Surgery should still be on track for the middle of November. I am hoping to confirm all dates early next week.<br />
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Today, Emmie had a routine check up with her nephrologist, Dr. Leiser (kidney doctor, but also her hypertension specialist). When we arrived, I was told he was on a leave of absence, and we would be seeing someone else. I know due to privacy laws and such, they are not allowed to give me any more info than that. All they could say was that he was on a leave of absence and they were not sure he was returning. I'm sure most of you reading this have not had a child with on going medical needs, but those of you who have will get where I'm coming from, and hopefully those of you who haven't had to deal with this, will understand too.<br />
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The first time Dr. Leiser saw Emmie, she was 2 days post heart surgery. She was 1 year old. She was still on a vent. We didn't know if she was going to live or die. At the time, I had no idea the level of bond we would make with this man. He became her hypertension specialist. He controlled and adjusted meds until we found what would work. At times in Emmie's life, we've had to see him weekly, biweekly, monthly. During that time, Emmie was having blood work done 3 times a week. We were marking her body with a sharpie to keep track of where the last draw was so we weren't using the same arm or leg too many times. I've made lots of late night calls to him over high blood pressure, and kidney function. He's reassured me, he's comforted me, and he's cared for my daughter like she was his own. I believe he loves her as much as I do. I believe he has stressed out over her blood pressure like I have. I know he has looked through her medical records, studied over them, and put in countless hours of work to make sure she was receiving top notch care. I've said for years that he is by far our favorite doctor! (Not that there aren't others we love as well!) But we have developed a bond with him that I can't explain. He's been through EVERYTHING with us. He takes his time to explain things to me. He would even let me ask my list of questions that I had researched on WebMD. I joked with him, that I do in fact have a WebMD degree! HA!!! He would let me try to take her off of meds, knowing full well it wouldn't work. He'd tell me "You can take her off hydrolazine, and call me in a few days to let me know her BP numbers." And of course, I would have to call him and say "You were right, I had to put her back on it." I love that he gave me a say in her care. I love that he treated me with respect, he talked to me like a human, and he cared. We have taken him gifts, food, and had tons of conversations about all kinds of things other than Emmie and medicine. I know about his kids, his mom, I know he's Jewish.<br />
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I did not realize how much I care for him as a person until today. I just started crying when I thought we might not see him again. I needed to talk to him today. I needed his reassurance that going to Michigan is the right choice. I needed his smiling face, and I needed the one doctor who knows my child inside and out to tell me its going to be ok.<br />
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I have no idea what's going on with him. They did tell me "He's ok." So, I guess that means he's not sick, but I'm not sure. I'm asking for my prayer warrior friends and family to pray for Dr. Leiser. Whatever is going on in his life that would cause him to take a leave of absence, means he needs our prayers.<br />
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While we are connected to and trust these doctors, I also know that The Great Physician know's my child inside and out even better than Dr. Leiser. He knitted her together in just the way he wanted her. While I do not understand why, I know it is a part of his plan for her life, and mine too. I pray daily for wisdom as we make difficult decisions. I pray for the doctors that God puts in our paths, and I'm asking you to do the same!<br />
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Thanks for hanging in there with us! We can not do this alone!! Here are just a few of the many pics we have of our favorite doctor. Most of our pics are of him checking her blood pressure, because for the longest time, she wouldn't let anyone else do it! Just him! I personally think he looks like a skinny Albert Einstein. :)<br />
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<br />Brooks Family Red Thread Journieshttp://www.blogger.com/profile/11145492897290327969noreply@blogger.com1tag:blogger.com,1999:blog-5694947744839164544.post-90908523173009927292016-09-29T22:58:00.001-04:002016-09-29T22:58:15.486-04:00Emmie Surgery Details<h3>
Finally, we got the call we've been on pins and needles waiting for. Dr. Coleman, a pediatric vascular surgeon from the University of Michigan Children's Hospital called us today. Even through we waited a few extra days for the call, the timing was perfect. I was pulling in the driveway when the phone rang, and Tom was working from home, so he was able to be a part of the call as well.</h3>
<h3>
Here is some background info that she was able to give us......</h3>
<h3>
Emmie's mid aortic syndrome is what she would call moderate, not severe! YAY! She said she has seen some cases where the aorta looked like a tiny thread it was so narrow, and Emmie's is not that bad! Thank the Lord for that. She said that all of Emmie's arteries in this area are funny in nature and there are multiple arteries in areas where there should only be one. She specifically mentioned renal arteries, which we already knew were not normal, but also arteries around her intestines. She also said they believe these sort of birth defects take place during or around the 4th week of gestation. During this time the aorta is formed by several arteries fusing together, and sometimes the aorta is under fused or over fused. </h3>
<h3>
Dr. Coleman and the team of vascular surgeons feel that now is the time to fix these issues for multiple reasons. Number one, the fact that Emmie is on 6 different medications, some of which she has to take twice a day in order to keep her BP normal. Number 2, there are some long term side effects to being on so many meds at such a young age and potentially for life if we do nothing to fix the problems. Number 3, she can not have the tether cord release surgery until her BP can be more accurately regulated between the upper and lower portions of her body. </h3>
<h3>
Some of the options for surgery was mentioned to us when Emmie was 3 years old, this was when we first found out about the mid aortic syndrome. However the consensus among the doctors then was that she was too young. They thought it would be something to address when she was closer to her adult height. However, today Dr. Coleman assured us, that it is completely safe and she is well within the appropriate age for this surgery. She said they do not like to do this on kids under the age of 5, and since Emmie is now 7, she is big enough.</h3>
<h3>
They will address the mid aortic syndrome with an aortic patch, which is similar to what was originally done with her coarc in the arch of her aorta. They will open up the aorta to make the narrowed area wider and patch it.</h3>
<h3>
At this point the plan of action for the renal arteries isn't clear. Dr. Coleman would like to do 2 more image studies on Emmie's renal arteries before making a final decision on the approach.</h3>
<h3>
We will be making a trip to Michigan in the next few weeks for an overnight stay in the hospital with Emmie. They will do an angiogram and a nuclear study on her kidneys. We will get to meet her surgery team, discuss everything, and make the final plans.</h3>
<h3>
Surgery will probably be in November. It will not be an easy surgery, in fact I'd say it's more serious than her original heart surgery. It will last 6-10 hours. Afterwards, Em will go to the PICU, she will be on a vent for about 12 hours. She will have an epidural for 1-2 days to control the pain. After that, they will assess the need to keep the epidural in or take it out. She will stay in the PICU for a week. During this time they will be working to get her sitting up, out of bed, walking the halls. But all meds will have to be given intraveniously, which is why they stay in PICU for so long. Also, blood pressure is an issue after a surgery like this, so another reason to be more closely monitored in the PICU. The biggest side effect of the surgery is the pancreas gets"disturbed" and doesn't like it! So, it starts secreting a hormone that shuts down the intestines. It takes several days to get the pancreas to settle down and the intestines to work again.</h3>
<h3>
Once BP is controlled again, intestines are working again, she will move to the heart floor, where she will spend another week. Then, if everything is going according to plan, we will bring her home. She will have check ups with them at 1 month out, 6 months out, and one year. She will not be allowed to go to school for 6 weeks. She will not be allowed to do anything physical, sports, recess or PE for 9 months. She can't even carry her own backpack for several months. This will in no way shape or form be easy for her. I'm pretty sure it's going to be tough on me to watch her endure this as well.</h3>
<h3>
The positives.......<br />Dr. Coleman says if you surveyed 100 kids (and she sent me the studies) that they have performed similar operations on, 97% have seen an improvement in their lifestyle and medication doses. 27% of them have reduced their meds to 1 or 2, and 70% of them have been able to come off all meds! Now, she did say that Em is a complicated case and she doesn't think she will come off of all, but does think they can get her down to 2 meds, improve her long term quality of life, even giving her the possibility of having children in her adult years should she so choose.</h3>
<h3>
Dr. Coleman actually gave us more hope and positive things than we've gotten in a long time. She said she believes that Em's team of doctors at Riley have done an excellent job taking care of her up to this point. Another praise to our Lord for leading us to the right doctors! Riley is a wonderful place, full of caring nurses and doctors who are saving lives on a daily basis. </h3>
<h3>
We will get definite dates for testing and surgery on Monday. </h3>
<h3>
While I am by no means ready for this, nor do I want any of this. It's here. I choose to face it head on knowing my God is in control. He will carry Emmie, her doctors, and our family through this. I appreciate your prayers and kind words. They have helped me through this week. When we learned of this last Friday, I had a rough few days. I sort of became a recluse, didn't want to go anywhere or talk to anyone. Avoided church because I knew I'd cry talking about it, and I knew people would have questions. </h3>
<h3>
Please, don't hesitate to talk to me, ask me questions, I really feel at peace with what's happening, and that's a credit to all the prayers that have been going up for us.</h3>
<h3>
"I can do all things through Christ who strengthens me" Philippians 4:13</h3>
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Brooks Family Red Thread Journieshttp://www.blogger.com/profile/11145492897290327969noreply@blogger.com0tag:blogger.com,1999:blog-5694947744839164544.post-63995544279460491822016-09-23T22:50:00.001-04:002016-09-23T22:50:55.311-04:00More Surgery in Emmie's future.....I last gave an update on Emmie in April of this year, so about 5 months ago. It's time to update again and ask that again you would pray for Emmie, her doctors and us as parents as we make some difficult decisions. If you need a recap of where we were last spring, please see the post from April.<br />
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The question since last spring has been "Is it safe to do a tether cord release surgery on Emmie's spine given her vascular issues and blood pressure fluctuations between her upper body and lower body?" After the "meeting of the minds" took place in April, they decided they would like a more in depth look at Emmie's vascular system. So, in June she had an MRA of her head, chest and abdomen, specifically looking at her vascular system. Since that study was done, it's been relatively quiet. I've been around this block enough to know that no news is good news! So, I wasn't concerned, and didn't try to find out anything. I think I was living in denial a little bit, just enjoying our summer of playing in the pool and basking in the sunshine!<br />
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Two weeks ago, Emmie had a check up with her orthopedic doctor, the one who monitors her scoliosis. Dr. Back (as we'll call her) asked about the tether cord surgery, she wanted to know where we were with that, was it scheduled yet, etc. Well, nothing is scheduled, and no one has reached out to me. So, Dr. Back reminded me that Emmie really does need the tether cord release surgery and it will help with some of her spinal issues. Her scoliosis is getting a little worse, so the sooner we can release the tether the better.<br />
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Unfortunately, this means the "living in denial' is over for me. Time to make some calls and see where we are with all of that. I put in a call to Emmie's cardiologist and I found out that that they have sent all of Emmie's records to the University of Michigan Children's Hospital (MOTT) for a second opinion. Dr Heart (cardiologist) tells me that MOTT's has the most robust pediatric vascular dept in the country, and she feels that their opinion would be highly valuable in assessing Emmie's needs. She said that they have had Emmie's information for a few weeks now, and that she would make a call to see where they were with everything.<br />
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Today I got the call from Dr. Heart to fill me in on everything MOTT's pediatric vascular surgeons think.....<br />
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The vascular surgeons at MOTT's think that Emmie is a prime candidate for vascular surgery. They believe that now is the time to act and try to fix some of her vascular abnormalities, since they are now presenting problems that interfere with other procedures she needs (such as tether cord release). The potential outcome of vascular surgery is great, she could be able to come off of most or all medication! However, the 2 options for surgery are very difficult, hard on her body, and present long recovery.<br />
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One option is a bypass of the mid-aortic syndrome. This would however require a quadruple bypass because they'd have to create a by pass to each renal artery, one to the large intestine, and one to the bowl. All 4 of those arteries connect to the aorta in the area where her aorta narrows, which decreases the blood flow to those organs.<br />
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The second option is to take her renal arteries out, and replant them in a different area of her body so they can connect to the aorta in an area where they will get better blood flow. There is also the possibility of using another artery in her body in place of her renal arteries, if the renal arteries are also narrowed.<br />
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Any of the options above will require her to have surgery at the University of Michigan Children's Hospital, which is 4.5 hours away. It will require a 2 week hospital stay and a not so fun recovery for Emmie.<br />
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Obviously my first concern is for Emmie. What is best for her, her body, the risks, the outcome, what do we gain from this, is it worth it........ the list of questions running through my mind is overwhelming.<br />
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But the mom/wife in me also questions EVERYTHING else. Who will take care of my other kids? How will we afford to stay in Michigan for 2 weeks? I can't stop working for 2 weeks? Tom can't stay there for 2 weeks? How will we pay for the medical bills that will fall in our laps after surgery? How can I not see my other kids for 2 weeks? ..........Another list of questions that are just overwhelming.<br />
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I simply can not wrap my mind around all of this yet. The surgeon is supposed to call me on Monday. We will set up an initial appointment with them, then set up a surgery date. It could all happen in as little as 6-8 weeks.<br />
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I've spent the majority of the evening just crying about it. I know God has a plan for that girl. His plans are bigger than mine. His plans are better than mine. And I know he works all things together for my good (and hers). Even though these verses run through my head, I struggle with the reality of the situation. She deals with more than most of us have ever had to do. She teaches me everyday what the meaning of strength is. I want to take the burdens from her so badly. My mommy heart just aches for her.<br />
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So I ask that you all just pray for us as we make these decisions. Pray for her doctors. Pray that Emmie will be ok with all that is about to happen.<br />
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I'll update again when we get more info!Brooks Family Red Thread Journieshttp://www.blogger.com/profile/11145492897290327969noreply@blogger.com1tag:blogger.com,1999:blog-5694947744839164544.post-59306521588395993512016-04-12T22:53:00.002-04:002016-04-12T22:53:46.318-04:00Emmie Update<span style="color: rgba(0 , 0 , 0 , 0.701961); font-family: "uictfonttextstylebody"; font-size: 17px;">Emmie Update.....</span><br />
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I've not posted an update on Emmie in awhile, and thought I'd fill you all in and ask for your prayers!</div>
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For the most part Emmie is doing well. She is a happy, energetic 7 yr old. She's doing all the things every other girl her age does. You'd never know by looking at her how many health concerns she has.</div>
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Emmie's heart looks great! Exactly how it should be. Her kidney function is good, and we've been able to keep her blood pressure normal (with 6 medications) for several years now. </div>
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Her original diagnosis of aortic coarctation is still monitored every 6 months to a year, and her stent is adjusted as needed (which is basically as she grows taller). She has also been diagnosed with mid aortic syndrome, which is another narrowing in her aorta, but lower in her abdomen, around the belly button. This area is monitored as well, however until she is fully grown, there's not much they can do to treat this.</div>
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Her kidney function has not gotten worse, and in fact stayed pretty much the same since about the age of one. She's got 2 partially functioning kidneys: her left kidney was never formed correctly in the womb, so it has always only had the bottom half functioning and her right kidney is receiving very little blood flow due to the narrowing in her renal arteries, so it also doesn't function at full capacity. However, her nephrologist tells me that you have a lot of extra kidney!! So she's ok!</div>
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The latest in Emmie's world of doctor visits and hospitals has been the scoliosis diagnosis. She now wears a brace to help slow the progression of her scoliosis. She also has something called a tether cord, which is present at birth but should disintegrate on its own, well hers didn't! It needs to be surgically snipped in order to help slow the scoliosis. This surgery is pretty serious, requires a neurosurgeon, 3 days in the hospital and several weeks of down time. This surgery was supposed to happen in January, but due to complications with blood pressure, it was stopped before they did any cutting but after she was already under anesthesia. </div>
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Since then, there have been lots of opinions on what's causing the blood pressure issues. Emmie's BP above her coarch runs high, and below the coarch runs low. The low BP is also affecting the area of the spine that needs to be operated on. The spine doesn't like low BP, therefore the surgeons were concerned about damaging her spine during surgery due to lack of blood flow, which is why the surgery was stopped.</div>
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There is also this lingering question that has been brought up more than once, does Emmie have something called "neurofibromatosis". It could answer some questions if we got that diagnosis, but ultimately doesn't change the course of treatment for her. That is something we are hoping to get answered once and for all very soon, but requires genetic testing, since she doesn't have all the clear signs that lead to it, and genetic testing is expensive, insurance companies don't like to pay for it, so another battle we have to fight. </div>
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All of these doctors are coming together <a href="x-apple-data-detectors://0" x-apple-data-detectors-result="0" x-apple-data-detectors-type="calendar-event" x-apple-data-detectors="true">Wednesday afternoon</a> (<a href="x-apple-data-detectors://1" x-apple-data-detectors-result="1" x-apple-data-detectors-type="calendar-event" x-apple-data-detectors="true">April 13th</a>) to discuss Emmie. They will make a decision on how to proceed. How do they safely operate on her? This isn't the first time she's been the topic of a "meeting of the minds" so to speak, in fact I'd say she has quite often been the topic of discussion amongst these doctors. They tell me she's an anomaly, they've never dealt with a case quite like hers and she doesn't make things easy on them!</div>
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I ask that you please pray for Emmie. Pray for her team of doctors. Pray for the decisions that need to be made. I trust these doctors with my daughter, but I trust in God the Father even more. I pray for his healing hand on her body daily. I wish she didn't have to go though any of these things. I wish she didn't take 6 medications daily, I wish she wasn't a Riley Child, I wish I could take all of her pain, but the fact of the matter is, I can't. I can however pray for my daughter and her team of doctors, and I ask that you do the same!</div>
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<span style="color: rgba(0, 0, 0, 0.701961); font-family: uictfonttextstylebody; font-size: 17px;">Palms 139:14 I will give thanks to You, For I am fearfully and wonderfully made.</span></div>
Brooks Family Red Thread Journieshttp://www.blogger.com/profile/11145492897290327969noreply@blogger.com6tag:blogger.com,1999:blog-5694947744839164544.post-63202241263756085762012-03-16T13:16:00.000-04:002012-03-16T13:16:31.222-04:00Friday Fun March 16th!<span style="font-family: Arial,Helvetica,sans-serif; font-size: small;">Hard to believe it's already March!! Last year at this time I was in the final stages of paperwork prep for my trip to China! As we approach the one year anniversary of being united with Elise, it's amazing to think about how far we've come! Not only with Elise, but everything that happened to our family as a whole. I'm happy to report things have calmed down quit a bit! </span><br />
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<span style="font-family: Arial,Helvetica,sans-serif; font-size: small;">A recap: In March of 2011 our house sold (which we had been trying to sell for a year!) We moved into a rental house in April. Tom accepted a new job in May. I went to <br />
China in May. We bought a new house in June. We moved AGAIN in July!! All of that while adjusting to a 4th child, and helping her adjust to life with a family.... life was a little CRAZY!!</span><br />
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<span style="font-family: Arial,Helvetica,sans-serif; font-size: small;">Things are much calmer, except for the 2 yr old and 3 yr old running wild around the house, making messes with whatever they can get their hands on!! </span><br />
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<span style="font-family: Arial,Helvetica,sans-serif; font-size: small;">Here's a few pics to show you how the girls and I spend our days while Tom's at work and the boys are at school! </span><br />
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<div class="separator" style="clear: both; text-align: center;"></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgyKKyCQu6-uKBDgDzJgXt0OUsbGcDRNYogGC8AtQeJeG4xCW-45YVZNgmikf6pa0iB1zw3Ub1G6pc5NGdkSzX-riH3BrmwKamwpNG_ofJG-8rM6RvahvWCaHAn6RdzCPZixm60qq4Q8w/s1600/IMG_8701.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgyKKyCQu6-uKBDgDzJgXt0OUsbGcDRNYogGC8AtQeJeG4xCW-45YVZNgmikf6pa0iB1zw3Ub1G6pc5NGdkSzX-riH3BrmwKamwpNG_ofJG-8rM6RvahvWCaHAn6RdzCPZixm60qq4Q8w/s320/IMG_8701.jpg" width="238" /></a></div><div style="text-align: center;"><span style="font-family: Arial,Helvetica,sans-serif;">The girls LOVE to make me laugh!!</span></div><div style="text-align: center;"><br />
</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjeEj1c4f_uEC3WGNQTKo4uxjNF_PdCDhJhDoCoUwi8uKdLK84Z3VlFJd0o-MZwWsj0rH20KB3jkVWuq41YsKEDhTd9L9yTuS_uMoIvGp7NOuMfO56atdNW6K6zCVxzin3FJPxlU2Gcsw/s1600/IMG_7020.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjeEj1c4f_uEC3WGNQTKo4uxjNF_PdCDhJhDoCoUwi8uKdLK84Z3VlFJd0o-MZwWsj0rH20KB3jkVWuq41YsKEDhTd9L9yTuS_uMoIvGp7NOuMfO56atdNW6K6zCVxzin3FJPxlU2Gcsw/s320/IMG_7020.jpg" width="238" /></a></div><br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEizUvnSIf77PS4fGtsQtW9wrPhSNnqE6MblMw-8Er-jVT3muoJ-TeFGDQjtYRMi5Hi2Y4gIy8aq__0qbZiV66nuy_7QiHHHFUtwGVGXNBw_oh6NnLfQoBnnOfkcfnboBJRSUKhXsVnaiA/s1600/IMG_9843.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEizUvnSIf77PS4fGtsQtW9wrPhSNnqE6MblMw-8Er-jVT3muoJ-TeFGDQjtYRMi5Hi2Y4gIy8aq__0qbZiV66nuy_7QiHHHFUtwGVGXNBw_oh6NnLfQoBnnOfkcfnboBJRSUKhXsVnaiA/s320/IMG_9843.jpg" width="238" /></a></div><div style="text-align: center;"><span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;">We pretend to be camping.... only indoors, because that's more fun!</span></span></div><div style="text-align: center;"><br />
</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj0zqjBuXBWmGMySl0sA9fv-nOJmOJkhMokEDgzKbFdVrpjnvYuuokDUWUcNr4AeFn3zv7stWDRT7sCa4df9hvcVxqpQYuuvcKv24tHhkupCUS4ahFOHE6H8y3C_bRShQBkToozZ9Tt4g/s1600/IMG_8296.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="238" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj0zqjBuXBWmGMySl0sA9fv-nOJmOJkhMokEDgzKbFdVrpjnvYuuokDUWUcNr4AeFn3zv7stWDRT7sCa4df9hvcVxqpQYuuvcKv24tHhkupCUS4ahFOHE6H8y3C_bRShQBkToozZ9Tt4g/s320/IMG_8296.jpg" width="320" /></a></div><div style="text-align: center;"><span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;"> </span>I work as a personal Trainer, the girls like to help train people too! They are great weights to </span><span style="font-size: small;"><span style="font-family: Arial,Helvetica,sans-serif;">make training harder!</span></span></div><div style="text-align: center;"><br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj1ZoCk3ckPfnIz9MUKWzWCNhNGZ79geeaMhyphenhyphenfvRrML7CehfPsW24cxF1RFBz5rL__XSjoUzE8M-MnQ9r6XG3Mr0oWM0X_acHwpA6kTjrRWWrE61XjWmho1S4MvjQi0XNORaLbmtK3t5w/s1600/IMG_4565.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="238" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj1ZoCk3ckPfnIz9MUKWzWCNhNGZ79geeaMhyphenhyphenfvRrML7CehfPsW24cxF1RFBz5rL__XSjoUzE8M-MnQ9r6XG3Mr0oWM0X_acHwpA6kTjrRWWrE61XjWmho1S4MvjQi0XNORaLbmtK3t5w/s320/IMG_4565.jpg" width="320" /></a></div><div style="text-align: center;"><span style="font-size: small;"><span style="font-family: Arial,Helvetica,sans-serif;">The girls go to school one day a week! They LOVE CMO.... and so does mommy!! The girls are ready to go with their lunch boxes!</span></span></div><div style="text-align: center;"><br />
</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEisqd0tFzZ-anj2gufuLETCFcSCDgAUq45EyJyEMrTH0eRoyLFzGZ0kGUS2gIEW2fRJSrFzWFlTKW52S_lWLpAnvh1DLGm1ywVDgKjr1156Ek5XfGrTAgBp4nAxh-hJ1gIxVFJRQcWPrQ/s1600/IMG_7138.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEisqd0tFzZ-anj2gufuLETCFcSCDgAUq45EyJyEMrTH0eRoyLFzGZ0kGUS2gIEW2fRJSrFzWFlTKW52S_lWLpAnvh1DLGm1ywVDgKjr1156Ek5XfGrTAgBp4nAxh-hJ1gIxVFJRQcWPrQ/s320/IMG_7138.jpg" width="238" /></a></div><div style="text-align: center;"><span style="font-family: Arial,Helvetica,sans-serif; font-size: small;">We spend a lot of time in the car! So, this is how we roll....... headphones on (watching Mickey Mouse) sippy cup, snack & blankie!</span></div>Brooks Family Red Thread Journieshttp://www.blogger.com/profile/11145492897290327969noreply@blogger.com0tag:blogger.com,1999:blog-5694947744839164544.post-67340005156775943032012-02-24T18:23:00.000-05:002012-02-24T18:23:05.779-05:00Friday Fun!!!Today we spent the morning at Chuckee Cheese to help my niece, Lindsey, celebrate her 4th birthday! It was fun to celebrate with her! She's a little miracle baby, who's not so little any more! Born 8 weeks early and weighing in under 5 lbs.... you'd never know it now!! Thanks Lindsey for asking us to come help you celebrate! The girls are so blessed to have a cousin their age!! We thank God for your miracle arrival and how you've grown and blossomed in the last 4 years!! Now, watch out world, these three girls will keep all of us hopping as they grow up together!!! Ages 4, 3, and 2!! Little stair steps! With a whole lot of energy!<br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiNNiBniBDYnS8uCLtuen_SA86KVJiF2GqcX3l3fNVr0hVA1KgL1AnH4COaKwWiN2wm8U0T_gB906_z7b80q0cCGUufoe7mS-3ceo55PPWmeOc2KooMafa9sBcyqiwJQPBkPogI3K07Rg/s1600/IMG_9206.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiNNiBniBDYnS8uCLtuen_SA86KVJiF2GqcX3l3fNVr0hVA1KgL1AnH4COaKwWiN2wm8U0T_gB906_z7b80q0cCGUufoe7mS-3ceo55PPWmeOc2KooMafa9sBcyqiwJQPBkPogI3K07Rg/s320/IMG_9206.jpg" width="238" /></a></div>Brooks Family Red Thread Journieshttp://www.blogger.com/profile/11145492897290327969noreply@blogger.com0tag:blogger.com,1999:blog-5694947744839164544.post-90602278388063415672012-02-17T14:00:00.000-05:002012-02-17T14:00:58.557-05:00Wordless FRIDAY! February 17th 2012<div style="text-align: center;"> <span style="font-size: large;"><span style="font-family: Verdana,sans-serif;">Play date at the Commons indoor Playground</span></span></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgWPDzD7OP7P9DphTezAM8PPiYwsASX57837FTs23trwvVAT_ljctOqU8kmbARj__jA6-86V-a82EEDQO9E2XgC9G2xeBQ36QV3w-4ys4J_G5qyPFTog90AUO3jzFk5WMZTp5fggOq5lQ/s1600/IMG_0306.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgWPDzD7OP7P9DphTezAM8PPiYwsASX57837FTs23trwvVAT_ljctOqU8kmbARj__jA6-86V-a82EEDQO9E2XgC9G2xeBQ36QV3w-4ys4J_G5qyPFTog90AUO3jzFk5WMZTp5fggOq5lQ/s320/IMG_0306.JPG" width="239" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiWSb67lz31e47SeKjw3VFvZ7ZnjQgWLWswiG1sA9h-4lj9ak_WcIJTHyBmdakgNFRckpNR9rQDaVKftyDhbvY1AW6Hc5t7qDA9to4lydKDXjilPxyZbdo21qwItkE7Gwgrkuy6GeIuMw/s1600/IMG_0300.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiWSb67lz31e47SeKjw3VFvZ7ZnjQgWLWswiG1sA9h-4lj9ak_WcIJTHyBmdakgNFRckpNR9rQDaVKftyDhbvY1AW6Hc5t7qDA9to4lydKDXjilPxyZbdo21qwItkE7Gwgrkuy6GeIuMw/s320/IMG_0300.JPG" width="239" /></a></div><br />
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<div style="text-align: center;"><span style="font-size: large;"><span style="font-family: Verdana,sans-serif;">So, the following pic deserves some explanation. Emmie has been waking up in the middle of the night and NOT wanting to go back to sleep. I told her she had to stay in bed, look at books and she was NOT allowed to come wake me up!...... Well, she did not wake me up, but she did NOT stay in bed either! She found sharpies, a black one and a red one, she let the dogs out of their kennels, she colored on herself (after stripping down to her birthday suit), she colored on the dogs and she colored on a chair. This is what I found when I went to wake her up the following morning .........</span></span></div><br />
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<div style="text-align: center;"><span style="font-size: large;"><span style="font-family: Verdana,sans-serif;">A pleasantly warm winter day!! Which hardly ever happens around here!!</span></span></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjOSH9r3A327IAxiRqcOy8zdzx8GY0ve1AmrUrurx3GSflck-FBbKAW3vLxR9TEPspgvJEkBYjiXYH1NyvRtijRskDOHNstS4e0W7zHYpgBIwI5RAbuC-LsNA3i_Yzd5bvXXDe9BQk4fw/s1600/IMG_0431.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjOSH9r3A327IAxiRqcOy8zdzx8GY0ve1AmrUrurx3GSflck-FBbKAW3vLxR9TEPspgvJEkBYjiXYH1NyvRtijRskDOHNstS4e0W7zHYpgBIwI5RAbuC-LsNA3i_Yzd5bvXXDe9BQk4fw/s320/IMG_0431.JPG" width="239" /></a></div><br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgfvd0D_dQ9IomXL6_jHpGe9ubXX10bH3gHnnmFsCagOaW4yWlVTkDGTqpxn0CyCsqllxxeVoGKS41MfwYatu4WsZLLZrFi9wMEZ21n7hLFYdb4Llb4vSRe7-aaaW1VAQHAMzBgpoH3WQ/s1600/IMG_0434.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgfvd0D_dQ9IomXL6_jHpGe9ubXX10bH3gHnnmFsCagOaW4yWlVTkDGTqpxn0CyCsqllxxeVoGKS41MfwYatu4WsZLLZrFi9wMEZ21n7hLFYdb4Llb4vSRe7-aaaW1VAQHAMzBgpoH3WQ/s320/IMG_0434.JPG" width="239" /></a></div><span style="font-size: large;"><span style="font-family: Verdana,sans-serif;"> </span></span>Brooks Family Red Thread Journieshttp://www.blogger.com/profile/11145492897290327969noreply@blogger.com0tag:blogger.com,1999:blog-5694947744839164544.post-46556299883594944172012-02-06T17:58:00.001-05:002012-02-06T18:01:57.087-05:00Birthday letter to a Birth Mother I'll Never Meet.....OK, so I've missed Wordless Wednesday the last 2 weeks :-) I'll be more proactive this week!!<br />
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(typed all of this on Elise's birthday, Saturday February 4th)<br />
So today Elise turns 2!!!!! I can't believe it! We waited for her for so long. At times the wait was painful, frustrating and seemed never ending. And now she's here! She's been here for over 7 months. It seems like yesterday I was opening up the email to see her face for the first time, then hoping on a plane 8 months later to go get her, then holding her for the first time, and bringing her home to her forever family and placing her in the arms of her daddy! Feeling so blessed by this amazing journey, amazing daughter, and an amazing God who orchestrated the whole thing!<br />
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There is also a mother out there somewhere who is remembering this day a little different than me. She remembers laboring and delivering a beautiful baby girl that she could not keep. She remembers holding her crying newborn baby and soothing her. She remembers staring at every inch of this baby girl and trying to memorize it. She needed to burn the image of her baby in her mind, because tomorrow she would not see this baby anymore. Maybe she begged her husband to let her keep the baby, maybe she named this tiny little girl she held so close, maybe she sang the baby to sleep......<br />
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My mind can go on and on imagining the joy she felt holding her baby and the pain she felt knowing what laid ahead. Sometime in the night of February 4th, she wrapped her baby in a blanket, she said goodbye to her precious baby and she, or someone she knew placed the baby at the gates of the Poyang SWI.<br />
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I wish I could tell her all about the baby girl she gave up. If I could, this is what I'd say......<br />
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Dear Birth Mother,<br />
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I wish I could tell you that she is doing great. That she is in the US, in a small town in the state of Indiana. She has a family with 2 brothers and 1 sister. She has a mom and a dad, and a huge extended family, and all of them love her very much!<br />
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I would tell you that Elise is happy, playful and full of energy! She smiles all the time! She smiles so big her eyes disappear! Her laugh is contagious. She walks, runs, and even skips! She talks nonstop :-) She LOVES food! She loves to play with her brothers and sister. She loves playing with sidewalk chalk, her power wheels jeep and baby dolls. She is very attached to her bear blankey. She is terrified of animals. She weighs 28 lbs now! She is growing like a weed! She has a great life full of everything she needs, and most of what she wants.<br />
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She was the missing piece to our family. We love her so much and can't imagine our lives without her! We are forever grateful for your sacrifice. You gave up something so dear and precious to you, in hopes that she would have a better life. Because of your sacrifice, we have been forever blessed with a daughter!<br />
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Thank you,<br />
Tracy/adoptive mother <br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiRVKFlMSMjzTLZumZzrMRQzVTyf6BnIt865om81IqSBe_uKapZmuC5TE9bskFFolgxD6XTWVd0MURfNlIkujS3Epg8N62eKXkUvlZC5pJW5NQPF4kU1ZxJkSXSM2_JnxniCaSXHiwzLA/s1600/elise+eating+cake.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiRVKFlMSMjzTLZumZzrMRQzVTyf6BnIt865om81IqSBe_uKapZmuC5TE9bskFFolgxD6XTWVd0MURfNlIkujS3Epg8N62eKXkUvlZC5pJW5NQPF4kU1ZxJkSXSM2_JnxniCaSXHiwzLA/s320/elise+eating+cake.jpg" width="320" /></a></div>Brooks Family Red Thread Journieshttp://www.blogger.com/profile/11145492897290327969noreply@blogger.com3tag:blogger.com,1999:blog-5694947744839164544.post-16057888008849555472012-01-19T15:24:00.000-05:002012-01-19T15:24:49.644-05:00Wordless Wednesday..... January 18, 2012<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhnSg4208tXofWFDnnT7SV6ijzIRin9ip_U1yi4K9ftGA-rgZCuFpUVFP5VMO4wMHHEPCQmuW6piMOC9rkFaGo7iNcvlS9nZLhW8vEZz9DPKWySZd1OA-PrMeOXjJCNK9vsF2SHwTRbow/s1600/P1160815.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhnSg4208tXofWFDnnT7SV6ijzIRin9ip_U1yi4K9ftGA-rgZCuFpUVFP5VMO4wMHHEPCQmuW6piMOC9rkFaGo7iNcvlS9nZLhW8vEZz9DPKWySZd1OA-PrMeOXjJCNK9vsF2SHwTRbow/s320/P1160815.JPG" width="240" /></a></div><br />
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</div><div class="separator" style="clear: both; text-align: center;">Pics from our fun Birthday Lunch/Play Date with Cinnamon, Jacob & Claire!! Thanks guys for helping to make my birthday special!!</div>Brooks Family Red Thread Journieshttp://www.blogger.com/profile/11145492897290327969noreply@blogger.com1tag:blogger.com,1999:blog-5694947744839164544.post-14545727815890981562012-01-16T16:23:00.001-05:002012-01-16T16:24:28.910-05:00Birthday Traditions!!..... Daddy's and their DaughtersSo, lots of birthdays going on around here! January 12th is my grandmother's birthday. We celebrated her 87th birthday! January 15th is Emmie's birthday, she was 3. January 16th is my Bday, we won't mention my age! And January 17 is my mother's birthday. Then we do it all over again in February starting on the 4th with Elise's 2nd birthday. February 20th is my sister, and February 23rd is my niece Lindsey who will be 4. WOW!! That's a a lot of birthdays in only 5 weeks!<br />
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Birthday traditions that started when I was a kid and I'm continuing with my own children have been fun. One is your birthday dinner! You get to pick what we eat on your birthday, sometimes its the restaurant of your choice, sometimes it's Mom's cooking of your choice, but either way, if its your birthday, then you get to pick it!! <br />
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There's one birthday tradition that my dad started many years ago with his daughters. He ALWAYS brought us flowers on our birthday. I can't remember a time when he didn't. Some of my youngest memories are of my birthday, and I always remember getting flowers! My dad usually had to work on my birthday, unless it fell on a weekend, so I mostly remember him coming home from work with flowers for me. Nothing makes you feel special like flowers on your birthday! Especially when you are a kid! It made a lasting impression on me. I'm not sure why, but it was important enough that I've asked my husband to carry on the tradition with our daughters!<br />
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So, Saturday night Tom surprised Emmie with flowers. It was the sweetest thing! She was so excited! She told me all evening as she watched me make her birthday cake, "These are Emmie's flowers Mommy!" Makes me happy to see her so happy.<br />
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I think I just really want Tom to hold the bar high for our girls. I want them to expect to be treated like a queen when they go out on a date, because their Daddy treats them like a queen. I want them to never settle for someone who doesn't treat them the way a lady should be treated, and I know we, especially Tom, has to start laying that foundation now! The relationship they have with their dad will establish a guide for them as they maneuver though other relationships with boys.<br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh94eZD8fNRYS8QJ162c7us1ItTR_3UI9Lh85y2yOpOWalP7PReXYa6x6W1EBSvoZVHhq6w91ShnMdOPTbwB-x8wRCo8qEMx3iH3UiW4p9vKdi6C1z-LzobxQoBM3JaHpwl2XJFi_Dw7Q/s1600/P1160817.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh94eZD8fNRYS8QJ162c7us1ItTR_3UI9Lh85y2yOpOWalP7PReXYa6x6W1EBSvoZVHhq6w91ShnMdOPTbwB-x8wRCo8qEMx3iH3UiW4p9vKdi6C1z-LzobxQoBM3JaHpwl2XJFi_Dw7Q/s320/P1160817.JPG" width="240" /></a></div><div style="text-align: center;"> My B-Day flowers from my Dad</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg2xUFD0h7s56e0HIz01GB45m3OHajVOU_W78qmkd8cXpGZX0BOPKGCjPW3ljwPFgapO6twWXAp-_7RmmXCnp-J93d8Du2_vHembQNifG8eZ_K3GBK0id9qFQ6GbRYYCCtCQy9rXPgeBg/s1600/P1150785.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg2xUFD0h7s56e0HIz01GB45m3OHajVOU_W78qmkd8cXpGZX0BOPKGCjPW3ljwPFgapO6twWXAp-_7RmmXCnp-J93d8Du2_vHembQNifG8eZ_K3GBK0id9qFQ6GbRYYCCtCQy9rXPgeBg/s320/P1150785.JPG" width="320" /></a></div><div style="text-align: center;"> Emmie's cake & Flowers</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEia2QggniwaMl1dFzQMB_ic3_1SYkJR1RudVDqNmbnczB-Ra-E1wnP7eRfapLzUnPg22vgoKbyiuvjKMtGFJR_cld_N7dUZjKXkn2nhFCgVLxmbLSjsTmLIZZFuivbGWOFgdPSF9mGhqA/s1600/P1150788.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEia2QggniwaMl1dFzQMB_ic3_1SYkJR1RudVDqNmbnczB-Ra-E1wnP7eRfapLzUnPg22vgoKbyiuvjKMtGFJR_cld_N7dUZjKXkn2nhFCgVLxmbLSjsTmLIZZFuivbGWOFgdPSF9mGhqA/s320/P1150788.JPG" width="320" /></a></div><div style="text-align: center;"> Emmie with her horse cake (which she requested) & below are her roses from her Daddy!</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEia-lE5v8XaOncfzIxVJ4ftk7-_fbMKBRnE-EAhT7X6GV-LVf3asTqktBzjN8LCy6lsAaIxmXtw07HFltWWw80IKM6-mYBcfaYMoZknZZVgq3kZrc1qSweXfN2qPWpzMAXN-QVBIeevxA/s1600/P1150804.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEia-lE5v8XaOncfzIxVJ4ftk7-_fbMKBRnE-EAhT7X6GV-LVf3asTqktBzjN8LCy6lsAaIxmXtw07HFltWWw80IKM6-mYBcfaYMoZknZZVgq3kZrc1qSweXfN2qPWpzMAXN-QVBIeevxA/s320/P1150804.JPG" width="320" /></a></div>I'm very thankful for my relationship with my dad, and I'm very thankful for an awesome husband who is a hands-on dad! He's a great father, and very affectionate with his kids. I'm blessed to have him as the father of my kids!!Brooks Family Red Thread Journieshttp://www.blogger.com/profile/11145492897290327969noreply@blogger.com0tag:blogger.com,1999:blog-5694947744839164544.post-50996237955060252522012-01-12T14:15:00.000-05:002012-01-12T14:15:10.032-05:00Wordless Wednesday.... 1 day late!!<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhpgzVAsMR0jFU8j6r3s9vx1fJGx0FDfXrSmxEDRq7s644rVtgSvRHq5U2HHa2K1nSNOENVOmLF9EAg7ef_76a1lIVsG3fbdsvCJQ74FavsGNdPw4QUhN6JNtjQUlNmRqfqM3EkRQ7Yyw/s1600/Santa+2011+001.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhpgzVAsMR0jFU8j6r3s9vx1fJGx0FDfXrSmxEDRq7s644rVtgSvRHq5U2HHa2K1nSNOENVOmLF9EAg7ef_76a1lIVsG3fbdsvCJQ74FavsGNdPw4QUhN6JNtjQUlNmRqfqM3EkRQ7Yyw/s320/Santa+2011+001.jpg" width="228" /></a></div><br />
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<div class="separator" style="clear: both; text-align: center;"></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiuvzmeDXqvPopF3QgOZUk0PztdplwFcZOxXoeqc4EpJHgPIap8E0BUcx-LE0HnDt8ygl5GgqXVYpKCNkn79x2LfUEUaCokQqFWep0o-eKm5D50FntLQlFvW3OHPmA2BB5XFd-jZ2WG9g/s1600/IMG_0029.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiuvzmeDXqvPopF3QgOZUk0PztdplwFcZOxXoeqc4EpJHgPIap8E0BUcx-LE0HnDt8ygl5GgqXVYpKCNkn79x2LfUEUaCokQqFWep0o-eKm5D50FntLQlFvW3OHPmA2BB5XFd-jZ2WG9g/s320/IMG_0029.JPG" width="320" /></a></div>This was a look back at a few pics from October, November & December... next week, New Pics!!Brooks Family Red Thread Journieshttp://www.blogger.com/profile/11145492897290327969noreply@blogger.com0tag:blogger.com,1999:blog-5694947744839164544.post-8678399169347061092012-01-09T12:29:00.000-05:002012-01-09T12:29:01.677-05:00..... 5 days lateSo, in my New Years blog post, I said I was going to blog more, and one of the ways I was going to do that was with Wordless Wednesday!! Ha Ha Ha!! I'm 5 days late with that post, and now it's not wordless anymore either! The following pics are some of my favorites from our trip to Alabama last fall. Emmie LOVED playing in the leaves!!!<br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgC0ZQaQg1oACmT86ddV-pPNThAnvBwmOKR1Cz-EFtwFThAzUySMXgaphWRpV8VUlBP1f2celTb49epWoo4AY2hfd7OZuuwwkv5mwPB2za0xspbch8032q82eg8rujwcFmElAP6NbWpbw/s1600/IMG_0213.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="239" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgC0ZQaQg1oACmT86ddV-pPNThAnvBwmOKR1Cz-EFtwFThAzUySMXgaphWRpV8VUlBP1f2celTb49epWoo4AY2hfd7OZuuwwkv5mwPB2za0xspbch8032q82eg8rujwcFmElAP6NbWpbw/s320/IMG_0213.JPG" width="320" /></a></div>Brooks Family Red Thread Journieshttp://www.blogger.com/profile/11145492897290327969noreply@blogger.com1tag:blogger.com,1999:blog-5694947744839164544.post-81894052939649711832012-01-01T13:57:00.000-05:002012-01-01T13:57:16.344-05:00New Years Day......Reflections from 20112011 was a big year for our family! A recap of our VERY eventful year.......<br />
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January 2011: Emmie had her 2nd birthday, and I had my ** birthday! (not 40 yet, but getting ever so close to it!!) Tom got to move back home from Orlando!! Woohoo!! We also accepted an offer on our house, which we had been trying to sell for a year! We wanted to sell, so that the whole family could move to Orlando. I think God was telling us something by letting our house sell at the exact time Tom moved back to IN.<br />
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February 2011: Emmie celebrated 1 year post surgery! Also on that same day Elise was in China celebrating her 1st birthday! Emmie was still struggling with medication dosages, high blood pressure and kidneys disease. We were also in the process of trying to find a rental home big enough for a family of 5... soon to be 6!!<br />
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March 2011: We finally closed on the house!! Still looking for a rental. Tom continued to work from home for the Orlando company. We were also anxiously waiting on USCIS paperwork to go through so we could travel to China.<br />
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April 2011: Travel Approval came from China!! We also moved into a rental house, finally! Emmie also finally started having good blood pressure readings for the first time EVER!<br />
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May 2011: My brother and I headed to China!!! On May 23rd, Elise was finally in her mother's arms! We also found out the rental house we were in was being sold and we had to move out by the end of June! uggg!!! So, the week before I headed to China, Tom & I had to make some major decisions. Are we staying in IN or moving somewhere else. Tom accepted a job in Indianapolis, we did a marathon house hunt the weekend before I left for China, and while I was in China Tom made an offer on a house & the offer was accepted.<br />
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June 2011: I brought Elise home from China to meet the rest of her family on June 2nd. We tried to adjust to 4 kids and help Elise adjust to life with our family, while at the same time packing up and preparing for another move! On June 30th, we closed on our new home, and moved in the same day!<br />
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July 2011:July was all about getting settled! We unpacked, enjoyed our new pool and our new daughter!! Elise was blending in well with our family. We had a visit from Aunt Jenny, Solomon Nana! We also celebrated Elise's 1st birthday (5 months late)!<br />
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August 2011: Brandon started 8th grade and Blake started 6th grade. The boys are growing waaay too fast! Emmie & Elise started going to CMO 1 day a week. (Children's Morning Out... which translates to, Mommy's 1 free morning a week to get groceries alone!)<br />
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September 2011: Elise had laser eye surgery. She did great! Brandon is now in full swing of the football season!! (his passion in life). Brandon also turned 14 this month. Wow how time flies!<br />
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October 2011: Pretty uneventful for us! That rarely happens!! Emmie & Elise dressed up as princesses for Halloween. Blake decided he didn't want to trick or treat for the 1st time ever.<br />
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November 2011: We celebrated the fact that Elise has now been with us for 6 months!! We completed our 6 month post-placement paperwork! We took a quick trip to Alabama to visit Papaw Brooks, Kelly and see Grandma Mary. We also hosted our first extended family holiday in our new house. Thanksgiving was at our house this year and it was great!! Emmie had another heart surgery this month. It went well. She had her stent adjusted and even got to come home the same day!!<br />
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December 2011: Took a quick trip to Gatlinburg TN to have Christmas with Nana, Popa, Uncle Pete, Aunt Jenny, Solomon & Uncle Stephen. It was awesome!! We celebrated our first Christmas in the new house with our newest addition, Elise! It was a great Christmas! Emmie & Elise were so much fun to watch! The boys got dirt bikes & were so excited!! They said it was the best Christmas ever!! We rang in the new year with a few friends in our house! Everyone stayed up, including Elise, who for the first time rang in the new year as a US citizen!!<br />
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Time flies when you're having fun so I guess we must be having fun!! I've learned lots of life lessons in the past few years and I'm sure God is still working on some more! I have made a few "New Years Resolutions" with myself......<br />
1. Blog more!!! I'm taking a tip from a friend's blog and going to try to post "Wordless Wednesday" which will be all pics!<br />
2. Drink more water! and no more diet coke!! I know, call me crazy but I think it's for the best!<br />
3. Get more sleep!! (Don't know how well this one will work out!!)<br />
4. Be more organized!<br />
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Keep looking for more posts in 2012!!! Happy New Year!!!!!Brooks Family Red Thread Journieshttp://www.blogger.com/profile/11145492897290327969noreply@blogger.com1