tag:blogger.com,1999:blog-39216648585569000682024-03-18T20:27:59.231-07:00Missing pieces living with 22q11Kimhttp://www.blogger.com/profile/15028476377707323234noreply@blogger.comBlogger17125tag:blogger.com,1999:blog-3921664858556900068.post-38569291832167927322015-08-13T18:38:00.001-07:002015-08-13T18:39:12.536-07:00the reality of my life with 22q11 The reality .. 22q11 is a hard thing to live with.. the truth its a battle.. the facts its not easy living with the pieces that are known to hold you together. My biggest battle is depression, mood swings, and anxiety. the biggest and worst thing I have ever had to endure is knowing that one day I will have to explain this to my daughter.<br />
Yes I battle depression, being fine one minute and extremely upset the next, wanting a divorce from my husband and wanting nothing to do with my family. Anxiety,, Part of 22q11. I hate it oh yea, I hate it, The headaches the feeling you get that is just sometimes unbearable to cope with. Mood swings.. one of the WORST things to ever battle. the ones you do not understand why you are upset , ok one minute and the world is just awesome the next minute.<br />
The hardest part of all this.. being a mom and having to see your child at such a young age sit and watch her mom experiance a million emmotions at once.<br />
Thank goodness for my family who tries to understand, who tries to be a support system, and who tries to encourage me and keep me going.<br />
What keeps me going.. my daughter. I push through the anger and frustration that I have to live with 22q11 and she doesnt. I am quickly reminded she could have easily faced the challanges that i have to deal with and thank god daily for a healthy thriving little girl that is full of love and joy and such a blessing to have.<br />
My issues for me did not start until later in life. I can hit rock bottom one day and then turn around a few hours later and be fine. I did not want to accept I had a lot of the mental aspects of 22q11 and have been able to live such a normal life until my issues hit around the time i turned 26/28. In fact if truth be told i did not want to accept I had 22q11 at all.<br />
What changed my acceptance? knowing there are others out there that have it like me.. what frustrates me the most.. having to search high and low for treatment for adults with 22q11 and some that are brave enough to tackle a heart patient with depression axiety etc.<br />
I am beyond thankful for my family. They have stood by me through my darkest days when I have before becoing a mom stayed locked in my room and not wanting to come out. My husband has stood by me on those dark days also. I still have my dark days but my little ray of sunshine keeps me going. My life is not easy. 22q11 is not easy to understand. do I regret writting any of this no, . Living with the issues i have and continuing on with life is robably one of the geatest pleasures i have with this syndrome.<br />
I have hit rock bottom while derek my husband was deployed and toughed it out. when I married that is when I finally decided i needed help. that is probably one of the hardest things I have ever had to admit to myself., Getting help was probaby one of the best things I could have ever done. I have even reached the dark days of suicide thoughts. thanks to the love again from family they bailed me out and gave me a dose of reality.<br />
I write this tonight with a heavy heart and the fact that a lot of us out there deal with these same issues. life is tough with this syndrome. we have to eventually attempt life and try to succeed . I am now on medication for depression mood swings and anxiety. I am picking up and continuing on with life again.<br />
being a mom is not an easy task while having 22q, but i get through it. life is tough, but having 22q11 is tougher.. people aways say what doesnt kill you only makes you stronger. I have lived I have achieved and i will survive life with this syndrome. I will go on and raise my little girl and I will go on and enjoy life. Life ws never meant to be easy.. sometiems the good lord above gives those of us an extra challange in life to p rove that we can succeed . Thank you for taking the time to read about my struggle with 22q11 deletion. "Never let it stop you and never let this syndrome bring you down"Kimhttp://www.blogger.com/profile/15028476377707323234noreply@blogger.com0tag:blogger.com,1999:blog-3921664858556900068.post-688222152969536202015-02-07T14:23:00.001-08:002015-02-07T14:23:34.626-08:00a new mom , a new valve and new challenges. A lot have been asking about my biggest challenges being a mom with 22q and CHD to a healthy non cud and 22q baby. I had to take a lot of time and think about my challenges and obstacles I faced now that my daughter is 11 months old.<br />
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My biggest challenges with my 22q issues are only just mood swings and anxiety . I have been successfully able to stay off of medication for a year now. I do best in calm and collected environments and have found recently that a lot of what I eat can also effect my moods. I have tried to eat more healthier and stay away from fast foods and seem to be in better moods.<br />
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With that being said: My biggest challenges have been staying focused on what I need to do from day to day being that Myranda is completely healthy. It seems with a lot of 22qers we have troubles trying focused.<br />
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My other challenges have been accepting the fact that my daughter does not have 22q or TOF like I do since I was told for years that I could not have kids and would pass down everthing I have and they have a higher chance than most with having the deletion and TOF.<br />
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My husband is now out of the navy and working as a civilian. My biggest struggles have been to re adapt to the civilian life. I basically do not have to worry about anymore deployments , i do however miss the military life , but hopefully he is going to be able to re enlist in the airforce soon to finish out the 6 years he had left in the navy.<br />
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I also recently on november 20th had to get a new Pulmonary valve put in . That on its own was a challenge for me with being a mom also. I was up in Missouri at the time (that is where my husband is from ) My valve I currently had due to being pregnant played out which is rare for a bovine. I only had my bovine for 4 years. I went a head and got the melody valve put in via cath. It seems to be doing well now and I am able to keep up with Myranda a little bit better.<br />
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One thing about being a CHD mom that will always be in the back of my mind is that I am slower . I worry about being able to keep up with Myranda as she gets older. I am waiting on the day to come when Myranda asks me about my heart and I plan on telling her the entire story and how she is a miracle to both her dad and I .<br />
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It was hard having my valve replaced and being down for a few days. I could only imagine having to go through a complete open heart surgery and being a mom . It killed me not being able to pick up Myranda for a week.<br />
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I am looking forward to this next year and what life has in store for my husband and I. My life has always been an interesting journey for some and a lot of hope for others. With the love of my family I have made it this far in life. Being 35 just means beating the odds of very little hope my mom and dad were given. Being a mom with 22q and CHD just means I accomplished something people told me I never would do.<br />
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Life is an open door for accomplishments I have learned in the past few years . I never thought someone like my husband would come along and accept me beyond my flaws. I never thought at 34 years old I would be hearing its a girl and at 35 be hearing her say mama. CHD and 22q does not have to mean there isn't life and you have to live in a bubble. I have done so much that many said I couldn't and am all the time proving people wrong. I may not have been able to hold down a job , but i can at least say I have the most important job of all being the best mom I can be with a broken heart and a few missing pieces to the most b beautiful little angel that we were blessed to raise. I do not regret anything in life I have done.<br />
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Life is not always beautiful, sometimes its just plain hard. it may not always be beautiful but it can be one of the most beautiful rides you will ever take. Don't ever hold back our hide in a bubble. A bubble can only go so far without popping. Get out experience life enjoy it grab it by the horns and keep riding.<br />
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Myranda has taught me one of the most beautiful things in life are answered prayers and god will pay attn to those that deserve it. CHD and 22q doesn't stop me from being a mom . I can only hope and pray that valve procedures get a lot more easier.<br />
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<br />Kimhttp://www.blogger.com/profile/15028476377707323234noreply@blogger.com0tag:blogger.com,1999:blog-3921664858556900068.post-67754553259899469852014-06-02T10:52:00.002-07:002014-06-02T10:52:58.721-07:00my biggest challenges on being a mommy with 22q11 DS I am often asked my biggest challenges on being a mommy with 22q11 ds. I had to take time out to even wrap my head around if I had any challenges at all as everything seemed to come together after having our daughter for me.<br />
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My struggles I had with 22q11 ds my depression and anxiety have seemed to just completely go away lately. My biggest challenges now : accepting the fact that I have a "normal " daughter. At f first after Myranda's amnio results I was in major denial. I did not want to accept the fact she was free and clear of 22q11 DS after it was drilled and drilled into my head that if I did CHOOSE to have children, my children would more than likely be affected by 22q and also my Tetralogy.<br />
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Everyday I look at her I think... I did it I beat the odds how and why I am not sure, I just know that God was on my side and Myranda being 22q11 DS free was the reason she was giving to us after 5 years of struggling how we were going to have a family of our own and how we were going to figure out how to avoid passing on everything.<br />
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Is an amnio worth getting if you have 22q11 ds... YES!! it took a lot of weight off of our shoulders as I wished I was detected as early as children as now. I was not diagnosed with 22q11 Ds until I was 25 years old. I thought if Myranda does have it, I will at least know a head of time and have my ducks in a row when she arrives and know where to turn for the best care of her. I luckily did not have to use those resources I had lined up in case we needed them. Drs were even amazed she was cleared , but did educate me on the fact that if I choose to have a second child ( which Cardiologists of mine weren't allowing because of the current condition my heart has been in ) the second child could be affect and the out come may not be as mild as myself.<br />
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Believing that I did this without all the struggles we thought I would have carrying my own child is another challenge of mine. I did it, I conquered it and will now tell others that ask me for advise on pregnancies with CHD..all I can now say is listen to what your doctors tell you . I was told not to do it and to do it all over again I probably shouldn't have went through with the process , but I just wanted the chance to be able to put it behind me. My doctors finally gave in and willingly gave me the chance to become the mommy I am now.<br />
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Myranda if anything has giving me the ability to focus, concentrate , and even control my depression and anxiety. IF nothing else ever goes right in my life from here on out, I at least have her to go back on and say look what I did when others thought I would fail. People have in fact told me to my face I would fail as a mother because of my disabilities. I took that on as a challenge and am proving them wrong daily.<br />
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I do have my days where I want to break down and cry, but when I look at the sweet little miracle I was blessed with today I learned that everything just falls together for a reason. I may have failed at things in my past , but one thing I will not do missing pieces or not is fail at being a mom. Life is is so much simplar now. I feel more human and more complete.<br />
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I know life is full of challenges , but to me life with 22q11 and being a mommy has turned more into an adventure than a challenge. I surpassed one of the biggest challenges on just even becoming a mommy and I would not trade this adventure for the world.Kimhttp://www.blogger.com/profile/15028476377707323234noreply@blogger.com2tag:blogger.com,1999:blog-3921664858556900068.post-90204328458001868102014-05-28T11:04:00.002-07:002014-05-28T11:04:30.673-07:00Where Have I been and Why Haven't I been blogging?!?!?! Where in the world have I been lately and what has been my excuse for not blogging?!?! Well , the last year or so has been crazy hectic. on August 26th 2013 Derek ( my husband ) and I found out we were expecting! it was an exciting time, but scary time , since I have tetralogy of fallot and 22q11 DS. We did not know what we were going to do , what road we were going to go down, but we both knew that even tho doctors told me not to have a child of my own because of my TOF, we at least wanted the chance.<br />
It was a chance we did not know the outcome of, however we felt that God has given us this once in a lifetime opportunity in this point in our lives for a reason. I found out in Gulfport , Ms where Derek is stationed. I then finally got the courage up to tell my family as they had always encouraged me to adopt , because of the chances of passing 22q11 DS and TOF. I had a cardiology appointment in October of 2013 and knew right then and there Dr. Book would decide my fate of going on with this pregnancy or if we would have to terminate due to my valve pressures not being the best at the moment.<br />
At this appointment I sat down with Dr. Book my cardiologist, and promised her IF at any given point if i got into trouble I would agree to terminate or we would take the baby early if able too. I also had agreed to a fetal echo and amnio as well. A lot of people may look down on me for this decision but in our best interest we also agreed to terminate if the baby had 22q11 , because of my husband being military and myself having 22q11 plus a complicated case of Tetralogy of fallot, we were unsure if i would be able to care for a child 6 hours away from home that had 22q11ds. I then was told by Dr. book that this was going to be a roller coaster and would not be an easy ride and I would have to come see her monthly and move back to ATL.<br />
So, I picked up for the next 7 months and moved back home to ATL , GA where i am originally from and my husband had to stay behind due to being active duty military.<br />
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month after month it was appointment after appointment. I went for a fetal echo and to many answered prayers it came back negative that she did not have Tetralogy of fallot. I then sat and waited for the amnio to come back with the fish test and to our surprise it came back negative she did not have 22q11 DS. Many will ask me why or how this is even possible since I am a carrier of both. All I can say is that the odds played in my favor and that our little girl is a blessing.<br />
at around 33 weeks i started to finally hit the roller coaster. Due to being on lasix's i began to have fluid issues and keeping fluid around the baby. my once a month appointments turned into weekly to monitor fluids. At my 35th week appointment my blood pressure was extremely high and fluids were back down again and I was admitted on March 5. On March 6th Our little blessing Myranda Grace Brown came into this world VIA c section at 2:15pm weighing at 4 lbs 10 ozs extremely healthy just tiny!<br />
While Myranda was healthy and perfect, I on the other hand was struggling with fluids. I ended up staying in the hospital for 5 days due to having to drain fluids off so that it wouldn't add anymore stress and pressure on my heart.<br />
People always ask me if i would do this all over again.. honestly I can say NO. Why? because it was a lot of strain not only b wing away from my husband , but having to worry about going into heart failure or all the other possibilities that could have happened that didn't. Another reason why I won't do this again is that I may not be so lucky the next go around because of all the strain the pregnancy did put on my heart, i may not survive and also may not have a healthy child the second round. I did it right the first time and certainly had God's blessing and hand on me for 8 months he never left me and answered every prayer I had. SO now with great pleasure I want to introduce to you our miracle Myranda Grace Brown .<br />
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<br />Kimhttp://www.blogger.com/profile/15028476377707323234noreply@blogger.com0tag:blogger.com,1999:blog-3921664858556900068.post-35809964721653617992013-06-08T20:35:00.000-07:002013-06-08T20:37:25.643-07:00weight....big obstacle...where has it gone?A lot of you know I have been working really hard to lose weight. As a CHD survivor who has had roughly 4 open heart surgeries in my lifetime, for once in my life when I hit my 30s I began to struggle with my weight. My last OHS ( open heart surgery) in 2010 I had retained a lot of fluid. I then started the real battle with my weight.<br />
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I lived somewhat of a stressful life when I turned 29, I married my hero. Sure every woman thinks that they marry their hero and their knight and shinning armor, but no, I really had mine. He doesn't wear a cape, he wears combat boots and dog tags and our nations military uniform proudly.<br />
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Starting out as a newly wed military wife can of course no doubt be stressful. I got married in May 2009. My husband had just returned from a 6 month deployment in Afghanistan. June, july, august rolled around and in mid August I was just started to have what they would call heart failure signs.<br />
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My cardiologist knew my PVR ( right pulmonary valve ) would need to be replaced and we were trying to plan that out and schedule it. However from August on I like I mentioned was little did I know heading into heart failure.<br />
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I was getting more and more tired and short of breath. I was feeling a pressure build up around my chest like I was told. We thought that I would be able to schedule the next replacement and be able to wait for them to complete the valve placement via catheter and get approved to have it done on me instead of a full blown OHS. However, this was not the case.<br />
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January 2010 shortly after my 30th birthday, and the day of the Haiti earthquake, I woke up feeling like I couldn't breath and basically felt like my husband was standing on my chest with his entire platoon. He was in a briefing for the earthquake as I was texting him telling him that I needed to go to the ER.<br />
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W'hen in a briefing he cannot look at his phone. Finally and luckily we lived on base at the time he rushed home and took me to the ER. We got to the other base where my cardiologist was and she had staff waiting for us. She did an ECHO and said that I had retained 750mgs of fluid in my chest and if I would have waiting any longer or another day I would have died.<br />
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I was flown to Mississippi back home to Atlanta to Emory University where my cardiologist team resides. I remember IVs with nothing but lasix trying to push the fluids off of me so I would be stable enough for them to do the surgery.<br />
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Surgery was done, I had a lot of scar tissue built up from having previous surgeries as a child and being 30 years old it was tough for my surgeon to get thru it. It took me longer to recover since I was older. It took longer for my lungs to function and make sure that the bovine valve was not going to reject.<br />
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After I was taken out of ICU and put onto the floor, My doctors told me that it was very crucial that I lose weight. Before my surgery was done, because of all the fluid i had retained, I was close to weighing 200lbs and have a 4 ft 11 frame.<br />
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I was sent home. Went to my parents house who lives in Atlanta to start recovery process. After doctors okied me to go back to Mississippi where Derek is stationed, I begin the weight loss struggle.<br />
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My husband shortly left on a 10 month deployment, the longest deployment we have ever had since we have been together. I begin trying to lose weight then. However I started battling issues with the area that the by pass machine was put in. They did not staple it shut or stitch it they just clamped it. It kept coming open, I kept making ER trips. Finally it heeled.<br />
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Ok so 15 lbs lost while the husband was gone, that was weight watchers, a lot of point counting a lot of having to remember what I had to eat to be able to track and write down. Husband comes home, I gain 15lbs back and get depressed and give up. Husband is home for a year and then left for kuwait. I said ok I am going to surprise him and lose weight this is going to be the year FAIL. Depressed frustrated again.<br />
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2013 , struggling, having depression, fighting for rights to my stepson, husband going to a new command, husband trying to advance to first class. We have been fighting . Emotionally physically just want to give up. I go home to atlanta and ask for help from my cardiologist.<br />
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Basically this visit I was told since it has been 3 years that my valve was put in, they were concerned since i seemed to have 50% pressures. I was given three choices 1. follow their diet plan or not and 2. have a heart cath done to try and stretch the valve, if not that last option would be another OHS. I said no to 3 and 2 and YES to 1.<br />
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Whats my secret to 3 pant sizes in three months??? Now I would not suggest this to all heart patients or to anyone, ask your doctor first. Since Feb. of this year I have never EVER been successful at a diet then what I have now. I was told if I followed what they tell me to do I would see inches come off like nobodies business and could save my valve.<br />
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NO BREAD NO SUGAR NO JUNK FOOD NOTHING WHITE NO POTATOES, NO SODA NOTHING FRIED. Everything was based around salads a meat and some kind of protein and 1 egg and 2 egg whites any time of the day. Breakfast i could have eggs, bacon coffee or water. Lunch some kind of meat a protein some kind of green vegetable or any kind of vegetables, and salad, Dinner would be the same as lunch. NO prepackaged foods. Also lastly WALK.<br />
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I have leslie sansone walking dvds a good CHD friend has recommended to me that are fun and I love doing I can walk 1-5 miles. I walk 3 times a week and am about to start walking everyday. Dec-Jan I was about a size 18 now I am a size 12 almost in a size 10. The diet works. However I would still consult a doctor.<br />
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I eat what i want to on friday and saturdays and on sundays I go back to what im supposed to be eating. I have noticed a significant difference in pictures from 2010 til now. I have noticed a difference in my moods and also I am dealing less with depression and anxiety. <br />
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So this was a long post. You asked , I delivered. At 33 years old and have already experienced what most older people would have experienced if they had heart disease, I quickly learned that my life can be taken from me at any minute. I learned my heart can only take so much and that if i have to have another surgery at this point I may not survive. I did this for my heart, for me , for my family and by 2014 there will be a new me. I am glad i did this glad I started this journey, God has more in store for me then what he is letting on.<br />
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I hope this finds people encouraged. It is important for us to take care of our hearts, ourselves, and ou health. Thank you for taking the time to read my journey to what made me start the weight loss process all over again. feel free to comment and feel free to follow me!<br />
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<br />Kimhttp://www.blogger.com/profile/15028476377707323234noreply@blogger.com0tag:blogger.com,1999:blog-3921664858556900068.post-68743162169739715282013-05-29T17:45:00.001-07:002013-05-29T17:45:20.566-07:00Memorial Day weekend craziness!! but loved it!This past weekend I could re live all over again. We went to Florida for Memorial Day weekend. Derek had a 4 day weekend. We also had to visit my stepson this month started our visitation schedule. Friday night we went swimming at my parents condo in Daytona Beach. Saturday we ended up going to the Magic Kingdom. I had no idea I would be able to tolerate a packed theme park on a holiday weekend and to my surprise I did very well.<br />
I just got over dealing with anxiety. I am and have been basically taken off of my anxiety medication , Klonopin which is a huge step for me. I thought I would have to go back on it and start taking it again because of the crowds but that was not the case. I lasted all day at disney and had a blast did not even think about me having 22q or any of my other issues. I enjoyed time with my stepson .<br />
Sunday we spent a afternoon at the pool. I stayed most of the time in and out enjoying the long awaited two years of this time that we are now getting. Sunday evening we went to a local restaurant. Nothing like florida seafood since, we live near the gulf of mexico, Florida food is always different. We ordered gator tail and got my stepson to try it and he loved it!!<br />
This month my husband and I also celebrated 4 years of marriage. What away to end a great month spending it with my stepson and husband as a little family that has been a long time waiting to happen!<br />
Next month we go and pick him up fathers day weekend for the summer and have a lot of things planned.<br />
This is a new thing for me but a wonderful thing, I am enjoying every minute of it, loving being practically rid of anxiety and on one less medication. life is good life is great prayers do get answered and life couldn't be any better for my husband and I.<br />
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<br />Kimhttp://www.blogger.com/profile/15028476377707323234noreply@blogger.com0tag:blogger.com,1999:blog-3921664858556900068.post-51446948761869736342013-05-20T10:19:00.002-07:002013-05-29T18:32:57.680-07:00Why awareness jewelry?A lot of people have asked about my jewelry and why I started doing what I do for 22q..so here is why....<br />
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I noticed that there is not much out there for 22q, i myself have it at 33 years old and was diagnosed at the age of 25. I was searching for ideas to not only keep me busy but away to bring in some income as well.<br />
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I started my company Skattered Pieces in 2012 last summer. My husband is military as most of you know so I needed something to keep me busy. Although he does not deploy he can sometimes work long hours, and with the passion I have for raising awareness for 22q11, I thought what no better way then to make something that sparkles and shines and great conversation pieces.<br />
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I am a self taught jewelry artist getting into all kinds of things like metal, beads, and wire. I tried the clay stuff but found it can make me break out etc. I found to grow really fund of hand stamping and wire wrapping.<br />
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I have made close to 53 sales, and a lot of my work has gone all over the world. I am a stay at home wife, and even have a college degree, i however chose to do my own thing where i can work in my home so that i would have more time with my husband and family.<br />
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Sparkling is apart of me and who I am. The more sparkle the better i have always said. I love anything that sparkles wether its the sun, glitter or jewelry. I can guarantee that I always come out with something original and never done before that will catch an eye or two.<br />
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I also thought, what a great way to share my 22q story and talents with other 22q families who makes a purchase from me, I do try and remember to include my story and a letter of encouragement to families.<br />
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I have a lot of ideas, a lot of hopes, and a lot of plans. I hope to eventually start sharing my story more and even traveling to different 22q events around the country. I hope you find my page on facebook under Skattered Pieces.<br />
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I came about Skattered Pieces, because with my little mind and having 22q i can be sometimes scattered and also i have so many ideas and different materials I work with.<br />
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I have enjoyed my hobby and turning it into a business that I have grown to love and best of all it is something i have a passion for and raising awareness at the same time. I hope you visit for more ideas and watch for new things monthly. I always try to have something new that has never been done being that I love a challenge and that since my life in general from day one was a challenge . i always love trying something new.Kimhttp://www.blogger.com/profile/15028476377707323234noreply@blogger.com0tag:blogger.com,1999:blog-3921664858556900068.post-34521099482828983682013-03-18T13:07:00.001-07:002013-03-18T13:07:37.169-07:00Vcfs bracelet can be made for 22qAll these items can be billed via PayPal I do ship world wide prices will be posted soon <br/><br/><div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEirdAyX1did9haogBdbJSR7g8mUYLYFYZyUlvypifXTBqE10ULE_oL5KR7-G9rTqIgOm_llLfCu6Z_NtR7807e529hv0yDrgKzFe5THwT5X-7zXH4DFsMR0TfYduwBpbM6iOqQweuFlSq1m/s640/blogger-image--1963719996.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEirdAyX1did9haogBdbJSR7g8mUYLYFYZyUlvypifXTBqE10ULE_oL5KR7-G9rTqIgOm_llLfCu6Z_NtR7807e529hv0yDrgKzFe5THwT5X-7zXH4DFsMR0TfYduwBpbM6iOqQweuFlSq1m/s640/blogger-image--1963719996.jpg" /></a></div>Kimhttp://www.blogger.com/profile/15028476377707323234noreply@blogger.com0tag:blogger.com,1999:blog-3921664858556900068.post-65423974270169803182013-03-18T13:05:00.001-07:002013-03-18T13:05:56.115-07:0022q tshirts <br/><br/><div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiezgxGawL-Ur_qSRgcvKOBm8SEdSr76t4wRI1czs1lk2uIIN9t_sK5cpStOkZkWv8gUFPtHNAIO58ZYPTtZSyLBt0_XE3hYpMKPY99TIFMHRjgwqzfT39S1XvyATG0w_B8fQ2QKxp7M-QX/s640/blogger-image-1819403915.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiezgxGawL-Ur_qSRgcvKOBm8SEdSr76t4wRI1czs1lk2uIIN9t_sK5cpStOkZkWv8gUFPtHNAIO58ZYPTtZSyLBt0_XE3hYpMKPY99TIFMHRjgwqzfT39S1XvyATG0w_B8fQ2QKxp7M-QX/s640/blogger-image-1819403915.jpg" /></a></div>Kimhttp://www.blogger.com/profile/15028476377707323234noreply@blogger.com0tag:blogger.com,1999:blog-3921664858556900068.post-67757877538099873652013-03-18T13:04:00.001-07:002013-03-18T13:04:50.365-07:00New jewelry coming soonI have been working hard on jewelry thinking to myself that there is no awareness jewelry for 22q I have more stuff coming :) <br/><br/><div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh4roO2WT0TBxqM7A8nO5KNQDPm7pSEpKw5zGRlGSvFowN5TeqhALAtY5ItJJJUFw2OtkpWZkbqOP28cb7CCIdEB_9tySRm5T-tIKCoFYFRGqxblghFs_COdDcunxhkcVhcaWjV-83zVzSj/s640/blogger-image-1970674159.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh4roO2WT0TBxqM7A8nO5KNQDPm7pSEpKw5zGRlGSvFowN5TeqhALAtY5ItJJJUFw2OtkpWZkbqOP28cb7CCIdEB_9tySRm5T-tIKCoFYFRGqxblghFs_COdDcunxhkcVhcaWjV-83zVzSj/s640/blogger-image-1970674159.jpg" /></a></div>Kimhttp://www.blogger.com/profile/15028476377707323234noreply@blogger.com0tag:blogger.com,1999:blog-3921664858556900068.post-27742684353322033712013-03-12T09:18:00.000-07:002013-03-12T09:18:32.417-07:00What's new? What's up?, what's been happening from then til now...What's up, what's new, whats been happening from last year when I last entered a blog til now. Where is life leading us, where do we go from here?<br />
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A lot of questions and a lot of answers. I realized I have not written on my blog in awhile after I looked last week while home visiting my parents house. A lot has been happening since I had last written. Your what's up, what's new what's been happening from last year until now is about to be answered as short as possible, but we all know that won't happen. A lot of catching up, a lot of answered questions!<br />
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So, Derek has been home almost a year. A LOT and I mean A LOT has been going on with us. We have had many challenges etc come our way and some how we managed to hold up together and smile and become even better than we have ever been before.<br />
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We are still in Gulfport. We have about another year or so here so we think. Health wise, we have had a few little scars and miss diagnoses from doctors here that led to me having to go back home to my original doctors and get straightened out. My last cardio visit was ok not what we wanted to here, but doc is giving us a chance to get things turned around. My Pulmonary valve pressures have gone up since a year and a half to about 50%. A lot of it is due to stress and weight gain , which is why i am forcing myself to the diet and exercise routine that has been given to me by cardiologist. Other then that health wise things are ok.<br />
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We began the adoption journey and was going to adopt, but discovered another route to go but for now we are concentrating on my health and other things we have going on. I am still making jewelry and also just recently became an origami owl rep and selling living lockets which are the cutest things ever!<br />
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It looks like Georgia is on both of Derek and I's minds next year as we possibly face becoming a civilian family again. I had no idea Derek's contract was almost up. We are hoping for him to be able to stay in , but we will take on being a family again with the civilian life and enjoying being under one roof. We chose Georgia because doctors are there and my family are there. Once you get too many doctors on your case especially with TOF , you can get yourself in a mess which is what happened but thankfully i am straightened out and headed in a different and new direction.<br />
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I am getting used to him being home and really enjoying it. We have been able to spend the quality time together that we deserve and needed to have. He has deployed for the past 3 years we have been married and this year for once he will be home for our 4th anniversary. Hard to believe I have been married for 4 years and have made it this far with all of my issues and having 22q.<br />
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having 22q has not stopped me. I am a military wife, a step mom , a kind loving person that just enjoys life all the way around and not taking anything for granted . I cannot believe how much I accomplished and what I have accomplished since moving 6 hours away from home. I never thought that would ever happen and when it did May 2, 2009 I have not regretted it at all. I will be writing more and more this year since things are calming down for us and getting back to normal. I will answer the one question I always get how do you handle being a military wife with the journey of life that you had to face. I hope everyone has a wonderful week and if i don't get on here before easter , I hope everyone has a wonderful easter.<br />
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For anyone interested in an origami owl living locket please visit my website www.kimberlybrown.origamiowl.com . every life has a story!<br />
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take care, and always hope for Peace, Love, and a Cure for 22q and TOF!<br />
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Kimberly A. BrownKimhttp://www.blogger.com/profile/15028476377707323234noreply@blogger.com0tag:blogger.com,1999:blog-3921664858556900068.post-6123076048652030842012-10-22T19:15:00.001-07:002012-10-22T19:15:40.360-07:00way too busy of a weekend...... Friday started out a short day for the hubby. We also had a busy night plan. IF it was not for the new medication I am on for my depression etc, I probably would not have gone out all weekend like I have done.<br />
I went friday night to see one of my favorite country artist Clay Walker. I have been following him and his music since the 1990's. He was at one of the local casinos here in biloxi the hard rock casino/hotel. We had front row seats it was loud , but as always a great show.<br />
He talked about him being diagnosed with MS. also said that how doctors gave him deadlines and how he would be in a wheel chair by this and this time. Needless to say he beat those odds like a lot of us CHD and 22q11 babies do. He did say one thing however, that stuck in my mind all weekend that we have to do our part and beat it and not let it beat us. That entire sentence is very true and I think a lot of people tend to forget that and let some of this stuff beat them.<br />
Saturday we went car shopping since we put in for adoption we decided to also go down to one car and a SUV so that I would have something easier to hall kids around in that seemed to be successful and I think we found a ford explorer that the hubby and I both really liked, and we went shopping for theater seating as well since we do have a media room with a projector in our home in one of our spare bedrooms. Also Saturday night we went out for sushi etc. with some old friends of ours Mike and Brooke, who was in Derek's previous battalion with him and just got back from Afghanistan not long ago. As always we have fun together and I have known mike for a few years and we always have some good laughs about things we have done together in the past.<br />
Sunday was a lazy day. We have been talking about painting our living room. I had done an award wall for Derek and all of his military awards that i had framed. I enjoy showing off all of his awards, coins and also his plank ownership award as well as a beautiful hand painted seabee plate that was given to him in italy when he lived there for two years. also I have hanging on the wall both of his re enlistment certificates. I picked out a red color to bring out some of the other decor from sherwin williams. the red i picked out was from a martha stewart collection from home depot and sherwin williams didmt carry martha stewart but tried to match it as close as they could. we got home with it and it was way off and the nice lady called back the next morning to tell us to bring the paint back and she would help us pick something else out and refund our money which was GREAT customer service on their part.<br />
IF it was not for my new meds like my Wellbutrin, I probably would not have gone and gone and gone all weekend like I have done. I seem more up beat and not as all over the place like I have been before. My moods have been better and so has my depression. My anxiety still needs some work done on it but I go back to the doctor thursday to talk to him about it. My klonopin just puts me to sleep more then helps, but it does take away the anxiety headaches.<br />
This weekend flew by but it was a fun weekend. I enjoy getting out a little more now then I did before> I also got an email back from my cardiologist saying that she just wanted to see me back in six months instead of 3-8 weeks , she stated that she will do a MRI the next visit and check lung pressures more closer etc. Today I also got out and did a little bit of exercising and actually did a little bit of house work.<br />
I feel better, I feel normal , and most of all my happiness is coming back. I hope this feeling stays around and I hope this change stays as well. We have a busy week. I have had some orders from my etsy store come in over the weekend , and also today as well. I mailed some off this evening. I will be staying around the house this coming weekend as my husband goes to FL to visit with his little boy for his 9th birthday, Things are looking up and best of all things are looking good there is no reason to turn back now.<br />
As clay walker says in one of his songs. " I don't give a damn what the world says, I am gonna do what I was born to do. no turning and no running." Those are my new favorite sayings and a new things especially with 22q and CHD to live by.<br />
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Signing off for the night, I have been finally sleeping a little bit better since i feel like a normal person now. I hope and pray everyone has a blessed week. I also will pray for all of you CHD/22q moms and survivors out there that may read my blog tonight or this coming week and please comment I would love to hear from you. Good night and God bless you all.<br />
<br />Kimhttp://www.blogger.com/profile/15028476377707323234noreply@blogger.com0tag:blogger.com,1999:blog-3921664858556900068.post-78793192941089557712012-10-12T09:19:00.001-07:002012-10-12T09:19:15.985-07:00new journey This week we began a new journey, in our life. We were told that due to my heart condition, I would not be able to have children on my own. We begin looking at other routes. We have been back in forth with several different option and have done a lot of discussing different options.<br />
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After my husband spent a weekend in Florida with his son, he came home and surprised me with filling out adoption papers for the state of Mississippi for a child of our own. We have done tons of research and decided this was the best route. We have learned there are a lot of Military resources and also grants to help with the cost of adoption.<br />
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It will be a lesson of patients and waiting and handling emotions etc for both Derek and I. Derek is home for 3 years now and in a new command and will not have to leave UNLESS he chooses to go on an assignment himself and go help out the army. We had talked about starting a family while he was gone since he will be home for awhile and won't have to leave and here is the details below on why i could not handle carrying my own child and why i did not go the surragancy route.<br />
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Basically my lungs would not be able to handle a pregnancy once i got to full term, I probably would not even make it to full term with all the pressure etc it can put on me. My body would just not be able to handle it. My heart also with a leaking tricuspid valve still and my PV still at a moderate leak would be in danger as well. It also with the medication i take would not be a good idea. Plus i would take the chance of passing on not only tetralogy of fallot, but also my 22q11 deletion.<br />
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now there is ways to keep from passing 22q11, but we would still be facing passing on the tetralogy.<br />
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In the meantime I have learned that there are over 2,000 children in the state of Mississippi available for adoption. So therefore we have gone on with the plan to adopt and have mailed out the application and will begin that journey.<br />
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I was sadden that i could not have my own child, but picked my self back up and with the support of my husband once again and my family found another way to get that dream of mine to come true to become a mother.<br />
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We will share our journey with every own through our blog and fb. We are at step one right now and just have to wait for step two. We are both excited, but both have mixed emotions about this, but in closing this blog I will say, this is our best option, we will have a healthy child, and this will be an experience for the both of us and most of all cannot wait for our new addition.<br />
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<br />Kimhttp://www.blogger.com/profile/15028476377707323234noreply@blogger.com0tag:blogger.com,1999:blog-3921664858556900068.post-40523162507709347082012-10-07T07:40:00.001-07:002012-10-07T08:38:56.028-07:00been busy....<div style="text-align: center;">
Lately I have been busy. I have seen a new doctor to help me with my mood swings and irritability , and also depression that I have been fighting with because, of my 22q. I have had a lot going on. My husband gained visitation rights to his son recently who lives in Florida. That in itself has been a major challenge for me. He can only be around him right now to reestablish a relationship with him.</div>
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I can understand that to an extent, but it is HARD to let him go and be with his child when you have to stay behind.</div>
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We were recently told the week before he left that I would not be able to handle a pregnancy due to lungs not being able to function for two people and my body not being able to handle extra weight. That set me back into a bad depression mode, but we are NOT giving up on trying to figure out how to get a child of our own.</div>
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I have delt with many challenges this week. IT seems the devil was constantly working at me. Thanks to my new doctor and my medication that is currently helping out quite a bit the devil DID not win and get the best of me totally.</div>
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I did in that period of time lose interest in my craft room and got behind on my orders that I had that came in.</div>
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I had to explain that to some costumers, some understood and there is always one that did not want to understand my situation or seem to care about situation and yet his child has 22q also. Everyone deals with 22q differently, everyone has different symptoms of 22q. I was judged by this parent who placed an order from me because I did not ship his order right out to him and was compared to a big cooperate company such as Apple since he said he got his Iphone faster. He placed his order on september 28, that point in time my husband was in Florida with his son. I cannot drive due to some of my meds that i take for my 22q and anxiety. I explained to him nicely. He told me he needed the order for an anniversary that was last weekend BUT did not tell me that when he placed his order. I always believed in the saying from Abraham Lincoln that you can please some of the people some of the time and most of the people most of the time, he was one of those. He was very rude to me and I do not handle rudeness very well with my 22q. My feelings easily get hurt and are hard for me to control and sometimes it takes me awhile to get over something like this situation because he insisted on trying to bash me on a public Facebook page instead of bringing it to my inbox ,email or etsy page.</div>
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I seem to believe that some parents do not understand fully 22q. I see some wanting to be bullies to some of us adults with it on some of the support pages which is NOT right. Like my mother says there has to be ONE in every crowd. She is right. I ended up refunding his money and did not get his order out since he did not seem to care about my situation i was dealing with last week. and honestly if this was an anniversary gift for last weekend he waited too long to order the item in the first place.</div>
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One thing that is hard for me to handle with my 22q is rude people. I will not tolerate people being rude to me, I will fight back and that is what I did. In this world today it is full of rude and unpleasant people. One person can start making a difference by trying to be nice and support people like I try to do in a lot of the support groups.</div>
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This past month has truly been a life lesson and a testing lesson for me. I am slowly coming out of depression mode and starting to feel normal again. My husband told me last night he was starting to notice that more and more since my medication was upped a bit more. It is great to feel like a normal person again, I am taking things one day at a time. I got most of my orders i got behind on due to my depression mailed out yesterday. I want to thank the people that understood what I was going through, feeling, and being faced with.</div>
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22q is a never ending journey and adventure. For some its mild , for some its severe. but for me it is mild and I am quite thankful. I do struggle and I let it be known I struggle. I do not hide it from others and I educate others. I am thankful for some of the friends that I have that do NOT judge me and that accept me for who I am and what i've got. I am grateful that i have such a supportive husband and family as well, without them I wouldn't be the happy,bright and caring person I am today, encouragement for us 22qers indeed goes a long way.</div>
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Derek and I are facing choices, also a journey up ahead. As my favorite country music artist said in a song, " ITs a long road up ahead I don't give a damn what he/she has said I'm gonna do what I was born to do" that line has stuck with me and continues to do so. My life is a journey, my life isn't over. my life has a purpose and I will continue to share it with you all as long as I am able.</div>
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I will have another blog and announcement this week once we get all details done.</div>
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To anyone reading, THANK YOU for allowing me to share my journey.</div>
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I have enclosed a link to my etsy shop of 22q jewelry that I have created and other items that I have made for awareness for 22q. Keep checking for other things. My christmas order deadline will be Nov. 15. If anyone wants to order jewelry for christmas please have orders in no later than that. Thank you all have a beautiful sunday and a beautiful week.</div>
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<a href="http://www.etsy.com/shop/SassyBeeDesignsInc">http://www.etsy.com/shop/SassyBeeDesignsInc</a></div>
Kimhttp://www.blogger.com/profile/15028476377707323234noreply@blogger.com0tag:blogger.com,1999:blog-3921664858556900068.post-22902600544215962762012-09-25T05:17:00.002-07:002012-09-25T05:17:34.609-07:00new things Today we are going to meet a new doctor. Seems like us people with 22q is always meeting new doctors. We are going for help with my mood swings, anxiety , and also depression that a lot of my fb friends does not KNOW i battle with constantly. Even though I have lasted this long without any kind of meds for my depression I can tell that it is taken a major health toll on me and before it gets any worse and before I get any worse, I feel that it is time to get the right kind of treatment and quit trying to ignore it.<br />
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Depression can take a toll on marriage, life, just about every aspect of a person. Anxiety is something I have never had until my husband and I started to fight for rights to his step son. Anxiety can break you, trap you, make you have the worst feelings in the world that no one could image that has never had anxiety so bad that it takes medication to treat.<br />
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With my 22q I am always up , down, and all over the place. Without the support of my family, I probably would not have made it this far in life. There comes a point to where you have to stop and realize that you have something that YOU NEED help with and NEED to accept. That is still an on going battle with me. ADMITTING is the FIRST STEP.<br />
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I know that it will take awhile to find the right kind of meds. But, going in the right direction and stepping up and getting help will only make me better. 22q11 has a ton of different symptoms. I am lucky to only have the heart, learning disabilities, mood swings, depression, and the anxiety part. I also have a few of the facial features as well.<br />
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I feel parents should be thankful today that they are able to get a diagnoses so early. I have gone 25 years without knowing. NOT knowing why I struggled so much, we knew part of it was because of my tetralogy of fallout, but had NO IDEA I was missing a chromosome.<br />
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I am also working on new jewelry. That is one reason why I labeled my blog new things. We are also discussing adoption again. My doctors just decided that my body would not with hold a pregnancy, but keep in mind that a lot of TOF cases are different some were able to have children some aren't.<br />
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I am still waiting to hear if I get into culinary school. I am also looking at doing a few photography classes offered at the local community center. I recently took pics of a friend that just got back from Afghanistan and cannot believe how great they turned out.<br />
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22qers have a lot of hidden talents. I think that it is important that we let them out and let them shine. <br />
I encourage all 22q/ heart moms to support and most of all encourage their children.<br />
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Hope and faith goes a long way in 22q11 journeys, believing is a great way to helping us succeed, LOVE is all we need in this journey through our ups and downs. Courage is something a lot of us have and it shows with every battle we face with this.<br />
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22q11 isn't always negative. There are A LOT of good things that can come out of someones live with 22q11. So I am leaving you today with the challange of : ENCOURAGEMENT and BELIEVING that just because we have a disability it doesn't have us.<br />
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<br />Kimhttp://www.blogger.com/profile/15028476377707323234noreply@blogger.com0tag:blogger.com,1999:blog-3921664858556900068.post-54897126604949379182012-09-22T16:53:00.000-07:002012-09-22T16:53:08.886-07:00So I decided to do a new blog. For those that do not know me etc. I am 32 years old , born with the CHD Tetralogy of Fallot, I have had about 6 open heart surgeries. I went 25 years without knowing that I had 22q11. I am originally from Stone Mountain Georgia, currently living in Gulfport Mississippi with my husband who is a US. Navy Seabee. We own our very first own home and he has been serving here for almost 13 years now. I have an older brother and both parents tested negative for 22q. I have a degree in Hotel Management and am looking forward to trying to go to school in January for Culinary Arts Technology . I have an eye for designing my own jewelry and also like to spend a lot of time in my own craft studio. I am working on designing exclusive stuff for the Dempster Family Foundation. I have had many struggles with my 22q11 journey and hope to write a lot more about them here. Thank you all for following ,reading, and if you have purchased some of my awareness jewelry thank you from the bottom of my heart.Kimhttp://www.blogger.com/profile/15028476377707323234noreply@blogger.com0tag:blogger.com,1999:blog-3921664858556900068.post-37630959007895666732012-09-22T16:48:00.001-07:002012-09-22T16:48:23.063-07:00living and loving someone with 22q11 deletion<span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px; text-align: left;">My blog thought for the day : What's it like having and loving someone with 22q.</span><br style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px; text-align: left;" /><br style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px; text-align: left;" /><span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px; text-align: left;">It's dr appointment after appointment, it's trying to explain an unknown medical disorder to those that should know what it is.</span><br style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px; text-align: left;" /><span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px; text-align: left;">It's proving drs wrong over and over that we with 22q can do something they told us we probably never would be able to do. </span><br style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px; text-align: left;" /><span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px; text-align: left;">It's over coming struggles. Sometimes battling depression and full</span><br />
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blown mood swings without knowing why a melt down or two for no reason.<br />It's showing people that even though we are missing a genetic we are still willing and able to show the world what we are made of.<br />Some of us are heart warriors and fight many surgery battles and win.<br />Some of us fight a lot harder battles with vcfs/22q/digeorge syndrome<br />We often ask why but only one person can tell us why we are giving things like this to deal with.<br />Many different symptoms , goes with many different faces.<br />We are still loved by friends and family who are our biggest supporters no matter how bad of days we 22qers/vcfsers /digeorge syndromers have.<br />We teach the very most important lesson to others that life shouldn't be taken for granted and we should all love , hope and pray for a cure , but regardless we are still warriors and fighters and have more courage than one can endure.<br />We will still fight with our missing piece and educate the world on 22q!</div>
Kimhttp://www.blogger.com/profile/15028476377707323234noreply@blogger.com3