Ok so I know I've slacked again! But as we all know this is a GOOD thing!!!!! This means there haven't been many bad moments in a long time! Dharma Rae is getting so big! We have hit a few bumps but luckily not many MCAD related After about a month of mostly pumping we decided to reintroduce actual nursing and we succeeded! Unfortunately that success was followed by failure only a month into it. Each time I would try to nurse she would scream and writhe as if she was in pain. I had to go back to pumping again. I ended up as an exclusive pumper for 5 months. Let me tell you about work! I never realized what work, sweat, and tears went into pumping. After about 4 months of it my supply was dwindling. I knew the only way to up my supply besides the massive amounts of supplements and herbal remedies I was taking would be to get Dharma to nurse again. After many tears she briefly nursed about once a day but it didn't last long. My supply had taken such a hit pumping that it was taking me up to ^ hours in the day worth of pumping to give her just one bottle. I was so determined. I was so upset. And I was so tired and failing as a mother. Analese, my 5 year old, got mad at me one day and yelled "Mom, your so boring now! We dont ever play or do crafts anymore! You just sit in your room and pump!". Thats when it hit me how in my determination I was actually hurting my family. Here I was a mom of 3, in the first year of my youngests life and what was I doing/ I can tell you what I wasnt doing. I wasn't cuddling with them. I wasn't playing. I wasn't laughing and smiling with them. What I was doing was missing out on their lives as well as neglecting household responsibilities to be left to my husband. Thats when I decided to say goodbye to my pump. My goal hasn't changed however. I still plan to try and keep Dharma on breastmilk until she is at least a year old. How can I do that you wonder? I am part of a wonderful community of women. Many of them milk share. Through the help of some AMAZING milk mamas we have kept Miss. Dharma nourished! Im not saying Ive never used formula. Of course Ive had to at times but my goal is to keep as much breastmilk going into her as possible. I am a breast is best believer!!! Ending my pumping and breastfeeding relationship was harder then I thought it would be. When I was pregnant I had this dream of a wonderful nursing relationship. I had visions of rocking a nursing baby to sleep every night. It just didn't work though. It was bittersweet to stop pumping. The stress was off of me but at the same time I had to finally admit that I had in fact finished. I had stopped. It was over. Now that time has gone by and Ive had time to grieve the loss of my perfect breastfeeding relationship I feel a lot better about it. I still get a bit jealous sometimes when I hear success stories or see wonderful nursing photos but I also am happy for them. I have become a major breastfeeding advocate through Dharma. In fact I have talked to my husband many times about possibly training to become a Breastfeeding educator because as I look back I see so many mistakes and wrong moves that I took that may have destroyed our nursing and Id like to help people not make the same mistakes. Dharma has been very lucky with MCAD, only having one major incident and a few minor incidents in the past year. This was a major improvement from what my first year with Bella was! I swear my luck was do to our breastfeeding and natural parenting lifestyle. Maybe I'm wrong about that but I just really feel that it all made a difference in Dharmas life. Bella has done well this year also. She will be 3 in just a month! I know! 3!!!!!!! Its hard to believe that it was that long ago that MCAD snuck its way into our lives. I feel like the last 3 years have been so hard but rewarding at the same time. We have learned so much and with that knowledge we can help spread awareness and information! We only had one very scary incident with Bella. We woke up to her whining in the middle of the night and she was cold, greyish color, and shaking. Her blood sugar was a 38!!! It was very scary but as always her medical team was amazing and we are all ok now! Overall we had a great last 7 months! Even through my failures I've come to see I haven't really failed at all. My kids are happy, growing, and for the most part healthy. I've been doing anything in my power to make the best parenting choices and I feel confident in that! Im not saying my choices are better then others but for us personally co sleeping, breastfeeding, babywearing, attachment parenting just works! It has made a positive impact on all of us, even me!!! I just want to take the time to thank a few different people and groups who we wouldnt have made it through the last 7 moths without. DFW Cruchy Moms, DFW Cruchy Dads, Fort Worth Babywearers, Tarrant County Breastfeeding Coalition, DFW Cloth Diaper Group, Eats on Feets-Texas, Human Milk for Human Babies-Texas, For Babies Sake, and many many many individual people ...without you we couldnt have made it through the very tiring last 7 months!!!!!!!!! A special thanks especially to the Fort Worth Babywearers!!!! You guys have showed us another way to go about our long long long nights. Because of you babywearing has become a lifestyle for us and we can never thank you enough for that. Also the personal friendships that have spawned from your group have been incredibly rewarding. Thank you Morgan for starting a group that changed my life and for your friendship. Rhiannon and John, your friendship is so valued by us. You have not only helped us with babywearing but with many other problems and situations that life has brought our way. Not to mention the role models you have become to Steven and I when it comes to the kind of marriage we want. Jennifer, Stacy, and Lauren it has been such a pleasure to get to know you and your families. I know we have many more years of friendship to come!
 _As most of you know from my Facebook page I welcomed Dharma Rae into the world on December 17, 2012! From moment one we decided to treat her as if she had MCAD to be on the safe side until we knew for sure. It was a good thing we did because only four days later the news came back that she was positive for MCAD. Despite MCAD she has been a happy and healthy growing girl! I made the decision that this time around I would be making a few changes in my parenting. Not that I feel I did anything wrong with Analese or Bella but this time around my life is different and my parenting needed to change to accommodate it. This time around I am in a more stable financial position, I have grown mentally and emotionally, and these changes in my life have made me change my opinions a bit. I formula fed my first two girls. Through both pregnancies I insisted on breastfeeding but when the day came I was tired and it hurt! I was very young with Analese and I suppose mentally I wasn't ready to fight through it. With Bella I gave it a valid attempt. My milk wasn't in from day one and she started getting sick in the hospital and acting abnormal for a newborn. At that point we had no idea what MCAD was but I can only assume that she acted like that due to the lack of milk in the first few days of life. I could tell she was hungry and I also knew she was losing weight and getting ill. The first time I put a bottle in her mouth she inhaled it and appeared so much better I never looked back. This time with Dharma I was armed with the information going into it, I knew what to expect, and was prepared to be in it for the long haul! She latched perfectly right after birth and that's when I knew this time it would work! I know supplementing formula is a touchy subject and up for much debate but I decided to do that in the first week knowing what I had gone through with Bella. Luckily there was no confusion and she switch fed like a champ!All was great in the hospital but coming home is always a different story. Dharma decided when arriving home that she liked to fall asleep very very very quickly while nursing. This of course made me panic that she wasn't getting enough. I spent a long time corresponding with other breastfeeding moms, many of which didn't know what MCAD even was. What I learned is that everyone has their own way of feeding that works for them and their baby. Many people told me no supplementing, people told me pump and bottle feed, some said bottle feeding was a horrible idea and I should spoon feed, I cant begin to tell you how many wonderfully helpful people tried to give me advice. Unfortunatly I was still just as confused as ever since everyone had different advice. I then realized I needed to find out what was right for me and not every other breastfeeding mom out there. I needed to be comfortable with what I was doing and I needed to assure my baby was fed. For me a bottle of my pumped milk just worked better for all of us. I, for the most part, pump except one night feeding that she nurses. This works beautifully for us but I realize its not for everyone!Another thing I decided to switch up was diapering. I decided to attempt cloth diapering. I figured it would not only be better for the land we live on and my babies skin, but also for my wallet! BOOOYYYY oh BOYYYY did I not realize what I was getting into! My schedule already included pumping every few hours and feeding Dharma every few hours and maybe even attempting to sleep somewhere in between but now it included caring for cloth diapers! I must admit I slipped up and bought a pack of disposables a few times to take the pressure off of me. Turns out I was making a lot more of it then need be. Once I had a large enough diaper supply and a routine I was used to it is SOOOOOO EASY! I dont know why I made it so difficult in the beginning.It has taken a bit of getting used to but Im proud to say I am officially a crunchy, granola eating, breastfeeding, cloth diapering, warrior mother of three beautiful girls, two having MCAD! I never would have thought this would be who Id become but Im proud that I have!I was recently given a great opportunity! One of my favorite Facebook pages, Mothers Moments, is having a giveaway in honor of them reaching 18,000 fans!!!! I decided to sponsor this giveaway. I make homemade cards, stationary, and premade scrapbooks. One lucky winner will win one of my creations. I decided to sponsor because in return the entrances had to go an like my MCADmom facebook page in order to qualify for the prize! I thought this was a GREAT way to spread awareness!!!!!! (Check out the giveaway and win some prizes by liking Mothers Moments and checking out their 18,000 fans giveaway under their photos).When I saw the overflow of people I decided that I should share a link and a bit about my situation and I asked others to do the same since many of our new fans had never even heard of MCAD. Many of the new fans live in areas where no newborn screen is available so I decided to share MCADAngel. Right away this created a debate. Actually a very interesting debate for me since I actually agree with both sides. I specifically chose this page to show what happens in areas with no screening. Also on that page are happy stories of diagnosed and treated children. I felt for people who have never heard of MCAD it would stress the importance of diagnosis. I didnt expect the bit of backlash but when thinking about it understood why. Many parents feel pages like this are scary and make MCAD parents afraid. I agree, in fact I think I may have even written about this topic in the past. Many people felt there were less negative pages that could have been shared. There are so many sites that have gotten us through this journey that I certainly agree but still feel this site was a great way to stress how important diagnosis is. In this debate many people had written about how besides the frequent feeding we should be normalizing our children and not teaching them and the world that they are "sick" kids. Initially I agreed with this idea. In fact our children when properly taken care of and when not ill with a cold, flu, or bug are normal. They for the most part are happy and healthy kids! But does this mean we should raise them hoping the world and themselves see them as normal? I say no!I spoke with my husband after the debate to get his opinion on it and he pointed out a lot that I had never thought of. Of course we want our kids to lead the most normal lives as possible but we shouldnt want them to be too comfortable being too normal. In fact there is a lot thats not normal and by teaching them and others about the dangers they face it will keep them well and teach them as they get older to take care of themselves. There is nothing normal about reading every ingredient in the grocery store, counting grams of fat and dieting for a toddler, or being hospitalized for a simple cold that most kids even go to school with!I want my kids to know that yes they can cheat here or there and have a piece of birthday cake at a party but also know its dangerous to make it a habit. I want my kids to learn to have a voice in school. If they feel odd or hungry I want them to be able to stand up for themselves and be able to tell, not ask, but tell their teachers they need a snack, to go to the nurse, or to sit down during gym if need be. I want them to realize that risky behavior that teens partake in is risky times ten for them! I want my girls to know that in a world where being skinny is everything that crash diets are deadly to them! I guess I dont want them to be normal! Normal to me means ignoring a problem. Thats not to say I dont want my kids to be happy and partake in school functions, play sports, and have friends. Of course I want that for them but I also want, no Im sorry I dont want, I NEED them to be aware of their bodies through it all. I NEED other people to be aware that if not properly treated its SERIOUS! I have left my kids with babysitters and on more then one occasion feedings dont happen when they should and I have heard statements like "She seemed normal and fine so I wasnt going to force it" or "she was sleeping so peacefully I didnt want to disturb her". We are talking about infants in those cases!!! Thats scary and not acceptable. Not to say its the sitters fault, its our fault for normalizing our kids and putting on our rose tinted glasses not wanting to see the sad or scary stories. Sometimes we need those stories to teach us, our children, and others how to avoid having those stories repeated. Step one is to share these stories, step two is to demand that ALL countries have a newborn screen!!!I know many wont agree with many of the thing I have written here. Thats okay if you dont. We all are entitled to different opinions and I respect yours. All I ask is that you understand where Im coming from and that anything I say or do is motivated by wanting to stop deaths and spread awareness for this disorder!
This post is just some short and simple updates that Im excited to tell you about. I was thinking about some ways to improve my site and make it not only more helpful but also more relatable to everyone! I was thinking right now my blogs cover photo is all of my daughter and Id like to incorporate other MCAD kids as well :) Would any moms or dads on here like their kids picture to be featured on the top of the page? If so please email me, post on the wall, or inbox me your child's photo, name and age. Any ideas for anything else or any other resources I should add to the page? I was debating a recipe page for any ones MCAD safe recipes that they want to share. Im in the process of trying to design that now. What do you all think? I am open to any and all suggestions! I do this page for all of you so I really want you all to like it :)Our fellow MCAD mom, Dana Stackpole, shared this great recipe that I thought would be helpful to some of you. I added it to the recipe page that is still under construction. Barley Formula Recipe 15 oz of Barley Water 10 oz of milk (I use unsweetened vanilla almond milk) whole foods and trader joes have good ones . Whole foods is organic. Sweetener to taste (optional) Brown rice sweetener or corn syrup can be used (I use none) Basically take 1/2 cup of hulled barley ( not pearled) and tie it in a muslin or cheese cloth leaving room for expansion. Add 4 pints or 16 cups of water to your crock pot/slow cooker. This can also be done in a pan on stove. Turn on high and cook for 6 hours. The water should be very pink. You can discard barley or eat it. I actually make a barley pudding with almond milk cinnamon and raisins...yum! Mix with whatever milk you use. I usually just do half barley water half milk. Add sweetener if you want. It keeps in fridge for a good week or so. Also I wanted to remind you all that another fellow MCAD mom Teresa Michelle Green shared this with us last time I was on. "Hi! I have "spoken" to you on the FOD page, my son is an MCADer also. I am in the process of starting as a Thirty-One Gifts Consultant and from mid-October through November will be offering 15% of my commission as a donation to Deb and the FOD Support group. Since everyone is so spread out I will only be doing catalog orders and Facebook parties if you know anyone who would be interested in hosting. It is a great opportunity to spread awareness while raising money for our group and earning free and discounted hostess items. A pdf version of the catalog can be viewed at http://www.mythirtyone.com/243299/ " This is a great fun way to raise awareness, money for the cause, and get some GREAT products!
_I am freakishly obsessed with checking on Isabella all night long, sometimes up to ten of fifteen times in a single night!!! I know, I know it is complete paranoia! We have been blessed with a fairly uncomplicated year when it comes to her health. We have had minimal hospital time and very little illness to worry through. Yet, every single night I still fear the worst. When she was a newborn I used to walk around like a zombie after feeding her every two hours. I of course at that point was exhausted! Now that she has clearance to practically fast all night I almost yearn for those every two hour nights. I know what you are all thinking and the answer is yes I may very well be insane! ha ha! No, really at least every two hours I knew she was safe. I knew that I would never fall asleep fast enough in two hours for it to become a deep sleep risking missing my alarms set every two hours. Now on the other hand I constantly fear about oversleeping. She is a heavy sleeper and not a morning person just like her Mama so I can’t even rely on the fact that she will wake up in time to eat. Therefore I set alarms all throughout the night just to stay awake and be sure she’s okay. One of my main obsessions is what to give her before bed that will sustain her blood sugars throughout the night and ease my mind. Primary care physicians always recommend weaning a child off of a bottle at the age of one. In Bellas case this would have been easy. She never was very reliant on her bottle. As easy as it would have been I still ended up giving her a night time bottle with added corn starch well past one. She is a bit picky with if she will eat a snack or not before bed and I just felt more comfort in the fact that she ALWAYS took the bottle. The bottle guarantied sustained blood sugar and eased my mind. Now here we are one and a half months away from her second birthday and she STILL takes a night time bottle! I started to doubt myself as a parent. Have I left her on the bottle for her health or have I left her on it for my own benefit, to ease my mind? I have started thinking about if I should wean her or not yet. Part of my realizes developmentally I should but the other part of me realizes her life depends on that blood sugar level throughout the night and why mess with something that works? I turned to fellow MCADDer’s and MCADD parents for advice in this department. I felt overwhelming support and very little judgment cast upon me. Everyone was so supportive and gave me tons of advice! Some of the advice differed but overall I learned a lot through it. The main lesson I took was to not feel guilty for trying to be a good mom and worrying. I also realized that different approaches work for different people and different situations. I wanted to share just a few of the responses I received… "I give my son baby oatmeal and 2% MILK mixed or yogurt low fat or non fat small things like that and he does good for ten hours of sleep what I do is make his night snack about 2-3 hours after supper and when he eats it I put him to bed his sugars do really good at night this might help you find something that works for you.”~Sabrina Whitlock Thurmond "My son with MCAD is three months away from being 2. I currently have no plans to wean him overnight. The only concession we have made is quarterly visits to the dentist to check his teeth and apply fluoride. Our dentist told us that as long as he was only drinking plain white milk and brushing his teeth when he wakes not to worry about weaning him...the dentist agreed that avoiding fasting was more important than following general parental ideals.”~Teresa Michelle Green "When I was younger my mom would fix me chocolate milk with corn attach mixed in. It was perfect for a kid as it was chocolate of course, but it sustained me all night.”~Danielle Buckley “Don’t feel bad my daughter will be two in December and we still give the bottle at bedtime….what’s the difference in a bottle and a sippy cup ;) Just sayin. I know of folks who have kids who don’t have MCADD and they give their kids a bottle well past two years old. But, she does have a snack sometimes before bed, but then I tend to worry a bit…”~Jennifer Stitcher So what have I decided to do? Well I’m simply going to play around with different snacks and check her blood sugar to see what works for her. If she refuses her snack so be it, I will just give her the bottle. I decided the best way to handle this is to take a stress free no pressure approach! I need to find what works for Bella and myself to make sure she is healthy and I am comfortable. If you are going through the same situation just remember to never feel bad for worrying about your child! You are just being the best parent you can be! Please do comment with any additional advice, questions or generic input. I’m very interested to see how others deal with the same issue. Also on a side not I recieved a message from fellow MCAD mom Teresa Michelle Green "Hi!I am in the process of starting as a Thirty-One Gifts Consultant and from mid-October through November will be offering 15% of my commission as a donation to Deb and the FOD Support group. Since everyone is so spread out I will only be doing catalog orders and Facebook parties if you know anyone who would be interested in hosting. It is a great opportunity to spread awareness while raising money for our group and earning free and discounted hostess items. A pdf version of the catalog can be viewed at http://www.mythirtyone.com/243299/
 Let me first and foremost apologize for being M.I.A. I did make an attempt to update the blog back in June but had so many technical difficulties that I eventually had to give up. Im glad to say that with some much needed work on my laptop and some major updating on my host site everything is going smoothly now!
I am happy to say that in the time I have been missing Isabella has done wonderfully! Sometimes through good times I almost forget about MCAD. I know I shouldn't but I find myself so caught up in the good times that I block out the negative parts of our lives and by doing that I tend to neglect my fellow MCAD parents and patients. For that I am sorry. We should all be there for each other even through the good times. From now on I promise to try and be there for all of you through good and bad!
Isabella will be 2 in November!!!! Can you believe it has almost been 2 years since she was born and since the first time I ever heard the words "Medium Chain acyl CoA Dehydrogenase Deficiency"???? It feel like yesterday! Even after two years I find myself still questioning parts of this disorder and just as clueless at times as I was the first day.
Luckily this year has been a good year! In fact, not just a good year, a GREAT year! Bella is a healthy and growing girl who loves her food as much as any other child and loves to play! She is so social and outgoing!
Our family has been so blessed this year! Isabellas health is great, our other daughter is getting so big and so smart, and in December we are welcoming another little girl into our family!!!!! I chose not to get an amnio to see if our new baby has MCAD or not. I plan to just treat her extra cautiously until we hear the final word on her newborn screen. We got to see our whooolllleeee family this year from NY! First everyone came to visit us in Texas for my little brothers graduation and then I was lucky enough to be able to go back up to NY for my little cousins graduation! Also, we are about to move from our apartment into a much larger condo in Arlington, Texas. Things are coming together for our family in a beautiful way! It sure has been a wonderful year!
I will keep this short this time. I promise to update you all more often and be there as a friend to all of you! Please if you see me go M.I.A. again do not hesitate to get a hold of me and remind me to check in! We are all here for each other no matter what! The day I heard the term "MCAD" is the day I welcomed all of my fellow MCAD families into my family! Make sure to update me on yourselves as well!
On a side note what are all of your Halloween plans? Do your kids know what they want to be yet?
My entire family at Riskeys BBQ in the stockyards in Fort Worth, TX following my brother Codys graduation!
My brother Cody, My cousin Alex (the graduate), Myself, and my older daughter Analese in NY.
Me and my brother Cody on his graduation day!!!
_Its funny to think of the term “risky behavior”. You hear that phrase in Lifetime movies, daytime talk shows, and even school guidance counselors. It usually refers to drugs, drinking, and inappropriate behavior. For me, after the birth of my second child, the term “risky behavior” took on an entirely new meaning. It now doesn’t mean stealing liquor out of your parents cabinets but instead means not rubbing on antibacterial ointment after touching a public bathrooms lock on the stall. Sometimes it is so hard to allow your MCAD child to live a “normal life”. With Analese, my first born and unaffected child, I allowed all sorts of things that now with Bella I cringe even thinking of. Analese was able to play in sandboxes, ball pits, McDonald's play places, and use public restrooms without me even giving it a thought. As for Isabella, these simple things terrify me! I saw this segment on Anderson Cooper about bacteria and germs you find on common places like your glasses, purse, and cell phone. It disgusted me, but worst of all was what they found in fast food restaurants play areas! Erin Carr-Jordan has spent her time swabbing play areas in fast food restaurants across the nation. The findings were simply appalling! ( click here to read more about what Carr-Jordan found). She has made it her mission to keep kids safe while playing in places like this and even began her own non profit organization to support this cause. Check out her page www.kkidsplaysafe.net. It is very informative and even mind blowing. The results page shows pictures of her findings and lists of the dangerous bacterias found. When you have a child with a disorder like MCADD you become obsessed with keeping them healthy. One cold, flu, or bug can land Bella in the hospital…or even worse. It is such a struggle for parents. Analese is the epitome of “normal”. She gets dirty playing outside, is always getting caught not washing her hands after the bathroom, and I swear I see her finger up her little 3 year old nose ninety percent of the time! These are all things I remember from childhood. I cant help but to always feel like Isabella has to miss out on all of these simple acts that to me make up childhood. I know one of these days she will go off to school and I wont be able to control everything she does. I am happy for her that at some point she will rebel and have a taste of childhood. I want that more then anything for her but that doesn’t mean that the thought doesn’t send me into a panic over what could happen! For right now I just feel blessed that she is only one 14 months old. She still is satisfied and thoroughly amazed with just watching the other kids partake in “risky behavior”. How do all of you handle your children and germs? Does it ever get easier to let go and allow them to be exposed?
So I haven't updated this blog lately as you all have probably noticed. I must admit I have had a bit of writers block lately. I was very disappointed that I just couldn't figure out exactly what to write for you all. That's when it hit me that with a blog like this and kids like ours that writers block is indeed a GOOD thing! Having nothing to write means that Isabellas MCAD has been under control and non eventful!We did see the specialist a few weeks ago and everything was wonderful! She is a healthy growing little girl!Unfortunately I had a rough night the other night but it was with Analese, my non-effected daughter). She had a terrible stomach bug that left her severely dehydrated and with very low blood sugar levels. She had to go to the E.R. to get hydrated and get some sugar in her. It was interesting to be there with my normally healthy child. Its like I'm so used to the protocol that I walked in expecting to have our normal hospital routine(which by the way was not the case haha). Isabella is so used to the emergency room that when I'm with her she very willingly lets the nurses poke and prod at her with a smile always on her face. This was very different from how Analese was!!! She has only been sick a few times and wanted no part of IV's or medicine! Also I must admit that it is nice to have the emergency letter with Isabella. They get her in so quickly to take care of her that I had forgotten what a real emergency room wait is.Analese bounced back with a little hydration and is doing great but now the fear is looming overhead! Luckily Isabella has shown no symptoms of a stomach bug and I am just praying it stays that way and my writers block continues!!!!! In the mean time I am working on collecting a few other parents and children's stories to share with you all! If you want to share your story or your child's story please feel free to email me at [email protected] or contact me on my facebook page( click here)! The best way to create awareness is to share!
_There is no worse feeling then knowing that something bad may happen. This is how I feel every time my baby girl teethes or gets a simple cold. I live my life during days like that with the idea of metabolic crisis and the E.R. looming over my head. I just wait out those days until I can finally feel safe again.
My poor little Bella Boo caught a nasty cold. Fortunately she hasn’t has any problems with eating…knock on wood.
Analese had gone though this cold first and we thought Isabella was in the clear but we thought too soon. I went to go get her out of bed the other morning and she greeted me with a snot filled face, sad little watery eyes, and for such a little person a deep loud barking cough.
I automatically feared the worse and started panicking over if all that mucus would make her have no appetite at all.
It only got worse from there. The next thing I knew she was BURNING UP! I swear she was so warm that I wouldn’t have been shocked to see her burst into flames right there. Of course when you check a child's head with your hand you always swear it feels like 1,547,684 degrees! However my friend, the real thermometer, stepped in and confirmed that yes she had a fever but it was not 1,547,684 degrees but only a 101. Isn’t it funny how Moms always assume the worst? I suppose it always eases my mind to pull out the more accurate “Mom” the therMOMeter! I of course hate giving her any Tylenol unless need be (I swear I am always thinking about her liver), but after a phone call with her doctor I came to the conclusion that it was for the best this time.
Her fever went right down and thank goodness has not returned.
Luckily as I said, she has kept her appetite and blood sugars at normal range. I sure hope it stays this way. There is nothing more that I hate then seeing her have to go to the E.R. and get stuck a bazillion times to get an IV in her little arms.
I believe this cold she will stay lucky and stay away from the hospital. She seems to be feeling so much better already and I think we may be able to feel safe now.
Aside from feeling terrible for Bella during things like this I always feel bad for Analese and Steven (my husband). I feel bad for Analese, of course because her sister consumes all of the attention when shes sick.
As for Steven, I swear he can do no right, poor guy. When Isabella is sick the mama bear comes out in me! I become over protective and anal about caring for her. I swear in these paranoid over protective moments I will snap if anyone goes near her, even her own father. I don’t realize how harsh I am being and overbearing until after the fact of course. I feel soooooo horrible for him! Bless him for being able to put up with me during times like these! Haha!
The future terrifies me! One of these days Isabella will be old enough to tell me to stop smothering her and lay off. Some people say over time I will be able to be more at ease with bouts of illness but its hard to imagine I could ever be so laid back. I don’t know, I suppose only time will tell!
Until next time.
Yours truly,
The Mama Bear
For this blog I was going to do a answer your questions post and hold a competition. Unfortunately last night my plans changed. I have been made aware that some people are uncomfortable with the idea of a store with the ribbons image through zazzle. I am not a nonprofit organization and was trying to find the best way possible to legally share my image on products. Zazzle is an outsourcing website. This means that I post my image on the site and they create products with the printed image on it. They make the sale and I earn 15-25% royalties on each item depending on the item. This money of course is given to me since I do not have an organization. I personally CHOOSE to donate 100% of the money that I receive to groups benefiting MCAD awareness and research. I would never expect anyone to purchase from this store if they feel uneasy about this arrangement. This is why out of MY OWN pocket I am trying to purchase ribbon with the print needed to create awareness ribbon pins. I will give these ribbons to anyone for free if requested to help spread awareness. I do not have this ribbon yet and am still shopping around so I promise I will let you all know when I receive it! Also everyone has permission to use my image for personal purposes. You have my full permission to share it, print it, make your own items out of it, anything to promote awareness is fine with me! Due to the concern I received I closed the zazzle store. I do not want anyone to think I would ever exploit this condition for any monumental gain on my part. I will however continue to run my blog and Facebook page to promote awareness. Also I will continue to donate my own money to this cause!I was hurt to read that someone felt I would do this for such selfish reasons. I am a stay at home mother by choice. When my second child was diagnosed with MCAD through the newborn screen it turned our world upside down! From day one I toyed with the idea of creating a blog and thanks to my wonderful friend Alyse Morrissey (Alyse French Photography) I finally got the nerve to start it. Through this blog and the people who read it I discovered that this cause is more then just my day to day life....it is my PASSION! I have watched my daughter be a pin cushion and have deadly blood sugars in the 20's and honestly its not fair! These children start out life at such a disadvantage and have a life long struggle. In my opinion there is not enough awareness or research to help these kids! Someday I hope to start a nonprofit organization dedicated to MCAD awareness and research. As you all know nonprofits take time to establish and a lot of research and reading before you can even think about taking the plunge. I was just trying to do good before I could take that plunge. We live in a terrible world where it is hard to trust that people have the best of intentions. There are terrible people in the world who exploit children and illness's such as MCAD to benefit themselves. I understand some hesitation when it comes to that. I just want to assure you all I would NEVER do that. I dedicate 100% of my time to my children and to MCAD awareness! Which is why I closed that store. I wanted to show you all and reassure everyone that I am not trying to scam anyone.I have not done any of this for any selfish reasons...I take that back. I did do this all fro a selfish reason. That beautiful little one year old girl is why I have done this! I want to see my child lead a normal life and have the best treatments and doctors care available out there. The only way to ensure that is to make sure more research can happen! I suppose if you consider that to be a selfish reason then I am guilty as charged. To conclude this I want to THANK all of my supporters for reading my blog and caring enough to spread the word! Without you my efforts would be for nothing! My daughter and all of you are why I do this!
Oh my Goodness its been too long! The last two weeks have been soooooooo hectic!
Christmas was a hit! Both girls loved all of their gifts! Its amazing to watch Bella start to actively play with her sister now, We were so careful with Bellas diet over Christmas and somehow manages to give her all sorts of treats while still being low fat! Family is so important and I especially learned that this holiday. Unfortunately for many their family and friends dont understand or just all together disregard their children's condition. I have heard horror stories of peoples family or friends accusing them of coming up with it all of having Munchhausen syndrome! There is one this I have learned through this and it is that everyone around the child needs to be on board about his/her diet. I am lucky and happy to say my family has been magnificent about MCADD. If they don't know if she can have something they always make sure to ask.
Unfortunately through the holidays I had caught my older daughters nasty cold and just couldn't get rid of it for 4 or 5 days! All I was afraid of was that Bella would catch it. Luckily she didn't, however that didn't keep us away from the E.R. room with her! We haven't visited a hospital until now since September. It was an odd trip however...instead of being hypoglycemic she was hyperglycemic!!!!! I'm not sure why her blood sugar spiked so high but it did. We have seen irregularities in her blood sugar when it comes to the highs lately and are awaiting our appointment with her primary to get things checked out. They told us if in the mean time her blood sugar was above 200 to automatically go to an E.R. and it was 267!!!!!!!!!!! They took many tests. All of the ones we have the results for were fine but we are still awaiting some of the test results. It was very weird. She hadnt eaten much all day and was cranky and just all around acting oddly so we decided to test her blood sugar in case of a low reading but ended up with an extremely high reading! Have any of you had problems with high blood sugars?
Either way all of this happening in the last two weeks has definitely prevented me from a new blog post until now!
Speaking of which New Years just went by! Any resolutions? I personally make the resolution of a diet every year and every year that only lasts a week! So this year I made a different one. I will make sure to regularly update my blog and make more of an effort to do EVERYTHING in my power to create MCAD awareness! Who knows, maybe next years resolution will be to start my own non-profit so I can make sure that donations and volunteer work truly go where it is needed for MCAD! Let me know what you resolutions are!
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