Thursday, July 2, 2015

Monkey Say, Monkey Do

It has been a while since I sat down and wrote a detailed blog. It's late right now, so hopefully I can keep my thoughts in line. Most of you probably keep up with Wendy on facebook ( ) which is where I post updates a few times a week, as well as adorable photos of her.

Wendy is growing (slowly) and learning (quickly). Preschool taught her so much and I am so thankful for Ms. Jodi, Jennifer, and Brenda. Wendy is signing MORE, which means easier communication and LESS tantrums from Wendy and tears of frustration from Bubby.

Oh, and Bubby is me, mom. Wendy can say pronounce a few single syllable sounds: ma, pa, ba, ha, etc. but she refuses to call me Mama, Mummy, Mom. When I point at myself and say "Wendy, who am I?", she plainly answers, "my bubby" every single time.  

Wendy's words are not forming yet, but her mind is steadily expanding. Monkey mimics us really well! We were riding the Ranger a few weeks ago (this is when I first noticed her truly trying to copy me) and I had my legs crossed and one arm folded. Sweet Wen kept looking over the side of her carseat to look at me and ended up crossing her leg and folding one arm just like me! Now she copies everything! Whether it's brushing teeth, bathing, going potty (which she will tee-tee in the potty now!), etc. she just loves mimicking us!

Monkey will be 45 months old this week and I am just bursting with pride. I know the general conception of special needs parents is that we're not as proud of our children because they're delayed and can't do as much as "normal" children, but that perception is totally untrue. At least in the case of Wendy, it is. My world revolves around my little munchkin and I am in awe of all the obstacles she's overcame and the miracles I've been witness to through her. One things for sure, Wendy's got an incredible life ahead of her and I am so thankful that I get to be a part of it.

PS---- I know I haven't been blogging near as much as I used to, but I will try to get back in the groove!   ;)

Monday, March 9, 2015

My Daughter Rides the Short Bus....

Well, technically, Wendy doesn't ride any bus. I drive her to school. 

Back in September, a month before her third birthday, we began visiting the preschool and doing developmental assessment, IEPs, the works. The day after my baby turned 3, she had her first day of school. 

She was wearing a black and white polka dot skirt, a big white bow in her hair, and a little white onesie that read "though she be but little, she is fierce" more of a reminder for me that Wendy is tough enough to go to school and to be away from mummy. Wendy was much more prepared for this than I was. My palms were sweaty as her dad and I walked her down the hall to Ms. Jodi's Special Ed class. It seemed like the hallway was neverending and I was ready to turn and break into a run to take my baby home... which is exactly why we had to bring daddy along. Once we got into the class Wendy was all smiles and ready to play. She didn't even look back at us as we left her. 

That's been five months ago and I am so glad I made the decision to send her to a public preschool. I honestly never thought I'd feel comfortable leaving Wendy with "strangers" because I rarely even let family keep Wendy. I'm very overprotective and like to know exactly what she does all day long. It's hard for a mum to leave her entire world in someone else's care. But I knew how much it would benefit Wendy and eventually benefit me as well. 

I remember hearing parents complain about Blackwell even back when I was in elementary (and Blackwell wasn't just a preschool, but a K-5 like our 4 other elementary schools). I heard complaints about the school academics, the location, etc., etc. but I was taught not to judge based on other opinions, so I decided to check it out myself. And I was amazed. I'm not sure what the normal pre-k classes are like, but Wendy's special needs classroom is incredible. Her teachers are beyond great and I love that she gets all of her therapy at school now! Not to mention, everyone seems to love Wendy. 

I can truly say Paul J. Blackwell has given Wendy the building blocks for her foundation for her future education.  There is no place I'd rather Wendy be.

Tuesday, July 22, 2014

Why I Chose To Breastfeed... And Why I Chose To Stop

When I first got pregnant, I did not want to breastfeed. I didn't have a good reason for not doing it, except, I simply didn't want to. I didn't change my mind about breastfeeding until my water broke early and I knew I was going to have a sick, preemie baby. Once I was admitted to the hospital, I asked to talk to a lactation consultant about breastfeeding preemies. I was on bedrest for 4.5 weeks (from 29w2d-33w6d) and it was during that time I decided I was definitely going to give breastfeeding my best shot. One thing stuck out to me when I was reading about preemies and giving them breast milk. It cuts down risk of infection in the NICU by 86% (dont hold me to that percentage, but I'm pretty sure that's what it was) and I knew at that time, Wendy was going to be fighting enough, that I could do this for her.

So I did. I pumped and pumped and pumped. I was a pumping champ! The freezer at the hospital was full. The freezer at the Ronald McDonald House was full. My freezer at home was full. They were all full of good breastmilk just for Wendy. About a week before Wendy came home from the hospital, I started feeling depressed. I didn't want to stay in Nashville anymore, I would cry asking Zed to take me home, just for the night. I didn't want to pump anymore. I was just unhappy. I needed back on my meds to control my anxiety and depression. I stopped all of my medication 3 months before Zed came home from his deployment  because I knew we wanted a baby and I knew I did not want to be on ANY medication during my pregnancy.

I called my doctor in Clarksville and told her what was going on and she sent me a prescription. That same day I told Wendy's doctor I wanted to quit pumping. At that point, Wendy was getting my breastmilk, but also getting 22 cal Neosure mixed in with it to help her gain weight because she kept losing on my breastmilk alone. I understand that's normal for a baby to lose weight at the beginning, but Wendy had dropped from 3lbs 15oz to 3lbs 8oz in just 2 days and she we didn't want to put anymore stress on her body. Her doctor acted like I was the most horrible mom for wanting to stop. What her doctor didn't understand was that I was fixing to take home a medically fragile child that needed to be fed every three hours, wear a heart monitor, have a colostomy bag, take medicines several times a day, etc. Where was I going to find time to pump? I understand people think special needs moms are like superwoman, but trust me, we need sleep too! Haha. I was already exhausted from pumping every three hours (even during the night I had alarms set to wake me). I knew I physicall and mentally was done.

Since I had so much milk stored, Wendy got a mix of high cal formula and my breastmilk for almost 4 months. All the lactation consultants praised me because they said most moms with sick kids (not "normal" preemies) but kids sick enough that they need to be transferred to a children's hospital usually only make it 2 weeks exclusively pumping.

My whole point of this blog was to say, yes, breastfeeding is great! It's great for the baby, it's great for you. But if you decide to formula feed, that's great too. Your child is still getting the nutrition they need. Whatever decision you make, is your decision and your decision alone. Don't let anyone, family, friends, doctors, etc. make you feel like any less of a mother because it's hard enough making that decision anyway.

Friday, May 30, 2014

My Moon and Stars

Zed and I were spying on Wendy this afternoon. We had put her in her playpen with a big, very special teddy bear while we made sandwiches for supper. We stood beside the stairs just watching her as she laughed and giggle and conversed with this bear.

This bear is very special because I got him the day Zed returned home for R&R during his deployment in Afghanistan. I knew he was coming home in April, but I did have exact dates. He told me he was stuck in Kabul when he was really getting off a plane in Atlanta GA. My mom called and said she needed help at their shop (my parents own an auto repair shop) and she wanted me to come answer phones. She told me to look presentable because I'd usually show up in sweats!  But when I walked in the office there was a huge Bearrington Bear holding a half dozen red roses and wearing Zed's ACU hat. I began looking for him and found him in the parts room.  It was the first time I'd seen him in months and I didn't want to let him go. That's why that bear is so special.....

... Okay back to Wendy's story. As Zed and I watched her hug and kiss and babble to this bear, I said, "How did we get so lukcy?".

You know, I've had numerous people tell me how lucky Wendy is to have a mom and dad who care so much, are attentive, and would do anything in the world for her. And yes, I do agree, Wendy's lucky she has us for parents. We have only one child so we focus 100% on Wendy. We have the financial means to care for her. We have family who are willing to help, even though I won't take the help. And we do have such a deep emotional bond with Wendy.

But truly, Wendy's not the lucky one. Zed and I are. She has given us reason to live, breathe, and get up in the mornings. Wendy is my sun, my moon and stars. And as unhealthy as it may sound, she is my world. So the next time someone says "Wendy is so blessed to have you." I'll be thinking "No, I'm the blessed one."

Saturday, May 17, 2014

Elimination diet for the next month.

FIES- Food Protein-Induced Entercolitis Syndrome

I have diagnosed Wendy with that myself for her milk and soy allergies.

She also has a reaction to grapes and anything grape flavored.

She is going to have allergy testing done soon, but my concern right now is; why is she constantly having yeast infections?  My guess is that she has another FPIES allergy and I’m determined to figure out what it is before we go back to GI in June.

Once Wendy’s done with her antibiotics, she only has a few more days we will begin our version of an elimination diet. For 3 days she will be allowed nothing but formula and water. After that we will introduce simple foods like baby safe foods and rice cereal (I believe rice may be our culprit). By adding only one food every few days, I will be able to document if there were hives, vomiting, how her bowel movements were, etc. Once she eats something that her body doesn’t tolerate and she has a reaction or gets a yeast infection, I can write that down as a food to avoid.

We are also going to try goat milk to see if she has a problem with that.  I’m hoping that if goat milk isn’t a possibility, then maybe coconut milk. I’m a little afraid to try almond milk before she has her allergy testing done because she may be allergic to nuts.

I know that a normal doctor would just keep giving medication for the rashes and GI will just say to only give her formula through her tube, but I don’t want Wendy in pain from constant yeast infections and I don’t want her to not be able to have a cup of juice or a jar of baby food. So I am taking matters into my own hands and Dr. Mom is going to figure this out. I’m keeping a journal to show the doctors my progress.

Wish us luck. I know this is going to be difficult for Wendy and for myself. But we’ll get it done.

Monday, May 12, 2014

Pray, send good vibes, or whatever it is that you do.

Two ruptured ear drums and 4 molars coming in makes one very uncontent baby and one very sad mommy.

Wendy began getting fussy one day last week. She was chewing on her hands, running a low grade fever, not sleeping as well, you know, just the usual signs of a teething baby. I never thought that within a weeks time she'd have double ear infections, punctured ear drums, and a horrible yeast infection. I feel guilty for not catching the signs sooner. Maybe if I had, her ears wouldn't have gotten so bad. Regardless of whether I could have prevented some of the damage, it's here now and I'm having to deal with it.

One of the hardest tings about being a mother is when your child is sick or hurting and you can't do anything to fix it. Wendy looks at me with these eyes that are clearly screaming "mum mum, I'm in pain and I don't understand why". I just hug her tight, tell her I love her and that mum mum is doing everything she can to make Buggy feel better.

Speaking of making Buggy feel better, Wendy got 3 more prescriptions today (on top of her Prevacid, Bethanechol, Claritin, and poly-vi-sol, plus the ibuprofen and tylenol that I'm alternating, and her Hyland's teething tablets, which are all natural). For the ear infection, Wendy has an oral antibiotic that has to be given once a day, but must be given 2 hours before or after her antacid and vitamins. She also has antibiotic drops to put in her ear twice a day. Her final new medication is Diflucan, an anti-yeast medication, that she is taking 2 times a day for 3 days because she already is just getting over a yeast infection and taking so many antibiotics will just create more yeast.

Even with all this going on, I can't even feel bad for myself. One reason being that I love Wendy so incredibly much that I would do anything for her, no complaints. The second reason is because my poor momma is sitting for the umpteenth time at the hospital with my grammy, who is in ICU at Emory. Grammy has been up and down and my momma has been steadfast and always there.

Everyone, I'm going to ask you to pray. Pray for healing for Wendy, strength and patience for me. And please, pray for my grammy. She's going through a lot of surgical procedures and pray that God leads those doctors hands. Lastly, I wam you to pray for my momma. She's my rock and I've always been able to count on her, but she takes care of everyone but herself. So pray for stregnth to care for grammy, the emotional ability to handle it all, and for her to be at peace, no matter what happens.

Momma, if you read this, know that I love you and I'm sorry. I'm sorry I'm not able to help more. I'm sorry I don't spend much time with you anymore. I'm sorry you're stuck at Emory by yourself. My heart aches for you because I know I can't come take your place. All I can do is stay here, and get your sweet grandbaby well and send my love and encouragment. You are truly an amazing daughter and if the time ever comes, I hope I can be just as great. I love you Momma. Stay strong and hang in there and know that if there is anything I can do here, please please let me know! 

Saturday, March 15, 2014

March For Babies. Walk for Wendy.

It’s that time again. That time that I start bugging everyone to donate to March of Dimes.

I decided to do a very intimate party for immediate family for Wendy’s third birthday and invite all of our extended family and friends to a March for Babies event 10 days after her birthday to celebrate with us. We would rather you donate to March of Dimes instead of buying Wendy a gift.

 The walk will be October 18, 2014 in Lavonia, GA. You can order t shirts (Preview Them Here) for $15 but they won’t be available for purchase until July! But don’t worry, I’ll remind you!

To be involved, you don’t have participate in the walk, you can just DONATE HERE. Also, you can purchase a shirt even if you can’t attend the walk. I understand many of Wendy’s warriors live out of state and I urge you all to buy a shirt if you can and support sweet Wendy!

My final announcement is that starting MARCH 25, I will host an online Younique party (the makeup and beauty products that I sale). I make about 20% of every item sold. For this party, I will donate my entire profit to March for Babies under the Wendy’s Warriors team.  So if you’re interested in making yourself beautiful and giving money to a great cause, be on the lookout for my March for Babies Younique Party!