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 ( www.facebook.com/BabyWendysJourney ) 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! ;)
Thursday, July 2, 2015
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.
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."
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.
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!
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!
Tuesday, March 11, 2014
Long Time… No Blog
I guess it’s been a while since I sat down and wrote a blog. Facebook has made me lazy as far as blogging goes because most of Wendy’s followers are following from her Facebook page instead of following this blog. When I made a page for Wendy a little over a year ago, I promised myself I would not give up this blog. This blog was how people got to know who Wendy was. So tonight, I’m taking the time and I’m going to update you on what’s been going on in our lives, which you may already know if you follow Wen’s Facebook.
It was a rough December with Wendy getting sick on my birthday. She woke up that morning with an incredibly high fever so I did what any mother would do, I cancelled my massage at the spa that I had planned. I watched her, looking for other symptoms, but could find none other than her being lethargic. It made me think back to this past summer when she had that abscess on her chest. She was behaving eerily similar. A few hours later the redness started on her chest, so at that point I was pretty sure it was another abscess caused by a strep infection. I called her doctor and we decided to put her on Clindamycin to try to stop the abscess before it forms. Within a few days, she was back to normal.
A few weeks later, I noticed a skin infection in her ear, which was diagnosed as infantigo and treated with topical antibiotics. At that appointment I got her doctor to check her lymph nodes because I felt one while I was changing her diaper. Not only were there several on both sides of her groin, but there were also ones underneath her arm. Our doctor wanted to do bloodwork and at that point I knew they were checking for Leukemia. A geneticist once told us that children with abnormal 7th chromosomes are higher risk for childhood Leukemia. I immediately took her to have her blood drawn. This was on a Friday and we had to wait until Monday for results. My heart was in shambles. I couldn’t bear the thought of Wendy going through any more suffering. I know she may never have a normal life, but she’s two years old and has been through so much in her short life. I called as soon as the doctor opened on Monday and when I asked, they told me to hold on, the doctor wanted to speak to me. I was preparing myself for the worst, but she said Wendy’s counts were high, but not cancer high. So for now, she is fine!
Now for today. Last night Wendy wouldn’t sleep (she had a runny nose, from what I assumed was allergies). I finally got her to bed after midnight and she woke up at 4:30 am with a fever of 104. I took her to the doctor at lunchtime today. They tested her for strep throat and the flu. Both were negative. Her lungs are clear and her ears look good. She was diagnosed with a viral infection, that just requires fluids, motrin and tylenol, and of course TLC from her mommy.
It was a rough December with Wendy getting sick on my birthday. She woke up that morning with an incredibly high fever so I did what any mother would do, I cancelled my massage at the spa that I had planned. I watched her, looking for other symptoms, but could find none other than her being lethargic. It made me think back to this past summer when she had that abscess on her chest. She was behaving eerily similar. A few hours later the redness started on her chest, so at that point I was pretty sure it was another abscess caused by a strep infection. I called her doctor and we decided to put her on Clindamycin to try to stop the abscess before it forms. Within a few days, she was back to normal.
A few weeks later, I noticed a skin infection in her ear, which was diagnosed as infantigo and treated with topical antibiotics. At that appointment I got her doctor to check her lymph nodes because I felt one while I was changing her diaper. Not only were there several on both sides of her groin, but there were also ones underneath her arm. Our doctor wanted to do bloodwork and at that point I knew they were checking for Leukemia. A geneticist once told us that children with abnormal 7th chromosomes are higher risk for childhood Leukemia. I immediately took her to have her blood drawn. This was on a Friday and we had to wait until Monday for results. My heart was in shambles. I couldn’t bear the thought of Wendy going through any more suffering. I know she may never have a normal life, but she’s two years old and has been through so much in her short life. I called as soon as the doctor opened on Monday and when I asked, they told me to hold on, the doctor wanted to speak to me. I was preparing myself for the worst, but she said Wendy’s counts were high, but not cancer high. So for now, she is fine!
Now for today. Last night Wendy wouldn’t sleep (she had a runny nose, from what I assumed was allergies). I finally got her to bed after midnight and she woke up at 4:30 am with a fever of 104. I took her to the doctor at lunchtime today. They tested her for strep throat and the flu. Both were negative. Her lungs are clear and her ears look good. She was diagnosed with a viral infection, that just requires fluids, motrin and tylenol, and of course TLC from her mommy.
Tuesday, December 31, 2013
Elf on the Shelf.
Elf on the Shelf has become a popular Christmas tradition in many homes, so it's no surprise that Wendy has one too. Wendy's elf, Finn, was adopted the year she was born and has sat on our mantle for the past two Christmases. This year, I decided it was time for him to get to work. Instead of Finn being a mischievious little elf like some, I wanted him to teach Wendy positive things. Every day, Finn either brings a gift for Wendy or has an activity for her to do. I'm taking pictures daily of Finn and his messages for you to see. Obviously, I shouldn’t have 2 days 10s, the second one should be day 11. Life of a special needs mother haha. I’m lucky to have gotten all of them done especially since Wendy got sick around the 18th.
I hope you enjoy reading what our did for Wendy each day of December!
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Saturday, November 16, 2013
Wendy, A Medical History
Many times people ask what is wrong with Wendy. Well, her diagnosis is an unbalanced chromosome translocation between 7&10, but that obviously doesn’t describe her medical issues. So I’ve decided to do a blog post and give everyone a list of Wendy’s medical problems, including a brief description of each so everyone can understand her a little better.
Chromosome Abnormality- It literally means what it says. She has an abnormality in her chromosomal DNA. She has a deletion on 7 (missing 73 genes) and an extra part of 10 (17 genes duplicated) in it’s place. She also has a deletion on 3 and a duplication on 12. The abnormalities on 3 & 12 are thought to be benign and not of any significance.
Congenital Anomalies- These are structural deformities present at birth that are caused by chromosome abnormalities. (There are other things that can cause congenital anomalies, but in Wendy’s case, it’s her chromosome abnormality.) Wendy has several congenital anomalies. For the next few things I list, if they are a congenital anomaly, I will put (CA) beside them.
Imperforate Anus (CA)- This means the opening to the anus is missing. At 3 days old, Wendy had a colostomy placed. At 12 months old, she had an anoplasty (they surgically made her an anus) and finally at 16 months old, she had the colostomy removed and her rectum was connected to her newly made anus. She now poops like everybody else.
Interrupted IVC (CA)- IVC is inferior vena cava, which is a large vein ascending through the abdomen. Interrupted IVC is a rare developmental defect in which 10% occurs with other anomalies.
11 Ribs (CA)- Wendy only has 11 bilateral ribs on each side, instead of 12. They were also noted to be very thin.
Flat Nasal Bridge (CA)- Wendy has an unusually flat bridge and small nasal tip.
Hypotelorism (CA)- Meaning, her eyes are “too close” together.
Sternal Cleft (CA)- A very rare malformation, that result from defective embryologic fusion of paired mesodermal bands in the ventral midline. Only 100 cases have been published. This is the vertical groove in Wendy’s chest.
Microcephaly (CA)- This is a neurodevelopmental disorder. Microcephaly is defined by a small head circumference.
Intestinal Malrotation (CA)- This is when the intestines don’t form and make turns where they should. Intestinal malrotation itself is not much of a concern, but it puts Wendy at high risk of volvulus (when the intestine twists in on itself, potentially cutting off the blood supply) and intestinal obstruction (when a stalk of fibrous tissue known as Ladd’s bands creates a blockage that prevents the intestine from functioning). To help prevent this, Wendy had a LADD procedure done when she had her g tube put in. A LADD’s procedure involves surgical division of Ladd's bands, widening of the small intestines mesentery, performing an appendectomy (Wendy’s appendix was in her upper left chest cavity) and correctional placement of the cecum and colon.
Bilateral IVH- IVH is intraventricular hemorrhage. This is a type of brain bleed. Wendy’s was not severe, so hopefully will not leave much/any damage.
VUR- Vesicoureteral reflux is the back flow of urine from the bladder into the kidneys. This can lead to bacteria reaching the kidneys and causing infection. Because of this, Wendy had to take antibiotics daily from the time she was born, until she was a year and a half old (at that point, her cystourethrogram came back good saying she had outgrown the reflux).
Hydronephrosis- This is swelling of the kidneys. By 3 months old, Wendy had outgrown this.
ASD (CA)- This is a heart defect. While the baby is in the womb, there is normally an opening between the upper chambers of the heart (atria) to allow blood to flow around the lungs. This opening usually closes around the time when the baby is born. If the opening does not close, the hole is called an atrial septal defect, or ASD. Wendy’s closed on it’s own when she was around 2.5 months old.
Sacral Dimples (CA)- This is a dimple at the base of the tailbone. Wendy also has (at least what we think) is a protruding coccyx. She has a nub at the end of her spine that we are going to have checked by ultrasound.
GERD- GERD is gastroesophageal reflux. Wendy takes medication (Prevacid) daily to help control this. On days when that is not enough, she also has Bethanechol.
Dysphagia- This is difficulty in swallowing. Because of this, Wendy has her g tube. Her g tube was placed at 6 weeks of age and before that she was fed by an NG tube in her nose.
I believe this is all of Wendy’s conditions. It is hard to remember all of them when making a list! I hope this helps you understand more about Wendy and the different anomalies she has because of her chromosome abnormality. :)
Wednesday, October 30, 2013
Nap-time and Feeding Tubes
Normally, I blog about things that have gone wrong, Wendy being sick, or my opinion on something concerning special needs children/moms.
This, however, is pretty humorous (even though I didn't think so at the time).
I laid Wendy down for a nap around 1:00. I was hoping she'd fall asleep quickly so that I could nap too. I'd had a headache, no, not a headache, a migraine since I woke up at 9:00.
You're all probably thinking "ooo she got to sleep in, how lucky" NOT! I was up from 3:00am- 6:30am with my little Tator Tot.
Ok, back to laying her down.... I changed her diaper and hooked her up for a feed and put her in her crib. I go back to my bedroom to sit in the dark until Wendy falls asleep. When I look at the monitor, she was tangled 100 different directions. So I went in and unhooked her. Then she unsnapped the bottom of her sleeper and pulled it up where she could reach her tube. She pulled all the dressing and Mepilex off and tried to eat it. So I went back in there took the rest of the dressing off and even unhooked the extension so she wouldn't have anything to pull on. For a while, she tried to pull at her button through her sleeper them she got frustrated and unsnapped the bottom and pulled her legs out... and then TOOK OFF HER DIAPER. I walked in and she was playing with the diaper and laughing about it, all with her bare tushie shining. I couldn't help but laugh.
Finally I taped her button down, put on a new diaper, and got a zip up sleeper. I laid her back down. By this time it was 2:30-ish. After fussing for about 5 mins she finally passed out and slept until 4:45. So did I ;)
This, however, is pretty humorous (even though I didn't think so at the time).
I laid Wendy down for a nap around 1:00. I was hoping she'd fall asleep quickly so that I could nap too. I'd had a headache, no, not a headache, a migraine since I woke up at 9:00.
You're all probably thinking "ooo she got to sleep in, how lucky" NOT! I was up from 3:00am- 6:30am with my little Tator Tot.
Ok, back to laying her down.... I changed her diaper and hooked her up for a feed and put her in her crib. I go back to my bedroom to sit in the dark until Wendy falls asleep. When I look at the monitor, she was tangled 100 different directions. So I went in and unhooked her. Then she unsnapped the bottom of her sleeper and pulled it up where she could reach her tube. She pulled all the dressing and Mepilex off and tried to eat it. So I went back in there took the rest of the dressing off and even unhooked the extension so she wouldn't have anything to pull on. For a while, she tried to pull at her button through her sleeper them she got frustrated and unsnapped the bottom and pulled her legs out... and then TOOK OFF HER DIAPER. I walked in and she was playing with the diaper and laughing about it, all with her bare tushie shining. I couldn't help but laugh.
Finally I taped her button down, put on a new diaper, and got a zip up sleeper. I laid her back down. By this time it was 2:30-ish. After fussing for about 5 mins she finally passed out and slept until 4:45. So did I ;)
Saturday, October 26, 2013
Mommy’s Surgery.
This doesn’t have anything to do with Wendy per say, but it has to do with me, her mom. Some of you may or may not know I had to have surgery last month. I had been told they thought I had endometriosis and I could start treatment right away, but the only way I’d know for sure if I had it was if I had a laparoscopy. So I went into surgery thinking they were going to find the endometriosis, burn some of it away and then I’d start the lupron shots. Well when I woke up, I was told I did not have endometriosis, rather I had 2 cysts/tumors growing and he removed them. When I woke up, I was ready to go home. They asked if I needed any more pain medication through my IV and I said no so they said I could go home as soon as I could pee. I asked them which way was the bathroom and the nurse said, we’ll get you a wheel chair. I decided to just walk. After I got back to my room, she took out my IV and handed me my discharge papers and instructions. I had to leave in a wheelchair (hospital policy lol). Once I got home, I told my mom I wanted to be alone, so I propped up on pillows and took my pain meds and slept off and on all day. When Zed got home, he had Wendy with him. He helped out about changing diapers and doing her care at night, but starting the day after surgery, I was back doing everything for Wen (except in the afternoons because Zed helped a lot then). I hurt pretty badly for about a week, but after that week, I’ve felt fine. I’ve even had a period and didn’t cramp and hurt like usual.
Sorry this post is so late…. I am going to try to catch up on some things I have missed, like Wendy’s birthday for example.
But if you follow Wendy on Facebook then you shouldn’t be behind because I update there every day.
Sorry this post is so late…. I am going to try to catch up on some things I have missed, like Wendy’s birthday for example.
But if you follow Wendy on Facebook then you shouldn’t be behind because I update there every day.
Sunday, September 15, 2013
Living At A Hospital
September 6, 2011 my water broke and I was admitted to Centennial Women’s Hospital in Nashville, TN. That night, Zed went home and got my hospital bag that I had packed, packed himself a bag, and came back to stay with me and he stayed with me on a hospital sofa bed until the day I was released. He stayed day and night, only leaving to report to work every Monday (just to check in and let his superiors know how we were and he would get to leave again after formation) and to go get himself supper every night (which at times he just picked up food from the hospital cafeteria). Now that I look back on it, Zed was amazing. He slept on a very uncomfortable bed and he was so sweet to me, doing everything he could to help. Every night, he would help me get in the shower and while I was bathing he made up my bed so I had a nice place to lay down when I was finished. We used to lay in the hospital bed together and watch DVDs from Redbox. He really was the best husband I could have wanted.
October 8 Wendy was born and transferred to Vanderbilt. I got released October 9. After spending all day at the hospital, we would go to our hotel room to sleep. We rented room 504 at the Holiday Inn Express, which was only a block from the hospital, until we got a room at the Ronald McDonald House. We lived out of suitcases, ate out every night, and rented movies on the TV. I don’t think Zed and I have ever been closer than we were at this time. We used to just go to different stores in Nashville, just to walk around and get out of the hospital and the hotel. At the time, I didn’t really enjoy staying in a hotel. I like to be home and have my own space, but after moving to the RMH, I missed the hotel. A room finally opened up for us after 30 days at the hotel. We had a small room, with 2 twin beds and a tiny bathroom. The only TVs are in the common areas, which was bad for Zed because he was crazy about watching The Walking Dead (and some other shows). I’m not saying it was a horrible place, because truly it is a blessing because they provide a place to stay as well as food, all for free (when we were paying over $100 a night at the hotel and that was with the “hospital discount”), but staying there wasn’t exactly comfortable. On top of everything, I ended up getting really sick, at the same time Wendy had surgery, and I couldn’t go see her for days. So I actually went home to stay for a night or two (we only lived an hour from the hospital). From then on out, Zed and I tried to go home once every week or two, just so I could clean and we could sleep in our own bed.
December 18 Wendy was finally discharged. We were all so happy to be going home. Zed and I had lived in a hospital for almost 5 weeks, then we stayed in a hotel for 4 weeks, and the Ronald McDonald House for 6 weeks. I love Nashville, don’t get me wrong, but I was ready to be back in Oak Grove (Fort Campbell)! In 15 weeks we had only been home 5-6 nights. What really sucked was paying rent and utilities while no one was even there.
It was not easy and I would not want to ever do that again, but I think it brought our family together. Zed and I relied on each other and reconnected. Spending so much time together helped make up for the year we had lost from him being in Afghanistan. Now, if Wendy ever gets hospitalized again, we have to stay in the room with her (because she’s so active and nurses have multiple patients and cannot keep watch on each toddler). We literally could not even go to the bathroom in her room without someone else there because she’d pull out IVs, rip off monitors, etc. I couldn’t imagine trying to do a long term stay with her now. Hopefully she will continue to be healthy and have no hospital stays in her future.
Tuesday, August 20, 2013
Welcome To Holland
There is an essay that has been circulating around the disabled community for quite some time and you may have even seen me post it on my personal Facebook page. It’s called, Welcome To Holland.
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this……
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland.”
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy.”
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned.”
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
Okay, so as Wendy’s mom, I personally never mourned over not having a normal baby. I knew at 23 weeks pregnant that I was going to have a “abnormal” baby and I was fine with that and I was totally up for the challenge. In my personal experience, I think when I got to the airport my ticket would have already said Holland because I knew exactly where I was going. But my point is, this is a really great way to to tell people how it feels to be raising a special child.
Just FYI: most SN parents LOVE Holland and now wouldn’t dream of going to Italy.
WELCOME TO HOLLAND
by
Emily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reservedEmily Perl Kingsley.
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this……
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland.”
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy.”
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned.”
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
Okay, so as Wendy’s mom, I personally never mourned over not having a normal baby. I knew at 23 weeks pregnant that I was going to have a “abnormal” baby and I was fine with that and I was totally up for the challenge. In my personal experience, I think when I got to the airport my ticket would have already said Holland because I knew exactly where I was going. But my point is, this is a really great way to to tell people how it feels to be raising a special child.
Just FYI: most SN parents LOVE Holland and now wouldn’t dream of going to Italy.
Monday, August 5, 2013
Life Worth Living
Those two pink lines can change your world,
but so can a doctor with a few simple words.
“Abnormal” and “rare” will scare an expectant mother to death,
but she knows she’ll fight for her baby until her last breath.
Being a special needs mother is no easy task.
Putting herself first is a thing of the past.
She becomes an advocate and expert and learns to persevere,
because her child has come first since they have been here.
As a mother, she’s always fighting and constantly giving,
because her child was given life, and that life is worth living.
Saturday, July 27, 2013
Pouty Lips and Temper Tantrums; Reining In the Terrible Twos
The terrible twos isn't just something special needs parents go through. Unfortunately, this ugly phase is something all toddlers will experience to a certain degree. Some kids may experience them as early as their second year, beginning right after their first birthday, others may be two or three years old. Wendy is almost 22 months old, and the TT’s are in full force!
She has the sweetest little face, so it’s SO HARD to tell her no to anything, especially when she does that pouty little lip and looks up at you with those big, dark blue eyes, but it’s something that has to be done, usually for her safety. Most of the time, I’m telling her no, don’t eat this or no, don’t pull on your feeding tube when she freaks out and throws a huge tantrum, but there are other times when I can simply be changing her diaper or carrying her to another room and she gets mad. And boy does she know how to throw a fit! When a temper tantrum strikes, my sweet, precious Wen turns into a 16lb Tasmanian Devil that I can barely control.
Luckily, for me, this phase won’t last forever and the signing is helping give her a way to communicate, so we’re hoping that will help too. Being almost 2 and nonverbal is difficult. She can’t tell me what she wants, so she slaps me in the face or pulls my hair. It’s a good thing she’s so adorable or she’d probably be getting away with a heck of a lot less! ;)
Wednesday, July 3, 2013
My child is different and I’m not afraid to shout it from the highest mountain.
Today I was sent a message on Facebook saying things like “Wendy will lead as normal of a life as you let her” and that “no one would know Wendy was special needs if I didn’t point out her differences” and for many reasons these things bothered me. This person, who I will keep nameless for their sake because I know many of Wendy’s followers would love to tell this lady off, sent this message because she said I was making her comment about becoming a grandmother about Wendy and her disabilities, which was not my intention, I just said that my mom had tried to do similar things but didn’t work out because Wendy ended up being a special child and I keep her with me all the time (if this makes sense, I’m trying to be vague as to not totally give this person away).
Did you know that 1 in 5,000 babies are born with an imperforate anus? Probably not, because I didn’t before Wendy was born and it’s probably because nobody talks about it. No one would have ever known Wendy was born without an anus had I not chosen to share it. But I did share it, because if I’m secretive about it, then she will feel like she has a reason to be embarrassed about it and Wendy is perfect in my eyes and God’s. He made her that way, so she should be proud of who and what she is. Other than Wendy’s small size, physically, she looks healthy and most people wouldn’t know that she was born with various birth defects and will face a life of the unknown, but if people comment about her small size, I’ll quickly tell them a little about her and her differently-abled-ness. Hell, I may just bring up something about Wendy and her chromosome disorder just because you mention your healthy grandchild, just like any other may mention that their child did this or that early/late. I have learned to be Wendy’s advocate and I am her voice. I will talk about her disability as much as I can and because of that, thousands of people know about Wendy and pray for her and if you don’t care to hear about it, unfriend me.
As far as me letting her live a normal life… Am I overprotective? YES! I spent most of my pregnancy not knowing if she was going to live past birth and then 71 excruciating days standing over her in the NICU, so excuse me I keep her close and protect her as much as I can. That doesn’t make me a bad mother, that makes me a caring mother. Would I have treated a “normal” baby like I treat Wendy? I don’t know. I’ll probably never know. All I do know is that I’m doing the best I can with Wendy and what we’ve been given. I also know that I love Wendy with every part of my being and I will do everything in my power to give her the best life I can and if you think that means I’m holding her back, then I thank God that you weren’t given a special child and I was.
Wednesday, June 5, 2013
Where We’re At… And Where We Need To Be
If you’ve been following Wendy then you probably already know that she passed her swallow study a few months back and we have began feeding her. Right now, Wendy is still on Neocate Infant formula via g-tube. She takes 920mL a day (which also happens to be 920 calories a day). At this point she’s not losing weight so for her small 15lb body, 920 calories is sufficient to sustain her and let her grow. The downside to that is, it’s going to take a heck of a lot of baby food to get 920 calories by mouth a day.
We have begun experimenting with Gerber ‘Lil Entrees and Wendy seems to love them, as well as baby oatmeal mixed with any pureed food, Gerber Puffs, and freeze dried fruits and veggies. She’s also drinking a bit of Gatorade, apple juice, and sweet tea (all mixed half and half with water, of course). Wendy’s total consumption of calories (other than formula via g-tube) was 12 calories from the 1/3 tray of Gerber pasta, 5 calories from the 15 Gerber Puffs, and about 4 calories from the 5 fruit & veggie melts. So todays today calories consumed by mouth was 21. That’s a long way from 920.
The best I’ve found for Wendy so far to get more calories is the Gerber Oatmeal. It’s 60 calories for 1/4 of a cup, and she can usually eat about that much in one sitting. Then I’ll add about 1/4 jar of baby food to it (which adds 20 calories) and I fill the rest with apple juice or water. If I add apple juice, that’s getting it close to 90 calories for one feed, which for Wendy is obviously great.
Even though the oatmeal has the most calories, I don’t like to limit her to just that every day. I want her used to eating different textures and tastes. I’m sure we’ll get there eventually, but it’s just going to take a while. And also, it’s not all about the calories, you have to look at protein, carbs, fat, vitamins & minerals, etc. but for the sake of comparison I just used calories.
We have begun experimenting with Gerber ‘Lil Entrees and Wendy seems to love them, as well as baby oatmeal mixed with any pureed food, Gerber Puffs, and freeze dried fruits and veggies. She’s also drinking a bit of Gatorade, apple juice, and sweet tea (all mixed half and half with water, of course). Wendy’s total consumption of calories (other than formula via g-tube) was 12 calories from the 1/3 tray of Gerber pasta, 5 calories from the 15 Gerber Puffs, and about 4 calories from the 5 fruit & veggie melts. So todays today calories consumed by mouth was 21. That’s a long way from 920.
The best I’ve found for Wendy so far to get more calories is the Gerber Oatmeal. It’s 60 calories for 1/4 of a cup, and she can usually eat about that much in one sitting. Then I’ll add about 1/4 jar of baby food to it (which adds 20 calories) and I fill the rest with apple juice or water. If I add apple juice, that’s getting it close to 90 calories for one feed, which for Wendy is obviously great.
Even though the oatmeal has the most calories, I don’t like to limit her to just that every day. I want her used to eating different textures and tastes. I’m sure we’ll get there eventually, but it’s just going to take a while. And also, it’s not all about the calories, you have to look at protein, carbs, fat, vitamins & minerals, etc. but for the sake of comparison I just used calories.
Tuesday, May 21, 2013
ER Visit
It’s 7am and I haven’t slept since the night before last. As many of you probably know from following Wendy on Facebook, she’s been sick and running a fever for the past 2 days. After trying to go to sleep last night she woke up crying and hurting pretty severely. I cuddled her and tried to keep her as content as possible. Around midnight she vomited on me and her, so I went to change her clothes. As I was changing her, I noticed her chest was swollen, her pulse was well over 200, and her breathing was labored. It was like she was holding her breath for a moment in between each breath. I told Zed immediately I was taking her to the ER. I would rather be safe than sorry and I knew I’d never sleep while being worried about her. Zed had taken his sleeping medication and was kind of out of it, so I called my mom. (Also, Zed isn’t the best at handling stressful situations, especially when it comes to Wendy.)
We arrived at Athens Regional around 1am. The lady who took our name as we went in was being crappy and absolutely not worried about us because she was talking to co-worker about ordering shoes online. She obviously wasn’t paying attention when we said Wen was having problems breathing. So we got someone else’s attention and said we needed to see a doctor, now. They took us straight back.
We met with the doctor and he said, after examining Wendy, that her throat was red and her chest sounded congested in the front, which could be causing her chest to be swelling. She was also still running a fever of 101. He said he wanted to do blood work, chest and abdomen X-rays (to make sure her intestines weren’t twisted since she was born with intestinal malrotation), a urinalysis, and flu test. Her blood work, flu test, and urinalysis all came back fine (we are still waiting for one blood test to come back, it takes 24-48 hours). Her chest X-ray wasn’t terrible and her abdomen X-ray showed she was still constipated and gassy. We did a breathing treatment and they gave her Tylenol. She was diagnosed with a viral syndrome and upper respiratory infection. Since both of those are caused by viruses there is nothing we can do, except wait it out because antibiotics won’t kill a virus. We have to follow up with her pediatrician tomorrow.
Wendy is now sleeping. I’m hoping I will be able to fall asleep shortly. I have a feeling Wendy and I will be doing a lot of laying around and napping today.
Monday, May 13, 2013
2 Appointments In 1 Day
Today I had to take Wendy to two appointments, luckily only in Athens and my mom went with me to help. Her first appointment was to check her kidney reflux to see if we needed to continue giving her Bactrim daily and to see if we needed another follow up with a urologist. As you may or may not know, Wendy was born with right grade 1 VUR (vesicoureteral reflux) and mild left hydronephrosis. VUR is when urine back flows into the kidneys and hydronephrosis is swelling of the kidneys. The days after she was born, when they were checking all her major organs, a renal ultrasound showed mild hydronephrosis on her left kidney. Three weeks later a VCUG showed the grade 1 reflux on her right kidney. Because of that, she was put on amoxicillin daily for UTI prophylaxis. We were scheduled to follow up with urology after she was discharged from the hospital. When we met with urology, she was 3 months old, and they performed another renal ultrasound. That ultrasound showed the hydronephrosis was no longer present but Wendy still needed antibiotics for the VUR. They switched her to Bactrim since that’s more suited for children over 3 months and she’s been on it since then. Grade 1 reflux is usually something kids grow out of, so today we went to have her kidneys checked.
Today they did a VCUG (voiding cysto-urethrogram). We had to strip Wendy down and put her in a hospital gown, then a nurse cleaned her bottom with iodine. Then, they inserted a catheter while a technician and myself held her down. The catheter was used to put a contrast dye in Wendy’s bladder. Once Wendy’s bladder was filled, the technician began taking x-rays. We had to hold her down until she urinated and emptied her bladder. As she was going potty, the contrast showed whether or not her urine was backing up into her kidneys or not. After her bladder was empty the catheter was removed and we were able to go home. About 2 hours later (when we were just leaving therapy), Miss Ivy called from Dr. Martin’s office to say Wen’s kidneys looked great and no more Bactrim was needed.
We also had her first appointment with a feeding therapist today. (Now do you see why I had to have my mom go? It would have been too exhausting to do all of that alone because Wendy is a handful and a half, HAHA!) Not much happened with feeding therapy. The therapist just wants us to work on desensitizing the back of Wendy’s mouth since she mainly chews with the front and said we should try to give pureed food a little more texture, which I already do because Wendy does better with thicker consistencies. We go back Monday for another therapy session and then next Wednesday is her well check appointment with the pediatrician. We’re going to try to get Wendy an Infinity pump so she can wear it in a backpack so she won’t be so constricted and limited in her movements.
Wendy’s really been doing pretty great. She’s loving the Gerber Puffs and Crunchies and she’s getting better at using her sippy cup. Hopefully things will continue progressing in a positive manner.
Today they did a VCUG (voiding cysto-urethrogram). We had to strip Wendy down and put her in a hospital gown, then a nurse cleaned her bottom with iodine. Then, they inserted a catheter while a technician and myself held her down. The catheter was used to put a contrast dye in Wendy’s bladder. Once Wendy’s bladder was filled, the technician began taking x-rays. We had to hold her down until she urinated and emptied her bladder. As she was going potty, the contrast showed whether or not her urine was backing up into her kidneys or not. After her bladder was empty the catheter was removed and we were able to go home. About 2 hours later (when we were just leaving therapy), Miss Ivy called from Dr. Martin’s office to say Wen’s kidneys looked great and no more Bactrim was needed.
We also had her first appointment with a feeding therapist today. (Now do you see why I had to have my mom go? It would have been too exhausting to do all of that alone because Wendy is a handful and a half, HAHA!) Not much happened with feeding therapy. The therapist just wants us to work on desensitizing the back of Wendy’s mouth since she mainly chews with the front and said we should try to give pureed food a little more texture, which I already do because Wendy does better with thicker consistencies. We go back Monday for another therapy session and then next Wednesday is her well check appointment with the pediatrician. We’re going to try to get Wendy an Infinity pump so she can wear it in a backpack so she won’t be so constricted and limited in her movements.
Wendy’s really been doing pretty great. She’s loving the Gerber Puffs and Crunchies and she’s getting better at using her sippy cup. Hopefully things will continue progressing in a positive manner.
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