Archive | June, 2013

Finding strength

23 Jun

20130622-215547.jpgMB, Reagan (Rosalie’s BFF), & Rosalie


The last two weeks were HARD and I am happy to put them behind me. So many times I hear, “you are so strong,” “your faith is so strong,” “your faith in God through all of this is so inspiring,” “you are such an inspiration.”

The past few weeks, specifically the past two weeks, I have been WEAK, my faith has been weak, my faith in God has been weak, and my actions have been far from inspirational. I’ve cried a lot & I’ve been pretty discouraged by a lot of things.

I’ve been pushed to my breaking point and instead of bending further, I’ve given in. I have been truly tested.

One day this past week, maybe Monday, Will came home and we decided to get Chick-fil-a for dinner. (Cooking is the last thing on my to do list unfortunately and the Market Salad at Chick-fil-a is the BOMB!) I ran out of the house, excited to have even 10 min to myself after listening to a screaming 2 year old pirate all day (I love her, but it’s the truth) but then I literally cried like a baby the entire way to & from Chick-fil-a. I think I almost hit a neighbor walking her dog because it got that bad.

It just hit me…I have a child with Down syndrome. How is this possible?? This is absolutely crazy! My child is going to be perceived as “different” from other kids her age. She very well may be picked on or left out. She may be judged because of a diagnosis. SHE IS STILL A HUMAN BEING!!!! She is not a diagnosis!!!

I started comparing her to other 5 month olds. Stupid idea. Now I know better because A. Her muscle tone may be a little lower & B. It’s not fair to her to see her as a 5 month old when she should really only be 3.5 months. For 3.5 months, she is doing great! I was so depressed about all of this until someone reminded me of that. And Rosalie is not going to meet all of her milestones at the same time as other kids her age. That’s something I need to accept, and I know I have & I’m fine, I was just having a moment of weakness.

Another reason I’ve had such a rough couple of weeks is because my mom has been gone. She is my best friend and my rock. (Other than Will, of course!) When I took Rosalie to Savannah the week before last, I went alone. That was a lot of work, physically & emotionally. Normally Will comes with me, but he had just missed two weeks of work for school and my mom was not able to keep MB overnight, so Will stayed behind. We just felt like that would be best for MB. Then last week, while my mom was still gone, MB got pink eye. So NO ONE was able to come over to help at all.

There’s so much more, I could go on & on but I already sound like such a Debbie Downer, so I’ll stop.

Really, when I think about it, just when I think I can’t handle any more, one of my best friends -and even sometimes someone I’ve never actually met!- will show up on my doorstep with exactly what I need. It’s a total God thing. He is in control. He is giving me strength through the loving kindness of friends. I am beyond thankful that He knows just what we need.
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Can I tell you some of the wonderful things friends have done for us? One night last week a friend brought us dinner out of the blue. This isn’t the first time this has happened and I cannot tell you how helpful it is. If you know someone who has just had a baby or has a loved one in the hospital, take food to their house! Don’t even ask, just do it! A couple of weeks ago, when Will was out of town and things just weren’t going so well, a sweet girl that I know but have never really met, brought us dinner, dessert, a generous gift card, and a very sweet message written inside a note card. While Rosalie & I were in Savannah, a dear old friend who I cheered with in middle & high school & was in Phi Mu with brought Will & Mary Beth dinner. Another sweet friend brought me lunch. MB got the sweetest get well card in the mail from two girls & their mom who we attend worship with. Another dear sweet friend, I call her my sister, was packing up her house to move & also packing for a mission trip to Central America that they left for last week, but she dropped everything to come keep Rosalie while I took MB (aka Captain Pink Eye) to the doctor. I won’t even begin to talk about how much my neighbors and my other sweet friend & her daughters have helped. You all are the ones who are inspirational!!

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And last night, Will & I finally got to go to dinner together ALONE for the first time in FOREVER. Of course we went to our very favorite spot, Steel Magnolias. The owner is an amazingly talented chef and one of my oldest friends. : ) It was so so good, just like every time we eat there! I planned to get dessert, but got it to go instead because my mom called and she was having issues with the girls so we needed to go. Anyway, we asked for our check and our server told us that someone had taken care of it. Two of our sweet sweet friends who we LOVE & care for so much had paid for our meal. That was SO generous and kind. Thank y’all so much. Now it’s our turn!!

And on top off all this, I have so many incredible friends I know I can call on, day or night. We are so incredibly blessed.

Rosalie got evaluated for physical therapy this last week. She is 5 months old, but they go by her adjusted age, 3 months & 2 weeks. So for 3.5 months, she is doing pretty well! Babies Can’t Wait will start coming only once a month but my sweet friend Amanda who is a pt will work with her once a week. She will also start speech therapy but I will know more about that after I meet with her BCW case worker Monday.

And of course, if you read my last update, you know she has C. diff again. : (

I am going to wrap it up but I want to ask for a special prayer request. There is a family I know of who is expecting a precious little girl in the next couple of months. She has been diagnosed with Trisomy 18. Please pray for this sweet baby, her parents & family, & all the doctors looking after them.

Hello again, C. diff

22 Jun

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Well, Rosalie finished her fifth round of antibiotics this week. She was on vancomycin for the second time, and of course, as soon as she finished, the C. diff came right back. Yeah, really. This is ridiculous. So Dr. Rittmeyer has started her on an antibiotic called alinia. Normally it is taken for 3 days but she will take it for 6. Dr. Rittmeyer and his nurse practitioner seem pretty confident that it will work.

I have no idea what the next step would be if this doesn’t work. I really thought the IVIG infusion & second round of vancomycin would take care of it. I just can’t believe it came back & so soon after finishing the vanc. She finished it Thursday & it was back Friday. And it is obvious too, not just in her diaper, but all the progress we have made in the amount she had been eating has dwindled over the last two days, she’s not napping, she’s crying in pain & nothing we do makes her happy.

I’ve started to write a couple of posts this week but haven’t had time to finish them & honestly once I do have time, I go to sleep instead. Sorry! : ) Maybe I will finish one or two tonight.

Thanks for keeping Rosalie in your thoughts and prayers.

Five months old today!

14 Jun

20130614-123323.jpgFive months ago we woke up & had absolutely no idea the dramatic turn our lives would take that day. Kinda crazy to really sit & think about it. I didn’t expect to have a baby that day. I didn’t expect to be told that she did in fact have Down syndrome, after being told she didn’t. I didn’t expect to begin a life full of doctor appointments and hospital visits. Nothing could have prepared us for the stage we were about to be thrust upon by having a special needs child.

But I am not complaining. Because with all of this came an AMAZING, PRECIOUS, BEAUTIFUL, ***PERFECT*** little bundle of sweet love named Rosalie. I never imagined I could love another child like this. Her smile lights up our whole world and we could not imagine our lives without her. I just can’t get enough of her.

It was about this time last year that we found out we were expecting this sweet baby. All of a parent’s dreams for their child begin as soon as they get that first positive pregnancy test. I don’t know anyone who includes Down syndrome in those hopes and dreams. If you get a prenatal or birth diagnosis, you WILL grieve the loss of those dreams. That is completely normal & to be expected. Just know that with time, everything works itself out. You will be happy, you will absolutely adore your child (not that you ever didn’t), and eventually you won’t look at your child and see “Down syndrome” anymore.

Ok, I’m rambling, sorry!

So Rosalie is 5 months old! She is 12 lbs & 25 in. She loves to play on her Baby Einstein play mat. She really likes to hold on to blankies, burp cloths, or whatever article of clothing she can get her hands on & bring to her mouth. She loves to smile and I can *almost* get a half giggle from her when I gently bounce & sing to her. She loves it when her daddy sings to her, just like big sister did as a baby. She likes to suck her thumb and absolutely will not take a pacifier. She is a great sleeper, waking up at night only to eat (trust me, after one baby with colic, we know how fortunate we are!). She loves it when big sister talks or sings to her. She likes to be walked around so she can explore. If she’s crying, you know something’s really wrong. She does NOT like bath time. She loves to be talked to & she loves to talk back. We have the best conversations. 🙂

Rosalie has been doing well since she got out of the hospital Wednesday. We stayed in a hotel Wednesday night because I was exhausted & had a migraine & just did not see myself making that drive alone with a baby feeling that bad. Thankfully, Rosalie slept 8 straight hours that night & we had a very uneventful drive home Thursday. Mary Beth was having so much fun with her babysitters, I think she was a little less than thrilled to see me walk through the door. But that’s ok. I’d much rather know she’s happy. She went through a wants-to-be-a-cowgirl phase while I was gone:

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I am just glad Will was able to be with her in the afternoon & at night. That would have been a lot for a two year old to handle if we both left after Will was already out of town for two weeks. Hopefully everything should be “normal” until Rosalie’s next IVIG infusion in July.

Here are a couple of shots from our little impromptu photo shoot this morning:

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Have a great weekend!

Hospital stay #5

11 Jun

20130611-191013.jpgDoes this baby look sick to you? : )

We saw Rosalie’s GI dr this morning & that appointment went pretty well. Since she started taking the medicine they put her on last week her symptoms have improved. So we are going to stick with the vancomycin & omeprizole right now. If what happened last week happens again, they will scope her.

This afternoon, Rosalie saw a pediatric oncologist. She has severe neutropenia. She is starting IVIG therapy tonight. The link explains more about what it is. hopefully it will help her build up an immune system & kick the C diff.

As long as she does not get a temp of 100.5, which unfortunately the doctor said is highly likely, we will go home. He said if her temp reaches 100.5 they will have to keep her for several days because she is medically fragile. His words, not mine. It’s hard to look at her & think of her as medically fragile because she looks like a perfect sweet little baby, but I guess your immune system is not something that is necessarily visible.

So the doctor told us to think “cool thoughts” so she won’t get a fever & we can go home tomorrow.

Thanks everyone for the sweet messages, prayers, food, & thank you Rhonda & girls for taking care of MB! 🙂

Yay for Daddy!

8 Jun

20130608-211035.jpgThis is what Rosalie thinks about Daddy coming home!

Will is finally home & all is well. When that door opened last night, Mary Beth ran as fast as her little legs would take her & jumped into his arms. She was thrilled to pieces. They immediately went outside to play, of course.

The first few days he was gone were absolutely horrible. Mary Beth just did not understand. We tried to FaceTime with him…BIG mistake. She couldn’t understand why she could not jump into the phone with him. She cried as if someone had died. It was pitiful. She would cry, “I waaant to goooo to schooooowul!!!” My mom & I just cried with her.

She eventually started to accept the idea, and when I got home from taking Rosalie to the doctor one day she said, “My daddy is in Baton Wooge. He is in schooowul. He is wearning stuwuff.” This kid cracks me up.

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So we woke up yesterday morning & I explained that daddy would be home & she got so excited. She first asked to wear her elephant costume & then of course started asking for balloons & decorations (this kid is all about a party) so we made him a banner. I think he liked it.

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She was so cute helping me put it up. “I need a piece of tape, pweeeease!!!” So I’d give her one, she would thank me, play with it a second, hand it back to me & say, “I need you to hand this to me pweeeease!” (She meant, “I’m handing this to you.” She gets her pronouns mixed up.) We had fun decorating for daddy. 🙂

I had such an overwhelming response to my last blog and I cannot tell you how appreciative I am to some special angels who brought food, prayed for us, or sent me an encouraging message. The last two weeks were rough and I had a few bad moments where I wondered if I would make it, but God knows our needs and there ARE good people in the world. Every bit of kindness shown to us will be passed on!

Health update

6 Jun

First, I am so proud of my sweet husband. As of tomorrow, he will be finished with his first two weeks at the Graduate School of Banking at LSU. But I CANNOT WAIT for him to get home & I know he misses his girls too. It has been a ROUGH two weeks (yesterday was the worst by far) without him home but I am so thankful to my mom (especially), my mom-in-law, & my friends for their help.

And if I thought this week was bad…next week is starting to make this week look like a cake walk.

Rosalie finished her fourth round of antibiotics for C diff on Sunday. Big surprise…she still has C diff. So I put in a call to our GI doc in Savannah late Tues. (TMI warning) Well Wed, Rosalie had a mucousy diaper with red blood mixed in, as usual. But this time, it also had black coffee grind looking things in it. Well, if you know about poop, you know that’s not a good sign. So Dr. Rittmeyer is putting her back on vancomycin, her FIFTH round of antibiotics since March, and putting her on a stronger reflux med too because she has been spitting up & choking a lot more.

And I will have to take her back to Savannah to see him on Tues. I think this is stressing me out the most because Will won’t be able to go & my usual childcare for MB won’t be available. So I will really be depending on the help of friends if for some reason the trip to Savannah turns into an extended stay like it did the first time. I already have a sweet, wonderful volunteer to travel with me, hopefully that will work out & I know that MB will be taken care of during the day by one friend or another.

I never imagined I would have to lean on and ask so much of my friends and family. God has truly blessed us with some amazing angels. We really had to learn to accept help from friends & family, but sometimes you just have no other option.

In addition to all of this, Rosalie is severely neutropenic. She basically has no immune system at all. If you know about neutrophil counts, her ANC in Savannah was 160. A normal ANC is about 3,000-5,000. Anything under 500 is considered severe. So if you are wondering why you haven’t seen us at church or out in public, that is why. We just cannot risk it. If she gets sick, I am willing to bet she will be back in the hospital. She has even somehow picked up a little cold since Saturday & has been running a low grade fever. Anyway, we have been referred to a pediatric oncologist/hematologist in Savannah & we will also see him on Tuesday.

So that’s how things are going in the Moore house. I did so well keeping the majority of the house straight last week. But this week…..it is embarrassing!! If you know of a really good DEPENDABLE person who cleans & does laundry (and someone I won’t need to clean my house beforehand for!), please let me know! I could really use the help!

Ten ways Rosalie has blessed our lives

5 Jun

First of all, there are probably a million ways Rosalie has been a blessing, but in order to keep this post at a reasonable length, I better narrow it down to ten.

1. Rosalie has given my life a new purpose. I now believe that God put me on this earth to be a mother to MB & Rosalie & any other chillins that may come our way (we aren’t stopping just because we’ve had 1 with DS! I’d have 5 more just like her if I could!).

Before I became a mother, I was the director of public relations at a technical college. I loved my job. It was an awesome job for someone my age, especially considering there aren’t a ton of PR jobs in this town. And it wasn’t just a job, it was a career. I felt like I had an active part in the growth and development of our town and I wanted everyone to see the benefits of technical education. I felt like I was doing something good and I learned from & worked with some incredible people. As much as I always wanted to be a stay at home mom, I did not plan to become one so soon or even at all. I spent my maternity leave with MB with a constant feeling of dread. Trying to decide on child care & all of those decisions we make as parents weighed on our minds. It was hard to enjoy those first few weeks with my precious baby girl, knowing that I would eventually have to return to work. I went back to work for a couple of days in July 2011. The morning of the second day, I remember standing in the hallway at home crying…sobbing, hair wet, time to go, no makeup on, literally hyperventilating. I absolutely could not pull myself together. No amount of Xanax was going to calm me down. I did not want to leave my baby. I just couldn’t do it. But God had a plan. Finally that afternoon (or maybe the next day, I can’t remember), Will told me I could quit. I packed up my office & got out of there before he could change his mind. As much as I loved my career, I didn’t have to think twice. But I miss my old coworkers. They were like family to me. Somedays I wish I could go back but I now know I am exactly where I need to be. God was preparing me because he knew Rosalie would need a little extra care.

I don’t want this to come off as me saying that if you work outside the home, then you can’t be a special needs mommy or daddy. Not. At. All. What I am trying to say is I’m not strong enough. You know how they say God won’t give us more than we can handle? I just don’t have the energy, brain power, coordination, or *energy* to work & have kids. God just did not make me that way.

2. Rosalie has bridged some pretty huge gaps in relationships. She has shown us what is truly important and I am so incredibly grateful.

3. Rosalie has changed me and definitely for the better. I am more positive, easy going, and much much more accepting of others differences & abilities. Things that I valued before are not important to me anymore.

4. Because of Rosalie, we are a part of a special family in Valdosta and all over the world, who have been blessed to love and care for an individual with Down syndrome. I have mentioned before, as soon as friends and family members learned of Rosalie’s diagnosis, we were immediately given the names and numbers of other parents with a child or children who have Down syndrome. Because of Rosalie, we have met & become friends with many amazing people we may have never come in contact with in our lifetime.

I remember going to the first Down Syndrome Association meeting in our town. It was held in that same church fellowship hall that I stood in only weeks before, helping to host my best friend’s baby shower, and seeing these families, ‘knowing’ but not knowing (if that makes sense!) we would soon be joining them.

I was so nervous but excited, knowing we were about to meet new friends who understand exactly what we are going through. They know the exact words we need to hear. They have been on the same roller coaster of emotions we were riding and lived to tell about it. They are the ones who paved the road we are traveling.

We went to the meeting and met Erin & Donna, who are absolutely wonderful. Libby and Reagan, Rosalie’s BFF, were there too. And there was a grandmother and aunt of two new babies, boy & girl twins, who were just born a week or more prior. The baby boy was born with Down syndrome and was at Shands at the time of our meeting. We met their parents, Lee and Gregg, a few weeks later once both babies were home and we were at the park for the World Down Syndrome Day celebration.

We also met many wonderful families that day at the park who have become friends and mentors and have provided direction and support in so many ways. It would be a lonely, rough journey without this new “family” we are now a part of. Love them SO MUCH.

I have also become friends with other moms of babies (& grown children) with Down syndrome thru Facebook & Twitter and they are a great source of encouragement everyday. It is so nice to be able to connect with other moms who are going thru the very same thing, feeling the same way, dreaming the same dreams for their little ones. Love them SO MUCH too! 🙂

5. Rosalie is going to give me a huge lesson in patience. I am always prepared, thinking two steps ahead, finding the most efficient way to get a job done quickly. I always talk about how Rosalie is a baby, just like any other baby, but let’s face it…she has Down syndrome. She is going to need a little more time for things. That is something that God obviously saw I needed help with. I am starting now, trying to be more patient with MB & everyone around me. But Rosalie is going to give me a true lesson in Patience 101 & I’m ready for it!

20130604-225836.jpg6. That smile could brighten the darkest day. Rosalie has smiled since the day she was born. Granted, those first smiles were probably gas, but they were still precious smiles. (And never say that to a new mom, by the way!) The NICU nurses would comment on how much she smiled & how it was so nice to see because the other babies they saw didn’t normally smile until long after they were discharged. Now that she is becoming more social & smiling because she is happy…it just takes my breath away. Her smile just makes her entire face light up. It could brighten the very darkest day. I even got a small giggle the other day! That was something I will never forget.

7. Rosalie has changed the way I see individuals who are different or “differently-abled.” I can now say I TRULY truly appreciate individuals with disabilities. No one asks to be disabled and all individuals deserve respect- disability or not. Differences are what make this world beautiful!!! We are all different! It is all about ACCEPTANCE.

People are afraid of what they don’t know. That’s why I have this blog. The more we all learn about Down syndrome (i.e., the more I shove it down the throats of everyone around me!), the more you & I will know about it, & the more likely Rosalie will be accepted in school, in athletics, in clubs, among her peers, among their parents, wherever!

8. Rosalie has made me friendlier, given me more confidence. When I was pregnant with MB, the song “Without You” by Keith Urban would come on & there is one verse that would bring on the tears EVERY time. Never did it have more meaning than it does now:

“Along comes a baby girl
And suddenly my little world
Just got a whole lot bigger, yes it did
And people that I barely knew
They love me cause I’m part of you
Man it’s tough to figure”

The love we have been shown in the last almost 5 months (!) has been overwhelming & it is something we possibly may have never experienced if not for Rosalie.

9. Rosalie has strengthened my love of The Lord. Since Rosalie was born, friends have commented on how strong we are or what an inspiration we have been to them. While it is nice & encouraging to hear those things & I would never want to make anyone feel bad for saying it, I know…I know that it has nothing to do with me. It is all about God’s grace. 1000%. I thank God everyday for guiding our footsteps thru this unforeseen journey. Knowing that He has His hand on us & that He will take care of us, gives us the peace we need to be able to enjoy the ride.

10. We have soooo many blessings to come. After all, we are only 4.5 months in. We have so many exciting times to look forward to. Watching Rosalie & MB grow up and seeing the unique bond they will share is something Will & I are really looking forward to. And I can’t even begin to comprehend the impact she will have on us all. But right now, I am really enjoying this sweet baby!!!

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This week Rosalie has started to not like being held like a baby anymore! All she wants to do is sit up & look around:20130604-225416.jpg

Playing on her side;

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Lots of news to come, hopefully I can find some time tomorrow to post a health update.