Archive | May, 2013

Rosalie update 5/23/13

23 May

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We just left the doctor’s office. everything from the colonoscopy looked good. She did test positive for C diff so they are going to try to treat her with a round of vancomycin this time. The inflammation in the lymph nodes was probably from the C diff. She had an upper GI series done today to rule out duodenal stenosis. If there is anything bad they will call us about it.

She will have labs drawn again in 2 weeks in Valdosta to check the neutropenia before they decide to refer us to a pediatric hematologist/oncologist & her pediatrician’s office is handling that. As long as this upper GI series goes well, we will only need to come back to Savannah if something else crazy happens. ๐Ÿ™‚

Thanks for the prayers!

A new perspective

22 May

I went to pick up a copy of Rosalie’s medical record at the hospital the other day. Sitting at a red light on the way home, I decided to open the envelope that was holding that thick stack of lab results, dictation notes, and radiology reports. And there it was:

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It jumped out at me & it was like a slap in the face. The light turned green & I just started to cry. It was printed on the paper so plainly. 1:53 PM. It looked so insignificant. It was Rosalie’s “admission time,” the time she was born. To them, it was just 1:53 on a random Monday afternoon in January. But to me, it was the very moment our entire lives changed. Our world was completely rocked. Seeing it in print was just another reminder that we were different now.

I can’t speak for Will, I will only speak for myself here, but I have been completely changed by this & I think it has just completely dawned on me. At 1:53 PM that day, the old Christina was gone. My attitude is different, my priorities are different, the way I look at the world is different. I don’t even see my closest friends & family the way I used to. I now see them in a new light.

I have been completely humbled by this entire experience. The amount of generosity shown by friends, family, & complete strangers has been unbelievable. It makes me cry to think about all the prayers and love shown to us over the last four months. All because of Rosalie.

Not only has it been humbling, but it is like I have finally discovered who I am. I used to be so concerned about what others thought of me. My appearance, my grammar & punctuation (that sounds ridiculous, but as a writer & in my former profession, that is something I used to really care about!), the things I do and say. I used to be concerned about every little move I made & how it would be perceived by those around me. But I don’t care anymore. That’s no way to live. As hard as I may try, I can’t control what other people think and what others think of me is none of my business anyway.

Not to say I am just letting myself go, I am not. And I do care to a point. But I have way more important things to worry about & to focus on, rather than getting caught up in unnecessary drama and stressing out over what others think & feel.

We are on the way to Savannah for Rosalie’s follow up appointment with Dr. Rittmeyer. She has been doing a little better diaper-wise but the poor thing has the worst episodes of cramping & it is so pitiful.

Traveling to and from Savannah has set us back in terms of speech & physical therapy. But until then, I am lucky to have close friends who are physical therapists & a sister-in-law who is a speech therapist. They have given us excellent little ideas & exercises to do.

Rosalie has started reaching out & batting at toys:

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And we are working on training that sweet little tongue:

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And she has been holding her head up more!

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She loves to play with the toys in her bouncy seat too:

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Before we know it, Rosalie will be running around with Collins!

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I can’t tell you how much I love this sweet face:

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Rosalie update 5/17/13

17 May

We are in the suburban & on the way home! Hooray! We miss MB so much & can’t wait to get home to our wild child.

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Rosalie did well overnight. And I say she did well because it could have been a lot worse. She had her last bottle at noon yesterday & then could only have pedialite from noon to midnight, which did not fill her up at all because she was chugging pedialite like it was her job. So between the IV fluids & her pedialite consumption, I would say she is pretty well hydrated, even after the golytely. And if you have had a colonoscopy, you know how much fun golytely is. You definitely do not “go lightly.”

So she & I did not get much sleep last night between all the monitors beeping, changing a bazillion diapers & her crying because she was so hungry.

All of the nurses just loved little Rosalie this morning. Even tired & hungry, she would smile & coo at them & they just loved it! We were with her when they put her to sleep, and even as tough as I am when it comes to medical stuff, that scared me to death & I had a hard time holding it together as we watched her stop moving & close her eyes.

So we went to the waiting room & we were fortunate to not have to wait very long. He said she was cleaned out & did not see anything really bad.

He is concerned that she is neutropenic. Neutrophils usually make up 50-70% of circulating white blood cells and serve as the primary defense against infections by destroying bacteria in the blood. Her neutrophils only make up 2%, which obviously is a LOT lower than 50-70%. (So if you are sick, please don’t take it personally if I run in the opposite direction! A mama’s gotta do what’s necessary to keep her babies well.) ๐Ÿ™‚

(Side note: I have auto immune neutropenia myself. I was diagnosed when I was 21 or 22. I get sick easily & it takes longer for me to get well. White counts should normally fall between 4.5-11. I have not had a problem with it in a while, but last Friday, my count was 2.)

Also, he saw some inflamed lymph nodes in her intestines so he biopsied those. He was concerned that the inflamed lymph nodes, in combination with the low neutrophil count, could point to a type of pre-leukemia. But we are not going to worry about this right now, so please do not think that I or the doctor is saying she has leukemia. We just have to watch out for it because children with Down syndrome have a ten to twentyfold increased risk of leukemia.

He also did some kind of test for C. diff while he was in there. Now that she is cleaned out really well, we are going to start back on Elecare (formula) and see how she does over the next week until we go back to Savannah to get the pathology reports. So we should know more next week.

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I think I have covered everything. Rosalie is snoozing in the backseat & we are on our way home!

Not positive on whether we will be referred to a pediatric hematologist or not, but if you know the name of a really good one, please share!

Thank you so much for the many prayers & support!

Fearfully & wonderfully made

16 May

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“For You formed my inward parts;

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You covered me in my motherโ€™s womb.

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I will praise You, for I am fearfully and wonderfully made;

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Marvelous are Your works,

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And that my soul knows very well.”
Psalm 139:13-14

Rosalie update 5/15/2013

15 May

Rosalie will be admitted to the hospital here in Savannah tomorrow at noon, start running some blood tests & give her nutrients and then go lightly thru an NG tube. They are going to do a colonoscopy Fri morning & take some biopsies. The doctor said he anticipates her going home Fri. And then we will come back next week for the pathology reports & follow up.

Thank you so much for the prayers for our sweet girl!

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Happy birthday, Will!

13 May

I am not sure if it was my junior or senior year in high school, but what I do remember is how much fun I had in keyboarding class. We had to sit in alphabetical order but I didn’t mind because I sat next to the funniest guy in the class of 99 and he made that boring class so much fun! I remember looking forward to that class everyday.

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Little did I know, I would marry that boy ten years later. Of course, Will decided to call me the same week I decided to move to Atlanta to take a job in the Special Olympics Ga office there. We started dating even though I moved. I did not stay in Atlanta long and I used every excuse in the book to move back to Valdosta just a few months later. But I still say I did not move back home for a guy. ๐Ÿ™‚

Luckily my condo had not sold, all of my furniture was still in it and SOGA gave my old job back to me in Valdosta. My poor boss probably wanted to strangle me. But he has three daughters himself and when I called him crying one day on my way back to Atlanta, I guess he felt sorry for me & worked everything out so I could come home.

Anyway, I guess I am telling y’all this to say God really has a plan for all of us. And if something is supposed to work out, it will. “And we know that all things work together for good to them that love God, to them who are the called according to his purpose” Romans 8:28. This scripture gives me great comfort & I wish I had paid attention to it more when I was younger. It would have saved me from a lot of stress and heartache.

God truly meant for us to be together and I thank God everyday for Will. He is so perfect for me.

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He is patient and kind. Will is the best friend anyone could ever have. I am so proud to call him my best friend. He is thoughtful, considerate, and is willing to do anything he can to help a friend or a stranger. And he is an excellent listener. You can tell Will anything and he is not going to rush to judgement and he is not going to tell anyone either. And if you think I know something about you because you assume Will told me, you would probably be wrong. He is not one to gossip.

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He is, hands-down, THE BEST father and husband ever. He gets up in the middle of the night to feed Rosalie. He changes the dirtiest of diapers. He bathes Mary Beth every night. As I am writing this, he is walking around the house, doing everything he can to soothe Rosalie as she cries because her tummy hurts.

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The first thing he does when he gets home from work is take MB outside to play…sidewalk chalk, swinging, sliding, going for a golf cart ride, whatever she wants to do.

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He is the most selfless person I know. He gets up everyday, goes to work, & does his best to provide for his family. He works hard so that I can take care of our girls.

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He has the best sense of humor & I never knew just how important that is until we started dating. He is trustworthy, honest, caring, and most importantly, he is the spiritual leader of our home.

Every time his birthday, Christmas, or Father’s Day rolls around, I struggle horribly with what to get him. What can I do or what can I buy to show him how much I love and appreciate him? I still don’t know. But I hope he will read this and know how much he is loved and appreciated. (Which means he probably isn’t getting much else! Kidding!)

Will, you are my rock. You make me stronger & I am a better person because of you. With all we have been through together, and especially over the last year, there is no one on earth I would rather be with on this roller coaster. I love you more than I could possibly tell you. Thank you for loving me!

Happy birthday, Will!

Rosalie’s appointment with the pediatric GI is tomorrow so I will update everyone on her after that. Please pray for some of our very close friends who will be welcoming a baby boy tomorrow! We are absolutely thrilled for them & cannot wait to meet their sweet baby boy when we get home!!

The Wait

5 May

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Rosalie is scheduled to see Dr. Rittmeyer in Savannah next week, which seems like an eternity. I call his office everyday, once in the morning & once in the afternoon, to check for possible cancellations so we can get in sooner.

On Thursday I called and gave my whole sob story, hoping whoever answered the phone would take pity on us & work Rosalie in sooner. The woman who answered the phone this time was very nice. She listened to my desperate plea and then put me on hold. I waited. And waited. And waited. Surely if I am on hold for this long, they must be trying to figure something out. The longer I waited, the more i thought they would help. Wrong. She came back to the phone to let me know that there were no open appointments before the 15th, for new or established patients. I hung up & cried.

Sweet little Rosalie. One of these days we are gonna get her well. Every time I think things are going ok, something happens. I have been trying to have her “newborn” pictures taken for four months now. (I’ve pretty much just given up on sending out birth announcements. I’m pretty sure all of our friends and family know that she has arrived anyway! Poor second child!) Every time we schedule pictures, we wind up in the hospital, at a doctor’s office, or it rains. I’m scared to schedule anything anymore.

Rosalie has become much more alert & responsive over the last couple of weeks. She loves being talked to and she rewards her audience with big smiles & sometimes even a little coo. It is so sweet!

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So next week we will head to Savannah. We are hoping to make the best of it by staying somewhere nice since it will also be Will’s birthday. We will try to have as much fun as we can with an infant tagging along. I just hope and pray that Dr. Rittmeyer can help Rosalie feel better.

Rosalie has been eating better the last two days, which is great! But she seems to be in more pain when her tummy cramps, which is not great. At all. Dr. G gave her some different medicine to help with the cramping and we think it helps some. Also, the day after she got out of the hospital, Dr. G’s office called to tell me that she tested positive for C. diff again. So she is now on her third round of flagyl & he told me to give it to her until we see Dr. Rittmeyer. C diff is some nasty stuff, y’all!

We are so thankful for the prayers for Rosalie & our family. We have such an amazing support system between our families, friends, church family, awesome neighbors, and our new family in the Down syndrome community, and we cannot tell you how much we appreciate everything y’all do for us. I have a list of thank you notes to write & it must be a mile long. There is no doubt that we are blessed and The Lord is taking care of us.

God is so good! He sure blessed us with two sweet beautiful little girls.

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