Archive | August, 2013

Michigan, here we come!

28 Aug

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Unless you saw my Facebook status update yesterday, I should fill you in on the latest before explaining the title of this post.

Tuesday before lunch, I finally got in touch with the nurse (whom I love!) at the hematologist’s office in Savannah so I could get the results from Rosalie’s CBC done on Monday. I grabbed my pen & her lab report from her last appointment to write on, and asked for her white count.

“5.9”

Okay, that’s not bad. Her white count last time was 7, so that’s not much lower and the normal limit according to their lab is 6.0 – 17.0. So, that’s good to me!

The next important count I needed was her neutrophil percentage.

She paused & slowly said, “ooonnnneee…”

“One? As in one? One percent?” My heart just dropped. (Normal range is 25-45%)

“Yeah.”

“So what’s her ANC?”

“59.”

“Seriously??” My heart dropped again.

All I could think is my poor child has an ANC of 59 and this doctor thinks she’s A-okay!!!! He’s crazy!! (I think a normal ANC for a baby should be at least 2000.)

The nurse then goes on to tell me that the doctor has changed his mind and he does want to do a bone marrow biopsy and soon. She said she would talk to him, schedule it for a Mon or a Wed & call me back.

A couple of hours later, the doctor calls me himself. He basically tells me everything the nurse told me. He added that he had reached out to the Severe Chronic Neutropenia International Registry (SCNIR) for guidance & so that Rosalie’s tests & treatment could be tracked for research. We talked about congenital neutropenia and cyclical neutropenia and testing her for both. He said he would like to do the biopsy next week, but with the holiday it may not be until the week after, “but I really would like to do it next week.” And then when we were ending the conversation he said, “You should be hearing from us in the next few weeks.” Umm, ok.

What I did not tell him is that I have been corresponding with a hematologist who is actually one of the founders and executive officers of the SCNIR (the Registry he was talking about) and he was willing to see Rosalie.

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So Will & I met with Rosalie’s pediatrician today and talked about everything and we have decided to take Rosalie to see Dr. Boxer at the University of Michigan in Ann Arbor. She has an appointment set in early October and all of the arrangements are being made. Unfortunately, with her immune deficiency issues on top of neutropenia, taking Rosalie on an airplane full of strangers & their germs is not really an option.

I am confident in & SO EXCITED to see Dr. Boxer!!!! He is going to help Rosalie & she is going to get well and she will no longer be a prisoner in this house!!!!!! She can go to Bible class with her friends, go to the park, go to the grocery store, go to the swimming pool, wherever we wanna go!! That is exciting!!

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Aug 26 – Where to go from here…

26 Aug

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I thought today would bring answers & a game plan and we would be on our way to getting Rosalie well & living a normal life.

Things don’t always turn out the way we imagine, do they?

Rosalie’s appointment did not go so well. After all those tests, all that lab work, the doctor just sort of said, “well, we aren’t sure what’s wrong or how to help her, so you’re on your own!” No answers. He wasn’t even sure where some of the test results were. But he did tell us she’s probably gonna have asthma? Huh?

I cannot tell you how upset I was. We were thisclose to arguing with each other because he started backtracking on every single thing he’s ever said to me and I called him out on each thing. I have rearranged my LIFE because this man told me to do everything to protect my child. She hasn’t had an ANC over 560 since she was two months old, her lowest was 94 (normal is 2,500 – 5,000), she has low immunoglobulins, and now this man is telling me to go about my normal life and she’ll be fine?!? Sure, so she can be like some other neutropenic children I’ve heard about who got their first & LAST bacterial infections while their poor mommies were being given the runaround?!

I finally just shut my mouth. He obviously had no clue what he was talking about anyway. He gave us an appointment to see him in a month. I have absolutely no idea why. If he thinks I’m driving 3.5 hours for them to do a CBC and say hello…that’s NOT happening. And if he makes one more comment about onions or us being from Vidalia, I might scream. Dude, we live in VALDOSTA!!!!

Sorry, can you tell I’m a little frustrated?

We will be meeting with our pediatrician on Wednesday so we can talk to him about everything and decide what to do. I emailed the “top” neutropenia doc in the US asking for some guidance. We are more than willing to travel to see him if necessary. I hope I hear from him before I meet with our pediatrician. I have been told that he is good about communicating via email. Fingers crossed.

Please say some prayers for Rosalie & Mary Beth. And for my sanity. MB is going through something right now….it’s like the terrible twos on steroids. If you were at church with us Sunday you probably witnessed a little bit of it. I have never been so embarrassed. Please. Just say a prayer. 🙂

Our week in pictures

4 Aug

20130803-111128.jpgReading books with Mimi

20130803-111959.jpgAfter 100 takes, I got a somewhat decent picture with both of them still & looking at the camera!

20130803-112323.jpgShe tries so hard to sit up & play like a big girl! It won’t be long!

20130803-112819.jpgPlaying in the bathtub

20130803-185332.jpgMB got this little book out & put all the magnets in the correct place! She was so proud of herself!

20130803-185711.jpgWe started noticing Rosalie acting a little different on Monday. She was fussy, wouldn’t nap, and stopped eating. So on Tuesday, I took her to see Dr. G, thinking maybe she had an ear infection. Not quite.

20130803-190044.jpgPoor girl has bronchitis. She had been coughing & her breathing did sound a little raspy, but it is really hard for me to know what is normal because she has laryngomalacia, so her breathing is always loud & raspy. So she is on breathing treatments 4 times a day. I took her back to the doctor Friday & she has lost weight because she’s not eating. They will check it again next week at her 6 month well check.

I really love our pediatrician, all of the NPs & PAs, & all of the nurses and staff there. They are all so helpful and friendly. I really appreciate all they do for us. I wish we could see less of each other, but since that’s not happening anytime soon, we are blessed to have some pretty awesome people taking care of our two girls.

20130803-191340.jpgOur little pirate. I’m glad we were able to talk her out of wearing that yellow bow in her hand with that outfit! Ready for Bible class Wednesday night

20130803-191712.jpgHow awesome is this?? Will’s very sweet & talented coworker made this for us as we celebrated Will’s mom’s birthday Thursday night!! It was delicious. I have some cute pictures of the birthday girl but they are on my camera & I will have to post them later.

Rosalie will start speech therapy & have her 6 month well check this week. We have an appointment in Savannah next week but I will talk to Dr. Whittle’s nurse on Tuesday to find out what the plan is.