Praying for the light at the end of the tunnel

2 Oct

20131002-095341.jpgWe are finally on our way to Michigan!!

I have not updated the blog in a long time. It’s not because I have not wanted to, it’s just because I have had absolutely no time.

I have a two year old whose day is one constant tantrum. (And that’s another post for another day. Actually, no, I wouldn’t do that to you.) Not to mention an 8 month old who is glued to me like a tree frog. (Probably because she’s scared of the constant screaming coming from the two year old.)

(I would like to take this moment to apologize to all the mothers in the world. If I ever saw you in public with a screaming toddler and thought, “get control of your kids,” or “my kids will never act like that,” I AM SORRY. And to all the people who see mothers (or fathers) in public struggling with their screaming kids & have those thoughts, have a little pity. Lend a hand or something, but don’t stare. Trust me, your day may be coming. Sorry….waaaay off the subject. I’m chasing rabbits, Ray. : ) )

Anything I would have posted lately would not have been about our life, that’s for sure. I don’t like writing depressing stuff & I’m sure you don’t want to read it.

But now we are on our way to Michigan & I KNOW things are going to get better. They have to or else you may find MB & me both in a mental hospital.

Dr. Boxer has been so wonderful already and we haven’t even met him yet. We correspond via email about different things regarding Rosalie or myself at least once or twice per week. He is going to see me as a patient too. I am neutropenic, but nowhere near as severe as Rosalie is. Plus Rosalie has other issues on top of the neutropenia. Dr. Boxer initially planned to do bone marrow aspirations on both of us Fri morning, but he emailed me yesterday and said I did not need it. I asked him a few questions & he immediately responded. He is the best doctor! He said he just wanted to do some “blood studies” on me instead. But Rosalie will still have hers at 7:30 am & then we will see him at 1 pm Fri.

I hope I do not have completely unreal expectations, but I fully expect to go up to Michigan, maybe get orders for neupogen injections & IVIG treatments for Rosalie, and once we are home & her counts are up & steady, we can take her out & live a somewhat normal life. Please pray this or something like this happens. We cannot continue to be stuck in the house. MB & I are about to go crazy….I think we both maybe already have.

Thank you so much for the prayers for our family & also for my dad as he recovers from heart surgery.

Also…October is Down Syndrome Awareness Month!!! Get to know someone with Down syndrome! I promise you will be glad you did!

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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.

Update (Bc I’m too tired to think of a catchy title)

24 Jul

20130724-200748.jpgSo…here I sit on a green velvet couch holding my sweet sleeping baby. The same green velvet couch I sat on eight or nine years ago, holding another sweet sleeping baby, one who would also be my flower girl years later. It’s funny how something so insignificant can make you feel so at home, and this couch has made me feel at home this week. I am so incredibly grateful to its owner, who so selflessly handed me the keys to her house so I would not be stuck in a hotel yet again. Washing bottles in a hotel sink with a toilet right next to you just doesn’t seem sanitary! I cannot thank her enough.

Not sure where to start with Rosalie. I have done nothing over the last two weeks except read about immune deficiency syndromes & bone marrow failure syndromes. I have talked to lots of moms online who have babies going thru similar things and I have met only one mother whose child comes close to Rosalie, although the child does not have Down syndrome. She told me about a top researcher at Seattle Children’s & I have even exchanged emails with that doctor, which was helpful.

So, when we met with Rosalie’s hematologist Tuesday, believe it or not, these are the things he brought up- immune deficiency syndromes & bone marrow failure syndromes. We even actually had a hypothetical conversation about what would happen if she needed a bone marrow transplant. Whoa. Slow your roll there, doc.

Basically, Rosalie is being tested for several different things, cystic fibrosis is one, and then many are very rare syndromes. One of those, the main one being focused on right now, is called Shwachman-Diamond syndrome.

Here’s another link with good info if you are interested:
http://www.seattlechildrens.org/medical-conditions/heart-blood-conditions/shwachman-diamond-syndrome/

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I don’t know how nurses do their jobs. We have the same three nurses every time there and they are the best. I felt so bad for the main one, E. After the three of them got Rosalie’s IV in & then had to stick her again for the labs (long story), she was NOT a happy camper. Anytime they stepped foot in the room, she cried & screamed bloody murder. And if you’ve ever had IVIG, you know the nurse comes in a LOT to check vitals during the infusion. It was awful. And it was so hard to watch. Yesterday may have been the hardest day for me. The older they get, the harder it gets because they look at you like, “help me!” Ugh!

So the hematologist is running two very unpleasant tests on her pancreas using this nice big container. And he actually gave me two? Wish me luck on that one.20130724-200312.jpg
We saw the immunologist today, Dr. Finkle. Rosalie & I both like him. He was very kind and good with Rosalie. He said we could pretty much rule out that it is an immune deficiency syndrome, but he cannot study her Ig levels because the hematologist already started her on IVIG for the neutropenia. So now she cannot have IVIG until November, which means we have to be extra super careful with her. He said she is going to get sick without it but that’s the only way he can study her to make sure. Then he sent us back to the hospital for them to draw more blood for more tests for Shwachman Diamond Syndrome and X-ray her chest. Shortened ribs can be a sign of SDS. I am supposed to call him back next Wed for all the results.

So please, just keep Rosalie & our family in your prayers. I am trying not to really read too much into anything yet. Right now, I just feel like SDS is so rare, could it really happen to us? But if it’s not SDS, then what is it? So there are just a lot of unknowns. So we will just keep praying and doing our best to keep our sweet girl happy & well!

****Another H U G E thank you to my friend Holly in Savannah. When I got into town Mon afternoon & unloaded everything, it started flooding & I never got my key out of the ignition. So a couple hours later I went to crank it up to go get some dinner & it wouldn’t start. Holly came to my rescue with her Beamer & her jumper cables & you should have seen her out there battling the huge puddle I was parked in & the mammoth mosquitos, just to get my big black boat started. Needless to say, Rosalie & I ended up at Auto Zone at 7:30 Monday night. At least it didn’t happen Tues morning before her appointment. THANK YOU HOLLY!!

Good News

18 Jul

1. For the first time since March, Rosalie is NEGATIVE for C diff!! Yay!!!
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2. Rosalie has not one, but TWO bottom teeth!
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3. Rosalie is doing great in physical therapy (I’m sure it has nothing to do with the fact that we have the best, smartest, sweetest, most beautiful physical therapist in town, Amanda). She even rolled from her tummy to her back today!
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4. She is growing so much, she feels like she gained 5 lbs just overnight!
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5. She has been trying to hold her own bottle!! MB never even did that!

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So proud of our sweet girl. Thanks for letting us brag on her!

She will get IVIG #3 on Tuesday. Please say a prayer for safe travel and no surprises! We should find out more about the bone marrow biopsy at this appointment. Her appointment with the immunologist is in August but we are hoping to get in on a cancellation. Just waiting for a call.

Aside

Rosalie Update – Six Months

14 Jul

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Our beautiful girl is SIX MONTHS old today!

At 6 am on Thursday morning, I sat down to feed Rosalie and typed out a blog post on my phone with my free hand. While adding a picture, I somehow hit “delete,” thinking I was deleting the picture, but instead I deleted the entire post. So now I am going to try to remember what I included in that post. It was basically an update on Rosalie and her doctor appointments from last week. Also a little about our mini vacay. It was really well written because I was in the mood to write. Right now I’m not in the mood or frame of mind to write, but it’s my only chance because both girls are in bed, so it may not be a very enjoyable read. Sorry.

Many of you saw this picture of MB on Facebook:

photo (2)She was having a typical 2 year old meltdown because she saw that beach towel folded up on the kitchen table so she got it in her head that meant we were going to the beach, and right that very second. Ummmm…no, not even close. But we got the hint.

So we decided that before Rosalie’s appointment last week, we would take MB to the beach. We decided to take her to Amelia Island for a couple of days before driving up to Savannah. We had a wonderful time pretending to live a normal life, not worrying about the doctor appointments looming at the end of the trip. I feel really guilty now for taking Rosalie anywhere (you will understand by the end of this post), but she was always with me and well protected from people & the elements. It was nice to be able to enjoy a mini vacation like a normal family, so I am going to leave it at that and try to not feel guilty about it. What’s done is done and all we can do now is go forward and do what the doctors tell us to do from here on out.

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We had a wonderful time and MB had a complete pirate overload. It was the perfect trip for a child who is completely obsessed with pirates. She was even read a bedtime story and tucked in to bed by two pirates and their parrot.

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And of course once we made it to Savannah, we ate at The Pirate House and rode on the ferry. She loved that.

pirate houseferry ride2

Unfortunately, all good things must come to an end, and early Tuesday morning, we got up and headed to the hospital for Rosalie’s first appointment with her pediatric GI at 7:30 am. I’ll give you one guess as to what MB wore. I didn’t take a picture, but of course she dressed like a pirate. Dr. Rittmeyer thought it was hilarious. Not a whole lot to report on this appointment. He did some lab work the week before and Rosalie’s ANC was 94, the lowest it has ever been. We will only see Dr. Rittmeyer on an as needed basis now. He did not test to see if she still has C. diff, but even if she does, because of her immune system issues, there is nothing he can really do to help her.

Then it was time for Rosalie’s appointment with hematology. First she got all the usual labs drawn and then an IV placed for the IVIG infusion. God bless nurses. Especially the sweet nurses who work with screaming babies and frantic mamas. I am a calm mama. I let the nurses do their job, support them in anyway I can & do my best to try to comfort Rosalie. (But I’ve been around it enough now that if I see something wrong happening and my child is suffering because of it, mama bear does not keep quiet!)

rosalie infusionThe infusion takes a few hours, so Rosalie gets a good nap or two in. It is exhausting, especially after screaming her sweet little head off. After a couple of hours, the lab results started to trickle in. Her CBC came back first and her WBC was up to 6.6 and her ANC was over 500! I was so excited, especially after how low it had been just the week before. But then Dr. Whittle came in. He started talking about something I know nothing about and do not understand – immunoglobulins. He talked to me about the results of this other lab work – her IgG, IgA, & IgM levels. She is deficient in these immunoglobulins. This means her immune system is very weak and she is very susceptible to picking up any illness she comes in contact with. Dr. Whittle said we would need to increase her IVIG infusions to every two weeks, she needs a bone marrow biopsy, and told me not to take her out of the house & only keep her “among family.” He is also referring her to an immunologist in Savannah. And she still cannot get her 4 or 6 month vaccinations.

Please just say a prayer for her. Best case scenario, I will just have to give her a neupogen shot everyday to help boost her immune system. Worst case….is much much worse than just a shot. So please just say a prayer.

On a good note, she is doing great in physical therapy and she has really found her voice lately. I also found her tickle spot today and she giggled so loud, it was the best sound ever! She loves her big sister so much. She loves sitting in her seat and watching MB walk around and play. If only big sister would pay her a little more attention!! But it will come!