...completely gone. After obtaining some of AJ's records today, and reading the addendum to her CT report, we learned that her metopic suture is NOT open. In fact, it is completely closed. I saw it very clearly on the images also. For the life of me, I can not fathom why a radiologist would have missed it the first time. It is also very clear on the images that her skull is slightly deformed, especially on the forehead. You can also see that her eye sockets are not symmetrical like they should be. It just blows my mind that it is so obvious to me, yet the radiologist first said "no intracranial abnormalities". Needless to say, we're upset. She has two sutures that are fused, which means that we may be facing two surgeries instead of one. I really hope this is the last bit of bad news we find out for awhile.
Kendra has also caught on that something is wrong. I've tried very hard to not let on that anything is going on in front of her, and not show how scared I am, but this evening my mom came over, and we were looking at her CT films. At first she was fascinated that she got to see pictures of the inside of her sister's head, but then she started questioning why she had to have the pictures to begin with, and wanted to know if the pictures were bad. We explained to Kendra that Alexis might have to have surgery and stay in the hospital for awhile. Kendra immediately started crying. She's going to miss her baby sister, she says, and she doesn't want her to be in the hospital. We're trying to act like it's not a huge deal in front of her, while at the same time not minimizing the situation. We want her to know the truth, but not be too scared. It's a tough thing to do.
Please keep sending your prayers and positive thoughts our way as we struggle through this ordeal. We're on the roller coaster ride of a lifetime, and I've never liked roller coasters.
Friday, June 25, 2010
Thursday, June 24, 2010
Nix the Good News
I really thought my next post would be the cute, fun one that I mentioned yesterday. Unfortunately, that is not the case. The pediatrician's office called again today. This is kind of how the conversation went:
Nurse: Is this AJ's mom?
Me: Yes.
Nurse: Hi, this is *nurse* from *doctor's* office. What pharmacy do you use?
Me: Uhm...why?
Nurse: The doctor looked over AJ's lab report from Tuesday, and it turns out her iron is low. We need to start her on an iron supplement right away.
Me: Are you serious?
Nurse: Yes, I'm sorry. We feel with everything that's going on, her iron level needs to be higher.
Me: What was it?
Nurse: 10.5
Me: Why would her iron be low?
Nurse: It just depends, sometimes it can be caused by the child drinking too little or too much milk.
I won't type out the rest of the conversation, mostly because I was a little upset and probably wasn't as nice as I should have been to the nurse...but really, who calls a mother, after she's been given bad news, and tells them their child's blood work is all normal, then calls the next day and says it isn't? How does this happen? I've seen enough lab reports in my life to know that abnormal values are easy to spot, even if you don't read the numbers. They're bold. They're marked with either an H or an L to indicate if they are high or low. How did they not see this yesterday???
As I said previously, I've started to lose faith in the healthcare that we have available to us. I know that we're all human, even doctors, but in the last week, they've made WAY too many mistakes with us, and at least one of these could have been detrimental to the health of my child. I hope the doctor in Kansas City is a little bit more detail oriented!
Nurse: Is this AJ's mom?
Me: Yes.
Nurse: Hi, this is *nurse* from *doctor's* office. What pharmacy do you use?
Me: Uhm...why?
Nurse: The doctor looked over AJ's lab report from Tuesday, and it turns out her iron is low. We need to start her on an iron supplement right away.
Me: Are you serious?
Nurse: Yes, I'm sorry. We feel with everything that's going on, her iron level needs to be higher.
Me: What was it?
Nurse: 10.5
Me: Why would her iron be low?
Nurse: It just depends, sometimes it can be caused by the child drinking too little or too much milk.
I won't type out the rest of the conversation, mostly because I was a little upset and probably wasn't as nice as I should have been to the nurse...but really, who calls a mother, after she's been given bad news, and tells them their child's blood work is all normal, then calls the next day and says it isn't? How does this happen? I've seen enough lab reports in my life to know that abnormal values are easy to spot, even if you don't read the numbers. They're bold. They're marked with either an H or an L to indicate if they are high or low. How did they not see this yesterday???
As I said previously, I've started to lose faith in the healthcare that we have available to us. I know that we're all human, even doctors, but in the last week, they've made WAY too many mistakes with us, and at least one of these could have been detrimental to the health of my child. I hope the doctor in Kansas City is a little bit more detail oriented!
Wednesday, June 23, 2010
Finally...A Little Good News
This morning I was jerked from sleep by my phone ringing. It was the pediatric office calling us with the results of AJ's latest lab work. Her second set came back normal, so the results from last Thursday that were off were due to a lab error. Since the values really had us scratching our heads, we're relieved.
We also got our appointment with the pediatric neurosurgeon. We will make the 6 hour journey next Wednesday. I've already started my list of questions, and I think of more every 5 minutes it seems like. Her appointment is, thankfully, in a place where we will have some family to lean on. We are already thankful for their offer of a place to stay, no matter how long we will need it. The last thing we want to do when facing this is sit in a cold hotel room by ourselves.
Today was better. We feel better knowing that it won't be long before we have some answers. We were dreading a long wait before the appointment. We're armed with information, and feel like we have a pretty good grasp on what we are facing. We've began exploring our options on our own, and have already prepared on where we will go for a second opinion, if necessary.
One of the places I've found for information and guidance is www.cappskids.org, which is an excellent source of information and support from families who have already experienced the diagnosis, treatments, and endless appointments for follow up, as well as those who have just been given the diagnosis. It helps to read about their experiences, and see how their children are thriving after treatment.
To everyone who has sent up prayers and offered words of support and encouragement...thank you. Words can not express how much the support of our family and friends means to us right now. We KNOW this is going to be a difficult journey.
I had a cute, fun post planned before we were introduced to the world of craniosynostosis. I will finish it and have it posted soon!
We also got our appointment with the pediatric neurosurgeon. We will make the 6 hour journey next Wednesday. I've already started my list of questions, and I think of more every 5 minutes it seems like. Her appointment is, thankfully, in a place where we will have some family to lean on. We are already thankful for their offer of a place to stay, no matter how long we will need it. The last thing we want to do when facing this is sit in a cold hotel room by ourselves.
Today was better. We feel better knowing that it won't be long before we have some answers. We were dreading a long wait before the appointment. We're armed with information, and feel like we have a pretty good grasp on what we are facing. We've began exploring our options on our own, and have already prepared on where we will go for a second opinion, if necessary.
One of the places I've found for information and guidance is www.cappskids.org, which is an excellent source of information and support from families who have already experienced the diagnosis, treatments, and endless appointments for follow up, as well as those who have just been given the diagnosis. It helps to read about their experiences, and see how their children are thriving after treatment.
To everyone who has sent up prayers and offered words of support and encouragement...thank you. Words can not express how much the support of our family and friends means to us right now. We KNOW this is going to be a difficult journey.
I had a cute, fun post planned before we were introduced to the world of craniosynostosis. I will finish it and have it posted soon!
Tuesday, June 22, 2010
The News
We got the news today. The good news...AJ's metopic suture is open. The bad news...AJ's left coronal suture is fused.
It has been an emotional day. We've been on a roller coaster ride since Thursday. We have few answers, and literally hundreds of questions. Our next step is to meet with a pediatric neurologist. Until then, all we have are our questions, and the very dangerous Dr. Google.
I'm not happy. I've lost faith in the quality of health care available to us in our area. Perhaps it's just my bitterness and pessimism rearing it's ugly head, but I can't help it. I'm emotional. I'm scared. I'm nervous. I don't know what to do.
For now, this is all the information we have.
"The coronal sutures begin at the ear and continue superiorly to the top of the skull to meet the sagittal suture. One or both sutures may be involved. When one suture is fused, the forehead on that side is flattened and swept back with the eye in its socket. When both sides are fused (Bi-Coronal), the head is short and wide with bulging of the eyes and bulging of the skull around the ears." (Source: www.cappskids.org)
We're looking for answers and support. We're searching for strength and courage. We're trying to ignore worry and dread. We know what CAN happen. We know what complications MAY face us. We know what treatment options we MIGHT be given.
For now, all we can do is love each other, our sweet baby girl, and hope for the best...and pray.
It has been an emotional day. We've been on a roller coaster ride since Thursday. We have few answers, and literally hundreds of questions. Our next step is to meet with a pediatric neurologist. Until then, all we have are our questions, and the very dangerous Dr. Google.
I'm not happy. I've lost faith in the quality of health care available to us in our area. Perhaps it's just my bitterness and pessimism rearing it's ugly head, but I can't help it. I'm emotional. I'm scared. I'm nervous. I don't know what to do.
For now, this is all the information we have.
"The coronal sutures begin at the ear and continue superiorly to the top of the skull to meet the sagittal suture. One or both sutures may be involved. When one suture is fused, the forehead on that side is flattened and swept back with the eye in its socket. When both sides are fused (Bi-Coronal), the head is short and wide with bulging of the eyes and bulging of the skull around the ears." (Source: www.cappskids.org)
We're looking for answers and support. We're searching for strength and courage. We're trying to ignore worry and dread. We know what CAN happen. We know what complications MAY face us. We know what treatment options we MIGHT be given.
For now, all we can do is love each other, our sweet baby girl, and hope for the best...and pray.
Monday, June 21, 2010
Good News..Bad News
The good news...
Justin passed the part of his CPA exam that he took a few weeks ago! This is a huge step for him, and a giant boost of confidence that he very much needed. I am so proud of him!
The bad news...
AJ had blood work drawn last week as part of her 1 year well child visit. We got the results today. She had several values on her CBC that were high/low. We will go tomorrow for a re-draw. Needless to say, this has added a bit of worry and stress. We're hoping the values are abnormal due to an acute illness that we didn't know she had. We're also hoping that tomorrow we have even more good news to post as we should know the results of her CT scan by this time tomorrow.
We've had a lot of people sending up prayers for our precious baby girl, and for the family as a whole...people who hardly even know us have added us to prayer lists and offered their thoughts and prayers. We can't say thank you enough for the prayers, well wishes, and good vibes being sent our way. It helps to know so many people are pulling for us!
Justin passed the part of his CPA exam that he took a few weeks ago! This is a huge step for him, and a giant boost of confidence that he very much needed. I am so proud of him!The bad news...
AJ had blood work drawn last week as part of her 1 year well child visit. We got the results today. She had several values on her CBC that were high/low. We will go tomorrow for a re-draw. Needless to say, this has added a bit of worry and stress. We're hoping the values are abnormal due to an acute illness that we didn't know she had. We're also hoping that tomorrow we have even more good news to post as we should know the results of her CT scan by this time tomorrow.
We've had a lot of people sending up prayers for our precious baby girl, and for the family as a whole...people who hardly even know us have added us to prayer lists and offered their thoughts and prayers. We can't say thank you enough for the prayers, well wishes, and good vibes being sent our way. It helps to know so many people are pulling for us!
Friday, June 18, 2010
Worried
When I became a mom, I learned the true meaning of "worry". When they're newborns, you worry if they are getting enough sleep, enough to eat. You check the crib several times a night to make sure they're breathing.
When they enter the infant and toddler stage, you worry about them putting something dangerous in their mouths, or getting a hold of something they shouldn't. You worry about them falling when they start standing and walking, and worry about every little cough and sniffle. Fevers are a nightmare, especially if those fevers come on with no other symptoms.
Like every other good mother out there, I do everything I can to keep my children safe and happy. I comfort and nurture them when sick. I cuddle and snuggle them when they are crabby. I play silly games and do crazy dances around the house to make them smile. I rock them when they are scared. And I worry. I worry about weird diseases that they will never catch, and about injuries that will never happen.
This time, I have reason to worry. Alexis had her one year check-up today. I noticed the doctor really paying attention to her forehead. Since she was a little baby, she has always had a ridge on her forehead. I never thought it a thing I needed to worry about...until today. As the pediatrician was gently rubbing my fussy baby's head, I asked her if it was something I SHOULD be worried about. She calmly stated that she has always noticed the ridge, but that it is definitely becoming more pronounced as she gets older. I'm worried...about a little thing called metopic craniosynostosis. Basically, the pediatrician is suspicious that her metopic suture (the one that starts at the nose and goes to the top of the head, where it meets the saggital suture) has fused shut. She needs too have a CT scan. If the CT shows a fusion, or any kind of pressure on the brain, we will then have to meet with a pediatric neurologist. Our pediatrician wanted to make sure we had the very best technologist available, so she is looking at the schedule and will set us up early next week for the scan. Until then, I worry...
I debated even posting this, but it helps to "write it out". Life isn't always sunshine and roses. We'd be silly to believe that it is. So why not post about the not so fun stuff? I feel more stressed and tense than I have in a long time. I don't like the feeling of having something to really worry about. I know I should be thanking my lucky stars that my baby is still happy and healthy, and that even if she does end up having this weird thing going on, it is treatable. But let's face it...who likes the thought of their child's head being cut open and their skull being operated on? I know I'm getting ahead of myself...but I worry.
Kendra has also given me reason to worry. Today she was diagnosed with chicken pox. I know this is nothing to worry about, but I hate when my kiddos are sick. I know she'll be fine, and in a week or two you will never know anything was ever wrong. But she's sick. She has a fever. She's uncomfortable. So...I worry.
The pediatrician has also given me yet another reason to worry. In three months, she will be moving. I love our pediatrician. My kids love their doctor. She's seen Kendra since she was three months old, and Alexis since birth. I worry that we won't love her replacement as much, though she assures us we will. I worry about continuity of care. I'm sure we'll love the new one just as much, but...I worry.
I'm sure everything will be fine, but until I know for sure, all I have to do is worry.
When they enter the infant and toddler stage, you worry about them putting something dangerous in their mouths, or getting a hold of something they shouldn't. You worry about them falling when they start standing and walking, and worry about every little cough and sniffle. Fevers are a nightmare, especially if those fevers come on with no other symptoms.
Like every other good mother out there, I do everything I can to keep my children safe and happy. I comfort and nurture them when sick. I cuddle and snuggle them when they are crabby. I play silly games and do crazy dances around the house to make them smile. I rock them when they are scared. And I worry. I worry about weird diseases that they will never catch, and about injuries that will never happen.
This time, I have reason to worry. Alexis had her one year check-up today. I noticed the doctor really paying attention to her forehead. Since she was a little baby, she has always had a ridge on her forehead. I never thought it a thing I needed to worry about...until today. As the pediatrician was gently rubbing my fussy baby's head, I asked her if it was something I SHOULD be worried about. She calmly stated that she has always noticed the ridge, but that it is definitely becoming more pronounced as she gets older. I'm worried...about a little thing called metopic craniosynostosis. Basically, the pediatrician is suspicious that her metopic suture (the one that starts at the nose and goes to the top of the head, where it meets the saggital suture) has fused shut. She needs too have a CT scan. If the CT shows a fusion, or any kind of pressure on the brain, we will then have to meet with a pediatric neurologist. Our pediatrician wanted to make sure we had the very best technologist available, so she is looking at the schedule and will set us up early next week for the scan. Until then, I worry...
I debated even posting this, but it helps to "write it out". Life isn't always sunshine and roses. We'd be silly to believe that it is. So why not post about the not so fun stuff? I feel more stressed and tense than I have in a long time. I don't like the feeling of having something to really worry about. I know I should be thanking my lucky stars that my baby is still happy and healthy, and that even if she does end up having this weird thing going on, it is treatable. But let's face it...who likes the thought of their child's head being cut open and their skull being operated on? I know I'm getting ahead of myself...but I worry.
Kendra has also given me reason to worry. Today she was diagnosed with chicken pox. I know this is nothing to worry about, but I hate when my kiddos are sick. I know she'll be fine, and in a week or two you will never know anything was ever wrong. But she's sick. She has a fever. She's uncomfortable. So...I worry.
The pediatrician has also given me yet another reason to worry. In three months, she will be moving. I love our pediatrician. My kids love their doctor. She's seen Kendra since she was three months old, and Alexis since birth. I worry that we won't love her replacement as much, though she assures us we will. I worry about continuity of care. I'm sure we'll love the new one just as much, but...I worry.
I'm sure everything will be fine, but until I know for sure, all I have to do is worry.
Thursday, June 10, 2010
Happy Birthday Alexis!
Today you are 1. I can't believe how fast the time has gone, you are growing up so fast! You've gone from a snuggly newborn to a sassy, vibrant little girl in a very short time. I am so glad you came into our lives. You truly completed our little family! We love you so much!
Tuesday, June 1, 2010
Memorial Weekend
Memorial weekend has always been one of our favorite holiday weekends. USUALLY, we spend the holiday kicking off summer at the lake. It's always wonderfully busy, and this year was no exception! There was no lake, but there were a lot of milestones to celebrate!
We celebrated Justin's 10 year high school reunion at our house. We had a fairly good turn out, and I laughed so hard hearing the stories shared amongst the classmates. It made me realized how much the small town life is important to me, and how excited I am that our kids are lucky enough too enjoy it also. Justin's classmates are such a great group of people, and they have memories that you can ONLY find in small town America!
Justin and I also celebrated our anniversary. Six years of wedded bliss. While we both agreed it's not exactly how we would have chosen to celebrate, it didn't matter HOW we celebrated, or even IF we celebrated. What matters to us is that we were together. We spent some time reflecting on how we have changed in the years we have spent together. Neither of us are in the place we thought we would be, but it's funny how things turn out! We have the perfect life (for us) together. I would never change one second of it.
Now you know there has to be some mushy stuff, too! I am truly married to my BEST friend. We may have had our ups and downs (but then again, who doesn't), but I love my husband more now than I ever have. As our friendship deepens, so does my love. I look forward to growing together even more, and seeing what the years ahead have in store for us.
The celebrations continued as we celebrated AJ's first birthday. I can't believe my baby is going to be a year old in a few short days. It's hard to believe that our beautiful newborn baby is now a vibrant, sassy girl who loves to laugh, play, and brush her sister's hair.
Alexis seemed somewhat oblivious to the activities going on around her. Each present that was opened was something to chew on.
Thankfully, we had a great helper!
Of course, no birthday party is complete without cake!
At first, Alexis did not know what to think of her smash cake, even though it didn't take her long to grab a fistful and squish it between her fingers.
After Papa M showed her where the cake was supposed to go, Alexis decided that it wasn't too bad, and those fistfuls of cake that were so fun too squish went right to her mouth!
Of course, the weekend would not have been complete without spending time with our awesome family playing and barbecuing in the backyard!
Alexis seemed somewhat oblivious to the activities going on around her. Each present that was opened was something to chew on.
Thankfully, we had a great helper!
At first, Alexis did not know what to think of her smash cake, even though it didn't take her long to grab a fistful and squish it between her fingers.
Of course, the weekend would not have been complete without spending time with our awesome family playing and barbecuing in the backyard!
Subscribe to:
Posts (Atom)
