We went to Children's today to see Dr. Badar in the GI unit. They called us late last night to get us in as they had a cancellation. Even though we were set to go on Monday, I figured I would go in early.
The usual questions, slightly different outcome. Remember, he eats around 950 calories a day, which is supposed to be normal for his size. Even though the following is diet related and we have been through some things with his diet, we are still going to go with the flow anyway.
Here is our "To Do" list before November 23rd, our next appointment:
-He is on an antihistimine that increases appitites. Two weeks on, one week off until we see the doctor again.
-Set up an appointment at Children's in DC for a Urine, Blood, Stool, and Sweat test, get the results from an RN or send an email to the doctor to request that he call us with the results
-Set up an appointment with Children's in DC's nutritionist, Jessica, to discuss his diet.
-Set up an appointment with Children's in DC's "Feeding Team". A team of 5 doctors that evaluate how to get children to eat more. There is a 6 month waiting list for this team, but we are going to get on it anyway and cancel if we don't need them anymore.
-Do yet again another food log.
So..if there is something obvious from the tests, we will address those issues. If there isn't, but he is gaining weight due to the other things we are doing, we will just leave him alone, continue what we were doing and monitor him closely.
But, if he isn't gaining weight still, we have to do an endoscopy. If nothing comes from that, we are going to have to do a feeding tube until he is 'beefed up' in the doctor's words. I hope it doesn't come to that, so I'm more determined then EVER to get this kid to eat more and PRAY that it doesn't come to that. Regardless, God has a plan and we will get through anything thrown our way.
On a more positive note--AJ started combining two words together the other day. He said "Big Ball" and "It's Good". So smart!
We are off to the funeral tomorrow. I promise, though, when I get back I will update with some pictures! My new camera has taken some really great photos of AJ, but I have to figure out how to get them from my camera to my computer.
Thursday, October 22, 2009
Wednesday, October 14, 2009
Thoughts
I try to stay busy so my thoughts don't get the best of me. Although so incredible busy today and yesterday (with work of course), I still have had plenty of time to think about my grandfather's passing.
I thought about how at my high school graduation he pulled me aside and said "promise me in 4 years I will be attending your college graduation". He wanted me to graduate so badly from college--and it brought him so much pride to see me walk across that stage to receive my diploma. While in school I often had many moments where I just wanted to give up. But I always thought about what he said and it would motivate me to get through it.
He would never forget a birthday or a holiday (Ok, I admit it--it was probably Grandma Marie, but I know it was him too!). Every holiday I looked forward to Valentines Day, Easter, Christmas, any holiday to opening up my grandparents confetti filled cards. I would let the confetti fall to the ground because it was so pretty! One year my mom had us all collect the confetti they had sent us all and we sent my Grandma a card filled with all of the collected confetti. I'm sure it put a smile on both of their faces.
I thought about how I was CONVINCED my grandfather was Santa Clause. Think of it--your grandfather being THE Santa Clause. I admit there is a part of me that still thought of him as Santa Clause in recent years. Until he lost weight, he had the big belly, the round face, the rosy cheeks and the long beard! His house was always decorated so beautiful for Christmas and his gifts were always SO AWESOME. When my mom told me that Santa must have forgotten the Easy Bake Oven I wanted, later that afternoon when we went to visit "Pop Pop Gloses", he had the Easy Bake Oven I SO WANTED! This happened every year until I found out that "Santa wasn't real". Yeah right. Santa was real, he was my grandfather! Maybe that is why I was the last to find out in my 6th grade class that Santa wasn't real (this is after my teacher told me it was made up!).
I thought about how he was ALWAYS there for me. Grandma Marie and Grandpa would never miss a beat--there for all of the important events, despite having to travel. Dance recitals, graduation, you name it and they were there. They loved us so much and we could never do wrong in their eyes.
I thought about my grandmother--still alive and alone in that house they built together. When they first moved in to the 55 and over community, John and I went to visit the very beautiful home and my grandparents took us on a tour. I'm still impressed with the spice rack he installed (so organized and easy!) and the electronic blinds in the bathroom. My grandfather did so much to that house--he even installed the Chandalier in the foyer! He was proud of accomplishments. Anyway, my grandmother.....it seems to be a common theme with the woman in my life. Coming from divorced parents, one of whom has divorced parents, I have a lot of grandparents. My grandmothers have vastly outlived my grandfathers. Alone and missing their loved ones. I hope for my grandmother that she goes on to find something that will make her happy. It's terrible to lose your best friend, lover and husband.
I thought about the house my grandfather had (until the most recent house)--the house my father grew up in. A few years ago, before my grandfather sold the house, my father and I visited his house. He showed me the room he grew up in and the paintings in his closet--still there after all those years. How amazing to have memories like that. I remember the pool they had in their backyard and how AMAZING of a griller my grandfather is. I still think about how particular he was with grilling and how I break those rules every time I fire up our electric grill. Oh how amazing those pork chops were that he would grill in the summer time! I can still smell the grill while I would be running around in my bathing suit.
I could go on and on about the great and wonderful memories I have had with him. I hope that I have the courage to speak at his funeral and share these thoughts with the rest of those that loved him. Grandpa--you will be missed. Truely, truely missed. I cry because I am happy for you--to be in a better place. I cry because I will miss you so very much. I cry because I didn't have the opportunity to say goodbye and I wish I had. But know that I will cherish these memories for the rest of my life. You have inspired me and have always been there for me, and for that, I am so thankful. So I raise my glass and cheers to you--always in my heart. I love you.
I thought about how at my high school graduation he pulled me aside and said "promise me in 4 years I will be attending your college graduation". He wanted me to graduate so badly from college--and it brought him so much pride to see me walk across that stage to receive my diploma. While in school I often had many moments where I just wanted to give up. But I always thought about what he said and it would motivate me to get through it.
He would never forget a birthday or a holiday (Ok, I admit it--it was probably Grandma Marie, but I know it was him too!). Every holiday I looked forward to Valentines Day, Easter, Christmas, any holiday to opening up my grandparents confetti filled cards. I would let the confetti fall to the ground because it was so pretty! One year my mom had us all collect the confetti they had sent us all and we sent my Grandma a card filled with all of the collected confetti. I'm sure it put a smile on both of their faces.
I thought about how I was CONVINCED my grandfather was Santa Clause. Think of it--your grandfather being THE Santa Clause. I admit there is a part of me that still thought of him as Santa Clause in recent years. Until he lost weight, he had the big belly, the round face, the rosy cheeks and the long beard! His house was always decorated so beautiful for Christmas and his gifts were always SO AWESOME. When my mom told me that Santa must have forgotten the Easy Bake Oven I wanted, later that afternoon when we went to visit "Pop Pop Gloses", he had the Easy Bake Oven I SO WANTED! This happened every year until I found out that "Santa wasn't real". Yeah right. Santa was real, he was my grandfather! Maybe that is why I was the last to find out in my 6th grade class that Santa wasn't real (this is after my teacher told me it was made up!).
I thought about how he was ALWAYS there for me. Grandma Marie and Grandpa would never miss a beat--there for all of the important events, despite having to travel. Dance recitals, graduation, you name it and they were there. They loved us so much and we could never do wrong in their eyes.
I thought about my grandmother--still alive and alone in that house they built together. When they first moved in to the 55 and over community, John and I went to visit the very beautiful home and my grandparents took us on a tour. I'm still impressed with the spice rack he installed (so organized and easy!) and the electronic blinds in the bathroom. My grandfather did so much to that house--he even installed the Chandalier in the foyer! He was proud of accomplishments. Anyway, my grandmother.....it seems to be a common theme with the woman in my life. Coming from divorced parents, one of whom has divorced parents, I have a lot of grandparents. My grandmothers have vastly outlived my grandfathers. Alone and missing their loved ones. I hope for my grandmother that she goes on to find something that will make her happy. It's terrible to lose your best friend, lover and husband.
I thought about the house my grandfather had (until the most recent house)--the house my father grew up in. A few years ago, before my grandfather sold the house, my father and I visited his house. He showed me the room he grew up in and the paintings in his closet--still there after all those years. How amazing to have memories like that. I remember the pool they had in their backyard and how AMAZING of a griller my grandfather is. I still think about how particular he was with grilling and how I break those rules every time I fire up our electric grill. Oh how amazing those pork chops were that he would grill in the summer time! I can still smell the grill while I would be running around in my bathing suit.
I could go on and on about the great and wonderful memories I have had with him. I hope that I have the courage to speak at his funeral and share these thoughts with the rest of those that loved him. Grandpa--you will be missed. Truely, truely missed. I cry because I am happy for you--to be in a better place. I cry because I will miss you so very much. I cry because I didn't have the opportunity to say goodbye and I wish I had. But know that I will cherish these memories for the rest of my life. You have inspired me and have always been there for me, and for that, I am so thankful. So I raise my glass and cheers to you--always in my heart. I love you.
Tuesday, October 13, 2009
Grandpa Glose
This morning my grandfather, AJ's great-grandfather, Grandpa Glose, passed away. We are still in utter shock. He was a wonderful grandfather. Here is a picture of AJ and Grandpa last November, during a visit for AJ's baptism:
I had this nagging feeling to stop by and visit him on our two one day trips this summer to Philly, but since we were on limited time, I couldn't. I'm upset I didn't listen to myself and make time :(.
Saturday, October 10, 2009
Celiac
In talking with someone who is gluten intolerant, it appears you CAN test negative for the antibodies they are testing for in the blood and still be gluten intolerant. There is a whole year long test they do for negative test results. It includes a biopsy. I guess we will see. Our plan was to go gluten free starting now to test AJ's intolerance, but apparently that will cause results to be skewed.
Anyway, in light of this, I'm more hopeful that my initial maternal diagnosis was correct. The fix is a simple diet change--no more wheat, oat, barley. There are gluten free products popping up more and more these days that it makes it easy for a gluten intolerant person to live a normal life. Maybe closure will come soon.
Anyway, in light of this, I'm more hopeful that my initial maternal diagnosis was correct. The fix is a simple diet change--no more wheat, oat, barley. There are gluten free products popping up more and more these days that it makes it easy for a gluten intolerant person to live a normal life. Maybe closure will come soon.
Thursday, October 8, 2009
Medical Frustrations
Where do I begin? I try to make this blog positive--since our life is so wonderful. We aren't perfect, but we are happy! I have refrained from talking about the following situation with most people and never thought I would be posting this on our blog--but this blog is our family's diary and it wouldn't be complete without this major thing in our life.
Taking it back to the beginning--at 6 months, AJ was a very chunky monkey. He weighed 19 pounds. He measured in the 75% for weight and 70% for height. We were given the ok to start giving him solids at the 6 month mark (I know a lot of peds give the ok at 4 months, but ours didn't as they believe that it isn't necessary and breastmilk or formula should be the only source of nutrition until 6 months of age). AJ never really liked purees. It was always a struggle to feed him solids and he nursed every three hours until at least 9 months of age. Our doctor said it was ok as it's just practice and breastmilk would be his main source of nutrition until 12 months old. Anyway, basically this was normal.
At 9 months he had gained only 19 ounces--so now is is 19.19. He dropped a bit in the percentile in height and weight. They thought it was ok since he was SO active and didn't take in solids as well as some kids. They did a finger prick at the results were positive for low iron count. He went on a iron supplement.
At 12 months he lost weight--now he is 19 pounds, 2 ounces. The finger prick showed he was EVEN lower in iron despite the iron supplement. We increased the iron supplement to two times a day for a month.
13 months--go back to the doctor for blood tests--another finger prick. He is now 19 pounds even, still not eating well (and on finger foods completely now--which he liked more), and his iron was STILL low. They take a real blood test (three vials!) and send off to the lab. Meanwhile, we increase the dose to three times a day.
A week later we get the results--AJ is def. anemic but we have no idea why. We schedule an appointment to come in. In the meantime she takes him off of the iron supplement because it now shows that the iron intake is ok--he just isn't keeping it in his system for whatever reason.
Now it's August and we go in to see the doctor. She orders more blood tests and we are CONVINCED that he has celiac disease since he has basically every symptom there is. John and I make the decision to gut gluten out of his diet.
A week later, the results come back and he is negative for EVERYTHING from Celiac to Chrones. The doctor we love goes on vacation for two weeks--so these results came from a doctor that has never seen AJ. In the meantime, AJ got really sick to where he was not eating food. John and I were both scared. After three days and a few dry diapers, we go in for a quick visit with the new doctor to see if he is dehydrated. He isn't but she is curious with this other stuff.
We go BACK in for a longer visit. She orders more tests. She orders us to track his caloric intake for a week. Turns out AJ is eating an OK amount. On the lower end, but normal nonetheless.
We go for a Kidney ultrasound--those are fine.
We go in for his 15 month appointment and he lost even more weight, despite now eating really great. He is now 18 pounds 12 ounces and off the charts for weight.
A few days later the previous lab results come back--those were to measure his growth hormone. They call and LEAVE A MESSAGE (both doctors we love are out of town at this point--another new doctor in the practice) to tell us his growth hormone levels were abnormal and now we have to go to Childrens Hospital. I got upset, tried to call back, and couldn't get a hold of them. That really made me mad. How dare you give me results like that. That was the end of August.
Wait, wait, wait....yes, there is a long waiting list to get in with Childrens.
So this past Tuesday we go to Childrens Hospital in DC to see the endrochronologist. I really was convinced that this would give us closure. AJ feels like he is gaining weight (despite my cousin Colleen calling him scrawny--Coll if you are reading this, yes I'm calling you out..you had no idea what we have been through, so it's ok :)), he is eating much better, and I'm convinced it's a diet thing and now he has fixed it himself, so we are good to go.
AJ did not gain a single ounce or grow at all.
The doctor told us he does not have a growth hormone deficiency. He didn't test him for anything--he looked at the results from an earlier blood test and concluded that something else was causing his hormone to lack--that it's more then lacking the hormone to show up in blood results. He thinks it is GI related and even says he thinks it's Celiac (remember--he tested negative before though). He says he is "really concerned about his weight" and that "it isn't normal for his weight to drop like it has". He isn't concerned with his height--in fact, he said that although he did drop, when he electronically does a height analysis (vs. manual like our ped did), he comes up with 20%. But he is below the charts in weight and when combining the two, because his weight is so low, he is off the charts because of it.
He refers us to another department at Childrens--GI. We see the doctor on October 26th (thankfully in Fairfax this time, no way am I EVER going back to the DC hospital unless it's an emergency ever again).
John and I are left in pure frustration. We are frankly at our wits end. WTH is wrong with our little boy? Months and months with no answers. And now I feel we will go on October 26th and there will be NO answers once again. We will continually feel as if we are being pushed from one doctor to the next with nothing to show for it. And, meanwhile...we are wasting precious time. Will this affect AJ for the rest of his life? If we delay it as we have, will there be long term effects from that?
It's so frustrating, I can't even tell you. BUT..on a very positive note, we have the best little boy in the world. He is amazing in every way. He is loving, happy, and so smart. He is excelling socially more than I would have ever imagined. He talks a ton and there is pretty much no word he won't at least try to say. He can point to a body part and tell you what it is. When you ask him what a certain animals does, he will make the animal sound. He knows what cars, planes, trucks, and trains are. I am so happy that despite all of this, he is such a good little boy. Although we have been so frustrated, we find solace in the fact that he is so amazing.
Taking it back to the beginning--at 6 months, AJ was a very chunky monkey. He weighed 19 pounds. He measured in the 75% for weight and 70% for height. We were given the ok to start giving him solids at the 6 month mark (I know a lot of peds give the ok at 4 months, but ours didn't as they believe that it isn't necessary and breastmilk or formula should be the only source of nutrition until 6 months of age). AJ never really liked purees. It was always a struggle to feed him solids and he nursed every three hours until at least 9 months of age. Our doctor said it was ok as it's just practice and breastmilk would be his main source of nutrition until 12 months old. Anyway, basically this was normal.
At 9 months he had gained only 19 ounces--so now is is 19.19. He dropped a bit in the percentile in height and weight. They thought it was ok since he was SO active and didn't take in solids as well as some kids. They did a finger prick at the results were positive for low iron count. He went on a iron supplement.
At 12 months he lost weight--now he is 19 pounds, 2 ounces. The finger prick showed he was EVEN lower in iron despite the iron supplement. We increased the iron supplement to two times a day for a month.
13 months--go back to the doctor for blood tests--another finger prick. He is now 19 pounds even, still not eating well (and on finger foods completely now--which he liked more), and his iron was STILL low. They take a real blood test (three vials!) and send off to the lab. Meanwhile, we increase the dose to three times a day.
A week later we get the results--AJ is def. anemic but we have no idea why. We schedule an appointment to come in. In the meantime she takes him off of the iron supplement because it now shows that the iron intake is ok--he just isn't keeping it in his system for whatever reason.
Now it's August and we go in to see the doctor. She orders more blood tests and we are CONVINCED that he has celiac disease since he has basically every symptom there is. John and I make the decision to gut gluten out of his diet.
A week later, the results come back and he is negative for EVERYTHING from Celiac to Chrones. The doctor we love goes on vacation for two weeks--so these results came from a doctor that has never seen AJ. In the meantime, AJ got really sick to where he was not eating food. John and I were both scared. After three days and a few dry diapers, we go in for a quick visit with the new doctor to see if he is dehydrated. He isn't but she is curious with this other stuff.
We go BACK in for a longer visit. She orders more tests. She orders us to track his caloric intake for a week. Turns out AJ is eating an OK amount. On the lower end, but normal nonetheless.
We go for a Kidney ultrasound--those are fine.
We go in for his 15 month appointment and he lost even more weight, despite now eating really great. He is now 18 pounds 12 ounces and off the charts for weight.
A few days later the previous lab results come back--those were to measure his growth hormone. They call and LEAVE A MESSAGE (both doctors we love are out of town at this point--another new doctor in the practice) to tell us his growth hormone levels were abnormal and now we have to go to Childrens Hospital. I got upset, tried to call back, and couldn't get a hold of them. That really made me mad. How dare you give me results like that. That was the end of August.
Wait, wait, wait....yes, there is a long waiting list to get in with Childrens.
So this past Tuesday we go to Childrens Hospital in DC to see the endrochronologist. I really was convinced that this would give us closure. AJ feels like he is gaining weight (despite my cousin Colleen calling him scrawny--Coll if you are reading this, yes I'm calling you out..you had no idea what we have been through, so it's ok :)), he is eating much better, and I'm convinced it's a diet thing and now he has fixed it himself, so we are good to go.
AJ did not gain a single ounce or grow at all.
The doctor told us he does not have a growth hormone deficiency. He didn't test him for anything--he looked at the results from an earlier blood test and concluded that something else was causing his hormone to lack--that it's more then lacking the hormone to show up in blood results. He thinks it is GI related and even says he thinks it's Celiac (remember--he tested negative before though). He says he is "really concerned about his weight" and that "it isn't normal for his weight to drop like it has". He isn't concerned with his height--in fact, he said that although he did drop, when he electronically does a height analysis (vs. manual like our ped did), he comes up with 20%. But he is below the charts in weight and when combining the two, because his weight is so low, he is off the charts because of it.
He refers us to another department at Childrens--GI. We see the doctor on October 26th (thankfully in Fairfax this time, no way am I EVER going back to the DC hospital unless it's an emergency ever again).
John and I are left in pure frustration. We are frankly at our wits end. WTH is wrong with our little boy? Months and months with no answers. And now I feel we will go on October 26th and there will be NO answers once again. We will continually feel as if we are being pushed from one doctor to the next with nothing to show for it. And, meanwhile...we are wasting precious time. Will this affect AJ for the rest of his life? If we delay it as we have, will there be long term effects from that?
It's so frustrating, I can't even tell you. BUT..on a very positive note, we have the best little boy in the world. He is amazing in every way. He is loving, happy, and so smart. He is excelling socially more than I would have ever imagined. He talks a ton and there is pretty much no word he won't at least try to say. He can point to a body part and tell you what it is. When you ask him what a certain animals does, he will make the animal sound. He knows what cars, planes, trucks, and trains are. I am so happy that despite all of this, he is such a good little boy. Although we have been so frustrated, we find solace in the fact that he is so amazing.
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