On Tuesday Devyn had her visit to the GI dr at the University of Chicago. It was a long day. We met with the dr who discussed many different possibilities. She suspected in part that she needed an increase in calories. She also feels that a milk protein allergy is partly to blame. She is allergic to one of the proteins found in milk and she will hopefully outgrow it by the time she turns one. That would be so wonderful!
She also wanted to do some further testing to rule out things like kidney disease and a fat malabsorption disorder. I had to bring in a stool sample for testing. In the mean time she called and asked us to bring in another urine sample because some of the bloodwork was concerning. She consulted with a kidney dr after getting the results of the blood test and he agreed that further testing was necessary. I brought in yet another urine sample (this was the 3rd). I got the call today that she thinks the urine sample does indicate kidney disease. She didn't want to make too many assumptions at this point, but she thinks that's what it points to. She sent a message to the kidney dr and we should hear back from her early next week. We may need to follow-up with a kidney specialist at this point. I think we may finally be getting down to the bottom of this.
I also met with a nutritionist on Tuesday. I'm sorry if you are a nutritionist, but I'm not their biggest fan. I think they tend to be very one size fits all. She pretty much told me that Devyn just isn't eating enough. So, I guess I'm supposed to shove food down her throat? She also suggested introducing some formula into her diet to bump up her calories. So, I'm giving her 2 bottles that are a breastmilk/formula mix. I'm introducing more solid foods (which I was already in the process of doing) too. She's also slightly anemic, so they want her to take an iron supplement. I'm always right on the border of anemia and was anemic during both pregnancies. The nutrionist made it seem like this was the only issue and I knew that there was more going on. Whatever. I'll take her suggestions and see if it helps her.
All in all I feel like we may finally be getting to the bottom of this. I'm so thankful that our pediatrician and allergist encouraged us to pursue this. Hopefully by this time next week we'll know more and be able to find some solutions.
Friday, March 14, 2014
Tuesday, March 4, 2014
She's a puzzle
Devyn remains a puzzle to us and to the doctors she's seen. I got her into the pediatrician last week and here's where we're at.
At her appointment with the pediatrican last week Thursday she weighed in at 13lb. 7oz. and 26". She pretty much hasn't grown in length and has only gained a little under a pound in 2 months. They consider this failure to thrive. It's a hard label for me to accept. Although I haven't done anything to make it happen it's hard to hear the word failure attached to your child. I was thinking that maybe I wasn't eating enough or drinking enough and my milk wasn't high enough in calories. Our pediatrician was asking a lot of questions about her eating habits, pooping, spitting up and how things went at the allergist. I told her he thought she could be lactose intolerant. She didn't think so. She said she would be unable to breastfeed if she were truly lactose intolerant. So we were back to square one. She said the first thing to do was a urinalysis to rule out a chronic urinary tract infections. She put a bag on her and we collected a sample. We brought it in and the labs came back that her pH levels were a bit high and she had a slightly elevated level of esterase. Obviously we had no idea what that meant. She said that was a sign that she may have a urinary tract infection, but that the lab may have left the urine out too long and caused false results. They didn't even send her the results. I was very frustrated because they assured me they would fax them to her right away. They didn't send them at all! I also need to call about her blood test results from the allergy testing. I'm hoping to get those today.
Our pediatrican asked if I could collect another sample and bring it directly to her office. So, this morning I put my nurse hat on and got Devyn all set up with another bag to collect the sample. I brought her right to the doctor. Of course we got there and there was nothing in the bag. We sat in a room for about half an hour before she finally went and I was able to hand over her sample. It showed about the same thing, just a little bit lower levels. So it was sent off to be anazlyed and now we wait for those results. At this point it doesn't look like a UTI, but we'll have to wait and see.
The pediatrician also agreed with the allergist that this warrants a visit to a GI dr. to see what they think. I called and got her an appointment next Tuesday. We're seeing a dr. at the University of Chicago, because it's been such a great place for us. We were walking out of the hospital after Devyn's allergy appointment last week and realized we've been going to U of C for 3 years now. It's amazing how quickly time has past and how many great doctors have helped us in those 3 years. Now we're on another journey to start ruling things out and try to figure out why Devyn just doesn't seem to be growing. I don't know what to hope for. I don't know if I hope they find something or if they find nothing. The time between appointments leaves me anxious. I try not to worry or overthink it, because it does no good. So, please pray for Devyn and pray for us. I'm hopeful that the GI dr will have some ideas for us next week, but until then we just have to be patient.
At her appointment with the pediatrican last week Thursday she weighed in at 13lb. 7oz. and 26". She pretty much hasn't grown in length and has only gained a little under a pound in 2 months. They consider this failure to thrive. It's a hard label for me to accept. Although I haven't done anything to make it happen it's hard to hear the word failure attached to your child. I was thinking that maybe I wasn't eating enough or drinking enough and my milk wasn't high enough in calories. Our pediatrician was asking a lot of questions about her eating habits, pooping, spitting up and how things went at the allergist. I told her he thought she could be lactose intolerant. She didn't think so. She said she would be unable to breastfeed if she were truly lactose intolerant. So we were back to square one. She said the first thing to do was a urinalysis to rule out a chronic urinary tract infections. She put a bag on her and we collected a sample. We brought it in and the labs came back that her pH levels were a bit high and she had a slightly elevated level of esterase. Obviously we had no idea what that meant. She said that was a sign that she may have a urinary tract infection, but that the lab may have left the urine out too long and caused false results. They didn't even send her the results. I was very frustrated because they assured me they would fax them to her right away. They didn't send them at all! I also need to call about her blood test results from the allergy testing. I'm hoping to get those today.
Our pediatrican asked if I could collect another sample and bring it directly to her office. So, this morning I put my nurse hat on and got Devyn all set up with another bag to collect the sample. I brought her right to the doctor. Of course we got there and there was nothing in the bag. We sat in a room for about half an hour before she finally went and I was able to hand over her sample. It showed about the same thing, just a little bit lower levels. So it was sent off to be anazlyed and now we wait for those results. At this point it doesn't look like a UTI, but we'll have to wait and see.
The pediatrician also agreed with the allergist that this warrants a visit to a GI dr. to see what they think. I called and got her an appointment next Tuesday. We're seeing a dr. at the University of Chicago, because it's been such a great place for us. We were walking out of the hospital after Devyn's allergy appointment last week and realized we've been going to U of C for 3 years now. It's amazing how quickly time has past and how many great doctors have helped us in those 3 years. Now we're on another journey to start ruling things out and try to figure out why Devyn just doesn't seem to be growing. I don't know what to hope for. I don't know if I hope they find something or if they find nothing. The time between appointments leaves me anxious. I try not to worry or overthink it, because it does no good. So, please pray for Devyn and pray for us. I'm hopeful that the GI dr will have some ideas for us next week, but until then we just have to be patient.
Tuesday, February 25, 2014
An answer for Devyn...maybe
Well we still don't really have an answer for Devyn. Although we might. Let me explain.
I took Devyn to the allergist this morning. We went to Dr. Wolf, Noah's allergist, to see what he thought about the possibility of a milk allergy. Based on her symptoms he thought it was certainly possible. We talked a lot and he said that he would like to see a scratch test done on her. We did the test which puts a little bit of the allergen under her skin to see how it reacts to different triggers. They tested her for enviromental allergies (trees, pets, etc) and milk and peanut. She screamed from the itching and in the end showed that she had no allergies. Huh? No allergies?!? So, we were pretty much back to square one.
The other thing we discussed, which he feels is probably the case, is that she may be lactose intolerant. It is extremely rare for a baby to be born with lactose intolerance. He mentioned it before, but because it's so rare felt like that was less of a possibility. All of her symptoms do point to it.
He sent us down for a blood test to rule out milk allergy and we'll have to wait for the results of that. For now we assume it's lactose intolerance. He was fairly concerned about her very slow weight gain. She's at 13lbs 9oz. She has gained a bit of weight, but feels like it is still too slow. She was 8lb 11oz at birth and then hit a little over 12 lbs at 3 months and has had a hard time gaining since then. He suggested we talk to our pediatrician about seeing a GI. We saw one with Aiden for reflux as a baby, so I know who we'll go to if we need to. He said we can keep an eye on the weight gain and talk to her about it at her 9 month visit. That's still a month and a half away. So, I'm not really sure what we'll do.
I'm not sure if I should feel happy about this or not. On one hand I'm happy it's not an allergy like Noah's where I'll have to carry a second set of epipens. On the other hand we'll have to change how we eat, yet again, when she starts eating with us. I already am dairy free, but I'll have to cook dairy free for her and think about a whole new set of dietary restrictions. I'm relieved that we may finally have an answers, but I'm left thinking, "Now what?". I guess it's time to start learning..again. It's a good thing I enjoy learning so much! If anyone has had a baby with lactose intolerance I would love some guidance!
I took Devyn to the allergist this morning. We went to Dr. Wolf, Noah's allergist, to see what he thought about the possibility of a milk allergy. Based on her symptoms he thought it was certainly possible. We talked a lot and he said that he would like to see a scratch test done on her. We did the test which puts a little bit of the allergen under her skin to see how it reacts to different triggers. They tested her for enviromental allergies (trees, pets, etc) and milk and peanut. She screamed from the itching and in the end showed that she had no allergies. Huh? No allergies?!? So, we were pretty much back to square one.
The other thing we discussed, which he feels is probably the case, is that she may be lactose intolerant. It is extremely rare for a baby to be born with lactose intolerance. He mentioned it before, but because it's so rare felt like that was less of a possibility. All of her symptoms do point to it.
He sent us down for a blood test to rule out milk allergy and we'll have to wait for the results of that. For now we assume it's lactose intolerance. He was fairly concerned about her very slow weight gain. She's at 13lbs 9oz. She has gained a bit of weight, but feels like it is still too slow. She was 8lb 11oz at birth and then hit a little over 12 lbs at 3 months and has had a hard time gaining since then. He suggested we talk to our pediatrician about seeing a GI. We saw one with Aiden for reflux as a baby, so I know who we'll go to if we need to. He said we can keep an eye on the weight gain and talk to her about it at her 9 month visit. That's still a month and a half away. So, I'm not really sure what we'll do.
I'm not sure if I should feel happy about this or not. On one hand I'm happy it's not an allergy like Noah's where I'll have to carry a second set of epipens. On the other hand we'll have to change how we eat, yet again, when she starts eating with us. I already am dairy free, but I'll have to cook dairy free for her and think about a whole new set of dietary restrictions. I'm relieved that we may finally have an answers, but I'm left thinking, "Now what?". I guess it's time to start learning..again. It's a good thing I enjoy learning so much! If anyone has had a baby with lactose intolerance I would love some guidance!
Wednesday, February 19, 2014
Allergy Check-Up
Yesterday was Noah's 6 month allergy check-up. Our allergist was pleasantly surprised that we have made it a full year without another reaction. That was a great reminder of just how serious this year. Being a parent of a child with food allergies is so incredibly overwhelming. We have been through some really stressful situations that have left me paralyzed and wondering how to move forward. This often leaves me wondering when we will have to jump to action and use that Epipen that we dread having to use. Knowing when he is having a reaction can be confusing and incredibly scary. We thought he was having a reaction about a month ago. He was coughing so hard that he was throwing up all over the hallway. My hands were shaking, my chest felt tight and I just wanted to cry. I wanted someone to tell me what to do. The reality is that we have to decide what to do. As the parent these momentous decisions are on us. Thankfully he was fine and just needed to have a drink and use his nebulizer. He was fine. It just reminds me that we need to be ready for that moment when it's not okay.
We talked about many things with our allergist, including snoring. He doesn't snore loud, but enough that he asked us to make a video of him sleeping to be sure he doesn't stop breathing when he's sleeping. Apnea is very serious, so we need to rule it out. I really think he's fine, but we'll make the video to be sure.
We also talked about the fact that he breaks out in hives on his face when he eats cinnamon. He agreed that it's probably a "contact allergy" and the cinnamon is just irritating his skin. The hives don't spread and he has no other symptoms, so it's likely not a problem. We'll still avoid giving it to him, but we can all eat it without worrying.
When we talked about the fact that we haven't gone to children's museums or stadiums out of fear of him coming in contact with peanuts he agreed that we made the right decision. He said it's not worth the risk. Noah's allergy is considered fatal, so we should never take a chance. It's heartbreaking to know that he'll miss out on things, but I want him to know that his safety is more important than any experience or event. He'll just have to learn that everyone is different and deals with difficult situations. His situation may be difficult at times, but he will still be able to live a life full of great experiences.
I also brought up the issues we've had with Devyn and reminded him that she came with to Noah's last appointment. She was only 7 weeks old and already having a lot of gastrointestinal issues and had a rash. We suspected then that it was dairy. She still can't handle if I have any kind of cheese or milk. He agreed that is sounds like a milk allergy, although he mentioned lactose intolerance, because of the rash. He suspects milk allergy because of the rash more than anything. He suggested bringing her in so we could talk about it and do the blood test. Her appointment is nexty Tuesday. The best part about the visit is that her inital visit is scheduled for an hour allowing for as much discussion as possible. A typical visit is scheduled for 30 minutes. What a blessing to have that much time with an expert on such a confusing subject.
As we left the room and headed out to the lobby I noticed a sweet little girl sitting with her mom in the waiting room. She was sucking her thumb and holding a blanky. That part reminded me of Devyn. I couldn't help but notice that she was bald. My heart ached for that mom sitting next to her little girl waiting for a treatment room. The allergy/immunology department is on the same floor as pediatric oncology. I can't even begin to imagine how that family must be feeling and how difficult their situation must be. I said a prayer for them. It's easy to get wrapped up in our own difficulties and forget that someone else is dealing with someone like cancer. It's a great reminder to be thankful for our blessings and thankful that our kids aren't dealing with something so incredibly difficult.
I also come to the University of Chicago and leave with this strange feeling of warmth and joy. It's been such a wonderful part of our lives for the last 3 years. 3 years ago we made our first trip there to see that I received the care I needed to deliver 3 healthy boys. We've entrusted our kids to their care many times and we are so glad that we have.
We talked about many things with our allergist, including snoring. He doesn't snore loud, but enough that he asked us to make a video of him sleeping to be sure he doesn't stop breathing when he's sleeping. Apnea is very serious, so we need to rule it out. I really think he's fine, but we'll make the video to be sure.
We also talked about the fact that he breaks out in hives on his face when he eats cinnamon. He agreed that it's probably a "contact allergy" and the cinnamon is just irritating his skin. The hives don't spread and he has no other symptoms, so it's likely not a problem. We'll still avoid giving it to him, but we can all eat it without worrying.
When we talked about the fact that we haven't gone to children's museums or stadiums out of fear of him coming in contact with peanuts he agreed that we made the right decision. He said it's not worth the risk. Noah's allergy is considered fatal, so we should never take a chance. It's heartbreaking to know that he'll miss out on things, but I want him to know that his safety is more important than any experience or event. He'll just have to learn that everyone is different and deals with difficult situations. His situation may be difficult at times, but he will still be able to live a life full of great experiences.
I also brought up the issues we've had with Devyn and reminded him that she came with to Noah's last appointment. She was only 7 weeks old and already having a lot of gastrointestinal issues and had a rash. We suspected then that it was dairy. She still can't handle if I have any kind of cheese or milk. He agreed that is sounds like a milk allergy, although he mentioned lactose intolerance, because of the rash. He suspects milk allergy because of the rash more than anything. He suggested bringing her in so we could talk about it and do the blood test. Her appointment is nexty Tuesday. The best part about the visit is that her inital visit is scheduled for an hour allowing for as much discussion as possible. A typical visit is scheduled for 30 minutes. What a blessing to have that much time with an expert on such a confusing subject.
As we left the room and headed out to the lobby I noticed a sweet little girl sitting with her mom in the waiting room. She was sucking her thumb and holding a blanky. That part reminded me of Devyn. I couldn't help but notice that she was bald. My heart ached for that mom sitting next to her little girl waiting for a treatment room. The allergy/immunology department is on the same floor as pediatric oncology. I can't even begin to imagine how that family must be feeling and how difficult their situation must be. I said a prayer for them. It's easy to get wrapped up in our own difficulties and forget that someone else is dealing with someone like cancer. It's a great reminder to be thankful for our blessings and thankful that our kids aren't dealing with something so incredibly difficult.
I also come to the University of Chicago and leave with this strange feeling of warmth and joy. It's been such a wonderful part of our lives for the last 3 years. 3 years ago we made our first trip there to see that I received the care I needed to deliver 3 healthy boys. We've entrusted our kids to their care many times and we are so glad that we have.
Thursday, January 30, 2014
Times are a changin'
It's done. 3 boys are in big boy beds. It happened on Monday just before naptime.
Monday I was at the eye Dr. with Reese so Nate stayed home with Aiden, Noah and Devyn. He said it took about an hour to get them to nap. We fully expected a long fight at bedtime. It only took a few minutes and it was quiet. Not one little boy put his feet on the floor. We thought it had to be a fluke.
Tuesday morning they all stayed in bed until we came to get them. Nap time started a bit rough, but they eventually fell asleep, except Noah who said his ear hurt. He just laid on the couch. After naptime they waited until I came to get them again. Tuesday night it only took a few minutes and they were out. No little feet running on the floor above us.
It's now Thusrday and naptime was spectacular. They were out within 15 minutes. They stay in bed until we come get them and proudly announce, "I sleep in my big boy bed!" when we come get them.
Can I get a "Hallelujah!!"?!? Yes! Success! I'm hoping I haven't jinxed it by saying it, but this has gone remarkably well.
Here are our big boys in their beds:
Monday I was at the eye Dr. with Reese so Nate stayed home with Aiden, Noah and Devyn. He said it took about an hour to get them to nap. We fully expected a long fight at bedtime. It only took a few minutes and it was quiet. Not one little boy put his feet on the floor. We thought it had to be a fluke.
Tuesday morning they all stayed in bed until we came to get them. Nap time started a bit rough, but they eventually fell asleep, except Noah who said his ear hurt. He just laid on the couch. After naptime they waited until I came to get them again. Tuesday night it only took a few minutes and they were out. No little feet running on the floor above us.
It's now Thusrday and naptime was spectacular. They were out within 15 minutes. They stay in bed until we come get them and proudly announce, "I sleep in my big boy bed!" when we come get them.
Can I get a "Hallelujah!!"?!? Yes! Success! I'm hoping I haven't jinxed it by saying it, but this has gone remarkably well.
Here are our big boys in their beds:
Reese |
| Aiden
|
 |
| This sweet itty bitty just turned 7 months old!
Times are changing!
|
Thursday, January 23, 2014
Say it aint so
The most dreaded day has come. It's a day that I've been dreading and hoping would be far off. Now it's here. I'm not sad for sentimental reasons. I'm sad because my sanity is going to be put to the test. So, what am I talking about? It's the move from cribs to big boy beds. Lord help us all. This could get ugly.
We really planned on keeping the boys in cribs for as long as humanly possible. Over the past week it has become quite clear that the time is here. It all started last week Friday....
Friday afternoon after their nap I went to get the boys up. I walked in the room and stopped in the doorway. It took my brain a minute to catch up and then I realized what was wrong. Noah and Reese were in the wrong beds. I know they started their nap in the right beds though. They had climbed over the sides of their beds and switched beds. We had a long, stern talk with them about how someone could get hurt. They talked about it a lot that night and we thought they got it.
Saturday morning I went to get them up and Noah was in Reese's bed with him. I guess that message from the day before didn't quite sink in. We talked about it again and things were okay for a couple of days. We knew we were closing in on the time to make the switch to big boy beds.
Tuesday I put them down for a nap. Nate was out plowing. I had just started eating lunch when I heard a thud. A very loud thud. I ran upstairs because I knew what had happened. Reese was standing at the door sobbing and Noah was in Reese's bed. After yet another "chat" I put Noah back in bed and took Reese downstairs and he slept on the couch by me. He had a big bump and a bruise on his forehead. That's when we decided it was time to really get this done. We went out this morning to get the rest of what we needed to get their room ready for this (safety stuff).
Today really took the cake though. They were fairly quiet, but Nate went upstairs to tell them to lay down. He came back downstairs and told me to get up to their room fast. I ran upstairs and saw why he wanted me to get upstairs so quickly. They were taking all their clothes off. Not only that they were taking their diapers off. They are all potty trained now, but they wear a diaper at naptime and bedtime. Not only had they taken them off, but Noah and Reese pooped and threw it. My friends, it was an ugly scene. It could have been much worse, but it was gross. After changing sheets and clothes, cleaning kids and beds, wiping down walls and floors we were having a hard time not laughing. It was awful. I've read about this so many times from other parents of multiples. I never thought it would happen. I should really know better than to say, "not us".
Needless to say the big switch will happen tomorrow and we'll be doing a lot of "checking" to be certain all children are staying clothed at naptime. I guess this is a milestone that's just coming a little sooner than I was prepared for. They are growing faster than I can keep up with!
We really planned on keeping the boys in cribs for as long as humanly possible. Over the past week it has become quite clear that the time is here. It all started last week Friday....
Friday afternoon after their nap I went to get the boys up. I walked in the room and stopped in the doorway. It took my brain a minute to catch up and then I realized what was wrong. Noah and Reese were in the wrong beds. I know they started their nap in the right beds though. They had climbed over the sides of their beds and switched beds. We had a long, stern talk with them about how someone could get hurt. They talked about it a lot that night and we thought they got it.
Saturday morning I went to get them up and Noah was in Reese's bed with him. I guess that message from the day before didn't quite sink in. We talked about it again and things were okay for a couple of days. We knew we were closing in on the time to make the switch to big boy beds.
Tuesday I put them down for a nap. Nate was out plowing. I had just started eating lunch when I heard a thud. A very loud thud. I ran upstairs because I knew what had happened. Reese was standing at the door sobbing and Noah was in Reese's bed. After yet another "chat" I put Noah back in bed and took Reese downstairs and he slept on the couch by me. He had a big bump and a bruise on his forehead. That's when we decided it was time to really get this done. We went out this morning to get the rest of what we needed to get their room ready for this (safety stuff).
Today really took the cake though. They were fairly quiet, but Nate went upstairs to tell them to lay down. He came back downstairs and told me to get up to their room fast. I ran upstairs and saw why he wanted me to get upstairs so quickly. They were taking all their clothes off. Not only that they were taking their diapers off. They are all potty trained now, but they wear a diaper at naptime and bedtime. Not only had they taken them off, but Noah and Reese pooped and threw it. My friends, it was an ugly scene. It could have been much worse, but it was gross. After changing sheets and clothes, cleaning kids and beds, wiping down walls and floors we were having a hard time not laughing. It was awful. I've read about this so many times from other parents of multiples. I never thought it would happen. I should really know better than to say, "not us".
Needless to say the big switch will happen tomorrow and we'll be doing a lot of "checking" to be certain all children are staying clothed at naptime. I guess this is a milestone that's just coming a little sooner than I was prepared for. They are growing faster than I can keep up with!
Thursday, January 16, 2014
Just like her dad and some family fun
Last week Friday I took Devyn in for her 6 month check-up. It turns out she's just like Nate. She is only 13 lbs, which puts her below the 5th percentile. She's 27" tall though, which puts her in the 90th percentile. We have to keep an eye on her weight, because she's really not gaining. Our pediatrician isn't overly concerned though since she just started eating solids a couple of weeks ago. I also have to keep dairy out of my diet and we can't give Devyn dairy until at least age 1. I ate a couple (literally a couple) of mini cheese rice cakes and she broke out in a rash and had a bad tummy ache.
We've also been busy having some fun while Nate's work is slow. We went to the aquarium in Tuesday. We had a great time! Eating lunch at the aquarium gave me heart palpitations and I watched what every other family ate like a hawk. We brought our own lunch, but I still watched everything Noah touched. The boys really enjoyed all the "goldfish", dolphins, sharks, etc. Every fish is a goldfish to them. Here's a picture of them enjoying the dolphin show:
Yesterday my mom helped me take the kids for their Christmas pictures. We were supposed to have them done as a surprise for my dad for Christmas, but all 4 kids ended up getting a fever and we had to cancel. So, yesterday we went and despite Devyn being crabby we got some great shots.
We've also been busy having some fun while Nate's work is slow. We went to the aquarium in Tuesday. We had a great time! Eating lunch at the aquarium gave me heart palpitations and I watched what every other family ate like a hawk. We brought our own lunch, but I still watched everything Noah touched. The boys really enjoyed all the "goldfish", dolphins, sharks, etc. Every fish is a goldfish to them. Here's a picture of them enjoying the dolphin show:
Notice Devyn is watching as well. She didn't sleep the entire 2 1/2 hours we were at the aquarium.
Yesterday my mom helped me take the kids for their Christmas pictures. We were supposed to have them done as a surprise for my dad for Christmas, but all 4 kids ended up getting a fever and we had to cancel. So, yesterday we went and despite Devyn being crabby we got some great shots.
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