At Kara's two year checkup her doctor suggested we get her in to see a pediatric dentist. With all the vomiting and reflux, plus still having bottles of Neocate every day, she was worried that her teeth were starting to look a little opaque, like maybe the enamel was beginning to wear off. The last thing Kara needs is tooth problems on top of everything else that she's gone through. I made her an appointment with a pediatric group that comes to the area once a week - we were fortunate to get her in, in just a matter of days. In fact, they were able to take both girls so Brenna had her first dentist appointment at the same time! (How did she become four already? Where have the last few years gone with her???)
Brian was unable to get work off - with it finally getting nice outside he has been busy. I had my wonderful, helpful cousin come with to help me out, figuring I'd need it. Kara is pretty used to getting checked out and I was most nervous about Brenna. They called Brenna's name and she went back like such a big girl. She got a little weepy, we could hear her a few times while they were trying to coax Kara into letting them check her out! The girls that worked with my girls were amazing. Kara got a fancy pair of sunglasses to put on and they used the brush on her fingernail, counting each one, showed her how they squirt the water - Kara thought this was all pretty cool! Next was getting the chair up high enough and then laying her down. This is when she panicked! We got through it, I held her down, trying to console her and Marie went back and forth between Brenna and Kara. The dentist soon came over and played with her a little bit before we got settled for him to look things over. The good news is her teeth look great! He was very pleased at how well they look for everything she's been through! I explained how we have to hold her down usually to brush her teeth - that morning was especially a battle. You have to have clean teeth before the dentist, right? I held her down while she was screaming on the floor to brush them! Terrible! He said this is typical two year old behavior!
Brenna did ok and then had to have x-rays done. She had a fit. The lady that was doing her x-rays was a little rough with her and I wasn't very happy about that. They are uncomfortable and Brenna was scared to death. I'm SO glad I had Marie there to help me out, but both girls crying for me was pretty tricky! They both got a wonderful review from the dentist, with the exception of the crowding they have in their mouths already. Both Brian and I had major crowding issues and years of orthodontic work so this was no real surprise to me. I guess we better start putting money away for their braces now!
I'm so glad to have that behind us. They both need to go back at six months. Hopefully that one will be a little easier. They explained that each time it gets a little better!
Sunday, May 29, 2011
GI Follow Up
Earlier this week was Kara's six week GI follow up. Dr. S. put Kara on Prilosec her last appointment to see if it would help with her urpiness but wanted to see her soon to see how it was going. My report for her was that we basically have gotten nowhere with trials, let alone trialing the Prilosec!
I began this appointment telling her that we had decided to re-trial green beans after a questionable reaction night and it ended on day three with a full blown FPIES vomitting reaction. We are still having problems from that trial - Kara has been waking in the night screaming and it's been hard to get her back to sleep. She's also had lots of icky post-reaction diapers. I then went on to explain how we couldn't get anywhere with the Prilosec. She'd have it for a few days, do much better but then get so constipated, a symptom Kara has NEVER dealt with!
It was decided that we aren't going to be doing any food trials for the next few months. With Kara's chronic ear infections over the last six months and being off and on antibiotics, her gut is out of balance. She thinks that full rest with Kara's safe foods only, along with Kara's surgery should help her out - the surgery will help with the ear infections so with NOT being on antibiotic we can hopefully find her baseline again. We will be following up with her in two months to see if we can begin food trials again. She's also going to be consulting with Kara's Allergist to see if he has any insight on this as well. I'm not sure what our next step will be if this doesn't work - I'm thinking scope again (UGH!) upper GI possibly, no idea. She did give us a prescription for Zantac now - sort of a step down from the Prilosec so we will try that in the next few days.
I was thinking that no new good trials would be ok since we really haven't passed any foods for a few months. We've done trials here and there but never anything long enough to actually pass. I've given her things here and there to just try once in a while and I almost did this the other day before I remembered that we are on hold from all of this! It's going to be tough, I'm afraid, with summer here. If we'd be out somehwere and there was a new food, once in a while I'd give her something - pineapple for example. Knowing we had nothing else new in her diet, if she had any off symptoms it would be from that. It's going to be a learning experience for us - just like everything else is!
Being at this appointment, I was again, very impressed with Kara's GI doctor. She has come a LONG way with FPIES. Last fall she wouldn't refer to it as FPIES - it was "simply" multiple food allergies, followed by food protein enteropathy. This time she openly called it FPIES and even talked about it a little bit. She said "my other FPIES patients" which caught my attention. I know she sees another little girl who's mom is active in our FPIES boards but she made it sound like there were a few! I asked her "are you seeing a lot more FPIES patients lately?" Her reply "I'm not sure that there are a lot more out there, it's just that we didn't recognize it before." WOW! AWARENESS!!!! This made me so happy to hear that they are finally starting to accept it as an actual diagnosis even though the only way to diagnose it is symtomatically and ruling everything else out!
I've stuck with Dr. S from the U - I've been very pleased with the way that she's cared for Kara. So pleased, in fact, that even though she didn't necessarily believe in FPIES 9 months ago, her treatment wasn't going to make any difference so we've stuck with her. (Remember our first GI Appt? "Your daugher does not have FPIES, FPIES babies are failling to thrive, your child is not failing to thrive." UGH. I still shudder when I think of that AWFUL doctor.) I'm very pleased in how she wants to keep following up with us, not just letting us go at this point. I'm fine with our care plan with her for now and am hoping that in a few short months, we'll be set up to not have a follow up until next years birthday!
I began this appointment telling her that we had decided to re-trial green beans after a questionable reaction night and it ended on day three with a full blown FPIES vomitting reaction. We are still having problems from that trial - Kara has been waking in the night screaming and it's been hard to get her back to sleep. She's also had lots of icky post-reaction diapers. I then went on to explain how we couldn't get anywhere with the Prilosec. She'd have it for a few days, do much better but then get so constipated, a symptom Kara has NEVER dealt with!
It was decided that we aren't going to be doing any food trials for the next few months. With Kara's chronic ear infections over the last six months and being off and on antibiotics, her gut is out of balance. She thinks that full rest with Kara's safe foods only, along with Kara's surgery should help her out - the surgery will help with the ear infections so with NOT being on antibiotic we can hopefully find her baseline again. We will be following up with her in two months to see if we can begin food trials again. She's also going to be consulting with Kara's Allergist to see if he has any insight on this as well. I'm not sure what our next step will be if this doesn't work - I'm thinking scope again (UGH!) upper GI possibly, no idea. She did give us a prescription for Zantac now - sort of a step down from the Prilosec so we will try that in the next few days.
I was thinking that no new good trials would be ok since we really haven't passed any foods for a few months. We've done trials here and there but never anything long enough to actually pass. I've given her things here and there to just try once in a while and I almost did this the other day before I remembered that we are on hold from all of this! It's going to be tough, I'm afraid, with summer here. If we'd be out somehwere and there was a new food, once in a while I'd give her something - pineapple for example. Knowing we had nothing else new in her diet, if she had any off symptoms it would be from that. It's going to be a learning experience for us - just like everything else is!
Being at this appointment, I was again, very impressed with Kara's GI doctor. She has come a LONG way with FPIES. Last fall she wouldn't refer to it as FPIES - it was "simply" multiple food allergies, followed by food protein enteropathy. This time she openly called it FPIES and even talked about it a little bit. She said "my other FPIES patients" which caught my attention. I know she sees another little girl who's mom is active in our FPIES boards but she made it sound like there were a few! I asked her "are you seeing a lot more FPIES patients lately?" Her reply "I'm not sure that there are a lot more out there, it's just that we didn't recognize it before." WOW! AWARENESS!!!! This made me so happy to hear that they are finally starting to accept it as an actual diagnosis even though the only way to diagnose it is symtomatically and ruling everything else out!
I've stuck with Dr. S from the U - I've been very pleased with the way that she's cared for Kara. So pleased, in fact, that even though she didn't necessarily believe in FPIES 9 months ago, her treatment wasn't going to make any difference so we've stuck with her. (Remember our first GI Appt? "Your daugher does not have FPIES, FPIES babies are failling to thrive, your child is not failing to thrive." UGH. I still shudder when I think of that AWFUL doctor.) I'm very pleased in how she wants to keep following up with us, not just letting us go at this point. I'm fine with our care plan with her for now and am hoping that in a few short months, we'll be set up to not have a follow up until next years birthday!
Wednesday, May 25, 2011
Two Year Check Up
Monday Kara had her two year check up. I'm so happy to announce and could shout from the roof tops that WE ARE NO LONGER ON WEIGHT OR HEIGH WATCH! Kara is about 24 1/2 pounds and 33 inches long. She is stable in the low twentys for percentile on both her height and weight. She's looking great! We no longer have to have a monthly weight check (don't let us kid you, we never had a specific appointment for this, as we've been averaging a doctor appointment at least once every other week lately!) but will do a six month follow up instead! This is wonderful news! Kara is still getting at least two six ounce bottles of Neocate a day, some days more and if she's not feeling well it may be four or five bottles. Neocate is still a large part of her diet!
Kara's skin is the same as it's been - with her recent green bean reaction it's in bad shape. This is nothing new and we have quite the cocktail to help get it under control. The doctor also mentioned her cough and that especially with this time of year, we could be nebbing her with the Pulmicort daily to try and help her symptoms and use the Albuterol as needed.
Kara needs to see a dentist now. With all the reflux and vomiting that's gone on, it was decided to get her in sooner than later, before we have bigger problems on our hands. I wasn't surprised by this as Dr. S, our GI doctor brought this to my attention at our last appointment with her. Kara now has an appointment to see a pediatric dentist tomorrow morning. Her teeth are opaque looking so I'm a little nervous about what's going to happen with this. She offered to refer us to Gillette again but I opted for a clinic a little more local. If she has to have any procedures done, we'll have to go to Gillette or the U but we'll take that as it comes.
Other than that, it was a great appointment. Kara talked quite a bit, and acted her normal two year old self. She is finally on track developmentally since she just started talking. I'm already missing those days when she couldn't talk!!! It's almost more difficult having an FPIES child who CAN talk - makes me feel that much more helpless when she's having problems or crying "No doctor!" in the waiting room at her appointments! I briefed her on what's happening in the next few weeks with all of her appointments and we were on our way. It's a very busy week of appointments, prepping us for a very busy next few weeks coming up!
Kara's skin is the same as it's been - with her recent green bean reaction it's in bad shape. This is nothing new and we have quite the cocktail to help get it under control. The doctor also mentioned her cough and that especially with this time of year, we could be nebbing her with the Pulmicort daily to try and help her symptoms and use the Albuterol as needed.
Kara needs to see a dentist now. With all the reflux and vomiting that's gone on, it was decided to get her in sooner than later, before we have bigger problems on our hands. I wasn't surprised by this as Dr. S, our GI doctor brought this to my attention at our last appointment with her. Kara now has an appointment to see a pediatric dentist tomorrow morning. Her teeth are opaque looking so I'm a little nervous about what's going to happen with this. She offered to refer us to Gillette again but I opted for a clinic a little more local. If she has to have any procedures done, we'll have to go to Gillette or the U but we'll take that as it comes.
Other than that, it was a great appointment. Kara talked quite a bit, and acted her normal two year old self. She is finally on track developmentally since she just started talking. I'm already missing those days when she couldn't talk!!! It's almost more difficult having an FPIES child who CAN talk - makes me feel that much more helpless when she's having problems or crying "No doctor!" in the waiting room at her appointments! I briefed her on what's happening in the next few weeks with all of her appointments and we were on our way. It's a very busy week of appointments, prepping us for a very busy next few weeks coming up!
Thursday, May 19, 2011
FAIL
A few weeks ago Kara, about 3 hours after dinner, Kara started vomiting. I was very suspicious about the green beans that she ate for dinner that night. She had had green beans in the past but we don't eat them and we hadn't had them in a long time. Because of this, I figured we should re-trial to see if they were a true pass or not. I very well could have prematurely called them a pass.
We've had some strange symptoms. Night waking, one rotten diaper per day, but nothing was really clear. The last three nights she's had beans consecutively. Two nights ago she was awake in the night crying. Since Brenna is a bed-hopper and ends up in our bed each night, Brian got up with Kara and took her to B's bed. Kara cried for quite a while before finally settling in. We got to daycare yesterday morning and I explained the circumstances of the night before. With that, Kara had a nice, big, sour burp. I gave the daycare gal a quick report - she hadn't pooped yet but to please let us know if she has a few dirty diapers and if they continue to be "nasty". I called around 11:30 yesterday and she had only had one and seemed to be doing just fine. Hmm. The question continues. Is it the beans? Is it teething? She's been chewing on her hand, way back in her mouth quite a bit. Her eczema is broken out pretty bad, all over her back and tummy as well as her normal problem areas - creases and tops of her feet. Is this just "normal" toddler teething (molars?) behavior or are we working towards a build reaction? Unfortunately, the only way to find out for sure is to keep going. I felt fairly confident that she'd do fine - we haven't had a true food fail since last July when she got so sick from pears!
Yesterday was Kara's birthday. We had an event at the fire hall to attend and a bbq afterwards. I packed Kara's dinner - a hot dog to put on the grill, green beans, a bowl of fruit and potato chips. Her dinner was almost the same as everyone else, yet perfectly safe for Kara, or so we thought. We got home, put our tired out kiddos to bed and soon followed.
I woke up to Kara crying around 1:00 this morning. She was crying pretty hard, and I couldn't seem to snap out of it. I got Brian to wake up and run up to check on her. He hollered in the monitor for me so I followed, to find Kara's crib covered in vomit. Nasty, sour, green bean FPIES reaction vomit. She was ok, just very upset about throwing up. I was going to clean her up at the sink but it was everywhere so I gave her a bath instead. She seemed ok, let me wash her hair, we finished throwing pukey bedding in the wash, getting Kara in new pj's and snuggling her to make sure she was going to be ok. We went to Brenna's bed again. I asked her if she wanted a bottle. Her Neocate usually settles her down, I think it makes her feel good, often times. I was cleary NOT thinking, it now being 2:00 a.m.. We snuggled in Brenna's bed and not long after Kara started puking again. I hollered for Brian this time, and we both held her as she emptied her stomach again. Over and over again until there was nothing left to come out. I kept watching her, watching for signs of shock, making sure she was staying "with us". We've been down this road before and it is one of the scariest things we've gone through with her. She seemed to be doing ok, we did all the clean up again and both laid with her. Kara laid awake in bed until about 4:00 this morning. I couldn't sleep either. She'd hold my hand, snuggle, say "Mama" once in a while to make sure I was still there. So sweet.
This morning I am home with her. Her mood is like being on a rollercoaster. Happy, sad, mad, she just simply doesn't feel good as much as she's trying to be ok. Her face is really puffy, her cheeks are bright red. She's eating and drinking decent so I'm just watching for signs of dehydration, trying to make sure we dont' go down that road. In one of her fussy moments this morning I asked her what was "owie" and she pointed to her ear. Do I dare trust a newly-turned-two-year-old? That'd be all we need is another ear infection on top of this green bean fail reaction.
Bring on the weekend. I'm ready for it.
We've had some strange symptoms. Night waking, one rotten diaper per day, but nothing was really clear. The last three nights she's had beans consecutively. Two nights ago she was awake in the night crying. Since Brenna is a bed-hopper and ends up in our bed each night, Brian got up with Kara and took her to B's bed. Kara cried for quite a while before finally settling in. We got to daycare yesterday morning and I explained the circumstances of the night before. With that, Kara had a nice, big, sour burp. I gave the daycare gal a quick report - she hadn't pooped yet but to please let us know if she has a few dirty diapers and if they continue to be "nasty". I called around 11:30 yesterday and she had only had one and seemed to be doing just fine. Hmm. The question continues. Is it the beans? Is it teething? She's been chewing on her hand, way back in her mouth quite a bit. Her eczema is broken out pretty bad, all over her back and tummy as well as her normal problem areas - creases and tops of her feet. Is this just "normal" toddler teething (molars?) behavior or are we working towards a build reaction? Unfortunately, the only way to find out for sure is to keep going. I felt fairly confident that she'd do fine - we haven't had a true food fail since last July when she got so sick from pears!
Yesterday was Kara's birthday. We had an event at the fire hall to attend and a bbq afterwards. I packed Kara's dinner - a hot dog to put on the grill, green beans, a bowl of fruit and potato chips. Her dinner was almost the same as everyone else, yet perfectly safe for Kara, or so we thought. We got home, put our tired out kiddos to bed and soon followed.
I woke up to Kara crying around 1:00 this morning. She was crying pretty hard, and I couldn't seem to snap out of it. I got Brian to wake up and run up to check on her. He hollered in the monitor for me so I followed, to find Kara's crib covered in vomit. Nasty, sour, green bean FPIES reaction vomit. She was ok, just very upset about throwing up. I was going to clean her up at the sink but it was everywhere so I gave her a bath instead. She seemed ok, let me wash her hair, we finished throwing pukey bedding in the wash, getting Kara in new pj's and snuggling her to make sure she was going to be ok. We went to Brenna's bed again. I asked her if she wanted a bottle. Her Neocate usually settles her down, I think it makes her feel good, often times. I was cleary NOT thinking, it now being 2:00 a.m.. We snuggled in Brenna's bed and not long after Kara started puking again. I hollered for Brian this time, and we both held her as she emptied her stomach again. Over and over again until there was nothing left to come out. I kept watching her, watching for signs of shock, making sure she was staying "with us". We've been down this road before and it is one of the scariest things we've gone through with her. She seemed to be doing ok, we did all the clean up again and both laid with her. Kara laid awake in bed until about 4:00 this morning. I couldn't sleep either. She'd hold my hand, snuggle, say "Mama" once in a while to make sure I was still there. So sweet.
This morning I am home with her. Her mood is like being on a rollercoaster. Happy, sad, mad, she just simply doesn't feel good as much as she's trying to be ok. Her face is really puffy, her cheeks are bright red. She's eating and drinking decent so I'm just watching for signs of dehydration, trying to make sure we dont' go down that road. In one of her fussy moments this morning I asked her what was "owie" and she pointed to her ear. Do I dare trust a newly-turned-two-year-old? That'd be all we need is another ear infection on top of this green bean fail reaction.
Bring on the weekend. I'm ready for it.
Upcoming Appointments
We have a tough couple of weeks ahead with lots of appointments, most of them being out of town. Part of me would like to fast forward three weeks and just be done with it all. The anticipation of it all makes me crazy - I was reading the packet of information the U of M sent to me about Kara's surgery and my heart started racing, the anxiety was terrible and I had to put it away. I'll review it before her preop, or right before the sleep study. I can't think about that stuff right now.
To help me keep what we have, and when, I'm going to blog about it. Hopefully this will help me get my thoughts down so I don't forget anything!
So, there we go. Looks like this summer is going to start out about as rough as last summer did. We are fighters though and will be ok, just please keep us in your thoughts and prayers.
To help me keep what we have, and when, I'm going to blog about it. Hopefully this will help me get my thoughts down so I don't forget anything!
- Monday, 5/23: Kara's 2 Year Check: The regular Well Child Check. This will be the opportunity to discuss Kara's (lack of) height. I'm not sure if I've said much about it on here or not but in a matter of a few months, Kara managed to drop from the 25th percentile down to about 2%. The GI doctor didn't seem too concerned so that put my mind at ease but it was something her Allergist was pretty concerned about, even mentioning having her see an Endocrinologist after discussing it with her Primary. In my research and mostly from talking with other FPIES Moms who's little ones are right around Kara's age, it seems to be quite the trend. Roughly between 18 and 24 months it's like they just quit growing, or grow very, very slow. A few kiddos have upcoming appointments with Endocrinology so I'm just as anxious to hear what they find out. There are SO MANY strange connections with FPIES and it has my mind constantly rolling. Other than her height I dont' have any other concerns. In the last two weeks Kara started talking and now it's non-stop. She mimics nearly everything we say and has even picked up on "meanie" and "dumb", no thanks to her older sister! (Dumb, and now meanie are and have been on the "naughty words" list, by the way!) I think she's all caught up on milestones, thank goodness!
- Wednesday, 5/25: GI Follow Up. Out of the last six weeks, I dont' think we've been able to give Kara her newly prescribed Prevacid for more than four consecutive days and that was only had 1/2 of the dose. We were definitely seeing an improvement with her constant wet burps, and she hadn't done much of the random vomiting but it was all I could pinpoint to making her so constipated. That is a whole new road that we are NOT used to going down with her! I'd back off, not give it to her for a few days, she'd be much better and then the reflux would come back in full force after a few days of being off of it. It's been an icky cycle. Not sure what is going to come out of this appointment. I am glad that we have it on the books, however, because we are doing a green bean re-trial and it is coming with some very odd results. I plan on blogging about this whole ordeal at some other time, when it's not bedtime and I get some quiet time to concentrate! :)
- Tuesday, 5/31: Sleep Study. I don't even want to go there. I'm hoping all goes well and I'm just going to take it as it comes. Gillette Children's worked Kara into the schedule to get in at an earlier date but with that comes a later check in time. 8:30 PM to be exact. Now, Kara goes to bed by 8:00 nearly every night, and wants her crib for the most part. After reading the book they sent us on it I'm SO nervous of terrifying her for life! The nurse that I spoke with let me know they have different ways of doing it on toddlers and it is possible that we can get her to sleep and hook her all up at that point. It was explained that since we are from out of town they will make sure to accommodate both Brian and I. We will be in a separate room from Kara but close, and they will come get us if we are needed at all. It was explained that they don't want anyone in the room because of possible snoring (A yes for both of us, LOL!) and possibly getting up in the night. They don't want any noise to risk waking her up, especially from REM.
- Monday, 6/6: Pre Op with ENT, U of M: Dr. Rimmel, the Pediatric ENT that will be doing Kara's procedures, wants to meet with us before the surgery. At this point we will decide, based on the sleep study results, if it will be just tubes and adenoids or tonsils as well. We will discuss her surgery plan - giving her steroids before hand to help offset any possible reactions that might happen and keeping her inpatient for a day after because of her anesthesia reaction after her scope. Kara also tends to get dehydrated so easily so that's another thing we really have to watch with a tonsillectomy.
- Tuesday, 6/7: Pre Op with her Primary: The scheduler at the U told me we needed both these appointments, both with Dr. Rimmel and then with our primary but I'm not sure if this is right or not. It seems like they should be able to do it all at at her ENT PreOp appointment but maybe not. Regardless, its' just one more thing on my already too busy schedule! At least we dont' have to travel for this one!
- Monday, 6/13: Surgery Day. Ugh. I'm planning on taking a week off of work. The scariest thing is that we have NO CLUE what will happen. She could do perfectly fine, have no reaction what so ever. The scope deal could have been a totally fluke thing. I'm not good about not having control and this is one situation that is going to make me crazy. I may need drugs myself this day! Seriously. Remember me saying how I nearly had anxiety from simply READING about the procedure?
So, there we go. Looks like this summer is going to start out about as rough as last summer did. We are fighters though and will be ok, just please keep us in your thoughts and prayers.
Wednesday, May 18, 2011
Two Years Old!
Today my baby turned two. I was anticipating being sad - two years old, already, where has the time gone? Today came with a whole different set of emotions instead. I'm happy - she has turned into the most adorable blond curly haired, blue eyed, chatter boxed little girl. We've come so far and I still go by the motto "Life gets a little easier every day", which was my motto from day one of bringing my new baby girl home from the hospital with a just-turned-two year old at home as well.
Last night I glanced at the clock and the memories of me thinking maybe I should go to the hospital three weeks away from my due date came to me. I was monitored for contractions and the next morning decided that it was time to do my repeat C-Section. Tonight around 5:00 I was thinking back to where we were at THAT time two years ago. I was laying in a hospital bed, unable to move much of my body and in pain. I had no real idea of what was going on, I was far too out of it. My baby was in the warmer still, on oxygen, struggling to keep her O2 sats up. My only thought was "if my baby is going to be transferred out of here, I'm going to find SOME WAY to get out of this bed and go with her." She's been a fighter from the start!
Last year at this time we were a mess! After our horror GI visit at 8 months old, we'd barely been hanging in there. I had just recently weaned her from breastfeeding and we were "experimenting" with some sort of a formula she could tolerate. I knew that at one year we'd have an allergist appointment so we held onto hope. We went from Enfamil to Nutramigen to Soy Milk, all with no progress. Shortly after Kara's first birthday she went on a total elimination diet, which meant taking ALL foods from Kara and finding a baseline on Neocate. I'd never even HEARD of baseline before, let alone had any clue of how we were going to manage. What was to come were the best weeks Kara has ever had! Neocate, followed by corn grits and kix cereal became her only food, slowly having bananas mixed in for some flavor. We have, in the last year, added 18 foods to Kara's safe food list. Each trialed roughly a week at a time, sometimes shorter, sometimes longer. It's been a long year, full of ups and downs but we have made major progress looking back at where we have been!
Kara Lynne, you will never cease to amaze me. Life is sometimes a struggle but in my eyes you are nothing but a fighter. You put a smile on my face every.single.day and my life is that much more complete with you in it. I love you Baby Girl, my Little Diva!
Last night I glanced at the clock and the memories of me thinking maybe I should go to the hospital three weeks away from my due date came to me. I was monitored for contractions and the next morning decided that it was time to do my repeat C-Section. Tonight around 5:00 I was thinking back to where we were at THAT time two years ago. I was laying in a hospital bed, unable to move much of my body and in pain. I had no real idea of what was going on, I was far too out of it. My baby was in the warmer still, on oxygen, struggling to keep her O2 sats up. My only thought was "if my baby is going to be transferred out of here, I'm going to find SOME WAY to get out of this bed and go with her." She's been a fighter from the start!
Kara Lynne, you will never cease to amaze me. Life is sometimes a struggle but in my eyes you are nothing but a fighter. You put a smile on my face every.single.day and my life is that much more complete with you in it. I love you Baby Girl, my Little Diva!
Sunday, May 15, 2011
Birthdays!
April and May are full of birthdays in our families and yesterday we celebrated Brenna and Kara's birthday's together since they are only ten days apart. I was so excited for Kara to have a birthday cake! I have a friend who is an AMAZING cake decorator and she agreed and was 100% willing to make a cake that would be perfectly safe for Kara! We did a lot of messaging back and forth, many ingredients list checking and found a dairy free cake mix. Since Kara can have eggs, that worked out fine and her safe oil is canola. Perfect! Tara made a frosting for Kara out of her dairy/soy free "butter" spread and she does fine with dyes (so far!) so we did another check and double check of the ingredients in that, and it all proved to be safe!
Kara, our little bug, had her very own birthday cake! She loved her cake so much that she wouldn't even look at the camera and in true almost-two-year-old fashion, never sat still for one decent picture! I'll give it a shot on her actual birthday I guess.
Kara, our little bug, had her very own birthday cake! She loved her cake so much that she wouldn't even look at the camera and in true almost-two-year-old fashion, never sat still for one decent picture! I'll give it a shot on her actual birthday I guess.
Tuesday, May 3, 2011
Balance
We've had a busy few weeks with appointments and decisions to be made, as well as Kara not feeling well again. I'm having a hard time balancing work and the never ending care of a child with health problems. I'm struggling with being fair and having the time to give to my curious, wanting to help with everything, sassy, almost four year old as I'm overwhelmed with life as it is. I'm struggling with the balance of getting everyday things done around my house as I have an almost two year old mommy's girl that just wants to be snuggled.
Thank goodness the sun is finally starting to shine and it's starting to warm up. I'm hoping that with spring hopefully finally here things will start looking up. I know we have a really busy and stressful next 4-6 weeks ahead of us with appointments but I'm hoping now that we are getting it all on the calendar we can go back to day to day life instead of not knowing what the future is going to bring. I HATE not being in control and need to get back to the balance of my life that I thrive on.
Thank goodness the sun is finally starting to shine and it's starting to warm up. I'm hoping that with spring hopefully finally here things will start looking up. I know we have a really busy and stressful next 4-6 weeks ahead of us with appointments but I'm hoping now that we are getting it all on the calendar we can go back to day to day life instead of not knowing what the future is going to bring. I HATE not being in control and need to get back to the balance of my life that I thrive on.
Sleep Study Dilema
Yesterday I was awaiting an important phone call from Gillette for Kara's sleep study. I walked out to my car on my break at work, and my phone (that has no service in my office!) picked up a voicemail. I quickly listened, writing down the message on the sticky notes I brought out with me. June 14th, the first available date, is the day they had her scheduled.
I instantly felt defeated. We can't schedule the surgery until she has the sleep study and just on Friday we were back in for both ears being infected and now we are still watching for symptoms from the antibiotic.
I wasn't sure what to do first. I called the scheduler at Gillette back, no answer. Next I called the assistant who transferred me to the Nurse Coordinator. I left a long, detailed message explaining when they could get Kara in for the sleep study, that she has yet another ear infection, and is on more antibiotics. I asked if we could forgo the sleep study and forget about tonsils if that's what the doctor needed or if he would just take the tonsils, since they'll probably have to come out eventually anyway.. I waited not-so-patiently for a call back.
About an two hours later my patience got the best of me. I called the assistant again, re-explaining our situation and she transferred me to the triage nurse. The nurse was kind, I explained my thought process and exactly what I wanted from the doctor. She let me know he was in surgery today so they will talk to him tomorrow afternoon. I thanked her and asked for the assistant once again. We can get in for surgery as soon as May 23rd if he'll let us bypass the sleep study.
Without going into a huge explanation of my thought process on this, I weighed everything out trying to decide what was right. I also looked at the explanation booklet Gillette provides to children having a sleep study done. As soon as I was got through it I was sickened. Kara cries if she has to have a bandaid on! I think that last hospital stay wrecked it all for her with her sore, swollen feet hooked up to the pulse oximeter on one side, the IV in the other. Putting her through something as scary looking as this, even though it's painless breaks my heart!
Brian and I discussed our (lack) of options last night not real sure what the heck we should do, or what the doctor would even let us do. It was a waiting game until today.
I instantly felt defeated. We can't schedule the surgery until she has the sleep study and just on Friday we were back in for both ears being infected and now we are still watching for symptoms from the antibiotic.
I wasn't sure what to do first. I called the scheduler at Gillette back, no answer. Next I called the assistant who transferred me to the Nurse Coordinator. I left a long, detailed message explaining when they could get Kara in for the sleep study, that she has yet another ear infection, and is on more antibiotics. I asked if we could forgo the sleep study and forget about tonsils if that's what the doctor needed or if he would just take the tonsils, since they'll probably have to come out eventually anyway.. I waited not-so-patiently for a call back.
About an two hours later my patience got the best of me. I called the assistant again, re-explaining our situation and she transferred me to the triage nurse. The nurse was kind, I explained my thought process and exactly what I wanted from the doctor. She let me know he was in surgery today so they will talk to him tomorrow afternoon. I thanked her and asked for the assistant once again. We can get in for surgery as soon as May 23rd if he'll let us bypass the sleep study.
Without going into a huge explanation of my thought process on this, I weighed everything out trying to decide what was right. I also looked at the explanation booklet Gillette provides to children having a sleep study done. As soon as I was got through it I was sickened. Kara cries if she has to have a bandaid on! I think that last hospital stay wrecked it all for her with her sore, swollen feet hooked up to the pulse oximeter on one side, the IV in the other. Putting her through something as scary looking as this, even though it's painless breaks my heart!
Brian and I discussed our (lack) of options last night not real sure what the heck we should do, or what the doctor would even let us do. It was a waiting game until today.
Sunday, May 1, 2011
Third Times a Charm
Because two doctor appointments weren't enough for this week, we went in for a third on Friday.
Kara was pretty fussy when we got back to reality on Tuesday night and her crankiness continued through the rest of the week. We kept it in the back of our heads that she had that fluid in her ear and by Thursday night I was ready to bring her to Urgent Care because she was SOOOO crabby. She wasn't acting sick just really ornery and wanting to be held. I was planning on going to work on Friday to make up some time, but plans changed, as they often do at the spur of the moment lately.
Kara was up all night coughing Thursday night. I felt so bad because it's such a nasty, dry cough and it sounds so painful. Before she had even woken up, I decided it was time to bring her in and that we wouldn't be following with our plans for the day. We got an appointment right away Friday morning, and with that, found that Kara now has an ear infection in both ears. Her cough is a nasty, inflammation cough. We are keeping up with her nebs, the albuterol and budesonide (Pulmicort) and she is actually asking to take them, like she is finally noticing that they help her out and aren't just there for us to torture her with. It's kind of sad, in a way, but much easier than the two of us trying to hold her down to Neb her!
Kara is now back on Amoxicillin. So far it's going decent, just causing some slight gut issues and I'm hoping that we can continue it. We are aiming for ten days but need to get a full five in her for sure and hope that it clears the infection. By this afternoon she seems to be feeling better so hopefully she doesn't slide into a GI reaction and spend the rest of the week sick after one day of ear improvement!
When it rains around here, it pours.
Kara was pretty fussy when we got back to reality on Tuesday night and her crankiness continued through the rest of the week. We kept it in the back of our heads that she had that fluid in her ear and by Thursday night I was ready to bring her to Urgent Care because she was SOOOO crabby. She wasn't acting sick just really ornery and wanting to be held. I was planning on going to work on Friday to make up some time, but plans changed, as they often do at the spur of the moment lately.
Kara was up all night coughing Thursday night. I felt so bad because it's such a nasty, dry cough and it sounds so painful. Before she had even woken up, I decided it was time to bring her in and that we wouldn't be following with our plans for the day. We got an appointment right away Friday morning, and with that, found that Kara now has an ear infection in both ears. Her cough is a nasty, inflammation cough. We are keeping up with her nebs, the albuterol and budesonide (Pulmicort) and she is actually asking to take them, like she is finally noticing that they help her out and aren't just there for us to torture her with. It's kind of sad, in a way, but much easier than the two of us trying to hold her down to Neb her!
Kara is now back on Amoxicillin. So far it's going decent, just causing some slight gut issues and I'm hoping that we can continue it. We are aiming for ten days but need to get a full five in her for sure and hope that it clears the infection. By this afternoon she seems to be feeling better so hopefully she doesn't slide into a GI reaction and spend the rest of the week sick after one day of ear improvement!
When it rains around here, it pours.
Ear, Nose and Throat
Tuesday was our long-awaited ENT Appointment. At Kara's Allergy Appointment on Monday the Allergist said that Kara did have some fluid in her right ear. I was REALLY thinking and hoping that this extra day off, day spent in the cities at another appointment was going to be nothing but a waste of time since she's been ear-problem free for a little over a month! This was not really what I wanted to hear but at least the big appointment was just the next day.
We got to the U of MN and checked Kara in for her Audiology Appointment. They did a hearing test and then another test to measure the fluid amounts in her ears. The hearing test is NOT the easiest test to do on an almost two year old! She had me a little worried because I could clearly hear some of the noises they were playing and Kara wasn't responding by the end of the test - the whispers and things like that. The Audiologist assured me that she did perfect in the beginning, but in true two-year-old fashion, quit playing the game about half way through!
With that, waited for our ENT appointment. We seemed to have to wait for an awful long time and Kara was getting very impatient, not to mention, tired! We settled on a bottle about the time the resident came in. She took Kara's full history, finding it interesting and asking many questions. She did a quick exam, finding the fluid in both ears and went to get the doctor.
We spoke about Kara's ear fluid and infections that's been a constant since about December. He said she is definitely right at the point of making a decision on getting tubes put in, but we could wait it out another month or so to see if she does get better with the weather. Brian and I discussed ahead of time that we would at least ask him about Kara's adenoids. Brenna, Kara's older sister, had her tonsils and adenoids out when she was two years, four months old, a big decision that we had to make but since making it, she hasn't been sick a single time. He was curious as to why we did hers so early and when we described what the ENT told us after Brenna's procedure, he checked her throat out as well. He decided that he would do tubes and adenoids for sure and then we went on to talk about her mouth breathing, snoring, basically all the same problems Brenna had except for the chronic tonsillitis. This is where the conversation got confusing, and a bit overwhelming.
This is what's going on:
If we are going to put Kara under anesthesia again, we should find out for sure if her breathing is causing sleep apnea and get those tonsils out right away as well if she is having sleep apnea. If we don't do this, there's a good chance that in the next six months or so she could need to have them out which would mean putting her under anesthesia again. We are waiting on the scheduling of a sleep study at this point, which we will hopefully hear on tomorrow so we can get these things on our calendar. The sleep study will be done at Gillette Children's, as this is one of the things they specialize in. (When we are finished with all of this FPIES business, I swear, we will have been at every hospital/clinic in the metro!)
For those of you that weren't following last October, Kara's scope caused a reaction of some sort, and because of this, she's a high anesthesia risk. This is why this non-invasive procedure is being taken so serious and we are doctoring at the U of M for this as well. These are the blog posts about that experience: Phase 2, Inpatient, as well as a few others in the October 2010 blog archives. Basically, after all of this, Kara had a Holter Monitor, a Cardiology Visit, another EKG and we still don't know exactly what happened. To be on the safe side, when Kara has her ear tubes placed as well as whatever else is decided, she will have prophylactic steroids to (hopefully!) offset any chance of reaction as well as be admitted to inpatient upon the surgery so we aren't hanging around in Phase Two again, wondering what the heck is happening.
It looks like May is going to be a busy month. I'm ready to get the show on the road so we can enjoy this summer!
We got to the U of MN and checked Kara in for her Audiology Appointment. They did a hearing test and then another test to measure the fluid amounts in her ears. The hearing test is NOT the easiest test to do on an almost two year old! She had me a little worried because I could clearly hear some of the noises they were playing and Kara wasn't responding by the end of the test - the whispers and things like that. The Audiologist assured me that she did perfect in the beginning, but in true two-year-old fashion, quit playing the game about half way through!
With that, waited for our ENT appointment. We seemed to have to wait for an awful long time and Kara was getting very impatient, not to mention, tired! We settled on a bottle about the time the resident came in. She took Kara's full history, finding it interesting and asking many questions. She did a quick exam, finding the fluid in both ears and went to get the doctor.
We spoke about Kara's ear fluid and infections that's been a constant since about December. He said she is definitely right at the point of making a decision on getting tubes put in, but we could wait it out another month or so to see if she does get better with the weather. Brian and I discussed ahead of time that we would at least ask him about Kara's adenoids. Brenna, Kara's older sister, had her tonsils and adenoids out when she was two years, four months old, a big decision that we had to make but since making it, she hasn't been sick a single time. He was curious as to why we did hers so early and when we described what the ENT told us after Brenna's procedure, he checked her throat out as well. He decided that he would do tubes and adenoids for sure and then we went on to talk about her mouth breathing, snoring, basically all the same problems Brenna had except for the chronic tonsillitis. This is where the conversation got confusing, and a bit overwhelming.
This is what's going on:
If we are going to put Kara under anesthesia again, we should find out for sure if her breathing is causing sleep apnea and get those tonsils out right away as well if she is having sleep apnea. If we don't do this, there's a good chance that in the next six months or so she could need to have them out which would mean putting her under anesthesia again. We are waiting on the scheduling of a sleep study at this point, which we will hopefully hear on tomorrow so we can get these things on our calendar. The sleep study will be done at Gillette Children's, as this is one of the things they specialize in. (When we are finished with all of this FPIES business, I swear, we will have been at every hospital/clinic in the metro!)
For those of you that weren't following last October, Kara's scope caused a reaction of some sort, and because of this, she's a high anesthesia risk. This is why this non-invasive procedure is being taken so serious and we are doctoring at the U of M for this as well. These are the blog posts about that experience: Phase 2, Inpatient, as well as a few others in the October 2010 blog archives. Basically, after all of this, Kara had a Holter Monitor, a Cardiology Visit, another EKG and we still don't know exactly what happened. To be on the safe side, when Kara has her ear tubes placed as well as whatever else is decided, she will have prophylactic steroids to (hopefully!) offset any chance of reaction as well as be admitted to inpatient upon the surgery so we aren't hanging around in Phase Two again, wondering what the heck is happening.
It looks like May is going to be a busy month. I'm ready to get the show on the road so we can enjoy this summer!
Update: Allergy
There was some confusion with my Allergist post and I need to clarify some things regarding Kara's dairy allergy.
We were told that the RAST blood test numbers can range from .01 to 100. Kara's level is a 1.75. On a scale to 100, that's very minimal. She did have a positive skin prick test but there's a good chance that she could be able to handle dairy in baked foods, so his suggestion was to trial it in a piece of bread. It is nearly impossible to find a safe bread for Kara anywhere within a 60 mile radius. When I get to Maple Grove, two hours away, and IF they have her bread in stock, I buy a few loaves and freeze them. Bread is a rare commodity for Kara. So, basically I would use my discretion as I have with her and the minimal amounts of soy oil that she gets in her diet.
Our Allergist said IF she reacts, it will most likely be an FPIES reaction to dairy, not that she'll have an IgE reaction, which is a "typical" food allergy reaction. So, it's a shot in the dark, as all of our food trials have been. Dairy is on "the list" but so was chicken, eggs, and a few other foods that she's passed.
When the time is right, we'll trial dairy in the form of a piece of bread and be very careful, watching the clock that first day and watching for build reactions as the days pass.
We were told that the RAST blood test numbers can range from .01 to 100. Kara's level is a 1.75. On a scale to 100, that's very minimal. She did have a positive skin prick test but there's a good chance that she could be able to handle dairy in baked foods, so his suggestion was to trial it in a piece of bread. It is nearly impossible to find a safe bread for Kara anywhere within a 60 mile radius. When I get to Maple Grove, two hours away, and IF they have her bread in stock, I buy a few loaves and freeze them. Bread is a rare commodity for Kara. So, basically I would use my discretion as I have with her and the minimal amounts of soy oil that she gets in her diet.
Our Allergist said IF she reacts, it will most likely be an FPIES reaction to dairy, not that she'll have an IgE reaction, which is a "typical" food allergy reaction. So, it's a shot in the dark, as all of our food trials have been. Dairy is on "the list" but so was chicken, eggs, and a few other foods that she's passed.
When the time is right, we'll trial dairy in the form of a piece of bread and be very careful, watching the clock that first day and watching for build reactions as the days pass.
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