Maddyn went back to the doctor today for another check-in. Her weight has remained stable this week, so that is a good sign. Even with 'cutting back' as much as we could on the liquids, she was still averaging 85 oz a day, and in the process we had a very miserable child on our hands.
Our doctor was able to get us into the Pediatric Nephrologist earlier, so we now go to see him on May 26th. He will review her test results and symptoms and see if there is anything that got missed or he'll run new tests. She is also having us meet with a Pediatric Cardiologist, so we can rule out any heart/circulatory issues with Maddyn's purple hands/mouth/feet. Lastly, she's going to have us meet with an allergist. She's starting to wonder if the excessive drinking might be caused by severe allergies. Maddyn has been experiencing a chronic cough for a length of time- and it's not proving to be viral or bacterial (from our understanding) and she has terrible eczema. Allergies and asthma run in the family, so she wants to have that checked as well. If after meeting with all three of those doctors, we still have no answers, we will go to the diagnostic committee at Children's.
We are just hoping that we get some answers soon. i will continue to keep you all posted. Thanks for the continued thoughts/prayers you've been sending Maddyn's way. For 16 months, she's sure been through a lot- she's a tough one. As a treat, we are going to Disney World for 8 days starting next Friday (May 1) to hopefully bring her some fun. She sure deserves it!
Friday, April 24, 2009
Wednesday, April 15, 2009
Maddyn's health- updated Tuesday 4/14
We received our first round of results from the doctor. The good news is that Maddyn passed all of the different glucose-related tests and it is not Diabetes!!!
The rest of the news is still so/so at this point. She ran an osmolarity test (?) and my understanding is that this tests the kidneys...she also ran other tests and those results are driving her to have us meet with a pediatric nephrologist instead of the endocrinologist. She said she wants this specialized doctor to review the results and meet with us. I asked for more details, but she really said at this point that there were some inconclusive findings that she felt the specialist should review.
She also said that we have a 2nd option based on how it goes with Dr K (the Ped Nephrologist) to go to the Children's Memorial Diagnostic Group and have them look over Maddyn's various symptoms and results. This group of doctors encompasses peds from many fields who work together to try to understand what is going on, based on the symptoms and test results. This seems like a last resort option, so she wanted us to try to meet with Dr K first.
So I hung up and called Dr K's office and can't get in until Aug 25th. I will call our doc back tomorrow morning and see what she wants to do- There doesn't appear to be too many Pediatric Nephrologists in the area covered by our insurance. I don't know how I can mentally wait that long.
In the meantime, we are continuing to chart Maddyn's symptoms: how many ounces she drinks, wet diapers and purple hands/feet/mouth symptoms and we go back into our doc next Friday for another weight check and follow-up.
Maybe we all are making a bigger deal of this than we should. I dunno. I just want answers, so they can say “here’s what is wrong/nothing is wrong”, and we can provide Maddyn with what she needs and move on.
I will let everyone know if we learn anything new tomorrow or next Friday. Thank you again for all of the support!
The rest of the news is still so/so at this point. She ran an osmolarity test (?) and my understanding is that this tests the kidneys...she also ran other tests and those results are driving her to have us meet with a pediatric nephrologist instead of the endocrinologist. She said she wants this specialized doctor to review the results and meet with us. I asked for more details, but she really said at this point that there were some inconclusive findings that she felt the specialist should review.
She also said that we have a 2nd option based on how it goes with Dr K (the Ped Nephrologist) to go to the Children's Memorial Diagnostic Group and have them look over Maddyn's various symptoms and results. This group of doctors encompasses peds from many fields who work together to try to understand what is going on, based on the symptoms and test results. This seems like a last resort option, so she wanted us to try to meet with Dr K first.
So I hung up and called Dr K's office and can't get in until Aug 25th. I will call our doc back tomorrow morning and see what she wants to do- There doesn't appear to be too many Pediatric Nephrologists in the area covered by our insurance. I don't know how I can mentally wait that long.
In the meantime, we are continuing to chart Maddyn's symptoms: how many ounces she drinks, wet diapers and purple hands/feet/mouth symptoms and we go back into our doc next Friday for another weight check and follow-up.
Maybe we all are making a bigger deal of this than we should. I dunno. I just want answers, so they can say “here’s what is wrong/nothing is wrong”, and we can provide Maddyn with what she needs and move on.
I will let everyone know if we learn anything new tomorrow or next Friday. Thank you again for all of the support!
Maddyn's health..not sure what's going on
So a lot has happened in the last few weeks with Maddyn's health. I've been journaling it, and will copy my notes here.
For the last couple of weeks, we have noticed something has not been right with Maddyn. She drinks well over 100 ounces (we've been charting & she's usually b/t 110-130 oz) of water and milk a day. The average 15 month old drinks b/t 30-40 ounces a day. She pees twice as many diapers as the other kids in her class and is constantly leaking through her diapers, even overnights. She's losing weight and hungry. Her hands, feet, and lips turn purple frequently - This started as a once a week thing, then became a once a day thing, and now it happens every other hour. She has just been a different kid the last few weeks. Daycare has noticed, we've noticed.
So we went to our doc, who ran some tests. We got the first round of test results Friday afternoon. They proved that we need to have more detailed follow up tests. They are testing for juvenile diabetes, DKA (I still have very faint understanding of this) and other pancreatic types of things, kindneys, you name it.
Saturday morning, we went to the hospital and had hours of tests done.. poor thing was poked and prodded and it was just a long morning. Her poor arms are quite bruised, since they blew a few veins. Right now, we get to wait. We should get most of the results back starting Tuesday. Our doc has also suggested we meet with a pediatric endocrinologist.
So right now, we know nothing. It's just waiting and trying not to worry. I didn't want to post until we knew a little more, since it's entirely possible that it's nothing. However, the waiting is starting to stress me out.
When you think of all Maddyn has been through in the last 15 months, from cameras getting shoved down her nose to her intestines, getting stuck with needles and blood draws, xrays of all types, having masks attached to her face, and leads attached to her chest, monitors beeping every 15 minutes, and all other kinds of tests, it just really is overwhelming. She's been on meds since she was a few weeks old. Right when we thought she was over the DGE & GERD, it came back. I realize on a scale of 1-10 in the big scheme of things that can go wrong with a child, this is nothing. However, it's just hard to watch. I don't know how strong parents do it on a consistent basis. I am in awe.
So right now, we wait...and I will continue to keep everyone posted....Please keep Maddyn in your thoughts- hopefully this is nothing!
For the last couple of weeks, we have noticed something has not been right with Maddyn. She drinks well over 100 ounces (we've been charting & she's usually b/t 110-130 oz) of water and milk a day. The average 15 month old drinks b/t 30-40 ounces a day. She pees twice as many diapers as the other kids in her class and is constantly leaking through her diapers, even overnights. She's losing weight and hungry. Her hands, feet, and lips turn purple frequently - This started as a once a week thing, then became a once a day thing, and now it happens every other hour. She has just been a different kid the last few weeks. Daycare has noticed, we've noticed.
So we went to our doc, who ran some tests. We got the first round of test results Friday afternoon. They proved that we need to have more detailed follow up tests. They are testing for juvenile diabetes, DKA (I still have very faint understanding of this) and other pancreatic types of things, kindneys, you name it.
Saturday morning, we went to the hospital and had hours of tests done.. poor thing was poked and prodded and it was just a long morning. Her poor arms are quite bruised, since they blew a few veins. Right now, we get to wait. We should get most of the results back starting Tuesday. Our doc has also suggested we meet with a pediatric endocrinologist.
So right now, we know nothing. It's just waiting and trying not to worry. I didn't want to post until we knew a little more, since it's entirely possible that it's nothing. However, the waiting is starting to stress me out.
When you think of all Maddyn has been through in the last 15 months, from cameras getting shoved down her nose to her intestines, getting stuck with needles and blood draws, xrays of all types, having masks attached to her face, and leads attached to her chest, monitors beeping every 15 minutes, and all other kinds of tests, it just really is overwhelming. She's been on meds since she was a few weeks old. Right when we thought she was over the DGE & GERD, it came back. I realize on a scale of 1-10 in the big scheme of things that can go wrong with a child, this is nothing. However, it's just hard to watch. I don't know how strong parents do it on a consistent basis. I am in awe.
So right now, we wait...and I will continue to keep everyone posted....Please keep Maddyn in your thoughts- hopefully this is nothing!
Easter
We hosted a few family members for Easter this year. I was able to get a few photos of Maddyn in her Easter dress. It was a gorgeous day, so we were able to bring out the bubble machine for the girls. As always, Rylee tried to steal the bubbles!!! Ry likes to catch the bubbles and chase them all over the yard- it's really funny!
Here are just a few photos- the rest are up on the Shutterfly site!
Jared & Amanda's bridal shower
Jared and Amanda had their first bridal shower, which mom and I hosted, on April 4th. We had it at the Hilton Lisle. Everything was perfect!! They decorated the room beautifully, the food was delicious, and Jared and Amanda received lots of gifts from everyone. It's hard to believe they will be married in just a few weeks!!!
Here are a few teasers, the rest are up on the Shutterfly site:
Here are a few teasers, the rest are up on the Shutterfly site:
Wisconsin Dells...
Back at the end of March, we took a little mini-vacation to the Wisconsin Dells with Heather's BFFs and their families. It was an awesome weekend. We stayed at the Glacier Canyon Lodge, which is part of the Wilderness Territory. It was clean, huge, and so much fun! There are lots of indoor water parks up there so the little ones had a blast. Isaac is 8 months old (Megan and Andy's son) and just getting ready to crawl. Henry (Emily and Luke's son) is a year old and just starting to walk. The three of them just had fun :) As did the rest of us too!!! I'd highly recommend it!
I have to load all the photos onto Shutterfly, but here's a few teasers:
Sunday, April 12, 2009
Updates galore on their way
I have lots of updates.... Amanda and Jared's shower, Easter, Doctor Appts, and lots of videos.
I will try to post them all in the next few days, so keep checking back.
Just a quick update from her 15 month appt:
Height: 33 inches
Weight: 25lbs 3 oz
I will be posting here and the shutterfly site until I'm caught up- so just stay tuned!! :)
I will try to post them all in the next few days, so keep checking back.
Just a quick update from her 15 month appt:
Height: 33 inches
Weight: 25lbs 3 oz
I will be posting here and the shutterfly site until I'm caught up- so just stay tuned!! :)
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