Last night Chloe drank, from her cup, 100ml of thickened liquid!!!! That's a little over 3 ounces! That's the most she's EVER taken by mouth. Soooo exciting!!!!!! She weighed in a 15lbs 4oz at the doctor yesterday and jumped on her growth curve so I'm officially given permission to drop down on the tube feeds and let her eat more during the day by mouth!!! Whooo hoooo!
She also had a good check-up at the cardiologist on Monday. An echo and EKG showed that her little heart is working just fine. They went up on her Captopril (blood pressure medication) because she had "moderate regurg", but with no dilation of the left ventricle (in other words - it's all good) and her pressure was on the higher side and she's getting bigger and they won't see her for another 6 months so they have room to go up on her meds. All good news. I'm not sure how long she'll be on the Captopril. I guess we'll give it another 6 months, see where she is and ask then.
The cold is better too. Still has a mild cough with the occasional gagging but NOTHING like before. We're through the worst of it and I can breath a deep sigh of relief!!!!!
Wednesday, April 29, 2009
Monday, April 27, 2009
Tag Sale - Mission Complete
The tag sale went fine. We raised $15 in donations from our donation jar (thanks to Xander!) and $156 for sale of items for a grand total of $171. I was amazed by the world of tag-sale-ing. People come flying up, park in middle of the street and rush through. Some come in "teams". Some know exactly what they're looking for. Others take more of a "shopping" approach. Some barter, so don't. Some drive around in vans looking for treasures. Others are just curious. It was fun to learn about this new world. And a joy to watch my kids "participating" in the "sales". LOL Xander was really good at telling everyone what the tag sale was for and getting people to donate to Chloe's medical care. Sadie loved to greet people. "Hi! It's a beautiful day" she'd say. Then I'd have to rein them in because they'd be all up in people's faces!!!
The one drawback to the tag sale for me was facing the gravity of our current financial situation. I'm so thankful for every penny that we raised yesterday. EVERY penny counts. But having just figured out our monthly medical expenses the other day I realized just how serious our situation is. With expenses from $700-$1400/month (depending on whether or not we win the nursing care appeal), how do we manage that? I'm trying to figure out what to do without having to sell our house. Do we drop our kids from our insurance and pick up the state insurance? Do we try to get a secondary insurance? I'm not even sure what our options are or who to ask. . . I mean, it was silly for me to think a tag sale would be the answer to our finanical problems! LOL I'm so overwhelmed with trying to navigate the state systems. people tell me we should qualify for something and I look into it and find we don't, but am I missing something??? It's so confusing. I need a case coordinator. Someone who can navigate all this for me. And I sort of have one, but I'm not sure she's clear about all the systems out there either. Or we just truly don't qualify. It's just all so darn confusing!
The one drawback to the tag sale for me was facing the gravity of our current financial situation. I'm so thankful for every penny that we raised yesterday. EVERY penny counts. But having just figured out our monthly medical expenses the other day I realized just how serious our situation is. With expenses from $700-$1400/month (depending on whether or not we win the nursing care appeal), how do we manage that? I'm trying to figure out what to do without having to sell our house. Do we drop our kids from our insurance and pick up the state insurance? Do we try to get a secondary insurance? I'm not even sure what our options are or who to ask. . . I mean, it was silly for me to think a tag sale would be the answer to our finanical problems! LOL I'm so overwhelmed with trying to navigate the state systems. people tell me we should qualify for something and I look into it and find we don't, but am I missing something??? It's so confusing. I need a case coordinator. Someone who can navigate all this for me. And I sort of have one, but I'm not sure she's clear about all the systems out there either. Or we just truly don't qualify. It's just all so darn confusing!
Sunday, April 26, 2009
Tag Sale Take 1
Today is our first dry-run tag sale (LOL - like there is such a thing!). We have enough stuff already that we're just going to throw some stuff out with a sign at the street and see how it goes. We'll still have our big 2-day fund raising tag sale on Memorial weekend, but this is a good start. It's an hour before and we've already had 1 person stop (and nothing is out yet - the joys of tag sale-ing). Hopefully there will be no 9-1-1 calls during our tag sale. So far Chloe is sleeping soundly. It's already 77 degrees at 9am so it looks like it's going to be a gorgeous day! :) A good day for raising money.
Saturday, April 25, 2009
More drama
The drama continued today with more choking, gagging and vomiting mucus this morning, but we got through it and had a fairly good day. We didn't get to enjoy the weather other than having the windows open because Xander was doubled up with stomach pain from 11am to 5pm!!!! I talked to the pedi and we agreed it was probably a constipation issue so I gave him some Miralax. He did start feeling better, so hopefully that'll be the worst of it.
We're watching our feeding instruction video from Chloe's feeding specialist. All I can say is "oops". Guess I've been doing a few things wrong! Oh well, we'll start doing it right tomorrow. ;)
We're watching our feeding instruction video from Chloe's feeding specialist. All I can say is "oops". Guess I've been doing a few things wrong! Oh well, we'll start doing it right tomorrow. ;)
Friday, April 24, 2009
Hanging in There
Well, Chloe's morning was another tough one. She had spit-ups from about 10am when she woke up for about an hour and 15 minutes with lots of mucus coming out and definite struggles to get it to move out of her airway. She seemed tired out when all was said and done and although her spirits are high, as always, her energy was a little lower then usual. And so is her appetite. She's not eating so much lately, but one could understand that! Overall, once we got past the morning her day was pretty good. Definite coughing throughout the day but she managed it pretty well once she got the big mucusy stuff moved.
I called our local firehouse today to introduce myself and tell them about Chloe's condition. He took our information for the house, but also called dispatch (and had me call) so that our address is now flagged. That means any medical or fire calls to 9-1-1 will get an ambulance dispatched asap with lights and sirens and fewer intake questions required before the dispatch will take place. Basically they'll send the ambulance first and ask questions later. We also reviewed their protocals and what they can and can't do so that in an emergency I can be mentally prepared as to what to expect. It was a very reassuring conversation. I was so glad I finally made the call! I highly highly recommend it for anyone who has a child with any kind of special health care needs (or adult for that matter).
The battle for nursing care continues. I'm feeling desperate for more care, particularly with our current situations (her choking on me frequently) so I think we're going to go ahead and get what we need and work really hard to win our appeal and if we don't, well then, we'll just have to figure out how the hell to pay for it. One step at a time. . .
Hoping for a better night and a peaceful, uneventful start to the day tomorrow.
I called our local firehouse today to introduce myself and tell them about Chloe's condition. He took our information for the house, but also called dispatch (and had me call) so that our address is now flagged. That means any medical or fire calls to 9-1-1 will get an ambulance dispatched asap with lights and sirens and fewer intake questions required before the dispatch will take place. Basically they'll send the ambulance first and ask questions later. We also reviewed their protocals and what they can and can't do so that in an emergency I can be mentally prepared as to what to expect. It was a very reassuring conversation. I was so glad I finally made the call! I highly highly recommend it for anyone who has a child with any kind of special health care needs (or adult for that matter).
The battle for nursing care continues. I'm feeling desperate for more care, particularly with our current situations (her choking on me frequently) so I think we're going to go ahead and get what we need and work really hard to win our appeal and if we don't, well then, we'll just have to figure out how the hell to pay for it. One step at a time. . .
Hoping for a better night and a peaceful, uneventful start to the day tomorrow.
Rough Night
Well, apparently according to Chloe's nurse, she had a really tough night. She was up off and on all night coughing and had a big vomit this morning after being suctioned. No emergent situations. Let's hope for a better day!
Thursday, April 23, 2009
Another Rough Day
It was another rough day in the Mason-Mann household. Chloe had a great night, but that meant all her mucus and gunk settled through the night and when morning came and she woke up she really struggled to get it all cleared out. She continued to have really bad reflux with coughing and gagging and choking off and on from about 8:30am until 10:15am. One episode included a several minute period of choking and gagging which eventually led to a dark purple tongue (and panic) and a near 9-1-1 call. But after several LONG seconds, she cleared it and her color returned to normal. This was her third but most serious episode of the morning. I had already suctioned her earlier because I could tell it was going to be one of those mornings! I was pretty shaken afterward and had to talk myself down from calling the pediatrician! I knew she was fine at that point and there was nothing he'd be able to do and I needed to resist calling and interrupting him from his current patient just so I could be reassured. Poor Xander was there with me and scared right along side of me. Like I said, it wasn't her first episode of the morning so we were already on pins and needles. Uh, what a start to the day!!!!
We went to therapy anyway so that I could have her PT work on her high chair for positioning. Xander came along since he was home with strep (he was on his second day of antibiotics and doing fine). He enjoyed "helping" me today "being Chloe's nurse". It was cute. Chloe got a break from therapy which was good because she was just too wiped out. She coughed most of the day continuing into this evening. She had a tough early evening with lots of coughing, but no serious episodes (she seems to save those for me!)
This afternoon I returned home to deal with the insurance company. We started the appeal process for the 12 hours (we get 8, I want 12 because I feel we NEED it - they say 8 is 'medically necessary' but 12 is not even though she has to WATCHED continuously for those 12, especially when she's sick!!!) and they told me it will take 30 days!!! Well, we'll be out of our nursing care benefit by then. ARGH! We're appealing anyway, but it's not looking too promising. Damn insurance jerks! That's a post for another day.
Hopefully tomorrow will be better. Happy healthy thoughts. . .
We went to therapy anyway so that I could have her PT work on her high chair for positioning. Xander came along since he was home with strep (he was on his second day of antibiotics and doing fine). He enjoyed "helping" me today "being Chloe's nurse". It was cute. Chloe got a break from therapy which was good because she was just too wiped out. She coughed most of the day continuing into this evening. She had a tough early evening with lots of coughing, but no serious episodes (she seems to save those for me!)
This afternoon I returned home to deal with the insurance company. We started the appeal process for the 12 hours (we get 8, I want 12 because I feel we NEED it - they say 8 is 'medically necessary' but 12 is not even though she has to WATCHED continuously for those 12, especially when she's sick!!!) and they told me it will take 30 days!!! Well, we'll be out of our nursing care benefit by then. ARGH! We're appealing anyway, but it's not looking too promising. Damn insurance jerks! That's a post for another day.
Hopefully tomorrow will be better. Happy healthy thoughts. . .
Wednesday, April 22, 2009
Chloe Update
Well, she had another great night, but this morning's been a little bit tougher. I was already planning on taking Xander in because I think he has strep throat, so while I'm there I'm going to have them take a listen to Chloe. She sounds a little wheezy this morning and has lots of mucus. I'm hoping it's still just upper respiratory, but I want to make sure. I hear a little wheeze when I listen when the stethoscope too, but obviously I don't REALLY know what I'm listening for (or do I??? hee hee). Anyway, I'd rather be safe then sorry. She coughed up some narly looking mucus this morning and I just want to make sure it's coming from her head not her chest.
She's been doing pretty well with oral feeds since we went to the feeding specialist, Lori Overland. her OT even noticed that she isn't doing as much tongue protrusion, more just normal infant tongue exploration. She definitely eats more now (at least when she's feeling well) and drinks thickened liquids from a cup. She LOVES her cup! She grabs it with both hands and pulls it to her mouth, head shaking as she eagerly anticipates the baby smoothy reaching her lips. It's adorable!
She had a hard time with OT yesterday because of her cold. I'm always impressed with how hard things that we take for granted can be for her. Simple tasks like reaching up when she's lying on her back. The simple work against gravity is more of a fight for her. But I don't feel sorry for her, because I know she is tough and most importantly HAPPY!!!! But the mom in me just wants it to be easier for her. She's still fighting to sit and working hard to use her arms and legs against gravity. But she makes progress every week and that's all we can ask.
Well, time to eat and get ready to take care of my sickies. oh one more thing. We're watching Chloe's neck because she holds her head to the right side. The general consensus is that it is a week muscle on the left side, but I think neurological causes haven't been totally ruled out yet either.
She's been doing pretty well with oral feeds since we went to the feeding specialist, Lori Overland. her OT even noticed that she isn't doing as much tongue protrusion, more just normal infant tongue exploration. She definitely eats more now (at least when she's feeling well) and drinks thickened liquids from a cup. She LOVES her cup! She grabs it with both hands and pulls it to her mouth, head shaking as she eagerly anticipates the baby smoothy reaching her lips. It's adorable!
She had a hard time with OT yesterday because of her cold. I'm always impressed with how hard things that we take for granted can be for her. Simple tasks like reaching up when she's lying on her back. The simple work against gravity is more of a fight for her. But I don't feel sorry for her, because I know she is tough and most importantly HAPPY!!!! But the mom in me just wants it to be easier for her. She's still fighting to sit and working hard to use her arms and legs against gravity. But she makes progress every week and that's all we can ask.
Well, time to eat and get ready to take care of my sickies. oh one more thing. We're watching Chloe's neck because she holds her head to the right side. The general consensus is that it is a week muscle on the left side, but I think neurological causes haven't been totally ruled out yet either.
Kids Say the Darndest Things
So last night Xander, my 8 year old, said to me, "you have a baby with Down syndrome, a kid with strep throat and a pain-in-the-butt little sister. That's an awful lot going on. You're a great mom." And then a big hug. Those are the moments we live for. ;)
Tuesday, April 21, 2009
Ham Sandwich
We had fun with our photo shoot today so we could get some good thank you card pics. What a ham!
Touched
I just received a check in the mail from a complete stranger for Chloe. How amazing is that? I'm so touched I don't even know what to say. It's all a bit overwhelming (in a good way of course). I guess I'm not the only one touched by her!
The Climb
Well, I was having one of my down moments last night, feeling just overwhelmed by the first Birth to Three bill I had received (that will come monthly now for Chloe's early intervention services) and the battle with the insurance company and the reality of very limited nursing care left when I turned on the radio and Chloe's song The Climb by Miley Cyrus was just starting!!! It was one of those moments when I was feeling low and defeated when I was sure someone was sending me a message. Chloe, angels, God. . . I don't know who, but someone was telling me it would be okay. That I can do this. "There's always going to be another mountain. I'm always going to want to make it move. Always going to be an uphill battle. Sometimes I'm going to have to lose. Ain't about how fast I get there. Ain't about what's waiting on the other side. It's about the climb." It's not about tomorrow, it's about today and the beautiful girl that I am blessed to have and I REFUSE to miss out on for even a single day because I'm too busy worrying about tomorrow. Just when I start to feel down on myself Chloe teaches me just how lucky I am.
Welcome!!!!
April 21, 2009 - Tuesday
Well, I'm going to give this whole blogging thing a shot. I have my doubts that I can actually keep it up with my lack of time, but I'm going to give it the ol' college try (that means I'm going to stay up all night, do a couple of keg stands, and get busy!)
Well, I'm going to give this whole blogging thing a shot. I have my doubts that I can actually keep it up with my lack of time, but I'm going to give it the ol' college try (that means I'm going to stay up all night, do a couple of keg stands, and get busy!)
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