tag:blogger.com,1999:blog-43457069744016439322024-03-05T11:21:53.058-05:00Can't Keep Me DOWNA journey through life with Down SyndromeUnknownnoreply@blogger.comBlogger309125tag:blogger.com,1999:blog-4345706974401643932.post-34178516015772002812011-07-18T16:03:00.000-04:002011-09-23T11:11:35.237-04:00Happy B-Day Hubby!<div class="separator" style="clear: both; text-align: left;">
Averi went out with her man for breakfast this morning to celebrate his birthday. They were both very annoyed with my taking their picture during their special moment. :)</div>
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Happy Birthday Sam. Averi loves you!</div>
Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-4345706974401643932.post-41653024147884551102011-07-17T21:31:00.000-04:002011-09-22T15:48:05.965-04:00I Don't Need No Stinkin' PumpWe have slowly been adding more straw-sippy cup feeds into Averi's daily regimen (thank you Tang, you are my hero). The goal is to have her drink four 4oz. cups a day, along with the baby food that she eats orally.<br />
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Guess what? Yesterday, it finally happened! She drank all 4 cups!!! I swear, I thought this day would never come!<br />
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She was still short a few calories so we had to push an ounce of formula through her G-tube with a syringe, but we didn't have to hook up her pump at all for the entire day! (I hope the !!! are relaying to you how big a deal this is!!!) I am SO proud of her! Maybe one day we won't even need that dumb G-tube...one day.Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-4345706974401643932.post-36101014593899308682011-07-16T22:29:00.000-04:002011-09-22T15:30:06.339-04:00Germ Fest...I Mean - Animal Day<div class="separator" style="clear: both; text-align: left;">
Our neighbor's brother has a farm and we went to see his lambs today before they grow up and aren't lambs any more. I know Averi looks pretty frightened in this picture, but she's really somewhere between intense excitement, extreme hesitation, and stimulus overload.</div>
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I was a mean mom and wouldn't let her touch any of the animals (lambs, cows, chickens, kittens) and I was sanitizing everything in site. Do you think I'll ever back off on the sanitizer? Anyways, being out and about really wore Miss Averi out because she fell asleep mid-color on the way home.<br />
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Funny note: We stopped for lunch at a pizza buffet and the owner made a comment about "where's all her hair." When I absentmindedly responded that "the chemo took care of it" he first laughed because he thought I was joking and then started apologizing profusely and explaining that some babies her age still don't have hair. I guess MDS is such a part of our lives that I forget it's startling to see a baby with cancer. :)<br />
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After resting up, we headed over to the annual Down Syndrome Zoo Day. It was super hot, even though it was in the evening, but my girls were ready.<br />
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We walked around for a while looking at all the animals and then headed over to the party. Averi wanted to make sure that I pointed out that she and Kaili got their faces painted.<br />
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It might seem silly, but sometimes it's refreshing to realize that there are so many other people in a similar boat as you. It's always so much fun to hang out with other families affected by DS and not have to worry about explaining anything, but rather share your stories with a sense of understanding.<br />
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After eating, we headed over to the carousal. Things started out fine with Dan sitting on a stationary bench with Averi while Kaili and I rode the horses. Then Dan got adventurous and sat Averi on one of the horses. Of course she immediately grabbed on to the pole - probably the most germ infested item in the entire zoo. Since she'd already touched it and she was having so much fun I let her finish the ride, but once it was done I immediately ran to the stroller and doused her in sanitizer. Yah, that's probably not going to stop any time soon, huh?<br />
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She loved riding the horse and kept shaking the pole after the ride stopped, trying to get it to start going again.<br />
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To finish off the germ fest - I mean, fun time at the zoo, the zookeepers brought out some animals for us to pet. Averi really liked the albino snake and decided to pet it for a while. Don't worry, there was sanitizer for that too. :)<br />
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I know it keep saying this, but it was SO nice to be out in the fresh air doing things together as a family again - even if there were germs involved!Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-4345706974401643932.post-21307064428896684382011-07-15T20:46:00.000-04:002011-09-22T14:47:12.217-04:00Scrub a Dub Dub<div class="separator" style="clear: both; text-align: left;">
It's been a week since Averi had her central line taken out and we have been given the go ahead to take off her band-aids and give her a BATH!</div>
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On a side note, we were all making jokes about how much Averi would miss the dressing on her chest but we forgot to take into consideration the band-aids that would replace it for a while. She keeps picking at the band-aids and pulling them off. This scares me because I don't want the site to get infected while it is healing. When the port is taken out the surgeon doesn't even stitch the hole closed so that if the site isn't completely sterile he doesn't close any germs in. Luckily, the site is looking great and the scab is already getting smaller - just in time for a BATH! (If you can't tell, I'm pretty excited about the BATH!)</div>
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When Averi's port got infected and they had to remove it (note the matching scar on the other side of her chest) there was a break of a little over a week and we were able to give her a bath the night before the new port was placed. That was over 8 months ago.</div>
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I have really been looking forward to the day that we could actually wash off all the hospital/vomit/stuff instead of just rubbing it around with a wet disposable cloth that smells like men's aftershave - and the day finally came. We didn't know how Averi would respond though, seeing as she hasn't even touched water for so long...</div>
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She had a BLAST!!! She LOVED it!!! It was so nice watching her enjoy herself while she splashed water all over the entire bathroom (and for once I didn't care).<br />
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We took a video of me putting her in the water for the very first time but forgot to take nudity into consideration :) so you'll have to settle for this very cute video of her splashing after warming up to the water for a couple of minutes.<br />
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Of course we like to keep things exciting in our house, so after about 10 minutes we saw brown mush floating up from behind Averi. Let's just say that adding water to poop that already has colace and milk of magnesia added to it twice a day is super yummy. After yanking her out of the tub, cleaning up the mess, and spraying the tub down with bleach, we put Averi back in the tub (with a little more water this time since she was having so much fun) and scrubbed her down. I'm not gunna lie, I washed her several times over. ;)</div>
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I have to admit, there isn't much that's cuter than a clean baby wrapped up in a towel - and she finally got to use her hooded towel that's been hanging in the bathroom for months now. I can't wait to give her another bath tomorrow! :)</div>
Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-4345706974401643932.post-33546604068831236702011-07-14T22:14:00.000-04:002011-09-22T10:25:06.792-04:00ShoppingI don't know if you know this, but being stuck at home all day everyday can wear on you after a while. I've had a couple of errands on my to do list for a while now and haven't been able to actually go do them because for some reason I can't leave Averi at home by herself. :) Since everything went so well last night, I decided to give it a try today. Yikes!<br />
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I'm not quite ready to take her on a full blown grocery shopping trip but I thought a few quick stops at a couple of stores would be fine. My first mistake was forgetting the baby wrap. With nowhere to put Averi (I was definitely NOT putting her in a grocery cart) I had to carry her the entire time. I also couldn't push a cart and hold Averi at the same time so Kaili had to walk, while I tried to keep track of her, and I had to carry a basket. <br />
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When my arm started to get tired from holding so much I asked Kaili if she could carry the basket for a little while. While she did put a valiant effort into it for about 30 seconds, it just wasn't going to happen. Just as I thought it couldn't get any worse - Averi fell asleep. So I had dead-weight sleeping baby in one arm, an awkward basket in the other, and no hand left to hold onto Kaili.<br />
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You should have seen me trying to pay for my 4 items at the checkout. :) I think I'll be complaining less about my 10:00 at night shopping trips from now on, and I don't think I'll be taking Averi shopping again any time soon!Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-4345706974401643932.post-86322182292628067282011-07-13T21:25:00.000-04:002011-09-22T10:08:55.332-04:00An A Fair of the HeartTonight was the annual cardiac celebration at the hospital. Once a year the children's hospital puts on a huge party for all of their cardiac patients. It is an awesome way to celebrate the second chance at life that many of them have been given through open heart surgery (like Averi) or any kind of heart care. It's also a wonderful opportunity to see the doctors who performed the surgeries and thank them by showing them the fruit of their labors.<br />
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We went for the first time last year and had a blast! When we got our invitation this year we only had one hesitation - taking Averi into a crowded room of germy people. Since her port is officially out and her ANC is over 1000, we decided that only 'normal' life is ahead us and we ventured out of the house.<br />
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I'm not gunna lie, I was a hot mess the entire night, but I still managed to have fun. We just held Averi the entire time and didn't let anyone touch her. Depending on whether she gets sick some time soon maybe we'll start going out a little more. ;)<br />
<br />Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-4345706974401643932.post-7086287856381092482011-07-11T20:59:00.000-04:002011-09-21T17:12:00.439-04:00Good Riddance Honey Bear<div class="separator" style="clear: both; text-align: left;">
We bought a new spoon and it is making a world of difference. The short handle and pointy end make Averi hold the spoon correctly. Now if we could only get her to stop flipping the spoon upside down when she gets it to her mouth. :)</div>
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We have also finally transitioned from the honey bear straw to a real big girl sippy cup with a straw. I have been looking for months now for a sippy cup with a straw, handles, and no valve (the thickened liquid can't get through the valve). So of course, Dan came home the other day with not one but 2 of these cups that he got for the price of one.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhROVydDJKYi5R83gYVYb2jY5a6eGW9DBruSphDfLVL0VcsiAIud3iNHa-aaKPLJKq4-ZEsHXlKvWbx3ZS5fEULp_P-sROq5sNRs6pFMxtGxG_hRdWbUhnGsa-1S9Zy0s4K5odH5ACFC7k/s1600/playtex-lil-gripper-straw-trainer.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhROVydDJKYi5R83gYVYb2jY5a6eGW9DBruSphDfLVL0VcsiAIud3iNHa-aaKPLJKq4-ZEsHXlKvWbx3ZS5fEULp_P-sROq5sNRs6pFMxtGxG_hRdWbUhnGsa-1S9Zy0s4K5odH5ACFC7k/s320/playtex-lil-gripper-straw-trainer.jpg" width="320" /></a></div>
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Averi has been really hesitant about using it because the straw is more squishy than the honey bear and she doesn't like the different feeling. I decided that she was going to overcome that today and did some tricky maneuvering I'd let her drink out of the honey bear for a while and then when she wasn't looking I'd sneak in the cup. She'd take a sip or two and then give up so I'd switch back to the honey bear. After doing this many many times, each time getting longer and longer, she finally finished her milk using the sippy cup.</div>
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I think I can officially say that we are done with the honey bear - and the weird looks it solicits. :)</div>
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Since a lot of things have been changing with Averi's eating skills lately, I decided to tinker with her feeding schedule as well. Pretty much for forever she has been getting feeds at 8, 12, 4, and 8. This is all fine and dandy when she gets everything through her G-tube, but she is becoming more aware of when we eat and she is eating more orally as well.</div>
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I decided to give her more of a toddler's schedule and decided to feed her 3 meals when we eat them and then a snack of milk after her nap and right before bed. We'll see how it turns out, but I'm hoping it will help encourage her if she eats when she sees us eating.</div>
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I really feel like she's making a turn for the better, eating wise, and I'm getting excited!</div>
Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-4345706974401643932.post-7574364586775398132011-07-08T21:36:00.000-04:002011-09-21T15:08:17.875-04:00The EndThe End has finally arrived. Averi had her central line port taken out today!<br />
<br />
We woke up early today for what should be her last trip to the OR for a very long time. It's funny, but we know one of the OR Nurse Practitioners by name and she always comes in to say hello and check up on Averi when she has a procedure done. She was SO glad to hear that we were finalizing the last step in being done with chemo.<br />
<br />
I can't say that I'm going to miss this thing even a little bit. It has been more hassle than necessary and I am so glad to be rid of it and the worry of infection that goes with it.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEivBmxWakQuBjnnxzDqxzrGb42X7ks8g6g-7hSSRS2sAhssSzqI14CX2BzJ6QlRc3Kk8NWAXBo4aXU8dT77CigxXVzZ8-4RpqxC8WTqlMwvpIDUR2vp65b6l8DPc8YPKkBEpluD3gd9CBw/s1600/IMG_2558.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEivBmxWakQuBjnnxzDqxzrGb42X7ks8g6g-7hSSRS2sAhssSzqI14CX2BzJ6QlRc3Kk8NWAXBo4aXU8dT77CigxXVzZ8-4RpqxC8WTqlMwvpIDUR2vp65b6l8DPc8YPKkBEpluD3gd9CBw/s320/IMG_2558.JPG" width="320" /></a></div>
Averi, on the other hand, is really going to miss having something to play with all the time. She is a 'taggie' kind of girl and loves that the dressing is always attached to her so it is easy to find and fiddle with. We've been joking about what she will do once it's gone.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiEc_HCW2Sz56ihfkVyIcpVxFzvgwzEZweMEo8rTU5eCPjLLD7wlXfoIDwSOGjqfLuNSYyPwNi7LHoNTRTR9SWCezVRfOhJRUPt4WcWKSeyUrQET-puSueeP7HkHpEST_h0Sfb2BW4TqHE/s1600/IMG_2560.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiEc_HCW2Sz56ihfkVyIcpVxFzvgwzEZweMEo8rTU5eCPjLLD7wlXfoIDwSOGjqfLuNSYyPwNi7LHoNTRTR9SWCezVRfOhJRUPt4WcWKSeyUrQET-puSueeP7HkHpEST_h0Sfb2BW4TqHE/s320/IMG_2560.JPG" width="240" /></a></div>
Our wait ended up being a little longer than expected, so we enjoyed some cuddle time. Of course Averi was asleep by the time the nurse showed up to take her away.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj1qdGwh1lVvWJO9xgfv5QfJi3863O8Lbzq-_7EBPrgRqFkqRy1fyZ85Ah41GMcaXqtLShjjiz-yk3j7R4XT7TnY4M-qa7scW6_7V2J7EIhLCxZ5x8MgDdBGDEvpsGlhjGFBoipGCUUb6s/s1600/IMG_2563.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj1qdGwh1lVvWJO9xgfv5QfJi3863O8Lbzq-_7EBPrgRqFkqRy1fyZ85Ah41GMcaXqtLShjjiz-yk3j7R4XT7TnY4M-qa7scW6_7V2J7EIhLCxZ5x8MgDdBGDEvpsGlhjGFBoipGCUUb6s/s320/IMG_2563.JPG" width="240" /></a></div>
Thankfully the procedure didn't take very long and the anesthesiologist was able to mask her instead of intubating (I always push for that now because she does SO much better with recovery when she hasn't had a tube shoved down her already wimpy airway).<br />
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The only big concern I had about today was the fact that they would have to start an IV and I remember all too well the time she came back from the OR with 14 holes. When I brought it up with the anesthesiologist he said they would try a few times and then possibly put one in her head. I told him I was totally fine with that and understood that even though they look horrid, they are easier to place and just as effective (and they wouldn't even have to shave a spot). Well guess what? After a few pokes they put it right on the side of her noggin. :)<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgcNkSIpl5FCDsRomlI9u1rp9Z3XxIptjMu6dUCFU_wrk87JGxehqpzfaNS1blRpJHYLdgOoefAb5dy6Stekl0WkDctlpsxys_qwM5GLDW6GRGX8lRhbBR-Fb7UbsvUjZ3-lmAtmmcg5k4/s1600/IMG_2570.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgcNkSIpl5FCDsRomlI9u1rp9Z3XxIptjMu6dUCFU_wrk87JGxehqpzfaNS1blRpJHYLdgOoefAb5dy6Stekl0WkDctlpsxys_qwM5GLDW6GRGX8lRhbBR-Fb7UbsvUjZ3-lmAtmmcg5k4/s320/IMG_2570.JPG" width="240" /></a></div>
I am so thankful to be done with the last 9 months of chemotherapy! Now everyone can congratulate us and I won't have to hesitate and point out that there is still something to take care of - because WE ARE DONE!Unknownnoreply@blogger.com3tag:blogger.com,1999:blog-4345706974401643932.post-78517642513363344982011-07-06T19:21:00.000-04:002011-09-21T14:36:19.997-04:00Moving On UpWe went in for more blood work today and to make sure that everything is ready to go for having Averi's central line taken out soon. Her ANC is up to 1140. I love that her body is recovering so nicely!<br />
<br />
I had the nurse thoroughly examine my 'back seat dressing' and she said that it actually looked really good. I told her I wouldn't be offended if they had to redo it but she insisted that it looked fine.<br />
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After leaving the clinic, we headed over to the floor to say hello to our 'family'. Averi enjoyed seeing everybody again, but especially her boyfriend Nurse Tim.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjl34vcRE24mWFUF9u-oOCPOo3mxBDT2Nt5A3jY-apCw_68tVr-2X_w57DUxG5bd4E5XK2vqenH6nSwW9NPiOPuVqwPcOQ11uvdkXgmFJcwFVzlf49QkcOuWK1rSwZ-LyX5BqHX1TNimEo/s1600/IMG_2550.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjl34vcRE24mWFUF9u-oOCPOo3mxBDT2Nt5A3jY-apCw_68tVr-2X_w57DUxG5bd4E5XK2vqenH6nSwW9NPiOPuVqwPcOQ11uvdkXgmFJcwFVzlf49QkcOuWK1rSwZ-LyX5BqHX1TNimEo/s320/IMG_2550.JPG" width="320" /></a></div>
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She just lights up when she sees him. I've threatened to tell his wife about the little love affair he's having with Averi, but he insists she already knows. :)</div>
<br />Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-4345706974401643932.post-33235248020146928192011-07-05T23:57:00.000-04:002011-09-21T14:20:18.182-04:00The Results Are InI've been avoiding this post because I don't quite know how to word it...here goes.<br />
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I finally got 'the phone call' today. It only took them an entire week to get back with us, but at least now we have the final results and we can be done with it (in reality I'm bummed we didn't hear the preliminary results last week but I'm trying to stay positive).<br />
<br />
The oncologist said the biopsy looked fine. I felt a wave of relief wash over me...and then he kept talking. He said the pathologist made a note that one of the cells looked a bit off. They don't know what's making it look different and they aren't at all concerned about it. As far as chemo is concerned, she doesn't need any more treatments at this time. And then Mr. No-bedside-manner topped off the conversation by reminding me that there is always a chance that the cancer will one day return.<br />
<br />
I hung up the phone and just sat there, confused about how I should feel. If there's nothing to be concerned about then why couldn't he have just said that everything looked fine and left it at that? Why remind an already over stressed mom that her daughter's cancer could return? I know that; I watched it happen to the little boy down the hall.<br />
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I'm thrilled that we're done with chemo but my overconfidence that everything was going to be super fantastic was just smashed. I suppose it's a time for celebration but now there will always be a small part of me that will always worry (and in truth it would have been there anyways).<br />
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Regardless of the small worries, we are done with this phase of our lives and ready to move on to getting Averi's port out and returning to 'normal' life!<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhnWbIIF1kebqBNFw9iybWAlfkHuddEqYAvd-ys5PZOMxZIC3xJR8ck5xL6byOwXr8l9vcXxDG2RHz6yeO6a6StzUG0kaMYqz8-9GhJCJdBYLTUCXA1uoBdS8gp6rMJjuU8bIeCD-oAgeE/s1600/IMG_2498.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhnWbIIF1kebqBNFw9iybWAlfkHuddEqYAvd-ys5PZOMxZIC3xJR8ck5xL6byOwXr8l9vcXxDG2RHz6yeO6a6StzUG0kaMYqz8-9GhJCJdBYLTUCXA1uoBdS8gp6rMJjuU8bIeCD-oAgeE/s320/IMG_2498.JPG" width="320" /></a></div>
Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-4345706974401643932.post-35618122768208549922011-07-05T21:13:00.000-04:002011-09-15T21:14:10.325-04:00I'm Repenting...I'm just guessing here, but I think a few people may be a little frustrated with the lack of posting lately (I use the term 'lately' loosely here). The truth is, I tried really hard to be up to date before we left for a very well deserved month long vacation, and it just didn't happen. Once we returned, the amount of stuff to write about was overwhelming and I found myself finding things to do to occupy my time so I wouldn't be able to post. I have since repented and am ready to update you on the amazing journey Averi continues to have. :) Thanx for sticking around (and for caring enough to be mad at me)!<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiS734EIQPtNRuJ6BMF8rJs64KPQYP2X8GiCij3u5zeLubvKQiapGD0pQsgnrQbW5By4Fngt3UNyH7cKGgZZChyhUVNg9pMkwLyEx7ypNCe0LGv_pyZAVkZzVK14ucGrYU96qVXONZNcwQ/s1600/IMG_2853.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiS734EIQPtNRuJ6BMF8rJs64KPQYP2X8GiCij3u5zeLubvKQiapGD0pQsgnrQbW5By4Fngt3UNyH7cKGgZZChyhUVNg9pMkwLyEx7ypNCe0LGv_pyZAVkZzVK14ucGrYU96qVXONZNcwQ/s320/IMG_2853.JPG" width="240" /></a></div>
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(More of this cuteness to follow soon!)</div>
Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-4345706974401643932.post-70490388438810098822011-07-05T21:05:00.000-04:002011-09-15T21:35:38.942-04:00You Know You've Lived in a Hospital Too Long If...<br />
<ul>
<li>You don’t touch anything without first putting on sanitizer
or spraying it with alcohol<div class="MsoNormal">
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</li>
<li>‘Getting out’ means roaming the halls while pushing a plastic
car and an IV pole</li>
<li>Showering involves getting your flip flops and several handtowel sized towels with the fluffiness of sandpaper</li>
<li>You know all the nurses, PCAs, and environmental services
people by name, and sometimes they come hang out in your room just to visit</li>
<li>Tons of strangers see you in your pjs and makeupless
everyday (usually until about 1:00 in the afternoon) and you no longer think
anything of it</li>
<li>Your alarm clock is the nurse coming in to do meds</li>
<li>You reorganize the nurse’s cart so that you can find things
easier</li>
<li>All of your food is labeled with your name, room number, and
date, you can't remember the last time you had to cook a meal, and you are up to date on all the specials at Subway</li>
<li>You only respond to ‘Averi’s Mom’</li>
<li>You ask for something and the doctor says, “If that’s what
the parents want then do it.”</li>
<li>Vomit is whatever</li>
<li>The highlights of your month are jewelry making night and free Raising
Cane’s</li>
<li>Your bed consists of an egg crate, three blankets, and a
board in your back - and when you try to sleep in your own bed you can't get comfortable</li>
<li>You’ve succumbed to the fact that your life is dictated by
someone else</li>
<li>You’re woken up by obnoxious beeping during the night and
you reset the IV pump without calling for the nurse</li>
<li>You say, “we’re going home” and you’re referring to the
hospital</li>
</ul>
Unknownnoreply@blogger.com3tag:blogger.com,1999:blog-4345706974401643932.post-71944713036795833582011-07-04T23:36:00.000-04:002011-09-15T20:59:57.122-04:00A Favor...<div class="separator" style="clear: both; text-align: left;">
I know, I know...I have avoided the blog for far too long. Don't worry, I have a super awesome excuse. We took a month long family vacation, away from hospitals, central lines, vomiting, pain, and upside down lives. It was amazing!!! (and now that we're home blog posts are sure to be coming soon :) )</div>
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So, here's the deal. While we were gone the Buddy Walk was looming closer and I was too busy enjoying the lack of responsibility (as much as I can have) too spend time asking for donations. So this is my call for support:</div>
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I'm not a big fan of asking people for money but the Down Syndrome Buddy Walk is one of the few things I believe in. Donating to the Buddy Walk helps support people just like Averi and the families that love and care for them. It supports the <a href="http://dsaco.org/">Down Syndrome Association of Central Ohio</a>, which funds support groups like the one that we attend every month (that group is my second family), research, information for new parents who have just learned that their lives are following a new (and amazingly wonderful) path, and much more.</div>
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In order to get our team name (Can't Keep Me DOWN) printed on the back of our shirts we have to raise at least $1,500 by August 28th. Please, if you read this blog and Averi has touched your life in any way, help us reach our goal by donating.</div>
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If just 72 people (I think I have at least that many friends) will join our team for $21, we can reach our goal and each member will also receive a Buddy Walk shirt with "Can't Keep Me DOWN" printed on the back (you're not stylish unless you have one :) ). Plus, who can say no to this face?</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEguxoY-TfiwPpJiwj9dG9l2KP6P4oRf6OS6U4vjWdQkqlxqe3T9tNSzQnUnp9ocnZditZLLehzG9Nih5JMTxSxdoLKrairBbMA_Jgsamav9Tg34XJhgfclAYHrfgMzGZQTLHj8nEMPRWVw/s1600/P1110552+-+Copy.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="246" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEguxoY-TfiwPpJiwj9dG9l2KP6P4oRf6OS6U4vjWdQkqlxqe3T9tNSzQnUnp9ocnZditZLLehzG9Nih5JMTxSxdoLKrairBbMA_Jgsamav9Tg34XJhgfclAYHrfgMzGZQTLHj8nEMPRWVw/s320/P1110552+-+Copy.JPG" width="320" /></a></div>
I am so grateful for all of you who love, support, and pray for Averi. Each of you have helped our family in more ways than you can imagine.<br />
<a href="http://www.columbusbuddywalk.org/">http://www.columbusbuddywalk.org/</a><br />
<br />
*Make sure your contribution goes to Team Can't Keep Me DOWN*<br />
<br />
To become a member of the team (which means you get a shirt):<br />
<a href="https://secure.groundworkgroup.org/web/buddy-walk/registration?p_p_id=AthonManager_WAR_AthonManager&p_p_lifecycle=0&_AthonManager_WAR_AthonManager_struts.portlet.action=renderDirect&_AthonManager_WAR_AthonManager_struts.portlet.mode=view&_AthonManager_WAR_AthonManager_struts.portlet.eventAction=true">https://secure.groundworkgroup.org/web/buddy-walk/registration?p_p_id=AthonManager_WAR_AthonManager&p_p_lifecycle=0&_AthonManager_WAR_AthonManager_struts.portlet.action=renderDirect&_AthonManager_WAR_AthonManager_struts.portlet.mode=view&_AthonManager_WAR_AthonManager_struts.portlet.eventAction=true</a><br />
<br />
<br />
To donate:<br />
<a href="https://secure.groundworkgroup.org/web/buddy-walk/donate?p_p_id=AthonManager_WAR_AthonManager&p_p_lifecycle=0&_AthonManager_WAR_AthonManager_struts.portlet.action=%2Fview%2FrenderDirect&_AthonManager_WAR_AthonManager_struts.portlet.mode=view&_AthonManager_WAR_AthonManager_struts.portlet.eventAction=true">https://secure.groundworkgroup.org/web/buddy-walk/donate?p_p_id=AthonManager_WAR_AthonManager&p_p_lifecycle=0&_AthonManager_WAR_AthonManager_struts.portlet.action=%2Fview%2FrenderDirect&_AthonManager_WAR_AthonManager_struts.portlet.mode=view&_AthonManager_WAR_AthonManager_struts.portlet.eventAction=true</a>Unknownnoreply@blogger.com5tag:blogger.com,1999:blog-4345706974401643932.post-88888583713630317362011-07-04T21:57:00.003-04:002011-08-01T22:21:03.321-04:00Sterile Car<div class="separator" style="clear: both; text-align: left;"></div><div class="MsoNormal">Now that we have been home for a little while, we are starting to get a tiny bit adventurous and actually leave the house to enter the big bad world of germs.<span style="mso-spacerun: yes;"> </span>Today we went to play putt-putt as a family, figuring it was safe to take Averi outside and strapped in a stroller.</div><div class="MsoNormal"><br />
</div><div class="MsoNormal">As I stuck my head in the car to unbuckle Averi I noticed that she was once again playing with the top of her central line dressing. She loves to comfort herself by fiddling with things and more times than not she pulls down the front of her shirt and picks at her conveniently placed dressing. Lately we have been wondering what she will do once the line is removed.</div><div class="MsoNormal"><br />
</div><div class="MsoNormal">So...not only had she been fiddling with her dressing while we were driving, but she had pulled it off all the way down to the site. If she pulls it off a little we can always tape it back down until her next dressing change, but once the actual site is exposed and no longer sterile you are in trouble.</div><div class="MsoNormal"><br />
</div><div class="MsoNormal">So I buckled her back in, drove back home, got a dressing change kit, and drove back to meet Dan and Kaili. Now I don't know if you're aware of this but the parking lot of a putt-putt facility is not on the top ten list of sterile locations. Given that knowledge, we pulled both car seats out of the back seat, closed the doors, and turned our back seat into a 'sterile' field.</div><br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEihbPeqyjUR0gTU7R_E_rXqRNsUXd4UAhyVHXqqCgulXIy-s8da-B7UX2YwcHRfaibnMb6nbjDit3nLL4mBiDzTLP2YDUjRIKuRc0NQbVIxK29R8zSFyqsutobvmnvwmLxa3Y1Oa7vfkM8/s1600/IMG_2547.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEihbPeqyjUR0gTU7R_E_rXqRNsUXd4UAhyVHXqqCgulXIy-s8da-B7UX2YwcHRfaibnMb6nbjDit3nLL4mBiDzTLP2YDUjRIKuRc0NQbVIxK29R8zSFyqsutobvmnvwmLxa3Y1Oa7vfkM8/s320/IMG_2547.JPG" width="240" /></a></div>Oh, and did I mention that this was my first dressing change to ever perform by myself? I'll admit that it didn't look half bad when I was done, but I will definitely have the nurses look it over the next time we go in to the clinic. If that's not an adventure, I don't know what is!Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-4345706974401643932.post-59603006539144075762011-07-03T22:35:00.001-04:002011-07-30T23:04:09.662-04:00PT Fun?<div class="separator" style="clear: both; text-align: left;">Sometimes Averi does things out of the blue that totally surprise me. I have a typical child, so I know all kids get to a point where things just start to click for them, but as you may or may not know, anything new that Averi does takes a ton more time and effort - and seems to mean more too.</div><div class="separator" style="clear: both; text-align: left;"><br />
</div><div class="separator" style="clear: both; text-align: left;">Today she was chilling on the couch with me and decided to pull up onto her knees all by herself. Once she started getting a reaction and laughing about it, it turned into a game and she repeated it enough times to get on camera.</div><div class="separator" style="clear: both; text-align: center;"><iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dxYcL10s2_poQH1CGto_bbbvF8ju1EyoK_pFQWEdMhxW8YnsQFD7eI2gZDI-aAftq7Nw5FBoPtrZszcBPB-nA' class='b-hbp-video b-uploaded' frameborder='0'></iframe></div>I love her little personality. She cracks me up, even when she's working her butt off to do it. I think we may have just stopped the world's turning for a brief moment when we found a way to make PT fun. :)Unknownnoreply@blogger.com5tag:blogger.com,1999:blog-4345706974401643932.post-44520661240955658872011-07-02T23:15:00.021-04:002011-07-26T23:42:15.256-04:00Forward FacingKeeping Averi in the infant carrier has been very convenient. Not only does she weigh in at 19 pounds making it easy to still carry her around but I love that during the few weeks we're home between cycles I can put her carrier in the stroller and completely cover her with both visors (keeping the germs at bay).<br />
<br />
I've always said that we would convert her to forward facing when she turned 2, but it seemed silly since she didn't even get a car for several days after her birthday. Now that she's done with chemo, there are no more excuses.<br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiU7ibjVMc3uJYZ3QguHtUQBSSE6Y36gc-UeicxbYABTbmQU_tET-L0jpUxyYIlWghlJk572J27pSvTEkll51FAxP-ELpI4czmWl4Qxuo_jTA5h8L-yzplCL3B9kUvTsiT187SW5f2kEb4/s1600/IMG_2478.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiU7ibjVMc3uJYZ3QguHtUQBSSE6Y36gc-UeicxbYABTbmQU_tET-L0jpUxyYIlWghlJk572J27pSvTEkll51FAxP-ELpI4czmWl4Qxuo_jTA5h8L-yzplCL3B9kUvTsiT187SW5f2kEb4/s320/IMG_2478.JPG" width="240" /></a></div>I can't believe how old she looks. Kaili loves having her sister facing the same way so they can play together and Averi loves being able to see everything. I can tell riding in the car is going to be lot more fun now.<br />
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In case you're wondering, we still haven't gotten the results from Averi's biopsy and yes, it's a 3 day weekend. After not hearing anything on Thursday I called yesterday and left a message with the nurse hoping to at least hear the preliminary results even though we couldn't get the port out. I never heard anything back. By the time Tuesday rolls around and the clinic is open again we should have the final results. Oh well.Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-4345706974401643932.post-39831836856215403232011-06-28T20:23:00.000-04:002011-07-26T23:14:38.833-04:00Checking off the ListAveri's bone marrow biopsy and aspiration went very smoothly today. Thankfully it is a very short procedure and the anesthesiologist was able to just put a mask on her instead of having to intubate. That makes the recovery so much easier and faster since her throat is so flimsy to begin with and irritating it makes it really hard for her to breathe. By the time she was brought back from recovery she was sitting up and acting like nothing had happened.<br />
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Now for the waiting. The final results take a whole week to come back but the preliminary results take 2 days and if they look clean then we can go ahead and schedule a time for her central line to be taken out. That means that if everything runs smoothly she could get her line out on Friday. I know it's a long shot but it would be really nice to enjoy fourth of July weekend with a lot less worries.Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-4345706974401643932.post-15773904659969267122011-06-27T19:08:00.013-04:002011-07-26T19:22:34.968-04:00Why the Drama?The doctor called on Friday to let us know that Averi's bone marrow biopsy is scheduled for tomorrow. The only stipulation is that we need to have her blood work done today to make sure her hemoglobin is over 10. If not, then she needs to have a transfusion of red blood cells tonight before going to the OR in the morning.<br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhtF0eTO7wWNLjVTsCVWNTtl-ZA5iO5B4gvKjIChdrACDOfmPp0FSgTyJQV1IpFQAj5Tlas7fVlKpiZFB_SOrFganzwXiLoynk6HeMER2vNfApEfl0axl485jBb6giCAgy84jlUn_23fS8/s1600/IMG_2433.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhtF0eTO7wWNLjVTsCVWNTtl-ZA5iO5B4gvKjIChdrACDOfmPp0FSgTyJQV1IpFQAj5Tlas7fVlKpiZFB_SOrFganzwXiLoynk6HeMER2vNfApEfl0axl485jBb6giCAgy84jlUn_23fS8/s320/IMG_2433.JPG" width="320" /></a></div><div class="separator" style="clear: both; text-align: center;">(Enjoying some much needed sunshine! She's pretty excited...)</div><div class="separator" style="clear: both; text-align: center;"><br />
</div>After Friday's call I immediately called our home health nurse and asked her to come over in the morning to draw Averi's blood so that there would be enough time to have it processed and get a transfusion if needed. She said she'd be here at 8:00.<br />
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By 10:00 I called to find out where she was and she said she never got the orders that I had faxed over...riiight. Then she had to go see another patient. Long story short, she showed up at 1:00 and left by 1:30 to drive 30 minutes to the lab that would then process it and send the results to our doctor who would then call us. I guess she thought that left plenty of time for us to get a 2-3 hour transfusion if need be.<br />
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I've been left a little frustrated. The good news is that Averi's hemoglobin came back at 10.2 so there was no need for a transfusion and we are good to go for tomorrow. Why does everything have to be so dramatic?<br />
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Her ANC was 954, which means her marrow is continuing to improve and recover. Hopefully everything goes well tomorrow and there are no more blasts. For some reason I was super nervous about her last biopsy but since that one came back clear of any leukemic cells I don't really have any doubts about this one. After two more rounds of chemo it can't have gotten any worse.Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-4345706974401643932.post-86708447624893188402011-06-26T23:59:00.004-04:002011-07-26T00:25:09.300-04:00Now Don't Start That Again<div class="MsoNormal">Today was the big day, the first day with no antibiotics.<span style="mso-spacerun: yes;"> </span>I was a hot mess!</div><div class="MsoNormal"><br />
</div><div class="MsoNormal">Let me give you a refresher on what happened the last time we finished giving IV antibiotics at home.<span style="mso-spacerun: yes;"> </span>The last dose was given on Thursday or Friday.<span style="mso-spacerun: yes;"> </span>On Saturday afternoon we flushed her lines with saline and heparin to keep them from clotting.<span style="mso-spacerun: yes;"> </span>Within an hour she was mottled, cold, had a fever, and projectile vomiting.</div><div class="MsoNormal"><br />
</div><div class="MsoNormal">I did not want a repeat!<span style="mso-spacerun: yes;"> </span>We decided to flush her line in the morning so that we could keep a close eye on her for a while before putting her in bed.<span style="mso-spacerun: yes;"> </span>After a few hours I started feeling a little better, until I remembered that when she got poop in her caps the first time she didn’t show symptoms of being sick until a few days later.<span style="mso-spacerun: yes;"> </span>Needless to say, I watched her like a hawk.</div><div class="MsoNormal"><br />
</div><div class="MsoNormal">She was fine all day until right before bed.<span style="mso-spacerun: yes;"> </span>Dan told me that she felt a little warm as he was laying her down and he decided to take her temperature.<span style="mso-spacerun: yes;"> </span>It was 99.8.<span style="mso-spacerun: yes;"> </span>Not quite a fever but not normal either.<span style="mso-spacerun: yes;"> </span>Then he told me that he almost didn’t say anything because he didn’t want to worry me (good thing he rethought that one).</div><div class="MsoNormal"><br />
</div><div class="MsoNormal">Now I can’t sleep and I have been checking her temperature every 30 minutes.<span style="mso-spacerun: yes;"> </span>It has gone down a little and she is acting fine so I think I might try to get some sleep.<span style="mso-spacerun: yes;"> </span>We’ll see how it goes… </div>Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-4345706974401643932.post-72627974082045266162011-06-25T21:47:00.009-04:002011-07-26T00:22:27.402-04:00Open Mouth, Insert Food<div class="separator" style="clear: both; text-align: left;">Now that Averi is feeling a little better and we are keeping her drugged up on zofran, she is eating orally. This is a big deal since she has been nauseous for so long and was on IV fluids up until the day she was discharged.</div><div class="separator" style="clear: both; text-align: left;"><br />
</div><div class="separator" style="clear: both; text-align: left;">I decided to give her a spoon and a bowl today to see what she would do. I was VERY impressed!</div><div class="separator" style="clear: both; text-align: center;"><iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dyKnfpKzCQCpwA3lanJo2XUaPFN4nk8FzErwYMx9SWms7YZi0Cjlhh-aV30u4lNYNBpdU0th-HYyPZew0b9Eg' class='b-hbp-video b-uploaded' frameborder='0'></iframe></div>She refused to hold the spoon any other way but at least the food was making it to her mouth. Maybe this whole self feeding thing is going to be easier than I thought.<br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiBYu2VDvFfGMQn_z5Sdv8q5jVZfplc4bjFNItvysX0bXYPSJxysNqWPyd6P0D4tPY6EJ5IRKpRhmj4UrUjssPlrpRuSEDG7Js1vuMheKpddr1MR9ilE1DI8V-qufuQAUOSD4WlYmmPSfc/s1600/IMG_2452.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiBYu2VDvFfGMQn_z5Sdv8q5jVZfplc4bjFNItvysX0bXYPSJxysNqWPyd6P0D4tPY6EJ5IRKpRhmj4UrUjssPlrpRuSEDG7Js1vuMheKpddr1MR9ilE1DI8V-qufuQAUOSD4WlYmmPSfc/s320/IMG_2452.JPG" width="320" /></a></div>Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-4345706974401643932.post-85466024709597931492011-06-21T23:17:00.011-04:002011-07-25T23:46:51.716-04:00Come on AntibioticsToday was our first visit back to the Clinic since coming home. I was actually pretty glad because I had some concerns to voice to the doctor and I was curious how her blood work was doing. Thankfully her ANC was in the 800's, so it is on it's way to recovery.<br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg6xYS4s9xZKphx-EQ5sUchSsadRxbrovYIZvnXoH9CtGVaWfhDKsqOXpJqaZWNWDjpeDrJmMnOXtPB7tOIHk_fJaXDBGq2gTwFcWs9HPWXFxqq5dngcT56EyvvFAo5LkPgNuF4LaFHVoY/s1600/IMG_2424.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg6xYS4s9xZKphx-EQ5sUchSsadRxbrovYIZvnXoH9CtGVaWfhDKsqOXpJqaZWNWDjpeDrJmMnOXtPB7tOIHk_fJaXDBGq2gTwFcWs9HPWXFxqq5dngcT56EyvvFAo5LkPgNuF4LaFHVoY/s320/IMG_2424.JPG" width="240" /></a></div><div style="text-align: center;">(Watching PBS while waiting on blood work. Kaili was making sure Averi didn't fall off the chair.)</div><div style="text-align: center;"><br />
</div>This morning was Averi's last dose of Flagyl, the antibiotic to treat her C. diff. However, her IV antibiotics go until Saturday. Remember how I told you that she got the C. diff in the first place because she was on antibiotics? I told the doctor that it made no sense to me to stop treating the C. diff when she was still on other antibiotics that could just encourage her to get it again (once you have C. diff, your chances of getting it again go way up). Thankfully she had no problem extending the Flagyl until the day after the IVs are done.<br />
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My other concern is the fact that one of the bacterias growing in Averi's blood is the exact same one that set up shop in her broviac line after doing IV antibiotics at home and ultimately led to her PICU stay. The next steps for Averi are having a bone marrow biopsy and (if it's clear) getting her broviac out, hopefully sometime soon. So I asked if we could extend her antibiotics until she had her broviac out so that there wouldn't be any chance of infection in the line. She said no.<br />
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While she does understand my concerns, she said that we wouldn't do that if Averi was going to get another round of chemo and we just have to trust that the antibiotics are doing their job. That didn't do much to make me feel better. She did buffer my fears a little by scheduling more blood cultures to be taken when we come back next week, but the truth is that if Averi's going to get sick it's going to happen before we come back.<br />
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She's going to schedule the biopsy as soon as possible since Averi's ANC is closing in on 1,000 and then we can get the port out and be done with the sepsis worrying forever.Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-4345706974401643932.post-3994633565702169892011-06-18T23:12:00.001-04:002011-07-25T23:16:32.654-04:00Our Little Drug Addict<div class="MsoNormal">I’m starting to wonder if coming home was such a great idea (which is only said in jest because being home is always the best option!).<span style="mso-spacerun: yes;"> </span>Averi has quite the medication regimen and we are missing the night nurses who used to noisily come in the room and give the meds for us. :)</div><div class="MsoNormal"><br />
</div><div class="MsoNormal">Yesterday when we got home, the home nurse came and oriented us on giving Averi her IV antibiotics.<span style="mso-spacerun: yes;"> </span>She was late, there were lots of silly papers to sign, and we already knew how to do it so it was a fun visit.</div><div class="MsoNormal"><br />
</div><div class="MsoNormal">After she left I had to sit down and write out a med schedule so that we knew when all the ‘every 6 hours’ and ‘every 8 hours’ medicines were due.<span style="mso-spacerun: yes;"> </span>That’s when I realized that Dan and I were going to have to take turns getting up all through the night in order to stay on track.<span style="mso-spacerun: yes;"> </span>One of stayed up till 1:00 while the other one got up at 3:00.<span style="mso-spacerun: yes;"> </span>Judging by how tired I am today, it’s going to be a long next few days.</div><div class="MsoNormal"><br />
</div><div class="MsoNormal">Luckily the IV antibiotics don’t take quite as long to administer as the ones did back in October.<span style="mso-spacerun: yes;"> </span>This is because one of them is in a vacuum bottle that slowly administers itself.<span style="mso-spacerun: yes;"> </span>It is the coolest thing ever!</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjkNCPZ8Efynbspgvzaei0nxsr5GnOWupNuHeyM3n8b5d39hkmvmTvd0tOIOzoVWzoqPt6zxaXFq5mqCcKEjVPyseGh_sOnnieMUlgA4jIze67Guaak0MnmoseRBEDNoLESPUZYoYz66CI/s1600/IMG_2445.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjkNCPZ8Efynbspgvzaei0nxsr5GnOWupNuHeyM3n8b5d39hkmvmTvd0tOIOzoVWzoqPt6zxaXFq5mqCcKEjVPyseGh_sOnnieMUlgA4jIze67Guaak0MnmoseRBEDNoLESPUZYoYz66CI/s320/IMG_2445.JPG" width="320" /></a></div><div class="MsoNormal" style="text-align: center;">(You hook up the one on the left and the balloon slowly deflates over 30 minutes until it looks like the one on the right.)</div><div class="MsoNormal"><br />
</div><div class="MsoNormal">Don’t worry, we only have to do this for another week.<span style="mso-spacerun: yes;"> </span>After that there will be plenty of time for catching up on lost sleep.</div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-4345706974401643932.post-73508853775450753122011-06-17T22:19:00.001-04:002011-07-25T22:48:50.688-04:00Together at LastAveri woke up with an ANC of 264 and negative blood cultures, and that meant we got to go HOME!!! I can't believe the day has finally arrived. Every day for almost the last month I have looked at this sign on our door and known that one day it would actually be meaningful.<br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiAnrxn3jkU46z3BzfvJmJWwDd2upvIOCB8EdNOfacOlpPZ_fyDbPq3D3vjFCo0FjRDs47gfm1cw6I_RQvcIl6GD7FMDapF56atHfUePUTJh7xA9AFrbchwjQdYK53n5Qtwp0j5mo3WQRo/s1600/IMG_2401.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiAnrxn3jkU46z3BzfvJmJWwDd2upvIOCB8EdNOfacOlpPZ_fyDbPq3D3vjFCo0FjRDs47gfm1cw6I_RQvcIl6GD7FMDapF56atHfUePUTJh7xA9AFrbchwjQdYK53n5Qtwp0j5mo3WQRo/s320/IMG_2401.JPG" width="320" /></a></div> Today was the day we got to take that sign down, pack it up, and go home hopefully never to return.<br />
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There is a special tradition on the Hem/Onc floor that patients get to ring a bell announcing their final departure. Dan took off work so that we could all be there as a family to declare our happy news. It was a group effort to ring the bell, but then again so was the journey.<br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjgwAQnF3VhXB9adIqnAjLwTyWRNSyWGA1Ktf4DvekzyRZCwJfXIw_Jnv12ExxFtn2pQJif6eRYODIaIfu0sNlAfa8G37DWhOlfok02RovTLD1VEn_Q_13fJgraOR2k6TXiM2v4H1ITrEg/s1600/IMG_2712.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjgwAQnF3VhXB9adIqnAjLwTyWRNSyWGA1Ktf4DvekzyRZCwJfXIw_Jnv12ExxFtn2pQJif6eRYODIaIfu0sNlAfa8G37DWhOlfok02RovTLD1VEn_Q_13fJgraOR2k6TXiM2v4H1ITrEg/s320/IMG_2712.JPG" width="240" /></a></div>Ringing the bell was much more emotional for me than I thought it would be. Living at the hospital has become our life and I teared up in sorrow for the friendships we are leaving behind just as much as I did for the joy of putting this all behind us.<br />
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So many people at the hospital have touched our lives during this journey and they all came to celebrate with us as the bell sang out our victory. To say it was joyous doesn't even come close.<br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjgwAQnF3VhXB9adIqnAjLwTyWRNSyWGA1Ktf4DvekzyRZCwJfXIw_Jnv12ExxFtn2pQJif6eRYODIaIfu0sNlAfa8G37DWhOlfok02RovTLD1VEn_Q_13fJgraOR2k6TXiM2v4H1ITrEg/s1600/IMG_2712.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><br />
</a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEizn6T9Es5q1sMuSDN8hVIQPzwqUFtuPpxFhT5FBS22u70zGfc481UZSJiVR3CGRFxalp9u_nnMe9-S2wCcVVMiCXTMmoW9ERFkWTnqUKYB-3Y-9OBtiXe4s4Oa4PtGcpvgEnpkKc_i2g8/s1600/IMG_2406.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEizn6T9Es5q1sMuSDN8hVIQPzwqUFtuPpxFhT5FBS22u70zGfc481UZSJiVR3CGRFxalp9u_nnMe9-S2wCcVVMiCXTMmoW9ERFkWTnqUKYB-3Y-9OBtiXe4s4Oa4PtGcpvgEnpkKc_i2g8/s320/IMG_2406.JPG" width="320" /></a></div><br />
After ringing the bell, Averi took a short nap while I took out our cart load for the last time. Then the moment finally came where I picked her up in my arms and carried her off the floor and out of the hospital like it was no big deal. As we walked through the halls, the only visible signs of our time spent there were the mask on her face and her shiny bald head.<br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjwTocdGWZeh7TiHiFCU7wI6VLVD1_E03aPpGFTAoWa3QUpdVGbTr2D2uZsBa34Y_hiG1mEYmO1pGAKrw2MhNty69T1CMixcdAa3Mvi4CrrMRpEJD6Q4uG8-rxx8c_5MrvtHWmFjJRJZpM/s1600/IMG_2418.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjwTocdGWZeh7TiHiFCU7wI6VLVD1_E03aPpGFTAoWa3QUpdVGbTr2D2uZsBa34Y_hiG1mEYmO1pGAKrw2MhNty69T1CMixcdAa3Mvi4CrrMRpEJD6Q4uG8-rxx8c_5MrvtHWmFjJRJZpM/s320/IMG_2418.JPG" width="320" /></a></div>We are SO excited about being a family again. There are still several steps left to take before this part of our lives is truly over, but at least we are one step closer to the finish line.Unknownnoreply@blogger.com4tag:blogger.com,1999:blog-4345706974401643932.post-15972863106305112632011-06-17T22:01:00.002-04:002011-07-25T23:11:02.685-04:00GI JaneI decided a few months ago that I was no longer going to be upset that Averi isn't crawling because it makes living in the hospital a little bit easier. She stays on the play mat and doesn't try to wander off onto the dirty floor. So of course she would pick today, her final day in the hospital, to decide to learn how to crawl.<br />
<div class="separator" style="clear: both; text-align: center;"><iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dzqXhbZZaC48DXelNyGOuRt6v8XCjhoptReoEDSAhX1EJFZaPJSS3-jcqOM6ZIn4xatstvvsJ0Kt_-bnkyWvA' class='b-hbp-video b-uploaded' frameborder='0'></iframe></div>It may not be pretty to the untrained eye but to me it is absolutely beautiful! She is getting on and off of her tummy correctly, alternating her arms and legs, and getting from point A to point B without crying.<br />
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This truly marks the beginning of a new and more exciting chapter in our lives. The best part is that every single one of her therapists came at the same time to say goodbye today and they were all able to witness her success. It was very rewarding. Little Averi has come such a long way and we are so proud of her!Unknownnoreply@blogger.com4tag:blogger.com,1999:blog-4345706974401643932.post-59515723191933890732011-06-16T22:05:00.000-04:002011-07-25T22:18:31.869-04:00If it's Making You Sick Then it Must Be WorkingWe finally found the answer to Averi's puking woes - Flagyl. The oral antibiotic that she's on to treat the C. diff can apparently cause nausea. So why is it that no one has told us this until now?<br />
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The nurse today said that she had C. diff once and the flagyl made her extremely sick. She didn't want to eat anything and really couldn't because everything (and then some) came right back up. This explains a lot, like maybe why Averi puked another 2 times today and doesn't seem to be doing any better even with antibiotics on board. Now we can stop worrying about what's causing her to be sick and stop trying to feed her so much until she's done with the Flagyl (which isn't any time soon).<br />
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The nurses have been very helpful today. The night nurse came in with an even better solution for keeping Averi's central line caps clean. She used a velcro-like sticker that is normally used to hold catheter lines on your leg. It's wonderful! Why someone didn't come up with this idea like say 8 months ago is beyond me.<br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjINTIX88dHBWhyOomswjeH3f9H3jlqP6O4f6cl_6thEHcxyiUry0Zg9oXdeRWVQeKVjlOnx3oVkf71RgXFQ3dmbGCwVnMAsQe_rsguzsziQAKwZIcVy8mT6ZbyN52xtlCjCjKutWaPjWk/s1600/IMG_2394.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjINTIX88dHBWhyOomswjeH3f9H3jlqP6O4f6cl_6thEHcxyiUry0Zg9oXdeRWVQeKVjlOnx3oVkf71RgXFQ3dmbGCwVnMAsQe_rsguzsziQAKwZIcVy8mT6ZbyN52xtlCjCjKutWaPjWk/s320/IMG_2394.JPG" width="240" /></a></div>Averi's just excited that she has one more thing stuck to her that she can pick at.<br />
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Her anc dropped a little, down to 230, but it is still above the 200 mark. This means that if her cultures come back negative tomorrow and her counts don't drop at all...she'll be able to go home tomorrow. I'm trying really hard not to get my hopes up and jinx it.Unknownnoreply@blogger.com0