RSV/Pneumonia

Sigh. I guess Ava felt left out? She mistook a hospital stay due to illness as a "milestone" she needed to meet? But really baby girl, did you have to catch both(supposedly) at the same time? Did you really have to have respiratory distress mommy hasn't seen since your first few months? Months that were filled with words like CPAP, CPT, breathing treatment, lung disease, etc. You know Ava, she goes big.

SO, Tuesday afternoon we went to the park with some close friends. Ava was super excited ALL morning to see her friends, especially "Loogie" which is Ava's way of saying Logan. Bouncing off the walls, driving mama bonkers until it was time to go. We get there, she's playing but rather suddenly gets super clingy and kind of just looks done, drained. Probably an hour later we are at home and Ava falls asleep so fast. Now if you know Ava you KNOW this girl NEVER slows down to nap unless she's sick. She wakes up probably 2 hours later and has a temperature and a cough/pretty bad runny nose. We treat the temp as needed and keep an eye on diva.

Next morning, more temp, more cough, more snot. Crap. :( Ava takes another nap that day and her appetite is definitely decreased. I continued to keep a close eye on her, but really it just seems like a bad cold so I am not too terribly concerned. During that night and into the next morning, Ava starts breathing rapidly. We didn't get much sleep that night, making sure she was okay. The next morning when she wakes the temp is finally down, she is happy and more like her normal self so we are thinking YAY! Then she falls asleep and is asleep for a LONG time. The breathing starts getting worse, and I notice she starts retracting. So that evening we take little miss into the local children's hospital ER.

We got a bed in the ER rather quickly, which was impressive. There we go through the usual questions, and the OH MY's explaining Ava's cardiac history. Overall I am extremely impressed with the ER and the staff there. They got her in right away, asked all the right questions without too much repetition, and started tests immediately. The only thing that really angered me, was the IV situation. It just should NOT take 6 blown veins and 8 pokes to get an IV. I realize she has lots of scar tissue(please don't comment on how you can tell she's been poked quite often nurses, it only brings back terrible memories and feelings), she was dehydrated and "heart kids are always hard pokes anyways." It's no excuse to treat a child like a pincushion. If you aren't confident you can get it, PLEASE call someone more apt to do it. Don't sit there and poke and prod on a small child who is very alert and already terrified, it's extremely traumatizing for them and anger-inducing for their parents. After way too many tries, I told them they needed to be 100% confident or back off before poking again. They called in the transport team who got it in 2 pokes. Usually they get it on the first try. Word to the wise and something for mom to remember next time, have them call transport FIRST. Not only did they get the stick quick, but they were HONEST with Ava. They TOLD her it was going to hurt, but that it would be brief and let her know WHEN they did it. No surprises, which actually helped. And afterwards, they gave Ava stickers. When you're 4(basically), and obsessed with princesses, an Aurora sticker makes EVERYTHING better. Loved them.

We got a bed up on the good ol' 7th floor, in the good ol' East PICU. Yuppers. The exact place Ava spent just over 2 months of her life before coming home for the first time. And yup, she still always has over a handful of nurses that remember her and are amazed at the little girl that failure to thrive, barely 8lb, 3 month old baby girl turned into. :) In fact, our first night there Ava had the same night nurse she had VERY often on her first stay, the first nurse to receive a smile from Miss Ava, Michelle. So nice to see her and know what great hands Ava was in.

That first night we were also told first that Ava's lungs were clear, no changes from her last xray. GREAT! But then a different doctor comes in and says it looks like a small bit of pneumonia and we start antibiotics asap. The next day the best cardiologist pokes his head in just to say hi and reassure us that this has NOTHING to do with Ava's heart. And also playfully lectures Miss Ava on her need for attention landing her in the hospital. ;)

Later doctors come by and tell us that Ava is all clear, her white blood cell count is normal, which means no infections! And again someone is saying that they don't think that little tiny "questionable area" is pneumonia and that we should be good to go home the following day.

There was some drama, but I honestly just don't want to go down that road again. This hospital just again proved why I will always be a nervous wreck and on my toes watching and double checking every one's every move when it comes to my daughter and that place. Never fear going over heads and questioning. Not only is it your right, but it's pretty much your JOB, especially for those of us with "special needs" children, though I really dislike that label.



Anyways. Ava came home Saturday morning and has been doing well. The first day home she was showing signs of trauma. Which is the most heartbreaking thing to encounter. She freaked out at bath time and with touch. I had to slow down and explain what I was going to do before I did it or she just started screaming and backing away. :( The first night home was filled with lots of terror and screaming for me. But luckily she didn't take too long before she was comfortable and trusting again. Atta girl. :)

Thank you to everyone who was there for us, even if it was just through sending me encouraging messages, emails, etc. Especially to my dear hubby, who seriously still amazes me with how committed he is to his children and family. Those who helped watch Gregory, helped me get to the hospital, those who offered to keep us company, feed us, etc. YOU guys help me more than I can ever express, and I am truly thankful to have so many people who care so deeply for my girlie.

Lots of love, and promise next post will be a happier, cuter one! ;)

Oh, Ava.

I just realized I haven't given an update on Ava's health/development in a LONG while. Sorry. But no news is really good news around here. I rarely think to blog unless I need to vent or am freaking out. :)

I will start with the big eating news. Ava has been eating, by mouth, full meals and snacks, since before October of last year. AWESOME! Such a big accomplishment for my little miss! All the issues we used to have, with the occasional reflux(which at one time was so severe Miss Ava was categorized as failure to thrive!), mucus-y retching, gagging, etc have all vanished! Everyone told me to have patience, one day in her own time she would develop those muscles and become more coordinated and it would all fall into place, just didn't expect it to happen so effort and flawlessly. So we haven't used Ava's g-tube in months. She takes her aspirin by mouth every morning with her vitamin and all the other medications have been dc'd. :)

Ava started private speech therapy last Friday, and is still going to her preschool class two times a week. Speech went great. Her therapist was very optimistic and excited to be working with her, again. :) She said how she can hear all the words forming from Ava, and that she will work on further concentrating on Ava's muscle tone in her lips and tongue, there are certain stretches you can do with the face to help "wake up" the muscles and get them working even while at rest, as well as prompt them to move the way they need to in order to make certain sounds. As far as cognitively though, she was thrilled with what she saw and said it's "all there, and once Ava gets going there is going to be no stopping her!" Ahh, music to this heart mamas ears. Right now Ava's school and speech's schedules aren't meshing very well, at ALL. But we have her in for once a week as of right now, hoping for more along the way and definitely over the summer when Ava will be out of class.


We are still working on referrals for GI(it's been a LONG time since she needed one) and a speech pathologist the ENT recommended to address her possible palate issues I covered in a previous blog.

In not really Ava, but still sort of Ava news, little league season is up and going! Love this time of year and all the chaos it brings! Which means warmer weather is right around the corner as well. Now, as many of you know, we had CPS called on us last summer for "bruises" on Ava(the case was investigated, complete with visits to my son's school, talking to the grandparents, Ava's doctors and a visit to our house/examination of Ava and was dropped within a week). We are still not sure who, and it doesn't really matter. The point is that Ava is on a daily aspirin regimen, which causes her to bruise rather easily. You will NEVER see Ava without bruises up and down her shins, especially. And it is my job as her mommy to make sure everyone that comes in and out of her life in any way knows this. I thought I had my bases covered last year, but there is one group of people I never thought to alert. Greg's baseball team/parents. So I am debating still on how to broach this. I am thinking the best way is to just shoot a quick and short email addressing her aspirin therapy and the side effects and to please approach us with any concerns? And of course, link to Ava's blog so they can, if they so choose, get a bit of background info on our lil miss. It's practically a whole new team this year, so I definitely need to do something. Ugh, I just don't think I will ever get used to this part. Things I don't even think twice about, because they are second nature. But things that other people would be quite concerned over. And having to explain it all. Oh well, if that's our biggest concern I'd say we have it pretty good right now! :)

Sorry for the sporadic postings. I am trying to get back into the habit of posting weekly, if not more often! Have a great week everyone!

March for Babies

Hi family and Friends!

I have finally done what I have talked about doing(and then almost always completely forgotten about until it's too late) for about 3 years now, that is I registered and made a team for the March of Dimes March for Babies walk!

A little bit of info taken from the March for Babies page:

Every day, thousands of babies are born too soon, too small and often very sick. Our team is walking in March for Babies because we want to do something about this. I know you care, too. That's why I'm asking you to join us.

If you can't walk with us, please help by donating to our team. You can do so right on this page. Thank you for helping us give all babies a healthy start!

The mission of March of Dimes is to improve the health of babies by preventing birth defects, premature birth and infant mortality.

Funds raised in March for Babies support research and programs that help moms have full-term pregnancies and babies begin healthy lives. And they will be used to bring comfort and information to families with a baby in newborn intensive care.


Follow this link to go to our team page where you can register/donate: http://www.marchforbabies.org/team/t1380190



Let's go out there and represent our precious heart hero, Ava! As well as honor all those beautiful babies and their families who each day are born prematurely, sick, or worse. We are lucky to have such a large family and so many incredible friends. I do not ask for much from any of you, but I do ask that you try your best to make it out to this walk, as well as the one for the AHA in September. It means the world to me, and someday very soon will mean just as much to Ava. :)




Thanks! Hope to see you then!!

ENT

SO, I am not sure how much of Ava's palate "issues" I have actually gone over and covered for everyone, and especially on this blog. So I suppose I should start at the beginning.

We first saw milk come out of Ava's nose the very first time she ate, only hours old. It happened while eating, as well as afterwards, if she spit up half of it would expel via nose. We mentioned it to the nurses who passed it along to dr's. They would take a quick peek down her throat and in her nose, note that there was no cleft or severe palate issues, and leave it at that. "I cannot see or feel any abnormalities" couldn't even begin to tell you how many times we have heard this. Right. So every baby spits up through their nostrils? Didn't think so. We didn't push it nearly as much as we should have, though. We took their word and did the "wait for her to grow and watch to see if it's something she "grows out of" game. Though we did continue to bring it up, only to be met with the answer of, "well I see it noted that no cleft or abnormal palate was noted on observation".

Fast forward to a few weeks ago, at Ava's private speech evaluation with a wonderful therapist Ava saw before she went into the Alta program. This was no typical, 15minute, let's hurry up and get this over with(how it often seems) evaluation. This Speech Therapist really took to actually evaluating Ava and noticed a few things that sent up immediate red flags. She asked me a few questions and continued playing with Ava. Then she asked if it was okay to look into Ava's mouth to check out her palate. Ava was very willing(she trusts her therapist) and after a somewhat lengthy look around, she said while she is absolutely not a doctor or specialist in this field, she is noticing some abnormalities going on in there. We discussed what they could be, what it would mean, what her part in everything would be, how I should approach this, etc. She was so very helpful. Someone was finally listening to our concerns and validating them. She offered to send in her findings once we got the referral for ENT.

Fast forward to today, the day of Ava's appt with ENT. We also decided since the school was unsuccessful in getting Ava to participate in a hearing test(go figure, typical Ava) that we would go ahead and try a hearing test there. So we got that all set up, and went over a few questions and concerns, mostly about her ears. We mentioned the palate so he does the usual look and feel, says everything feels and looks fine and continues on about the ears.

Frustration. I am so absolutely frustrated at this point. I mean I specifically tell this specialist that my almost four year old cannot blow a bubble or make certain sounds, that it is PHYSICALLY impossible for her, and that liquids STILL come out of her nose when she drinks. And he just more or less brushes it off again. I tried to calmly state that this needs to be further evaluated because there is obviously SOMETHING going on. And that her speech therapist didn't just look, she had Ava talk and make certain sounds while looking to see how the palate was moving, and that she absolutely saw something ABNORMAL going on. What she thought it was wasn't necessarily important, but she even allowed me to look in both her mouth while making an "aaaahhhh" sound and then in Ava's mouth while Ava made the same sound and I could clearly see discrepancies. So I wasn't leaving that office again without a better answer/solution. Only then does he mention that we will have to get another referral to an actual speech pathologist or craniofacial specialist. And that they would basically further investigate what could be going on.

I understand that we are her parents, we are her advocates, etc. But what happened to doctors who go above and beyond. Or those who just actually do their jobs and continue investigating until the "problem" is solved, or in the very least addressed?! I honestly just do not understand.

So now we sit and wait to hear back about the new referral. Which isn't going to be the easiest to get because there are no specialists in our "group" they are all at Sutter and UCD. Which means we will undoubtedly be referred to a UCD doc.

Oh, and Ava sort of passed her hearing test. She has small ear canals and it makes testing and results difficult, we were basically told. Sigh. Plus, Ava seriously really really REALLY doesn't like doctor offices. Nor does she trust one single word out of our mouths while IN any doctor's office. Making it impossible to console and convince her that they are only going to look in her mouth and ears, no owies, etc. I know I was just on one, but I could REALLY use a vacation. ;)

We went to DISNEYLAND!!

Ah yes. The trip I have been mentally planning since our last trip with Gregory when he was about 5, finally happened. We booked our 5 night, 6 day, 5day hopper pass trip to Disneyland via Costco Travel. We stayed at the Hyatt OC, which is where we had previously stayed and fell in love with. And NO it wasn't JUST because they have a Starbucks in their lobby, though that was definitely a perk. :) I have to say, I thoroughly enjoyed my booking experience with Costco Travel. They offer fantastic rates, and include lots of great and fun extras. Such as a Character Dining Experience for each staying guest(we chose the princess experience at Ariel's Grotto for Ava since Greg REALLY didn't have a preference and said as long as food is involved he is down, what a good big brother! ;), travel tags, lanyards, pins, a $20 Disneyland gift card(yeah it pretty much bought the equivalent of a pack of gum and a drink) extra hours in the park, preferred seating for shows, etc.

So we were set to leave for Anaheim on Monday, February 15th. On Sunday, the 14th, Husband surprised us by announcing we would be leaving a day early, HOORAY! So we quickly got the kids situated and packed up and we were on our way!



The hotel actually upgraded our room from what we had reserved, a kid's suite(has the main part of the room, plus a smaller room behind glass doors that has a bunk bed, tv, etc for the kiddos) to the family suite. Which had the kid's room with an attached bathroom and vanity, the "living room" common area, and our bedroom with another full bathroom. It was newly renovated and plenty roomy for us four. And because I always get comments about how I never take photos of the hotel room(who thinks to do that?!), I actually have a couple to share, sorry...


our room

kid's room

family room

































We arrived pretty late that evening, and decided to just take it easy so we could wake up early and ready to go the next day. The kids did really really well on the car ride. Ava luckily slept most of the second half, if not more, and Greg had his lifesaving Nintendo DS to keep him occupied.

Our first night in the room...








































Day one we winged it and spent most of the time familiarizing ourselves with the parks again. The great thing about staying at the Hyatt is they offer a free shuttle that leaves every 30 minutes to and from the park. So we used that to our advantage most days and would go home for lunch/Ava rest time. She never really napped, she never really does, but the rest was MUCH needed, seeing as how we didn't return back to our room until after 10pm most days. Gregory quickly remembered which rides were his favorite, which new ones he wanted to try, etc. Ava did what we thought she would do, and wouldn't go 20feet anywhere near Mickey or his friends. Sigh. She has a serious problem with people in giant furry costumes. Not a fan one bit. Poor mamas. Actually, they don't even have to be furry. She equally loathed and feared the totally fur-less jelly belly thing that was dancing around the Jelly Belly Factory last summer. Sigh...



















Day two was filled with rides, rides, food, playhouse Disney live shows, souvenirs bugs life shows, rides, food, parades, and more rides. FUN! We definitely brought back two VERY tired, very HAPPY kiddos to the hotel room that night.




























On Wednesday Miss Ava had a date with a few princesses. She was SOOO excited. To see the glee and sheer happiness in a child's face like that, it's magical. Seriously. I used to wonder what kind of nutjobs paid that kind of money for their kids to "eat with their favorite Disney Characters" I am now one of those previously said nutjobs. AND PROUD. ;) It would of been worth it at double the price. And the food was actually pretty darn tasty, to boot. We also spent the day going on every princess ride imaginable, touring Aurora's castle, shopping up a storm in the Bibbity Bobbity Boutique(that place is pure evil), and going on It's a Small World only about a million times. :)































So the next day we made it more about G, as much as we could. While him and bigger G went on Space Mountain, and all those other rides, I took Ava to meet Tinkerbell and Silvermist. We waited in a line that took over an hour and a half to get through. To meet two characters. Yup. I think that was definitely the final nail in the nutjob coffin. Oh well. Ava was again, beside herself happy to be meeting TINK and the "blue fairy" they signed her autograph book, talked to Ava about her favorite color(she was head to toe pink but insisted her favorite color was "purplicious") and Tinkerbell even insisted on dancing with Miss Ava once she saw Ava's cute princess ballerina tutu(purchased from that previously mentioned evil store that is chocked full of the cutest princess stuff EVER). It was the cutest thing ever to witness, and the big smiles during and after made standing in line, in the hot sun, totally worth it! Later that night, after the parade, we wandered over to Downtown Disney with the sole purpose of taking G out to dinner at the ESPN Zone. Well...turns out that's another place you really should make reservations for. 75minute wait for dinner and it's already 8pm?? No, thanks. Gregory was pretty happy just browsing the store, picking out an ESPN shirt and game, and calling it a night, though. So we went back to the hotel and ordered in.































Friday we got to the park early, and headed straight to Toontown. Ava saw Mickey and Minnie's houses and was STOKED to meet them...thank GOODNESS. So we stood in really short almost nonexistant lines and took pictures with each character, let G chose if he wanted to partake and walked through toontown a little bit more. Then took each kiddo on a couple of rides until it was time for lunch! Which we had at the super yummy restaurant that is inside the pirates ride, Blue Bayou. Oh, it was SOO good. After that, we just let the kiddos do whatever rides they wanted to do, as many times as they wanted to do them.




















The trip was fantastic. The kids both had a wonderful time. And we were EXHAUSTED. But in a good way. I am just super thankful that we are able to take a trip now with Ava and not have to worry about as much as we used to. In fact, this was our first real trip besides to San Francisco, that we have all gone on together since Ava's birth.

Greg was worried in the days before the trip that there wouldn't be much for him to do at Disneyland, but he quickly found out that there was still PLENTY that held his interest!Plus, he was a tremendous help with his little sissy. He never once complained if he had to accompany Ava on to a couple of her rides because she would request for brother to go with her, or when we went to the princess lunch. Ava overcame her fear of people in big costumes(hooray!) and had the time of her life, one she still talks about and reinacts with her dolls and any willing and able body. :) We owe our amazing time to the guy who works his booty off to provide for his family and never, ever complains about it. I married one incredible guy, and the best father around! Thanks hubby, we love you so much!!