amazing milestones

What a week it has been! To catch up everyone, Miss Ava successfully completed her first year of Preschool! I am so very proud of her, and so thankful to her fabulous teachers who helped her accomplish and conquer yet another little milestone. We lucked out with these three fantastic ladies! :) Luckily for us, they will also be teaching the extended year summer school program Miss Ava is enrolled in. So glad they are running the program this year, plus Miss Ava having the same friendly faces will definitely help her apprehension she will undoubtedly have after a couple of weeks off.








Another huge huge HUGE milestone Miss Ava reached quite some time ago but was just made official two days ago, the Mic-Key is OUT and her stoma closed all on it's own within 24 hours! Ava has been eating on her own since fall of 2009. Getting her to take her medicine orally was the biggest hurdle, but she does it so well now. She is 100% off that nasty pediasure, eats usually anything we give her, and takes a daily multivitamin and just half a baby aspirin for meds. WOW! From the little failure to thrive baby with paralyzed vocal cords who aspirated and couldn't handle her own secretions that was 100% reliant on similac pm 60/40 and later pediasure for nutrition, to a healthy 4 year old who can't go over 45 minutes without needing a snack, this mama is SO beaming with pride!

I of course took before and after photos of Miss Ava's belly, but I think I am going to keep those to myself for now out of respect for little missy. :)

Four and Fabulous

Yesterday was Miss Ava's official birthday, as well as her party with lots of family and dear friends there ready to celebrate four amazing years with Ava. The day was seriously GORGEOUS, and aside from the nasty wind ruining all my pretty decorations, the party was perfect! Ava was her usual quiet and cautious self, which is always how she gets in large groups of people. She was also super tired as we stayed up quite late the night before attending a Rivercat's game with Brother's little league team(Rivercats lost, btw. But the kiddos loved the fireworks!). But all in all it was a wonderful day, not to mention Miss Ava made out like a bandit! She now has EIGHT pairs of sandals!! That's more shoes than there are days in the week! And if I sound like I have shoe envy, it's because I DO!!! ;) Miss Ava also scored a big girl two wheeler bike, a scooter, a complete Ariel beach ensemble, an entire summer wardrobe, just too much to list.

We missed those who couldn't make it, and appreciate all those who did! If you guys took pictures, please send them to me asap! :)


















Happy Birthday my precious daughter. You have accomplished so much, overcome more than many others will have to face in a lifetime, and did it ALL with a smile on your face! Mommy, Daddy and Brother love you so much and are so thankful for that day you blessed us with your presence. You have accomplished so much just in the last year...You are about to finish your first year of preschool, amazing! You are talking so much more, and working very hard in class and in speech therapy! Growing stronger every day! You started using the big girl potty and barely had an accident since! You were very brave this year for the two catheterizations you had. You started eating 100% orally and now ask for a meal/snack every 20minutes! You have made lots of new friends, had your first soccer class, first trip to the ocean, first trip to DISNEYLAND! Four years, wow!

Happy Birthday Ava! Preschool-style

I am SO super blessed and lucky that I am able to do things such as spend the day in my daughter's class and be a very small part of her mini celebration with her classmates and teachers. Which is exactly what I did today!!! Ava knew she was going to be celebrating her birthday today in class and although she seemed a tad bit apprehensive(not all that unusual for Ava) she was also really really excited! Most of that excitement undoubtedly had to do with the sugary super cute cupcakes that were involved. :) She woke up this morning ready to go! She picked out her outfit(luckily she changed her mind from the VERY full pettiskirt to a more sensible, but equally cute, outfit ;), brushed her teeth, combed her hair and was ready to GO!


I had lots of fun sitting in on class today. Just to see Ava in school and interacting is a milestone I hold near and dear to my heart. She has come so far, and I don't see signs of her slowing down anytime quick! ;) Thanks to the fabulous teacher team Miss Ava has on her side, I have heard so many horror stories of IEP's and everything/one that goes with them. But you have all been so wonderful and I have seen the tremendous progress little miss has made this year, both socially, physically and speech-wise. Thank you! :)

I miss me.

It's been almost four years since our lives forever changed. And I can't help but to reflect on how different things were four years ago today.

I feel like I was an entirely different person. I was optimistic, I was carefree(hindsight), I was naive, I was hopeful, I was joyous, I was elated, I was YOUNG. I knew almost next to nada about how sick babies could be(hindsight again). I especialy knew nothing about CHD. Not to be a total wet towel, but most days when I wake up not many of those descriptions match my mood or thoughts.

I do not think I am depressed, at all. And that Jen you see or hear that is ALWAYS putting a spin on the negative and trying her darndest to turn it into a beautiful picture isn't faking it. It just takes more work nowadays. Sometimes a LOT more work. And I think I am just exhausting myself more than anything. But I don't know how to slow down and just truly relax like I used to. How can you when you are constantly trying to remember appointments, medicines, helping others understand what your daughter is saying, explaining this and that, am I spending enough quality time with each child, am I making sure my marriage is happy, is Ava eating enough/gaining enough weight, etc etc ETC.

Hmm, a work in progress, for sure!

My Mommy's Day 2010

I guess first of all, HI. Total slacker with the blog again. I have been living in the cave that most of us crawl into right before one of our child's birthdays, knee deep in party planning. Luckily the colors are bright and everything is pretty. :)

I hope all my mommy friends had a fabulous Mother's Day with their lovies! I sure did! Hubby works the late shift, from 8pm-6am, so he surprised me with my favorite latte on his way home, as well as donuts for the kiddos so that I wouldn't have to cook...MMM. Oh wait, am I supposed to admit I happily allowed my children to eat donuts for breakfast? Oooh, and that I even had one myself?! And that it was really, really delicious?!

Moving on, so the kiddos and I hung out all morning, they both showed me what they made for me in class, both made me cry cause I'm absolutely, 100%, one of "those" mom's. G offered to make me toast(hey that's huge, I am pretty sure when I met GBo at his tender age of 21 he was burning water still), kept sneaking up and giving me hugs and asking if I was having a day as good as I deserved. SO SWEET. We played, etc, and then started packing up for our mini trip to the coast! Once hubby woke we were off! It took awhile to get there, guess a lot of people like to travel on Mother's Day, who knew, but it was SO worth it once we reached our destination! We went to a little beach I heard about from my brother Daren called McClures. BEAUTIFUL! The weather in town was a bit rainy and overcast, but on the beach it was nothing but blue skies and mid 60's temps. Perfecto! It was Ava's first time visiting the coast, and she was SOOO super excited the whole time. She's been to the lake before, things like that. So when we told her where we were going she was on the lookout for "wa-er(water)" the WHOLE ride down. Once she spotted it she literally shrieked so loud it hurt my head and got SUPER excited. There was a long trail down and from the place where we had to park you couldn't necessarily see the ocean all that well, at least the beachy part. So we started our trek down the path and once that beach came into view Ava again shrieked and started dancing, she even threw in a pirouette. ;)







The kids spent the day exploring, climbing, digging, running from the tide, and I loved every second of it! We finally made it home around 11pm and had some VERY sleepy, but very happy kiddos on our hands. Of course, the next morning was Monday and we all had to rise and shine to get ready for school, but the long day before was totally worth it!










Thank you husband for making my Mommy's Day fantastic and very memorable. Thank you Gregory and Ava for letting me be your Mommy, if everyone could be blessed with two kiddos like you two, I think the world would be a much happier & and fun place to live. :)

Nothing in particular...

So today we spent about 3 hours(including travel time) at a Genetics appointment for Miss Ava. She honestly hasn't been since an infant, for multiple reasons, mainly because insurance failed to see a reason for it. Ha. Ha. So anyhow, the appointment went very well. It was held at the M.I.N.D. institute, and the two ladies we saw today were fantastic! So kind and informative and really interacted with Ava quite well. Ava even liked one of them. ;) They said there wasn't much more they could offer Ava, we don't have any behavioral issues as of yet, although there are definitely moments, days, where I seriously question that ;), we already have speech and preschool going, as well as some OT through preschool. They do have a support group for 22q, and they gave me all sorts of information on other services, studies, etc that they do. They are also going to pass our info along to Dr. Tony Simon, and try to get Ava into his next study, so we are super excited for that. More on that as it comes along...


Today Ava also had class spring photos, and she picked out her new favorite dress(yes it changes daily) to wear with her sparkly sandals her Grammy picked up for her. Ava was running around the house practicing her pose ALL morning, it was the cutest thing ever. Then as soon as we picked her up from class she saw us and instantly busted out her photo pose, hilarious! We got home and took a little stroll around the block before lunch since the weather lately is amazing! I am still trying to learn this lens on my camera so I took it along. Well, anytime Ava saw me go for the camera she would stop what she was doing and start posing, how do you NOT laugh, and capture that!?







And in other, all thought and time-consuming news, I am in full swing of the planning of Miss Ava's party. If you have any crafty or baking skills, CALL ME PRONTO! I am so not above a family or friend discount/handout. ;) For family and friends, I will have invites in the mail the beginning of May. But her party falls on her birthday this year, so NO excuses!

xox

Hoppy Easter!

Wow! Easter turned out to be quite an eventful day, and almost nothing happened as planned. For starters, it was windy, cold and wet outside all day. Boo! Usually we are mildly complaining of the heat, so it's typical that as soon as we don't have said heat we are complaining of the cold! ;P

We had plans to spend Easter with my family and Greg's family, and our friend's the Weaver's were going to come over for an egg hunt and dinner with their two kiddos. Easter morning we ate breakfast together, the kids found their baskets and tore into those, the Grandparents show up and almost instantly Greg starts complaining of a headache and he is shivering, despite being dressed in layers, a robe and a blanket off the couch. Poor guy! I take his temp and it is normal. He ends up falling asleep on the couch and about 20minutes later wakes up with a beat red face. I check his temp again and it is up to 101.6. Poor kiddo had just gotten over a random ear infection over a week ago, so once he starts saying he is dizzy we think it possibly came back. Since we have friends with small kiddos coming over we decide to get him checked out asap at the med center so we know what is going on. There they rule out an ear infection, and strep. The doctor made an "educated guess" that he has a throat infection, prescribes more antibiotics and sends him on his way. The poor kid slept the rest of the day and didn't even want to eat any yummy Easter goodies! :(

Our friends decided to stay home and not risk catching anything, don't blame them one bit. The rain really started up and we didn't get to do an egg hunt outside! :( Ava had a good time though with her family and we are planning on doing a delayed hunt later this week for the kiddos, which will be super fun now that the rain has subsided and the ground is dry!

Here are a few photos, I even got one of G before he started feeling terrible...

The Silver Lining.

Since the day Ava was born, there hasn't been a dull moment. From the moment we found out our daughter had multiple CHD's and would need a series of three corrective, life threatening surgeries just to have a chance to live, I have been in a perpetual state of worry/alert. Now to those of you living with a "normal, healthy" child, this may alarm you. But for those of us with children born with a few extra needs, well you know exactly what I am talking about. Let's not sugarcoat how life is as a parent to a child born critically ill, it's years upon years of constant worry, fear, learning, memorizing, scheduling, organizing, did I mention fear and worry? You bet!

But then, there are what I like to call those "silver lining moments" and they come from everyday joys I once took for granted...













...Moments such as simply watching your little girl run and play and (almost) keep up with an oh so slightly older kid. Better yet, check out that mega watt, ear to ear SMILE on her little face. Moments like this make me truly realize how very lucky WE are to have been blessed with Ava. Enjoy it baby girl, you have more than earned it!

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!