Monday, March 8, 2010

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!


Kerry Tylenda-Emmons said...

So glad that Ava is doing so well! She is such an awesome girly : ) And I hope you get some answers soon from ENT and speech.

Kerry Tylenda-Emmons said...
This comment has been removed by the author.
Michelle said...

Hi love your pic of Ava she looks darling! Glad that she is doing so well. I agree that no news is good news especially when as heart parents we usually have some sort of news to post. Just wanted to say that it gave me hope knowing that Ava has a pacemaker considering my little one, Alexa just had one implanted. I loved seeing our disneyland pics too as this is something we had done every year with our older kids and are really looking forward to taking Alexa for the first time but we were worried if she would be able to ride the rides. So it was nice to see your family enjoying Disney like any other family. Hope to do this one day too. So happy Ava's food issues have gotten better, your patience has been rewarded. Well hugs to you!


p.s. What is her CHD?

Unknown said...

Thank you Kerry! I tend to think she is pretty awesome myself. ;)

Hi Michelle! Thank you! I am more than happy to discuss pacemakers with you if you ever feel the need. Ava has had hers since her second repair at 1 year of age, and so far have been told that the sky is the limits for her! :)

Ava's CHD's include an interrupted aortic arch, VSD, ASD, left ventricular outflow obstruction and left pulmonary artery stenosis.

Heart Hugs,

Jen & Ava