Monday, May 4, 2009

I know, I'm a slacker.....

Obviously it's been awhile sense I've posted, I have no excuse. Last time I posted was April 25th so I'll start the update from there. April 26th was my 29th birthday, (YIKES!!!) and my 2nd softball practice. I haven't really played in about 13 years, softball was my life when I was a kid, LOVED it, then I had a little skiing incident and had 5 knee surgeries. So, I figure it's about time to start playing again : ) My body, however did not agree so much after the first practice, but I'm recovered and am looking forward to our first double-header tomorrow night!!

My grandmom has been here visiting from Georgia for almost 2 weeks. I have found that the ONLY disadvantage to my mom living in the same town as me is that family on our side stays at her house when visiting. I don't know why? I guess because she has guest beds and a huge house to share : ) Seriously, wouldn't you rather sleep on an air matress in the middle of the living room at my house??? Ha ha. Anyhow, my grandmom got me this really cool old window to hang up in my house. I realize that this is way too hard for anyone to picture, I promise to take real pictures soon. As a house warming present she got us 2 ceiling fans for our family room, which brings me to share the excitement of last Friday night.... Chris, my dear handy husband, was trying to install the brackets to better secure the fans into the ceiling but first had to remove the fixtures for the light that was nailed in. So, ever the thinking man that he is, he started drilling it out and then all of a sudden water starts shooting out of the ceiling. (Let me quickly remind you that we have lived in our BRAND NEW home for 2 months...) Yep, Chris drilled a perfect hole in the Pex tubing. I was supposed to be going out on a girls night with my "special mom" friends (a joke we share with each other, hi girls!) but instead I got to stay home to watch the kids while we waited for the plumer to show up at 9pm. Fun fun fun.

Onto Ella updates....we have had a recent flurry of medical appts, ugh. At the follow up from Ellas tonsil and adenoid removal the ENT doctor referred us to a respiratory specialist because Ella was still having issues with her oxygen level going down while she sleeps. So, off to that doc we went. We discussed everything that has been going on, basically since birth anytime Ella has been in the hospital (not often) whenever she sleeps her O2 has gone down into the low 80's and high 70's. Since her tonsil surgery the snoring has stopped, which they had thought that obstructive sleep apnea was the issue. So, this doc recommended a sleep study, which was supposed to be done this coming Wednesday night, but they had a cancellation and requested that we do it 2 weeks early. Ella did fabulous and was quite cooperative, for her or really for any 2 year old! I however did not sleep so well. Long story short, the outcome of the sleep study was that Ella is no longer having any episodes of apnea (YAY) but her O2 still goes down to the same numbers. So, the respiratory doctor says he thinks there is some shunting in her heart and that not all of the blood between her lungs and heart is being properly oxygenated. Um, okay. Ella just had her PDA closed in December 2008, so this news did not thrill me. So, off to the cardiac doctor we went, in fact earlier today. They redid her echo and EKG, which they were going to do next month anyway as her 6 month follow up, and I am so very happy to say that her PDA is in fact closed and there are no heart issues. We have been dismissed from the cardiac doc, never to see him again. YAY again, though he really is a great and nice doc! His theory is that Ds kids in general have smaller lung volume, smaller respiratory structure and of course the decreased muscle tone and that all of these together is creating the lower stats when she is sleeping. I will say that Ella is SOOOOO floppy when she is asleep, so I'm guessing he is right, and obviously it hasn't hurt her in the past 2 years 8 months so I'm going to cross that off of my things to worry about list. Plus the sleep study showed that Ella's brain goes into all of the appropriate levels of sleep, theres like 5, so she is getting good sleep.

We also had our long awaited appt with the gastroentanologist, it took us 7 months to get in. Here we are trying to address Ella's reflux and constipation issues. I again really liked this doctor, he spent a lot of time with me and discussed every imaginable cause of these issues. He wants to sedate Ella and put a scope down her throat, take some biopsies to test for Celiac's, allergies and other things (can't remember) because he said that this may not be a true reflux issue. As far as her constipation issues I am supposed to do this horrific sounding cleansing with Ella until she poops water, disgusting I know. Then they are going to do some kind of emptying test???? Then I have to have her on a diet that involves miralax, 5 servings a day of certain fruits (pears, plumbs, prunes, peaches, cherries, nectarines, and grapes) and 9 grams of fiber a day. Which really won't be hard once we get the hang of it, the kid will eat ANYthing!!! The only foods we have to avoid are apples and bananas.

In the midst of all of this we have been having meetings with the school district that Ella will be attending when she turns 3. Because she turns 3 on August 30th, she will start the first day of school in the fall, meaning we have to have all the evals etc done before this school year is over. I was having some serious reservations about this transition but so far everything is going well, the therapists and child psychologist for the school district have really listened to me and are even going to give Ella occupational therapy despite the fact that she does not qualify for it, they realized that her "classroom skills" are certainly not up to par. So, I'm glad for that! Over all Ella is doing great. She has some behavior issues every now and then, she is definitely 2!!!! Man that kid has an attitude and she absolutely knows what she wants when she wants it, and you can't tell her no.

Hunter is doing great as well. He is still loving school. His preschool, Montessori school, has been having Spanish class once a week all this school year. Hunter often slips into speaking Spanish, like to tell me, no me gusta frescas (I don't like strawberries) I have to say I am quite impressed!!! I did take 4 years of Spanish in high school so, so far I am able to keep up with him, not for long I'm sure! He has also been playing soccer. It is quite hilarious to watch. I swear that kid does not have an aggressive/competitive bone in his body when it comes to sports. He just truly enjoys running with the pack of boys and socializing with his teammates. He cracks me up. We have been working on "attacking that ball" so in a game if he actually kicks the ball he stops and looks at me with a giant grin on his face, and either gives me a thumbs up, says "YEAH", or "I got it mom!!!" Too funny.

I think that's about it. We were able to go to a classmate of Hunter's house this past Saturday so that the kiddos could play outside together. Hunter's friend is Emily and one of Emily's big brothers, Logan age 6, has Down syndrome. Cool huh? It was SOOO cute to watch Ella and Logan play together, not just by each other but actually interacting with each other. Logan was so sweet to Ella, he would stop and give her hugs, at one point Hunter came up to give Ella a hug and she grunted/yelled at him and pushed him away and then ran after Logan. Hmmm, better watch out Riley, I think Ella has a crush on an older man : ) Here are some pics from that play visit....

Ella and Logan

Logan was cheering
Ella on, so sweet!

Logan was burying
Ella feet.
Hunter and Emily
(they are the same
age, isn't she so cute!)
I'm pretty sure
Ella outweighs her : )
Emily's other older
brother, Ryan, also
VERY sweet!!
Hunter and Logan
digging in the sand!


Kristen said...

What a long and great update!! I read every word!

The handy man story about your husband is a keeper. That's one to be remembered for years to come, look back on, and laugh about. :-)

I'm glad things checked out well for Ella's sleep and heart. I like the way you said you're checking it off your list of things to worry about it. :-)

Mary said...

Looks like you had a fun day letting the kids play in the sun.

So, I see you multiple times a week and I have to read about the sleep study online? What the heck?? Glad it didn't show anything serious.

Sorry you had to miss the special moms dinner. It was yummy and fun.

Wendy P said...

Thanks for the update! Great pics, too!

Anonymous said...

Thanks for the update! I missed seeing your kids' faces and "hearing" your voice!

Aunt Tami said...

Well, its about time!! This is the only place we get pics of the kiddos unless it is facebook...Thanks for posting some!! We miss them terribly! Glad to hear all of the doc appointments are going good. She is such a super kid! The kids looked like they had such fun together, and what a beautiful backyard!! What a nice way to spend the day! And Kacey, I am sure you didnt marry my brother for his handyman skills...ha ha! Oh well live and learn, unfortunately the hard way! Hope you get to make it to another mom's dinner soon! And keep all the tools away from Chris on that day and tell him not to start any new projects until you come home!! Ha ha! Hunter is too funny, maybe he can teach Shaylin some Spanish instead of just the basic counting and cat, dog etc... Such a good boy he is! Love the pics and you all!! Aunt Tami and family!!

Monica Crumley said...

Wow, you have been super busy! Happy belated birthday... you're so young! I was pregnant with my first at 29 LOL and now have 4! The kids look darling in the backyard. The gastro stuff doesn't sound fun. I didn't know about apples, but I know about bananas. My little guy has an ongoing battle w/ constipation. Ugh.

Blessed with Boys said...

Yea an update! I have to tell you that we have the very same issue with our son and his O2 sats dropping when he sleeps. The cardio tells us there is no chunting going on and the last time we were in the hospital the docs there thought it was because he had RSV. I think that its just him. He doesnt turn blue or anything so I think he is okay. I have thought that it was maybe because he needs his asnoids and tonsils out, but our ENT thinks it wont matter. How wonderful would it be is we all had a doc who specialized in treating kids with down syndrome??? I want one in my town...tomorrow!! haha

Amy Flege said...

glad to read an update. i am as bad as you are or actually worse when it comes to updates!
Sounds like ella is doing well..yeah!! love the pictures!

Bethany said...

I'm sure her reflux is completely related to her being constipated. Clear up her bowel and the reflux will get better. Oh, and strawberries and blueberries are great for fiber! LOL. Kashi is a great brand for fiber too. :)

Becca said...

Wow, that's quite an update! I'm glad I'm not the only one not posting regularly, though. I have been right there with you in blog slackerdom. LOL

OMG, I'm so sorry to hear about your husband's little issue with the pvc tubing! What a shame! I bet you guys are totally loving your house. From a fellow new house owner, I can only say it's AMAZING!

I'm so glad Ella's doing well! It's good that you had all that testing done so you can rest easy. Those are all things that would keep me up at night.

Robin said...

Ella Grace is always in our thoughts. We hope she gets all better & continues to heal. Take care!