Thursday, August 25, 2011

Avery's Urology App., Aug. 2011


Miss Avery decided to begin running fever yesterday, so I was worried she wouldn't be able to make her yearly urology appointment today! I guess she just has a sinus infection or something. She stayed home with Grammy, and while her eyes were pretty glassy and she was a bit stuffed up, she seemed ok when I arrived home that afternoon. Thankfully, she didn't wake up with any fever, so we headed to Batson around 8:00 this morning. Upon arriving, we headed up to the Eli Manning Clinics, and signed in around 8:20 a.m. We usually get to our appointments early as they see patients on a first come, first serve basis. Normally, this allows us to get in and out before they get crowded and backed up. Unfortunately, today didn't work out the way we'd hoped in that aspect! We checked in, and went down to X-Ray for her VCUG, and then came back up to the clinic. They ended up doing something with Avery's chart, and all the other patients got called back ahead of us, causing us to wait a long time. I had to get back to work, and Avery was worn out, so we were a little frustrated to say the least. If it were the first time this had happened in that clinic, it wouldn't be so bad, but they seem to have issues knowing what is going on, and have done this same thing before, as well as sent us up and down the elevator because they didn't know what we were supposed to be doing. I understand very well that everyone has "off days," but it seems like they have them every time we come, lol! Thankfully, the doctors and nurses make up for it!
Any way, on the the important part! Avery, as usual, got upset when we hit Woodrow Wilson today with the hospital in view. I think she was a worse because she hasn't been feeling well. She made sure the techs and residents would need a Tylenol or two by the time she left during her VCUG! For some reason, they couldn't get her to urinate, and needed a picture with her bladder clear, so they asked me to take her to the potty. Avery has been sitting on the potty several times a day at her new daycare, and we've toyed with the idea at home, but I've been waiting on her to be ready. Avery is the type of child that you cannot push to do something, because she will want the opposite (wonder where that comes from?). She started thinking it was fun to sit on the potty, but has never done anything. Amazingly, I sat her on the potty in X-Ray, and she tee-teed! It's so funny that her first time was there! I do realize that she really had to go, but still think it is funny! The techs gave her several Dora stickers (as well as crayons and a color sheet) for being such a big girl! As always, she told them bye-bye and blew kisses as we left.
When we FINALLY got called back, Avery has an ultrasound, and we were in the room. She now weighs 21 pounds! After being so frustrated, we were so happy to hear her doctor say that she has gotten better! Avery's reflux in her right kidney is completely gone, the reflux in her left kidney has gotten better, and the cysts on her right kidney have gotten significantly smaller!! God has once again been faithful in answering my faithful prayers (and the prayers of others)! While she still needs her daily (prophylactic) antibiotic, her doctor is not concerned and sees no need for surgery. We will return for a check-up in one year!
Avery seems to be doing well with her growth hormone treatment. She still cries, and probably will for a long time, but she recovers quickly and is in a routine. I think she has been restless due to some growth pains through the night at times, but we haven't noticed anything other than that.
Up next...Avery will have an ENT check-up in September (her tubes seem to be doing the trick), an Endocrinology check-up with bloodwork (hopefully everything will be clear on bloodwork with no - GH side effects) in October, and her cardio MR in December. We will then get the MR results and have her cardio check-up in January (praying all is still functioning beautifully).
While life throws us curve balls every now and then, and things sometimes get us feeling down, at the end of the day, I always realize just how very blessed we are to have Avery with us. Since starting the Cross Healed Hearts ministry, I've just come across so many families going through far more than we could even fathom. Knowing what a true miracle child we have on our hands, and seeing her thrive and run around so happily- it's just beyond words. More than anything, it's made me fully rely on the Lord to handle things, and I don't think I'd have ever done so if it weren't for Avery.

Thank you for your continuous support and prayers!♥

Saturday, August 13, 2011

Summer 2011

Since school has once again begun, I can't help but look back over the summer that seemed to pass so quickly! While we didn't go on a big vacation this year, we spent a lot of quality time with friends and family. I very much enjoyed spending so much one-on-one time with my 2 year old, which was a very different experience than last summer! Avery is growing and changing so much, and I am still just overwhelmed with love as I see her happy and thriving. I watched videos the other night from the day we brought her home, up to more recent ones, and a mix of emotions came over me as I thought about how much she has overcome in her short little life. Avery is turning into a beautiful little girl, and while I miss the tiny baby who once depended on me for everything, I am so thankful for the independent little fire ball she has become!

Earlier this summer, we spent one morning with the Martins (Lacey, Larissa, and Ian) at the MS Children's Museum. Avery went in full speed ahead, and had a great time playing! I'd have to say that her favorite part was dancing to the huge juke box while watching herself in the mirrors! She also liked the little farmer's market truck, where she picked fruits and vegetables for her basket.







As you can see, Avery also learned how to open her closet doors this summer! I caught her playing with an old toy in there one afternoon. You can see she knew she was in trouble (yeah right!).


We also spent a few Saturdays (one for the 4th of July) in Braxton at Grammy and Papaw's house. They have chickens, goats, cows, turkeys, dogs, the list goes on and on! Avery had fun dancing with Daddy in front of everyone. She gathered fresh eggs with Grammy, and she accidentally dropped one! Avery began playing Grammy's piano, and has been playing on her toy pianos ever since. I see a budding pianist in our future! She also had a great time playing with Gaines- Papaw let them feed the chickens! Daddy even took her for her first four-wheeler ride! She really loved that, and don't worry, they went very slowly!









For a mini-vacay, we went to visit the Flottas (Suzanna, Collin, and Cameron) in Georgia. As you can see, Avery made a friend in their dog, Shelby, by feeding her snacks! She had such a great time playing with Cameron, and even stayed with a sitter so Mommy and Daddy could go to the Braves game with Mr. Collin and Mrs. Suzanna! She was a great traveler, and watched her DVDs most of the way their and back without a fuss. We always have a great time visiting them, and I appreciate their friendship so very much.








After hearing her play and talk to herself for quite a while one day in her room
(she was supposed to be napping), Jake and I gave in realizing she wasn't going to sleep. When we entered the room, this is what we saw! Avery was hyper and jumping up and down in her bed with NO clothes (or diaper) on!! I put her down so I could grab a diaper, and she ran into the living room (streaking) and jumped on the couch! She preceded to dance to "Fresh Beats" on the rug when I scooped her up to cover her bottom!




As I stated in a previous post, Avery's cousin from Texas, Jener, spent several weeks in Vicksburg with GG and Papaw. Avery absolutely loved spending time with him, and Jener kept her entertained constantly. These pics are from the day Jener spent the night with us.



Thanks to some friends on Facebook, I won this adorable tutu and big bow from a page called Smockaholics! Avery had a great time playing dress up!




Avery spent a little time in "time-out" this summer. I'm not quite sure she minds being in "time-out," and now that I think about it, she doesn't seem to mind getting in trouble at all. Wow, I think we are IN for it! This one is a little fuzzy because I didn't want her to know I was taking it, lol. Doesn't she look pitiful? Don't be alarmed, as soon as we say "you can get up," she prances away all smiles like nothing happened!


Here is Avery coloring her Daddy's birthday present- she did such a great job!


We participated in "Wear Lilac for TS Awareness Day" again this summer. Although pink is our national color for Turner Syndrome, I believe lilac is Canada's national color. Avery's shirt reads "Believe" which I think is very fitting!




Jener is such a great cousin! He made a fort for them to play in, but Avery didn't really get the idea. She thought he was playing peek-a-boo or hide and go seek I think. She kept pulling the quilt down, but Jener was a good sport and played it her way! He also read to Avery, and she loved every second of it.




Avery began making music with all sorts of household items this summer. I think "The Fresh Beat Band" has really made an impact! Here are a few pics of her homemade drum!



Avery began her HGH, Genotropin, shots in July. While the thought of giving her shots for many years to come on a daily basis freaked me out, we have settled into a pretty easy routine every night. Avery anticipates the shots, and gets a bit whiney around bath time. She cries during the shot, but quickly composes herself afterwards. She loves putting a sticker on her chart, and always gives her Daddy and me a high-five and a kiss after getting her sticker. On the tougher nights, she gets a piece of candy, and we all know the girl loves her sweets! These pics are of Avery playing in the cooler her meds arrived in, and of her settling down after a shot.




My brother, Mike, and I never get to spend enough time together, but I was so happy to hang out with him for a bit when he came to pick up Jener. It takes Avery a while to warm up to any one, but he made a quick friend by swinging her around! What can I say? The girl loves to rough-house! Uncle Mike was a lot of fun. He even took the kids outside in the heat, and pulled them in the wagon.






Dairy Queen had their Miracle Treat Day, and the profits from Blizzards went to Blair E. Batson Children's Hospital. It was a true sacrifice to treat ourselves to ice cream, let me tell you! As you can see, Avery REALLY enjoyed her "Chocolate Explosion" Blizzard right off the Chocoholics menu. I think it should be nicknamed the "Avery Bell" Blizzard myself!!




Now, Avery is settled in at Hinds Childcare Center as I have begun work. I really think she loves her new "school," which makes me one happy mommy. Jake and I both are noticing ways she has grown- her language seems to be picking up and she is eating more (and even trying some new things). She had no issues laying down on her cot for a nap from the first time she went, and is being introduced to potty-training. While she did cry with transitions (from room to room) at first, she is now well adjusted and comfortable. She's also bringing lots of pretty artwork home for us!


Other "little" things...

We're working on the alphabet, and Avery is identifying and saying letters as well as items that begin with those letters. We try to add a new flash card each week, and go over them before bed time. She is sitting still more and more allowing me to read to her at night, and I'm trying to teach her the "ABC" song!

Avery has developed a "Southern Twang" in her voice. She answers every question with "No-oh-wah." It, like most 2 year olds I think, is her favorite word other than "nack," for snack.

Avery reaches for our hands at the dinner table to pray before meals, and smiles and claps when we say "Amen!"

When songs come on T.V., Avery grabs Jake's hand, and leads him to the chaise lounge. She climbs on top of the lounge, and begins to dance and jump up and down with him.

Avery loves mail time on "Blues Clues!" She does the same dance as Joe, and excitedly raises both arms above her head at the end saying "MAIL!"

Another summer has come and gone! As you can see, Avery is exceeding all of our expectations (as always), and we are very proud of our little angel. She goes in to see her urologist on August 25, and we are praying that her kidney reflux has resolved itself. Hopefully, she will not need the daily antibiotics any more, nor the procedure it takes to correct the issue. We will continue on with her daily HGH shots, and visit her endocrinologist in another month for a check-up and blood work. So far we haven't experienced any negative side effects, and Avery is on week 4. It will be exciting to see how much she has grown! We will return to Avery's ENT for a check-up soon. Since getting her tubes back in February, Avery hasn't had an ear infection, and seems to be doing great with no fluid (which was our main concern). At first, she did have quite a bit of fluid draining out, but that hasn't happened in some time. In December, Avery will have an MR, which is a 3-D view of Avery's heart where doctors are able to see all the way around it. I am anxious to see exactly how everything is functioning, and thankful that she is able to have this done. Echos can be inaccurate, so this will be much more informative. She will go under anesthesia to have this done, so we will meet with them in October to discuss it. After the MR, we see her cardiologist in January. At Avery's 2 year appointment with her pediatrician, she still seemed to be right on target developmentally. Her doctor didn't express any concerns, and was happy with her progress.

We have been given blessings beyond measure, and I am so grateful that we are at a place of normalcy at this time. I know Avery will continue to amaze us every day, and am ecstatic that I was given this special gift- the gift of being her mommy! ♥