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! ♥

Avery's First HGH Shot

It's been a lazy, rainy day at the Bell house. Avery spent the day playing around the house in her adorable rain boots! She's become quite fond of them as well as her pink glitter mary jane squeaky shoes! One of her new favorite places is the kitchen window sill. She sits there and talks to herself or passers-by all the time- little cutie-pie. Late this afternoon, the Phizer nurse from Memphis, Nurse Watson, showed up to lead us through giving Avery her first shot of Genotropil. I had it in my head beforehand, that Jake would be giving the first shot, but I ended up doing it myself. Avery, of course, cried as soon as she saw Nurse Watson who was wearing bright orange scrubs! She was very sweet, and Avery stopped the crying and went back to watching The Fresh Beats in no time. After the demonstration, Avery knew something was up when we all began walking towards her, lol! Daddy held her, and I quickly injected the medication. She cried briefly, mostly like her feelings were hurt, but was much better after getting her Dora bandaid and bottle sucker. Yes, I gave her one of those nasty bottle shaped suckers with the powder candy inside! She can't get to the powder stuff, and the girl loves a bottle, so I figured it was the least I could do after sticking her! She seemed to like putting her monkey sticker on the little chart I made, and since it was her first time, we gave her a little happy- an etch-a-sketch- to play with.Being the polite little Southern Belle that she is, Avery told Nurse Watson "bye bye" and blew her kisses. She did it so much in fact, that Nurse Watson knew her time was up and headed out the door, lol. I can see now how this will become routine, and feel much better about doing this daily. I'm sure some days will be easier than others, but it's the same with anything, right? We will give her injections 6 days a week, and have decided to do so before her bath each evening. So shot 1 at age 2 is over, now we'll go on until the approximate age of 16! I'm so proud of my little munchkin- she's so tough! I'm even a little proud of myself! I've always turned away when giving blood or getting shots, so to actually give one to my own child, that is something! While Avery may not understand right now, I think she will be thankful she was able to get these injections to reach a more average height. She gave me sugar afterwards and then a high five, so my fear of her being upset with me is gone! Thanks for all of the prayers as always! ♥

About the GH...

We begin Avery's Genotropil on July 23rd. Phizer (through their PhizerBridge program) is sending a nurse to get us started. I actually feel a little sorry for her, because she is driving from Memphis! We received the medication via FedEx this week, and have all the needed supplies, so I guess we're ready! Avery is expected (according to a TS growth chart) to reach 5'2" with the daily hormone injections. The needle is very tiny, and hopefully the side effects will be light. Everyone I've spoken with tells me that it becomes routine- no big deal. I'm expecting that to be the case, however, I think it will take mommy a bit longer than Avery to get used to it, lol! I made her a sticker chart (Thanks to Casey Gordon), so we can praise her and let her put stickers on it after each shot. I've also decided to get her little prizes for the first week or two, so she can go in her prize box afterwards (Thanks to Christine Joyce!). We will go in for a check-up with Endocrinology in a few months to monitor everything.

Avery's July Cardiology App.

We got up early this morning for Avery's cardiology appointment. My little girl has it all figured out, lol, she made a whimper when we hit Woodrow Wilson- she knew where we were going! Thankfully, she is doing much better with her appointments. She used to scream bloody murder upon entering the door of any office just to approach the desk. Now, she may whine a little, but really does well unless someone is touching her. She even walked up to the scale this morning and stood on it at first! One of the echo-techs, Joan, came in to blow bubbles and play music on her phone for Avery during her EKG, which was very sweet. Avery stopped screaming for a brief second, but she's not going to stop until it's done- hard-headed like her mommy! Thankfully, she tells everyone "bye-bye", waves and blows kisses, so they can't not love her, lol! We then went on the get her echo done, and ended up, as usual, holding her down. In the end, it's over a lot quicker that way. Dr. Ebeid is happy with the way everything looks which is a relief. Jake and I both had some anxiety going in to the appointment. Everything has been so normal for a good while now, sometimes, we tend to get nervous because things have gone so smoothly! Avery's pulmonary cadavor valve is still leaking (it actually has been since they did the surgery) which is fairly normal, and it is not significant enough to worry about right now. Like I've said before, we're hoping Avery weighs enough by the time she needs that valve replaced to have Dr. E and Dr. Salazar team up to replace it in the cath lab- no OPEN heart would be a beautiful thing! Her aortic valve which used to be her pulmonary valve, is still working perfectly- thank you Dr. Bacha!! Avery's coarctation that was repaired in her first surgery, and then ballooned later, is still ok, but will need to be ballooned again down the road. Basically, things haven't changed, and she is still on the right path- thank you Lord! Dr. E had previously mentioned taking her off of her meds, but isn't going to yet. That isn't really an issue for us, because Avery is so conditioned, it's not a problem. We scheduled a cardiac MR for December to get a more accurate view of things. The following is information from a UMMC article about the MR...

"Compared to echocardiograms, the imaging produced by a cardiac magnetic resonance (MR) exam provides excellent visualization of the entire heart and surrounding structures. It is an excellent exam to assess for suspected coronary artery anomalies in children. The University of Mississippi Medical Center is believed to be one of 31 places in the world that offers MR coronary artery angiograms."

As you can see, we are very lucky to have access to this machine! I think it will give us a better 'piece of mind' to see exactly what is going on with Avery's heart too. She will have general anesthesia for the MR, so we scheduled an anestesia appointment prior. She will then see Dr. Ebeid in January to discuss the MR and have her normal check-up. I'm so proud of my sweet little munchkin, and so very thankful for Batson's cardiology department!

Next up, Avery has her VCUG and kidney check-up with Dr. Harmon. We are still hoping and praying that her kidney reflux has cleared up, so there will be no procedure. We'd also like to get her off of her daily, prophylactic antibiotic she has taken since birth. Thankfully, Avery hasn't had any infections, and it had gotten better at our last appointment. Prayers that it has resolved itself by August!

Cousin Bonding

We went to Vicksburg to spend the night since Jener came in for a few weeks. It warmed my heart to see the kids playing, and hear all the madness they brought to GG and Papaw's house! Jener was so excited to be around Cooper and Avery, and kept them completely entertained! They adore him, and I think the feeling is mutual! The kids were absolutely wild by the end of the night. Avery and Cooper decided to invade the kitchen cabinets, Cooper got in a toybox that was too small for him and ended up in nothing but a diaper!! They are hysterical! We met Mitch, Becca, and Cooper for lunch at Billy's the next day- yummy! Jener pushed Avery's stroller continuously at the outlet mall so she wouldn't fuss to get out- I told him I needed him around more often!! I love that kid...he was just born with a sweet heart! I remember holding him as a newborn- mom would bring him to my room early in the morning when Jen would drop him off, and he'd go back to sleep with me. As a baby and young child, Jener always rubbed and scratched your back with affection, and gave the best hugs. He's still just as sweet, just a little more hyper, haha! I'm so glad all of GG's grands got to play this weekend- it was great!