Avery Update- May 2011

This is an update from our CaringBridge journal...

Avery's 2nd birthday is just around the corner- only 2 weeks away!! She came down with a cold recently, which took a while to get rid of, and caused her ears to drain quite a bit. Since the cold, her eating has become more of a challenge. Her appetite seems to be coming back, but she is even more hard-headed than before about what she will and won't eat. She also will not eat the things she used to eat on a daily basis. While challenging, I understand that it's just a normal phase, and will pass eventually. In the meantime, PediaSure and vitamins will help us out.

We attended Avery's 6 month endocrinology appointment recently, and were surprised that Avery weighed 22 pounds at 23 months! I thought we'd never see the 20 pound mark! Her doctor seemed happy with her, and decided we'd put off growth hormones until age 3 due to her emotional state. Avery has a very difficult time at any medical appointment. Jake and I are very friendly, and encourage Avery that everything is ok, especially in routine appointments. It doesn't matter what we do, however, because Avery cries through the entire visit, and often says, "bye-bye" and blows the occasional kiss wanting to leave. I thought she'd finally calm down in appointments where they don't do anything to her, but that is not the case. It makes it stressful, and difficult to converse with our physicians. I tell them one day she will appreciate and love them the way we do! I guess her shot at her 2 year appointment will be fun! Who am I kidding? The shot appointments never are any way! We did have some confusion with her endocrinologist and are switching to a new doctor in the same clinic. It looks like we may actually begin growth hormone therapy (Genotropin) as soon as July after turning 2. After stressing over the daily shots and the possible side effects, I found many people on the TS Society FB page that have taken, or have children who have/are taking them. Avery's pediatrician also said she hasn't had anyone have problems with them, and that she feels with all the other things Avery will have to worry about, her height may give her an extra boost of self confidence. What made me feel better than anything, is the several girls with TS who took them as a child that stated they were thankful their parents gave them the GH. I'm hoping it will become part of our nightly routine fairly easily.

We go in to see her opthalmologist this week for our annual check-up, but we don't expect to have any issues there. Avery seems to have great vision, and we haven't noticed any crossing of the eyes, or anything out of the ordinary with them. We will visit our cardiologist this summer as well. He has said we will ween Avery from her meds (Digoxin and Lasix) in the near future, so we are looking forward to that for certain! I'm always thankful for those appointments because we get to see her heart during the echocardiogram, and it gives us peace of mind in knowing everything is still working beautifully. Other than those appointments, we will see our urologist in the fall, and are praying for no reflux! I can't wait for Avery to be off of her daily (prophylactic) antibiotic.

As far as the everyday Avery, she absolutely loves being outside (and cries when we bring her in- more like has a throw-down). Her favorite shows are Yo Gabba Gabba, The Fresh Beat Band, and Blue's Clues.She is picking up new words all the time, and comprehends extremely well. She says words like...Please, Thank you, Two, Bee, Yeah, Juice, Fish, Hey...at least some variation of the words. Avery is very shy, and will cry when new people come around lots of times. On the other hand, she is Miss Congeniality at places like the grocery store and the ball field. We've found if she is outside, she is more apt to not worrying about who is around her. She still loves her Ko-Ko koala and her dolls. She plays with her kitchen and car a lot, and has begun a bit of pretend play.

She wants her way, and knows how to throw a good fit too. She is definitely a drama queen, but is also a complete sweetheart. Avery is very affectionate, so we love that! She gets along well with other kids, and is in complete awe of big kids. I look at her daily, and can't believe she is turning into a big girl. We have potty training ahead- eek! We have begun introducing the potty, but she is totally not ready at this point. I feel like it may take her a little more time physically and mentally, but that is way ok with us. Avery will be attending a daycare facility for the first time in August. The wonderful lady who kept her in her home has decided to retire. While I worried about it at first, I think this will actually be really good for Avery. I think her eating habits may improve, and she will learn a great deal. We found a nice place right between our house and my school. I felt at ease when I visited, and liked the way they did things. I know Avery will REALLY like the playground! Other than begin exposed to more germs/illness, I think this will be the right change for her.

Burden or Blessing?

My dad got a new phone recently, and when he was tranferring his information, he came across these pics from when Avery was born. The first is of me kissing her head before her first heart surgery at one week old. The second one was taken in the PICU transition room. The next is of me feeding her the first bottle I'd ever fed her. The last is of her sweet little face, with her IV covered up with a newborn mitten. Avery will be 2 soon- oh how far she has come, and oh how faithful God has been!



I was sitting and thinking today about how some serious burdens are really blessings in disguise. Laura Story's song "Blessings" probably got the ball rolling in my brain for that one, but seriously, have you ever thought about it? When my doctor found the cystic hygroma covering Avery's body, I was completely devastated. It was terrible at the time. Now, looking back, I see that it was truly a blessing in disguise. If it weren't for the hygroma, Avery's heart may not have been screened directly after birth for CHD. We could've gotten home with her and found out when it was too late. If it weren't for the hygroma, Avery's Turner Syndrome may not have been diagnosed until a later time. We wouldn't have been aware of all her medical needs or the preventative measures that needed to be taken. It's amazing that something so awful really richly blessed us in the end. More than anything, it helped me to understand what an unbelievable miracle it is that my little girl is running, jumping, laughing and playing- she's alive and well. I don't think I would realize just how crazy it is that she is here if it weren't for the hygroma's burden and the obstacle she had to overcome to get here. Just something to think about the next time you're faced with something seemingly horrific.

Cause what if Your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights
Are what it takes to know You’re near
And what if trials of this life are Your mercies in disguise

This too shall pass??

I worry so much about Avery and her eating. I understand that toddlers can be finicky eaters, but then I stress about the development of eating habits. Avery has always had issues with the texture of foods, so I understand why she won't touch fresh fruits and things like that. I've never been very concerned about that because she's always eaten dried fruit (raisins, craisins, apple chips) and drinks 100% fruit juice. Of course, vegetables have always been a headache, but she used to eat sweet potato fries, lima beans and corn at least. Now, she may eat a sweet potato fry or 2, but that's about it. I had the bright idea to blend smoothies, but she wasn't having it! Another problem, is that Avery will no longer eat apple sauce and yogurt which was a daily part of her food regimen. I thought she might take to the tubes of apple sauce and yogurt that she could squeeze out...not so much. She also used to eat different types of meat- she'd pick that first from her plate. Now, she won't touch it. She seemed to really love eating deli turkey (but she had to see me take it from the container, so she knew what it was), and that is over now too.

We sit down at the table for dinner every night as a routine, but lately, she hardly eats anything. Avery plays with her food, then picks up her plate and hands it to us, or pushes it away! It's "The Battle of the Hard-Heads," and I can't believe I'm saying this, but I think she would win over me!! I've even tried getting her to watch and "help" me prepare her food. I've used the cookie cutters to make shapes for sandwiches. She likes that part, but don't try to give her a bite! It's not like I'm asking her to eat things that Jake and I don't eat. We are eating right along with her- she doesn't care. She will eat granola bars, Cheez-its, baked chips, and any other junk food containing chocolate. Oh, and she does love fried catfish and fries from the Frisco Deli- doesn't that sound healthy? lol. She won't drink white milk any more, so we put a little chocolate syrup in that, and she's stopped eating raisins unless they are yogurt-covered. We started giving her chocolate PediaSure again in place of her morning milk for the calories. She also gets a half of a Flintstone vitamin daily.

I'm really hoping her appetite picks up, and she does better soon. One thing is for certain, I've got a a hard-headed, carb-snacker on my hands!! The question is, how do I handle it without losing my mind and creating terrible eating habits for my child??

ROYAL TAILOR - HOLD ME TOGETHER

He definitely holds me together- I can relate.

A few pics...

Mother's Day 2011





Avery and Mommee

May is Barth Syndrome Awareness Month!

Have you ever heard of Barth Syndrome? I never had, until I met Kristi Pena. Kristi a beautiful person who is mother to Christopher (you can read more about this family on the CHH blog). Christopher has Barth Syndrome, and by medical standards, should not be alive and well today. Please check out the Cross Healed Hearts blog posts or visit www.barthsyndrome.org for more information today. Knowledge saves lives! Be aware of this little known syndrome!

Appointment Update

Avery had her Endocrinology appointment today. Dr. Moll decided to wait on the GH injections until she turns 3. He said that he doesn't feel she is emotionally ready for them, but he can't hold off anymore than one more year. Could it be the screaming and crying upon even entering the clinic that pointed him to that decision??? Poor baby. While we are used to it, I don't think I will ever not tear up while holding her down in the Dr.'s office. She just screams and fights tooth and nail! I love the hysterical way she blows kisses and says "a-bye-bye" while crying! That means "I'm ready to go now, and would really like it if you'd leave me alone!" She is a mess, I tell you! Any way, we are waiting for the bloodwork to come back- they checked her thyroid again. I don't think there will be a problem, so not worrying about it! We also bought her some Flintstone vitamins at Dr.'s request, and began giving her 1/2 a vitamin a day this afternoon. My little one is doing great! She is so smart, funny, and sweet with a little mean streak to even her out, lol! I can't believe she will be 2
in June!!! All I can say is I see a Yo Gabba party in her near future!!

Happy Easter 2011

Easter has come and gone again this year, but it was such a wonderful weekend. Of course, Good Friday was filled with baseball- MC played their usual double-header. On Saturday, we visited Grammy and Papaw's house in Braxton for lunch and Avery's first egg hunt. She did a great job, after practicing at home with Mommy and Daddy! Once she found an open egg though, she was so fixated on the candy inside, that she wasn't too worried about more eggs! I know she felt like a big girl running around outside with her cousin, Kali, along with Gaines, Camden, and Kendall.







We came home to make a few things for our Easter lunch in Vicksburg- carrot cake "whoopie" pies and deviled eggs. Then we sat down to dye eggs for the first time. A few got cracked, but Avery had fun tossing them in the dye!







On Easter Sunday, we attended the sunrise service at our church which began at 7 A.M. It was such a cool and calm morning for an outdoor service- a perfect way to start off Resurrection Sunday! Avery looked beautiful (as always) in her baby blue dress- I love the way her eyes shine when she wears blue! We got home to see what Peter Rabbit had left for us. He even ate the carrots Avery left for him- she tested one out to make sure they were ok too.




Afterwards, we traveled to Vicksburg for lunch and an egg hunt with Cooper. Avery was REALLY into hunting eggs that time- the girl was on a mission! When I looked up and saw her holding an egg in each hand, then reaching down and picking up a third without dropping one- I knew she had it in the bag (or basket should I say)! She did have to use my old basket, because I left her new one at home!! The basket became so full that she almost couldn't carry it on her own without spilling the eggs!! Cooper will be more competition next year when he is walking, so I guess we'll have to practice some more before that, lol!





Easter was so much fun this year! More importantly, it reminded me of how much the God I serve loves me, and gives me an unending hope to cling to in knowing He's alive and well!