Avery Update, July 2012

We started out our week with Avery's 6 month cardiology appointment, and everything is still in working order. Dr. Bacha's handiwork with her newer aortic valve (which is actually her pulmonary valve that he moved there) is still functioning beautifully according to Dr. Ebeid. Of course, the pulmonary side where he put the larger cadaver valve is still leaking; however, Dr. Ebeid (and her cardiologist from NYC) told us this is normal and shouldn't be an issue. As long as her aortic valve continues to support everything, Avery is in good shape! Avery's coarctation area is still open enough, so there is no need for any ballooning at this point in the cath. lab. The only new thing he noticed (and these are complete layman's terms) is that there is a bright spot or area in her ventricle. Dr. Ebeid said he is not concerned because it is so small. He said he sees it a lot in patients whose hearts were really sick at some point and it may be there because Avery was in such poor condition for a period of time. He said he would only be worried if it were a larger area of brightness, so it shouldn't be an issue. While Avery did her normal crying and fighting, she actually toned it down a little bit during her echo. Mrs. Joan was happy with her any way! She showed Mrs. Joan a few of her dance moves and gave her a hug, so I'd call that progress! Poor Dr. Ebeid, she still doesn't want much to do with him, but I still tell him she loves him and doesn't know it yet! He did tell us that apparently the Ross procedure that Dr. Bacha performed on Avery hasn't been done very often on children her age, etc. due to the risk involved, and his team called recently to follow up for documentation on Avery's progress since surgery. Dr. Ebeid feels that is why Dr. Jonas was so hesitant and refused her for surgery. I thank God every day that Dr. Bacha accepted her! While he said it was extremely difficult, he did an amazing job and saved our baby's life. He should be on the new television show, New York Med, some time soon. I've seen him on the previews and the intro, so that is exciting! He was on Boston Med, which didn't make it far on T.V., not too long after Avery's surgery. Dr. Ebeid  said we need to have a Mississippi Med! I have to say I agree. They really do some amazing things (and we are very lucky to have some incredible physicians/surgeons) at UMC, and you know it would be "entertaining" being in the South!

On Tuesday, Avery was supposed to have her endocrinology appointment. I say "supposed to" because we didn't make the appointment. Avery worked herself up as we drove by the hospital on our way to the clinic, and she ended up throwing up all over everything. Normally, I would have an extra set of clothes, etc. in the car; however, with my pregnancy brain, I didn't think to bring anything! Needless to say, we rescheduled for August. I am anxious to see how she is progressing with her hormone treatment and hope to hear of only positive effects.

 

Avery's dilated eyes

 

Daddy and Avery 

 

Foofa hiding in the plant

                                               

Avery's train 

Thursday was our yearly eye appointment with Dr. Mungan. Avery did great in the waiting rooms and was really in a good mood until we went in the exam room. I have no idea how he saw in her eyes as she screamed, kicked, and clinched them shut, but he said he could see and there are no problems! Jake held her in the chair (arms and legs because apparently the hgh is making her stronger than me these days, lol) and I did my best to hold her head straight while Dr. Mungan tried to pull her eye lids open and look into them! We were a site to see I am sure! Any way, the great news is there isn't an issue where her eyes are concerned, so we don't go back again for one year! Avery spent time in the waiting room playing with Foofa and Daddy, and she insisted on moving all of the chairs into a train formation!

Avery has her three year check-up with her pediatrician, Dr. Van Norman, the first week of August, and will follow-up with her Endocrinologist, ENT doctor, and Urologist in August and September. Avery will also be seeing a dentist for her first check-up next week (pray he can actually see in her mouth, ha ha!). Hopefully this week set the tone for all positive results! Avery is growing and changing so much lately- she's turning into a little girl! We've really had a time with her defiance and "terrible 3's" lately, but the sweet moments make it all worth it, ha ha! Some days Jake looks at me jokingly and says, "She hates you today!" That may sound harsh, but I know he's only kidding (and it really appears that she does in moments). Avery is doing really well with potty training lately (I wondered if she'd ever get to this point in the beginning)! I'm proud of her! Other than that, Avery is still as active as she's always been! She will be starting a new "school" in about 2 weeks, and I think she is really going to like it. I'm getting all of her supplies ready now which is a weird feeling since she's only 3! So much is going on around me all the time, but trust and prayers to God for calamity, as well as looking at my precious miracle every day seems to put everything into perspective.

But those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint. 

Isaiah 40:31

Here are some random pics from this summer...

My silly girl...she's supposed to be ready for bed! 

My future's so bright, I gotta wear shades! 

Play sleeping with Brobee, Foofa, and Daddy

A father-daughter golf lesson- not sure who is teaching whom! 

Avery and Alexa during Nicole's visit home from Dallas

Thanks to Blair E. Batson and The Sunshine Kids organization, Avery attended the circus for the very first time. She started off great and even danced during the pre-show. Once the clown came out, however, she screamed and ran away! She was afraid some on and off, but for the most part, she really enjoyed the show. I think it was a great experience for her. Avery's favorite part was the watching the trapeze artists! 

I went through some of Avery's clothes the other day, and I found her premie onesies. I couldn't believe she was ever that small! While I was sad that she's grown so much (to an extent), I couldn't be more pleased with the amazing little girl she has turned into. She makes every day an adventure, and God continues to remind us just how lucky we truly are to have Avery here with us. Through this entire experience, I've learned so much about life and what it is really about. 

And yes, she does actually sleep sometimes! ♥

By the way, if you haven't seen the youtube video of Avery dancing as a "Dance Floor Super-hero" check it out on my youtube channel on the sidebar. It will give you a good laugh today! 

10 Weeks and Counting!

I admit I've been a little anxious about my appointment today in the weeks leading up to it. I've mostly felt like everything will be okay, but after going through what we did the last time, there is a little feeling of fear that creeps in from time to time. As far as today is concerned, Baby B looks perfect! I saw him or her (which is it? it's making me crazy!) moving all around and waving its sweet hands. Its heart rate was 167 and sounded like music to my ears! There was no thickening in the neck area either. Jan had looked over Avery's scans from the same point before we came in, and she said she could see the thickening already on hers. I am so happy we ran into her at our last appointment, and she told us we could request her! We brought Avery (which is always a challenge in a doctor's office) to see her today. She gave Avery a picture of her little baby brother or sister (?), and Avery gave her a hug. I could tell she is still in amazement that Avery is here and doing so well. Jan was just as excited as we were to see this baby is right on schedule and looking good. I haven't gained any weight since my last appointment (which I am not upset about, lol), and I have been feeling much better the past several days. Everything has been a little different as far as the normal pregnancy stuff goes. I have felt much worse than I did with Avery, so I am glad to be seeing the end of my first trimester in the next few weeks! I go back July 31st for a check-up, and should have my next sonogram to determine the sex (yeah!) at the end of August. I told Dr. Kimmel that I would feel much for relief after that sonogram if everything still looks perfect! That was the big appointment where we found Avery's cystic hygroma and the beginnings of all her medical problems. No matter what, I know God is in control and He has us in His hands. He will never give me anything that He won't help me handle. I can't stop praising Him for that! 

Avery Loo-Hoo has several appointments coming up next week! We will see Dr. E for cardio on Monday, Dr. Dixit for endo on Tuesday, and Dr. Mungan for eyes on Friday. I am sure she will end the week with a treat because it's going to be a rough one for her! They are just check-ups, but even entering the hospital doors is still a feat for her. We are hoping for her heart to be working beautifully (and may be losing our last medication if we are lucky), for positive results from her growth hormone treatment and stable thyroid levels, and as always, a clear eye exam! I will post an update after we know all the results! ♥