I love how these two love each other! I once worried that being a boy and girl with a 3 year age difference would keep them from playing with each other, etc. It hasn't! They really enjoy each other, and it is such a blessing to my heart.
And so it begins....posts, posts, and more posts to spread awareness.
Wear Red Day!
Avery has been losing teeth left and right this month! I believe she's lost 3 total, and the top right front tooth is also about to go! She waits until they get pretty loose, and then, she's been pulling them herself! She pulled two in the same day- one in a drive-thru in the car and another as she was getting into bed that night!
Baseball season is in full swing. Bryce and Avery love going to Daddy's games, but being able to play on the field after the game is the most fun for them.
Avery's cardiology appointment was actually at the end of January. She also had some blood work and an Endocrinology appointment that week. Dr. Ebeid feels she may be tiring more due to her heart working so hard. It has grown, of course, so her cadaver valve isn't as sufficient as it once was. He feels she will need intervention in 6-12 months, but the good news is, it may not be open heart surgery! Dr. Ebeid thinks he can take her into the catheterization lab and insert a small valve more non-invasively. This would be so much better for her, and the recovery time is almost nothing in comparison. He felt a year or so ago that it wouldn't be possible to do this due to Avery's small size. I guess that shows how many medical advancements are made in short periods of time. This is our prayer! Avery returns to see him in July. On another note, Avery's blood work came back showing Celiac's Disease. This is sent us to a new doctor, Dr. Nowicki, who is a GI. We also returned to her allergist, Dr. Rodriguez.
Dr. Rodriguez needed lots of blood to test, so unfortunately, Avery had to give blood two days in a row. She wasn't very happy about that, and neither was I. The blood work was negative for any allergies still, and all of Avery's "IG" something or others in her blood were fine. A second test did come back Celiac's Disease too, and her IGA deficiency will always be there, but there is no need for intervention due to that at this time. We will go back to see Dr. Rod in May.
Avery and her Kona Ice at PLE
At school, we had another Wear Red Day, and Avery was very excited about her Valentine's Party. She and Bryce both took their teachers a flower, Avery and I put together her Valentine Hot Air Balloon, and I made some rice krispy treats for Avery's class. Bryce had to come to school with me for a few minutes until Hinds opened that day, and Mrs. Peggy got to give both he and Avery her sweet little gift she'd gotten them. I got the opportunity to go to Avery's class and do a fun experiment of how the heart works, and they really enjoyed that!
As a follow-up to an article during Heart Month 2010, the Vicksburg Post did a new article on Avery. While there were several misnomers, I was still proud to share more with others about TS and CHD and to reveal just how far this little girl has come in 6 years.
Pearl has always been such a generous community. We helped Katie Puckett by collecting play-dough, and the students and faculty brought over 500 containers for Batson. On top of that, Mrs. Jackson allowed us to use the cafeteria to put the bags together. Caroline and Avery got to take the bags to Batson and even passed a few out to patients. They also caught up with some sweet friends! It was really cool to discuss why we did that with Avery this year. She is getting big enough to understand what it is like to help others and brighten their day!
We visited Dr. Nowicki, and while we have to do a biopsy to verify the Celiac's, he feels certain she does have it. He encouraged her to enjoy gluten while she can, so that is the plan! She will be having the biopsy on May 25th.
Avery began running fever while we were at GiGi's. Once it came down, she seemed fine. I figured it was her ears. The following day, we visited her ENT, Dr. Carron. Unfortunately, Avery still has thick junk in her left ear. The right is okay because that tube is still intact. We did a hearing test, and she is unable to hear much from that ear. We scheduled her tubes to be inserted again on April 7. Dr. Rod had ordered an X-Ray to check her adenoids earlier because medications and such really don't do much for her. Since the allergies were negative, we checked the head and neck area too. It was compromised, but the Radiologist did say her adenoids and tonsils were both enlarged. It is common practice to remove the adenoids with the 3rd set of tubes any way, so we got away without doing a scope to check them at the appointment. She will have them taken out as the tubes are going in. Also, Dr. Harbarger will be pinning her ears back while she is under. Avery is beautiful, and I went back and forth about doing this. However, there is a possibility it could help her self esteem as she gets older, and at this age, she won't even know the difference. It is a simple thing to do according to the dr. and will add about an hour on to the surgery.
After the appointment, Avery heard me mention "surgery" on the phone and became very upset when I was honest with her about having these things done. (I didn't really say anything about the ears, but she's had tubes and remembers it). She remembered getting sick as the anesthesia was wearing off, and she did not want to do that again! I decided since we had the afternoon to ourselves, and she realized the ears were the culprit of the fever, that I would take her to lunch at Chick-fil-a. Chicken nuggets, lemonade, and ice cream seemed to perk her up!
Bryce-Man got a goose egg due to falling on G's deck...
We were so excited to be able to attend the Rebelthon this year! We'd sent in a video to be played there before, but this was our first visit. It was great too because Caroline and Sydney were also there with their families, and the hospital put us up at the same hotel. Both of my children had the best time! I laughed until I almost cried- my cheeks hurt! They got on stage and the crowd went wild! It was so heart warming to see college kids cheering on, playing with and dancing with my kids! They honestly felt like super stars!
The following day, we visited the Square and had lunch at Ajax's. We also stopped by the Caramel Factory in Batesville, so I could introduce GiGi to that fabulous caramel cake! This ended up being a GREAT weekend!
The month of February always comes with many emotions. I tend to keep busy with things, but all the while, I remember. I remember the first moment I saw Avery with her bright red hair after she was born, I remember the moment they carried her away from me to take her to Batson, I remember the moment she came out of her first surgery, and I wanted so badly to hold her, but I couldn't. I remember the moment we first got her home when she was almost one month old, and I crashed in the recliner with her. I remember the moment that I knew we had to get to New York. I remember the moment when I handed her over to the OR knowing what they were about to do to her. I remember the moment we finally saw Dr. Bacha walk into the waiting room after a 3-4 hour surgery turned into more than 6 hours (with no word from anyone). I remember the moment when I walked into a PICU room to see my tiny baby's heart beating through her open chest. And those moments...they were just a few that I'll share. I guess getting news of all the things Avery has coming her way, made this Mommy worry a little more than I should. I know that mostly they are "small" things in comparison to what she's already been through. I think that mostly it's that interruption of normalcy that tends to come when she has her big check-ups and we don't hear, "Everything is perfectly fine." At the same time, I am able to feel the reassurance that can only come from above. What would I do or where would I be without that? It brings me to one of my favorite verses that just happened to be one shared at church recently....
Let us hold unswervingly to the hope we profess, for he who promised is faithful. Hebrews 10:23
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