Blog Update!

I am terrible at keeping my blog up to date. I apologize! I have decided to make this a family blog instead of just focusing on Caelyn's health issues. That way baby Bowen doesn't feel left out. ;P
Bowen was born August 20, 2012! He is the perfect addition to our little family. He is big and chunky, and absolutely healthy! What a blessing!

Caelyn is absolutely loving her little brother. She has never shown any signs of jealousy, which is something I was worried about! She loves to kiss Bowen and pat his back to help me burp him. :)
Right before Bowen was born, Caelyn had another heart check-up in Dallas. We made the 4 hour drive (while I was 36 weeks pregnant!) to her cardiologist for an ECHO and EKG. We didn't get great news. The pulmonary valve has severe regurgitation, causing the right side of her heart to enlarge. Also, her left pulmonary artery is either kinked or not growing (the one that had been smaller at her last few checkups) so Dr. Kao wanted us to have a heart catheter done to see what is wrong with it, and possibly balloon or stent it open. We scheduled it for November 12, but Caelyn was very sick with a cold and an ear infection that she had for over two months, so we had to cancel it. We finally tried a different antibiotic that healed her ear and her cold, so we rescheduled the heart catheter for November 26. I will update when we find out what's going on. Caelyn will definitely need another open heart surgery in the future to replace the valve. We are definitely not looking forward to that.
At the end of October, we flew to Columbus, Ohio to have Caelyn evaluated at the 22q Clinic at Nationwide Children's Hospital. We had a full day of appointments on the 26th. We saw a genetics doctor, an ENT, a plastic surgeon (for her submucus cleft palate), and a speech scientist. The plastic surgeon said that Caelyn is a good candidate for not needing her cleft surgically repaired, which is an awesome thing to hear! Her speech has absolutely no nasal-y sound right now, and hopefully it stays that way. The speech doctor told us Caelyn is only mildly delayed. We are very happy with that news! While we were in Ohio, we met many other 22q families and they were all so sweet! We also drove to Cleveland to visit some of Darren's extended family. They had never met Caelyn, Bowen, and I before! We had a great trip, but we were very glad to be back home! A long trip away from home is not fun for two little babies.

                     Caelyn was an LSU cheerleader for Halloween!

                    Being silly with Mommy after her bath. :)
A few weeks ago we bought a new car. Well, it's a used one but new to us! It's a 2011 Chevrolet Traverse and we love it! Our Impala was a little small for two kids, so we wanted something bigger. We are definitely glad we went a little bigger. It's so much easier to haul two kids and a stroller, plus groceries or whatever else around. It will also make our trips to Dallas much easier.
We are very excited about the holidays coming up! We have no plans for Thanksgiving (as of right now), but hopefully we will get to enjoy some turkey somewhere! Christmas with two little ones is going to be a blast this year. I can't wait to start Christmas shopping for my little boogers! We have no idea what we are going to get them, but we've started thinking about it. We even went to Toys R Us recently to get a few ideas. Maybe this weekend we will start. :)
Well, I'm pretty sure my next update will be after Caelyn's heart catheter, so I will post again soon. Thanks for reading! Love, Ashlee, Darren, Caelyn and baby Bowen.

Been a long time!

Wow. Has it really been 7 months since I last posted? So much has happened. I'm really going to try to keep up with posting more often! I will try to recap everything that's happened since my last post...


My last post mentioned the geneticist finding a knot in Caelyn's throat. We went to an ENT a few days after and he diagnosed Caelyn with a submucous cleft palate. He wanted the surgery done as soon as possible (before she started talking). So we scheduled it for December 9. But during his exam, Caelyn was crying as he was shoving the tongue depressor down her throat, and she threw up all over me/him/the floor. He actually told her "oh shutup, it's not that bad".............yeah.........so I cancelled that surgery! I didn't want that man touching my child again! So I found a new doctor who was highly recommended to me by a few people. We went and saw him in the middle of December, and he confirmed the submucous cleft palate. He wanted to do the surgery soon, but he said Caelyn needed to be off the bottle and pacifier before surgery. So we scheduled the surgery for around the end of February.
At the cardiologist check up in November, Dr. Kao told us that Caelyn's pulmonary valve was still leaking. She didn't seem too concerned, but told us she wanted to recheck in 4-6 months. We scheduled a check up for the beginning of April.
Caelyn's first Christmas was great! She loved the Christmas tree and Christmas music. :)  She got lots of great gifts from the family.
On January 1, 2012, I took a home pregnancy test...it was positive. We hadn't been trying for another baby just yet, but I guess God had other plans. :)  Of course, I was worried sick that something would be wrong with the baby. My OB sent me to a high risk doctor to have regular check ups on the baby. At 12 weeks, we had our first ultrasound with the high risk doctor. It was an NT test (to check the thickness of the back of baby's neck; thicker necks can indicate heart, chromosome, and other abnormalities). Our little peanut looked perfect! The doctor also told us it looked like a little boy. :)  At 17 weeks, I had my anatomy scan. Baby is definitely all boy! All of his organs looked perfect, and from what they could see of the heart, it looked great too. At 23 weeks, we had an echocardiogram of the baby's heart, and the doctor said it couldn't look more beautiful. We chose the name Bowen Alexander for our little man. I am now almost 29 weeks pregnant, and so far Bowen is healthy and VERY active! We are excited to meet our little guy in August!
After learning of our newest addition, we thought it would be best to finally start looking into buying a house. On February 27 (yes, my birthday :) we found a beautiful, updated home in Bossier City. We put in an offer and was accepted! We closed on April 16. So far, we love our new home!
We ended up rescheduling Caelyn's palate surgery, because she just wouldn't wean off the bottle. We were successful in taking away her pacifier, but she just would not give up the bottle. So we scheduled it for April. 
At Caelyn's cardiology check up in April, Dr. Kao told us the pulmonary valve leak was still there and that it was now causing the right side of her heart to enlarge. We were shocked. This sounded terrible! She told us she wanted to keep seeing Caelyn every 4-6 months to keep a close eye on the leak, and that Caelyn would need the valve replacement sooner than we originally thought. Our next check up is August 3. I am very nervous as to what they will find and when we should expect to have the valve replaced.
On April 22, we went to 22q at the Zoo in Fort Worth, Texas. This event is where families of people affected by 22q11.2 deletion syndrome meet to give support and have a little fun. We had a great time, and it was amazing meeting other children affected by 22q. We talked to a lady about Caelyn's submucous cleft palate. We ended up deciding that we didn't want a doctor that didn't specialize in 22q to do her surgery, as children with 22q have a slightly different anatomy of the mouth. If we were to let a doctor who wasn't knowledgeable in 22q do Caelyn's palate surgery, she would most likely need it repaired again eventually. So we are going to see a 22q team in Columbus, Ohio for them to completely evaluate Caelyn and tell us what they think would be best for her. We haven't scheduled this evaluation, but we are thinking around October is when we will go. While we are there, Darren wants to visit some of his family who live near Columbus, so they can finally meet Caelyn and Bowen.
So I think that pretty much sums up everything that's been going on. I will try to start posting regularly, and I will add pictures next time. :)  Thanks for reading! Love, Ashlee, Darren, Caelyn, and baby Bowen.