Giving Thanks for Good News!

I know that it has been a while since I've typed a blog post...but the saying "no news is good news" holds true for us! We have been very thankful for the good news and progress! Here is an update on both Wade and the baby girl/pregnancy.

Thankful for good news during Thanksgiving!

Wade's Update:
Since the last post in September....

• Wade has been improving in speech therapy and OT. He is making more sounds and words at his own pace. He has also strengthened his core muscles and is making great progress! 
• In October, Wade was finally weaned off the bottle for milk. Before, he would drink milk from only a bottle and now he is independently drinking from a sippy cup! 
• Wade has been gaining weight! We now only weigh him on a monthly basis. In September, Wade was 18 lbs, 0.5 oz. In October, he was 18 lbs, 13 oz, and now for November, he is 19 lbs, 5 oz!
• He was supposed to have his annual bone marrow biopsy in November, but we pushed it to February 2013 for insurance/financial reasons. 
• We also started a family cancer insurance plan with Aflac so in case one of us develops cancer the plan pays cash for various things, such as initial diagnosis, bone marrow transplants, travel, etc.
• Wade scared mommy on Monday this week with a trip to the doctor. He woke up very warm (101.3 F), with a cough, and wasn't himself. We got into the doctor's office right away and they did a CBC, blood culture, strep test, and a chest x-ray. The CBC results indicated that it must be something viral. The blood culture, strep test, and x-ray revealed nothing. We were sent home with antibiotics (just in case) and later that day, Wade was feeling much better. It must have been a one-day thing because he is back to his normal self!

He is drinking from a sippy cup now!

Big boy (23 months) enjoying his meal at McDonald's!

Baby Girl/Pregnancy:

Since the last post at 20 weeks...

• I have had ultrasounds every 4 weeks to check the growth and development of baby girl. Each ultrasound revealed normal growth and no sign of IUGR! 
• The last ultrasound at 33 weeks, she was estimated at weighing 4 lbs, 12 oz and was in the 56th percentile! That was W's birth weight at 40 weeks....so now I get to experience pregnancy with carrying an average size baby! I guess in a way I was spoiled by only having to push out a 4 lb baby, but now I can hope that the average size baby will be healthy!!
• I submitted the paperwork to the St. Louis Cord Blood Bank to reserve the baby girl's cord blood in case W may need it someday. Usually, you donate a baby's cord blood to the public bank, but since her sibling has a blood disorder, we can bank her cord blood privately for Wade if he needs it.
• The nursery is complete! Thanks to my mom, we put up the vinyl tree decoration and thanks to my husband, he hung up the wall hangings! The color scheme is light pink, dark pink, and green. The bedding is flowers/garden. See picture below!
• We have a name picked out....but it's a secret! 

Baby girl's room! Tree vinyl design is from Simply Said.

20 Weeks and Counting!

So, the half way point in my pregnancy has finally arrived! The second trimester is treating me pretty well and feeling the baby kick and move around is truly awesome! So far, the pregnancy has been great--including less morning sickness than with W! However, I'm gaining weight and showing different than before--my love handles have expanded even more and I hate it!

Yesterday, we had our 20 week ultrasound and met the Maternal Fetal Medicine doctor for high-risk pregnancies. The ultrasound was very exciting and we found out the gender--GIRL!!!! Now my mind is racing with nursery decor, bedding, names, etc! Although we'll re-still use a lot of Wade's equipment and things, I'm still excited about seeing some pink in our house! 

Since we're not doing an amniocentesis test to check for the SDS gene, the only thing the high-risk doctor can do is keep an eye out for IUGR (inter-uterine growth restriction) with this baby. We aren't sure if Wade was IUGR because of SDS, for a reason created by me, or if something went wrong with the pregnancy or development of the placenta. The measurements taken of Baby Girl in the ultrasound showed measurements right on track for 20 weeks. That was a big sigh of relief to hear that the development is normal so far. However, we'll repeat another ultrasound in 6 weeks to check development and growth again. I'm so glad that with this pregnancy, we'll be more cautious and actually do more than one ultrasound! Still praying for a healthy baby! She sure does look cute already!

Appointment Last Week

Sorry for the late post, but W had an appointment up in St. Louis last week to see his GI doctor. My mom went with me for this visit and we stayed with friends the night before. Our day started early because he had a 7:30am appointment to get an ultrasound done of his liver. His liver enzymes had been elevated and they wanted to take a look at what was going on. Poor W had to fast for this procedure and he was not that cooperative when they did the ultrasound. It didn't hurt, but my little boy hates being held down. The ultrasound tech was able to perform the ultrasound, but then had to do doppler--which meant Wade had to be quiet. So, luckily she let him take a bottle during this, otherwise he wouldn't have been quiet.

Grandma and Wade playing in the waiting room.

We finished the ultrasound before 8:00am and had a huge gap in our day because our clinic appointment with the GI doctor wasn't until 1:30pm. We originally thought of going to some thrift stores in the area to pass our time, but since the weather was amazing we went to the St. Louis Zoo. We were able to save money on the parking and the Children's Zoo because we were there so early. We enjoyed the weather, the animals, the carousel ride, the train ride, and the ice cream! However, around 12:30pm, we had to head back to the hospital for our other appointment.

Mommy and Wade having fun at the Zoo.

Back at Children's, Wade had a 6-month follow-up appointment with his GI doctor. He explained the ultrasound results from that morning to us. They found some abnormalities with his liver and some fatty deposits on his pancreas--all to be expected since he has Shwachman Diamond Syndrome. They believe that this is all caused from SDS, but to be sure, they've ordered lab work that would test for any other metabolic disorder or mitochondrial disease that may also elevate liver enzymes and cause these abnormalities. In addition to the ultrasound results, I mentioned my concern with Wade's poor weight gain in the last three weeks (he only gained 2 oz in the last 3 weeks). However, the doctor and I both believe that since he has learned to walk, W is now burning more calories and that has been playing a part in his weight gain. So, it's not an immediate concern, but we will still do weekly weight checks. Lastly, I had to confront W's doctor about his rude nurse that is super condescending to me. I explained the several events in which she is unprofessional and I requested to see a different doctor so that I wouldn't have her as a nurse. He is going to speak with the director of the GI clinic to request a change.


Before leaving Children's, we tried getting W's blood drawn that the GI doctor ordered. However, the lab techs couldn't get a good vein (go figure!). So, we'll have to try again on Thursday when we go up to visit a Geneticist. So, after an early morning ultrasound, a trip the zoo, an appointment with the GI doctor, and getting poked in each arm, we finally headed home! What an exhausting day for all of us--but the zoo was definitely worth it!