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.

6 Month Follow-ups

Two Fridays ago, W and I headed up to St. Louis for two follow-up appointments with his specialists at Children's. First we saw his Hematologist and there were two big topics of discussion--Neupogen dosing and baby #2's cord blood. W's doctor received dosing information from the Severe Chronic Neutropenia International Registry for Neupogen that differed from her dosing. She's waiting on the literature/studies that based their decisions but she basically told us that we have two options when it comes to dosing W's Neupogen: 1) current dose that's given on MWF (her suggestion), or 2) smaller dose given every day of the week (SCNIR's suggestion). I found some Neupogen curves online that demonstrate the difference in dosing and how it affects ANC counts, risk of infection, and bone pain. Although the MWF dose is currently working, I can see the benefits for giving Neupogen daily. However, that's 7 pokes for W in one week, rather than 3. Any advice from other SDS-ers? 


The second topic of discussion with W's Hematologist was the various possibilities since I'm expecting baby #2. Like any genetic disorder, the likelihood of baby #2 having SDS is 25%. So, leaving a 75% chance that the baby will not be affected by SDS, we want to save the cord blood for Wade, IF he were to ever need a bone marrow/stem cell transplant and IF baby #2 has the same HLA match for Wade. Once again, a 25% chance exists that baby #2 would have the same HLA as Wade, making it a good match for W to receive the cord blood if needed. I asked the doctor about a cord blood registry that she knew of that banked cord blood privately for a sibling donor. She told me about the St. Louis Cord Blood Registry, a public bank. Although this is a public cord blood bank, they also do what is called a directed donation, meaning that the cord blood from baby #2 will be saved in our family's name only. They are no time constraints on storing the cord blood and no fees in collecting or storing the cord blood. The only time fees would come into play would be if we get the cord blood out specifically for Wade. However, if baby #2 is not an HLA match with Wade or if Wade were to not need a transplant, we can always donate the cord blood back into the "public" part of the bank to be used by anyone else who may need it.


After Hematology, we saw W's GI doctor. I had some questions regarding W's lack of weight gain  in the last six months (total gain of 6 oz in six months = not good enough). We are still waiting for a food log analysis from W's dietitian, but I can already bet that W's pancreatic enzyme dosing needs to be increased. I believe he's eating more than what the enzymes can digest, resulting in loose stools and no weight gain. His current dose is 1 capsule for solid food and 2 capsules for a bottle of Pediasure. The GI doctor also thinks that W's enzyme dose needs to be increased, but he would first like to see the food log analysis. Because I'm me, I asked the question, "What if increasing his enzymes still won't help him gain weight?" and his reply was, "Well, if that's the case after optimizing his enzyme dose, then I would refer you to endocrinology, because we would have exhausted the possibilities on the GI and metabolic side of things." So, that's still a possibility if increasing enzymes still won't help W gain weight. SDS-ers: Is this common to have an Endo specialist? What is their role with the treatment of SDS?


So, after a morning full of labs, appointments, and questions/answers, my brain is now overflowing with "what if's" and endless possibilities that I have to wait out....and I'm not a very patient person!