Whoa, Baby!

I’m sorry, I got too far behind in my posts!! But, Wade’s 2^nd birthday party, Christmas, and having a baby kept me a little more busy than normal. Just writing this post in and out of chasing Wade and nursing a newborn took several days to complete. Any who…here is an update on both Wade and the baby.

Wade:
Since the last post in November 2012....

• Wade had a great birthday and Christmas! He got lots of presents and had a great time staying up late at all of the get-togethers! He didn't care too much for sitting on Santa’s lap, but enjoyed the gifts he brought!

Wade with Santa.

• Wade has been kicking butt with speech therapy. I started a list of his words, signs, and word/signs combos. Currently, he says 27 words, has 21 signs, and does 13 sign/sound combos. He is definitely improving his speech but still has a long way before catching up. I’m still waiting for him to call me “mommy”. My heart will melt when he finally does!!
• He has also been getting a lot better in his core strength too, with the help of OT and a local exercise class called Romp N Stomp/Kids Bee Fit. We play all the time and any chance I can, I put him in positions that will be beneficial for his core and hip strength. And now, with him going to Romp N Stomp (and loving it!) he is able to imitate other kiddos to improve his low muscle tone. Here is a video of him doing some arm exercises in his class. He’s just a tad excited! He's the little guy on the far right.

• Wade has been gaining weight! In November, he was 19 lbs, 5 oz and now he is 20 lbs, 13 oz! He is now finally able to face forward in his car seat…at 2 years old!
•  We headed to St. Louis at the end of January for his follow up appointments and his annual bone marrow biopsy. On Jan. 31, he had a liver ultrasound, lab work, a follow up appointment with GI, and a follow up appointment with Genetics. He obviously did not like being held down for the ultrasound or getting poked for the blood draws, but he did very well! The follow up appointments went great—no concern with his progress since last visit!
• On Feb. 1, we went back to the hospital for his annual BMB to detect any changes in his marrow. Last year, his BMB experience was not a fun one, so this time we were expecting the worse. However, possibly because he was a year older and healthier, the procedure went smoothly. He was given Tylenol before being put under to hopefully lessen the pain when he awoke from the procedure. Daddy held Wade while they put in the IV and when they put him under. Daddy was a bit shaken up to experience it to say the least. The hematologist was able to poke him only once this time (as opposed to 3 times last year). The procedure went fast and they paged us to come back within 20 minutes. He wasn't up yet when we went back to him, which was good because otherwise he probably would have freaked out that we weren't there. It was almost 30 minutes later when he did finally awake, and all he wanted was to be held and to take his oxygen cannula off. No cry at all!!! I was completely amazed. As soon as he ate animal crackers and drank apple juice, we were discharged. Following his BMB, we had an appointment with his hematologist and once again, she stated no concern! Within a few hours of his BMB, Wade was back to his normal self!

Happy as can be a few hours after his BMB.





A few weeks later, the results of the BMB came back and everything was normal! All cell production was normal and no concern! Great news!!!

Baby Girl:

Since the last post in November 2012...

• I had the baby on New Year’s Eve!!! My husband and I went to the hospital for a scheduled induction and it was the easiest thing ever! I had an epidural and I was in heaven. I was so relaxed and care-free. I couldn’t feel a thing and barely noticed when my water broke. I questioned whether I would be able to push because I was so floppy and could barely move. However, when they told me to push, I pushed as hard as I could. On the third push, her head came out and on push number 4; the rest of her came out. We finally announced her name--Calli. Her cry was an amazing sound and after the measurements were taken (6 lbs, 11 oz and 21 ¾ inches), I held and nursed her. That was such an awesome and new experience since I was unable to do that with Wade.

Baby girl, Calli just born!

• During my delivery process, the nurses followed all of the directions given to collect and save the cord blood. Since Wade may need a bone marrow transplant someday and a sibling has a 25% chance of being a match, we saved her cord blood in case W may need it. Her cord blood is now privately banked at St. Louis Cord Blood Bank for our personal use. If it ends up that W does not need it or cannot use it, we will donate it.
• After returning from the nursery, the medical staff told us that Calli looked very healthy! We were so relieved to hear this news since SDS is genetic and she could possibly be affected too (25% chance). However, a genetic blood test would be the only way to know for sure if she does or doesn’t have SDS. Within hours of being born, blood was drawn and sent off for genetic testing to see if she has SDS. A few weeks later, the genetic counselor from St. Louis called me with the results of her genetic test. Calli does not have SDS and is not even a carrier of the disorder! This was AWESOME news!!
• Calli is now two and a half months old and she is growing and developing normally. She is in the 50^th percentile for height and 40^th percentile for weight. She has really great head control and dominates during tummy time. We are so blessed for such a healthy baby!

March 2013--2 months old

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.

First Steps Review

Tonight, despite the tornado warnings and storms, we were able to hold Wade's IFSP review meeting (even if most of it was in the basement). We reviewed his goals made in February and discussed his progress since the last meeting. A few things were also updated as he is growing up and some of his routines have changed. 

A few things to be proud of:

• Wade has completely closed the gap with physical therapy and he's right on target for physical development for a 20 month old. Therefore, he has been discharged from PT (we will definitely miss his therapists, but luckily we're all neighbors!). Although he should continue to work on jumping and throwing/catching/kicking ball skills, there is no need for PT anymore.
• Of the 12 goals that were set in February, Wade accomplished 9 of them within 7 months! That’s 75% accomplished and let me tell you--his mommy and daddy are so proud!!

What to keep working on:

• He will continue to receive speech therapy and occupational therapy once a week. We will also keep our nutritionist consultations for advice/weight checks.
• His speech goal is to say more sounds/words and continuing to sign for communication.
• His feeding goal is to be completely weaned off the bottle by the time the baby comes (January). He eats solid foods and drinks juice from a sippy cup just fine, but still wants the bottle while being held for comfort. I haven’t been very firm in weaning him because I know how important it is for him to consume those calories. However, it’s time for him to be off the bottle!
• His OT goal is to strengthen core muscles, shoulder girdle, and fine motor skills, including the pincer grasp. OT will also help encourage the PT skills that he should continue working on (jumping and ball skills).