Tuesday, April 28, 2009

New Accomplishments

Since Braden's appointments are really starting to lessen, we are actually forgetting to update on his progress. He is doing so well! His newest accomplishments are sitting with support, flipping from tummy to back, and discovering how to make a noisy slurping sound by sucking his bottom lip. He keeps practicing that last one, so he won't forget how to do it. Our little girls think this is especially hilarious.

Last week Braden had his monthly physical therapy session. The therapist was pleased with his progress and gave us some activities to work with him on, like encouraging exploration of toys that make sound (cause and effect, curiosity). She also wants him to build his core muscles while supported sitting and to work on going from back to tummy.

We don't know Braden's current weight, but he is sure eating a lot. His appetite has grown. He has started grabbing whoever is holding him by the hair, whiskers, neck skin, whatever!, with both hands and sucking on their face. Kind of like a slimy kiss but it really means "Feed me now!"

Tuesday, April 14, 2009

Five Months Old

Braden turned five months old last week. Amazing! Here's some of the latest . . .

Over the past weeks we have seen baby make great progress with his neck strength. Braden is gaining endurance on his tummy and holds his head up much longer now. So cute! His physical therapy starts next week and I hope the therapist sees improvement from her last observations.

Braden likes being held in a supported sitting position now, really enjoying being part of family time around the dining table. He sits and observes the chaos of mealtimes with a lot of interest. We are very entertaining for him. Braden also really likes it when his sisters do the "Banana" cheer they learned at Mega Kids Sports Camp. He is learning that if he squawks, they will do it again. Only 5 months old and bossing the older sisters around already.

Braden went to his first egg hunt and attended a church service for the first time this past holiday weekend. It was a monumental feat to get all of us to church. Darth was there already so I was outnumbered, but I conquered, thank you very much. No, we weren't on time, but that is besides the point. It was scary to take Braden to such a large social gathering. He just hasn't been out. I kept him in his carrier the majority of the time and that discouraged touching. Braden had another fever last week and more cold symptoms, so continuing to assertively protect him is beneficial. God is giving me strength in these socially awkward situations. Saying "look but don't touch" is easier to say to kids than to adults.

Because his neck is getting so strong, Braden can now be carried face out in the front pack carrier. The soft material of the Moby wrap is great for him and comfortable for me. He went through Costco on Monday loving life and looking super cute. Outings are so exciting for him because he just hasn't been out! And who doesn't love Costco?! (We lead such an exciting life.)

I continue to be very content in my current role as Braden's mommy, nurse, therapist, and teacher. Focusing on his development is so important right now. The slower pace of stepping back from too many commitments is refreshing. I am choosing to enjoy this season with little precious one because it will pass quickly and then life will get hurried and harried again. I am blessed to be able to stay home with my kids.

More updates soon. Thanks for your continued prayers for Braden and our family.

Friday, April 3, 2009

Too Much of a Good Thing!

Our in-home care nurse came today and "discharged" Braden. He is doing so well that he doesn't need close monitoring anymore. We will miss Nurse Michelle, but what great news! Braden weighed 11 lbs. 4 oz. today. We were advised that it is time to cut back the calories. Mr. Chubs gets only 24 calories now instead of 28. Yea Braden and thank you Lord!

Thursday, April 2, 2009

Pacemaker Check-up

On Sunday, March 29, we packed up four kids to head over the Cascades. It was the first family trip we have taken with all the children. It is so wonderful to have Braden doing well enough to travel some. Progress! We were able to stay with Darth's parents and have some family time with them. Darth's grandma came over too and rocked little Braden to sleep, cuddling him for over an hour. It was a sweet time for both of them.

Monday morning we packed up again and headed to Seattle for our appointments at Children's. The girls all went to the sibling playroom for crafts and Darth and I took Braden to the Cardiology appointments. He weighed in at 10 lbs. 14 oz. and measured 23 inches long--- still just a little guy, but definitely holding his own! Braden had an EKG and a pacer interrogation. Both showed good heart and pacer function. The pacemaker beats per minute setting was lowered at bit so that it simulates a more natural heart rhythm for periods of rest and sleep. Then the pacer was backed out to see what Braden's heart would do on its own. The tech lowered the unit's levels to see when the heart would kick in, if it all. Braden has a very low underlying rate, around 40 or 50. A low rate is better than no rate. We weren't discouraged by this appointment. God is still working in the life of our son. Our job is to trust Him. We just keep praying for a miracle.

Braden saw Dr. Chun to follow-up the pacer check. He said at least three times how good Braden looked. We think so too and how reassuring to hear it echoed by doctors! Dr. Chun was able to adjust the pacemaker settings to save the battery life, saying that sometimes these batteries can last up to 8 years. The pacers that adults have can last longer, more like 12. We appreciate anything that will keep our boy from more surgeries.

Because the appointments at Children's are for kids, the schedule doesn't stay on time. We had quite a wait for our doctor, so at one point, Darth and I decided to have me take Kara, Megan, and Rachel to lunch in the cafeteria while he stayed with Braden in the room. (Six people in a tiny exam room doesn't work. There is only one spinning wheeled doctor's stool and that is the room's highlight for elementary aged children! Plus, Braden was tired of waiting so he had to be bounced and paced back and forth and the adult doing the bouncing kept running into the stool rider . . . ) So we headed to the elevator to go have yummy cafeteria food---for the girls. (I was grateful for meals while Braden was hospitalized but seriously, I NEVER want to have to eat another meal there if I can help it.) Anyway, we were just about to go in to the cafeteria and we bumped in to a mom we met back when Braden was first born and hospitalized, in November. Her daughter frequents Children's with a serious medical condition and was there again for another surgery. My girls befriended and played with this little girl at the Ronald McDonald House. Every night they pray for her and ask Jesus to heal her, to help her family know He is with them. It is very precious and we have a special spot in our heart for this little girl, her mom, and family. Jesus amazes me at His timing, to have us both at THAT elevator at that exact moment for a few minutes of encouragement. Once again we see the way God works everything for good. Not everything IS good, but He takes the junk of life and shines bright spots into dark days. We continue to pray for this family. They need a miracle for their sweet girl.

Our mini-getaway continued as we left Seattle and headed north to my parents beautiful new home. I think we broke it in! It was a fun time of laughter, too much tempting food, and lots of family. Braden did great at night (Whew! Especially considering all the coffee and chocolate I had!) and loved all the attention from grandparents, aunties and uncles. We (four of the five siblings) even surprised my parents with a mini-celebration for their 40th wedding anniversary.