Wednesday, April 11, 2007

If you scroll down to the next post on the page I put some new pictures up. The top one is of the kids watching morning cartoons with Mommy in bed...this beats working in an office any day! :)

Noah is still slowly warming up to Jordan. He is really more interested in cars, trucks, playing outside - anything but that baby that just sits around and doesn't do much. Funny how that will change once she can play with him. I'm REALLY looking forward to that day. By the way...Noah turns 2 on April 23rd. Such a big boy!!! He talks non-stop and is becoming an even sweeter, more loving little person every day. What a blessing he is to our entire family!

As for Jordan:
Therapy - We've been going to physical and occupational therapy for almost one month now twice a week for an hour each time. She's still behind in her gross motor milestones but the therapists are pretty positive it's due to all of her setbacks physically and that there is nothing to worry about cognitively (she is just as social and responsive as any other baby her age). We're really holding our breath waiting for her to roll the first time and then to sit by herself (she's really close to doing both).

Reflux - Her reflux is slowly getting better. It's still a little uncomfortable for her to be on her back or sitting up (hence the delay in rolling and sitting) but she is spitting up WAY less. Her medicine is working and our goal is to have her completely off the medicine with normal spitting up by 8 months (just under two months away). We are due to go in next week to see the specialist and our occupational therapist will go with me so we can start to gear up for spoon feeding (tremendous obstacle with her palate missing).

Orthopedics - We have one more final post-op, post- cast follow up in a couple weeks. We're going to ask the doctor if she can have a brace just for sleeping. Her natural resting position for the foot that was tied to her leg is back up in that position. We're constantly stretching her foot down but it tends to pop back up. He doesn't want her to use the brace because he wants her getting used to the feeling of pressure on her foot when learning to bear weight. Pray that he will give us a brace for nights as our therapist is recommending.
PRAYER - Please pray that I find the special hand surgeon that God has for Jordan. Our insurance will provide one second opinion so we need to find a "Pediatric Hand Surgeon that specializes in congenital deformities and has experience with Amniotic Band Syndrom or Streeter's Dysplasia." We are willing to fly there if needed but really want to find the BEST doctor. The therapist is concerned about Jordan's pincer grasp with her thumb not working so well and being so short. It's SO important that we do this right. I don't feel like I have time to dedicate to this search or even that I know where to start looking. Please pray.

Craniofacial - Jordan's plastic surgeon (who we LOVE) said that her palate is so wide that he can't do her surgery to close it until she's at least one year old. :( This is hard to hear because it's such a juggle with her speech and language. We want to wait so that it'll be a successful closure but we also don't want her speech to be too delayed. Another possible setback with this is that our surgeon has gone out on his own and is not accepting our insurance. We're working on pleading with him to take Jordan at our HMO cost. PLEASE PRAY that he will and that we will just be a blessing to him and to his office staff throughout. We really, really like him and feel so comfortable and confident with him. It would be very difficult for us to go to another doctor at this point - in the midst of the process. We trust that God's plan is for the best and that He will use us where He places us but it's still tough.

Hearing/Ears - PRAISE THE LORD!!!!! Jordan had her follow up hearing test after getting her ear tubes. The first test before the surgery showed a significant hearing loss. This test came back "within normal limits!" Hallelujah!!! Only my fellow deaf educators can truly sympathize with my fear on this one. I really felt that I could handle any news other than a permanent hearing loss. I know first hand the struggles that come with that. Also her tubes are working well. She is in the midst of her 5th ear infection in 6 months but thankfully the green nastiness just drains right out now which means we can catch them early and the doc can have the green tested and treat specifically the bacteria that is in there.

General Baby Stuff - We have a new pediatrician for both kids now. We were REALLY sad to say goodbye to our old doctors but our case was difficult for them to handle with the surplus of referrals we had. They were wonderful and it was a litte emotional leaving them but I have great respect for our new doctor and he is very thorough w/ Jordan. In fact, on our first visit he sat down, took a deep breath and said, "Well, it looks like we have a lot to talk about." I almost cried. Finally someone who really wants to know everything. He took so much time with us and has every time we've seen him.

As for our spirits...we're just in the long stretch at this point. No surgeries scheduled for at least 5-6 months so we're looking forward to a "normal" summer of beach days, trips to visit family and even our first family vacation with Gma, PopPop and Uncle Scotty (as Noah says) to North Carolina's Outer Banks. Shan plans to get Noah on a surfboard and I plan to relax, read a book and take a few naps. I am still, thankfully, at the place where I'm thankful every day that Jordan has her special needs because I've now got such assurance of my faith and my relationship with God has been cemented through my reliance on Him for so much. I wouldn't take any of it back. Having Jordan has brought countless people into my life that I've been able to connect with and share the good news of Christ to. It's been SUCH a reminder, as our pastor said Easter Sunday, that these bodies are temporary and they are failing us. It is our spirit that truly matters and what happens when these bodies are long gone. As Pastor Mike said to his daughter when she said she couldn't wait to get to Heaven so she didn't have to wear her leg braces he told her to "hang in there a little longer" and soon enough she will have a new body (he continues to pray for that for her). I think about Jordan and the social problems she will likely face, the pain of surgeries and physical therapy and the knowledge that she is "flawed" by the world's standard and it makes me pray even more diligently for her spirit, that she will indeed have a new perfect body someday in Heaven. Having had two kids and seeing the years add up, I am also anticipating this new body that the bible talks about. :)

Thank you all so much for checking and for continuing to pray for us. I will post periodic pictures and updates throughout the summer and then we'll gear up early September sometime for her next round.

If you'd like to go back through the postings and photos you can click on "Archives" on the right hand side of the page to go back through them.

Scroll down for more photos recently posted and click on the pictures individually to see them enlarged.