Just wanted to give everyone an update on our appt. in Kansas City yesterday. We had a very good day. Our appt. was at 8:30 at Children's Mercy, in KC. It was amazing how many lives are touch by spina bifida. The waiting room was quite full of children with all different levels of spina bifida. Doctors were right about the fact that spina bifida affects each child differently.
The nurses were absolutely wonderful!!! Before we were called back, just seeing them interact with the children (some that had been going for up to 14 years) was awesome!! They remember the children's names, family members names, just warm and kind!
What happens at a 'special care clinic', is that all of the doctors that your child needs to see, come and visit you on this day. It saves you from having to call each doctor and try to make appts. This particular clinic has 11 rooms for patients. The nurses call you back and you actually stay in the room the whole time. The different doctors come to you to do your check ups. It is actually quite nice. Each room has lots of toys and books for the children to play with while they are waiting. One of the nurses brought us a snack and a pop while we were waiting. Once you get your room, it is a fairly quick process. Each child sees a different amount of doctors just depending on their needs. For Addi, we saw a neurologist, physical therapist, nutritionist, neonatologist(who was great and rather funny), pediatric urologist(who actually trained at Vanderbilt in Nashville and knows all about the moms study), and rehab (who we didn't really need).
The neurologist just check out Addi's shunt and said that it was working fine. We will have to have a check up with Dr. Greene in six weeks to do follow up. He said that babies that have shunts, for the first year they like to check the shunt every six weeks to make sure that it is working properly. After the first year, every six months. Her head and everything is in proportion where it should be.
Physical therapist said that Addi has great flexability and is doing well. With the low lesion spina bifida, it affects the nerves lower on the back. For example the muscles that control flexing the ankle down and pulling it up, also the muscles that control your hips. Being able to pull your knees to your chest and straighten your legs. The muscles that pull your ankles to your shin run along your shin at a diagonal and the muscles that help pull your foot down are in your calf muscle. Anyway, Addi is doing a great job of keeping her toes pulled up to her shin but is having a hard time flexing her foot down. They possibly think that those nerves could have been affected. This would affect running and jumping because we push off with our toes. But, I say we keep praying and doing our physical therapy and we will see what the Lord has planned for us. Still pretty early to give us the outcome yet. :) Addi has surprised us once before, I bet she can do it again! They did say that she will be able to walk! A nurse also told us that having your toes pulled up toward your shin is a better prognosis than having them pulled down.
The nutritionist was very happy with Addi's weight gain. Babies her age should gain an ounce a day and Addi is gaining an ounce and a half.
Urologist was happy that Addi is voiding on her own and is on no medication to help her with that task. We will have to go back in 4 months to have a renal scan done on her kidneys to make sure that her bladder is emptying all the way out and not backing up in her kidneys. The scan at Vanderbilt showed us that everything was working fine. Doctors tell us that everything can change for better or worse over time. Once again, relying on the Lord and having faith that he has taken care of it!!!!!! Addi is doing great now and will continue to do so.
The neonatologist was great! Talked a lot about function. 'The fact is not how children with spina bifida do it, it is that they do it.' I really enjoyed visiting with her. She was happy with Addi's progress and impressed that Addi did so well in Nashville.

Addi now weighs 7lbs. 9oz and is 19 inches long. We will continue with the path we are on...prayer, feeding, diaper changing, and physical therapy until next time. :)

Oh I forgot to add that Addi is trying to hold her up already!! Her little fingers are also finding their purpose in life to grab on to anything she can find. My hair, jewelry, having the death grip on your finger, or anyone's shirt usually works as well too!

When we got home last night, Matt and I worked in the yard. Matt mowed and I planted a couple of flowers and weeded the flower beds. Addi went with us outside and loved it!!!!!!!! We have gone outside quite a few times before, but she usually just went to sleep. Last night, she was looking around and cooing to me as we planted away. The fresh cool breeze felt good. (we are hoping for some rain today) I think we have an outside girl on our hands!