First Spina Bifida Clinic Day and more cast changes

10-13-2011

Rachel is now 7 lbs 1 oz and 18.75 inches long.

The images are from this week's cast changes. Rachel's feet are getting straighter with each new set. This week her feet looked slightly swollen after the casts were removed. She was very crabby during the application of the new set and was kicking her legs around. She ended up with cast plaster all over her clothing and belly. No amount of Sweet Ease on her pacifer was going to please her this week. It seemed to have been crabby baby day in the ortho clinic as the other babies were crying too. That was on Monday.

On Tuesday we had our first Spina Bifida clinic day. It wasn't too bad- we arrived at 8 am and were done by 11:30. We saw the Urologist, clinic dietician, the rehab doctor, social worker and another lady who helped us sign up for some study programs. They place you in a clinic room and all of the people come to see you which is nice.

The results of her renal ultrasound showed normal healthy appearing kidneys. Her VCUG showed no reflux. Yeah for 2 out 3 tests! The urodynamics came back with bladder pressures in the 60's range and one peak at 109. Her spincter does not relax and allow her to urinate at a normal pressure - instead it waits for the pressure to build up. Over time this will cause thickening of the bladder wall and her bladder will not grow as it should and it will also cause reflux and damage to her kidneys. She is also experiencing bladder spasms. Her Urologist would like us to begin catheterizing Rachel every 6 hours and will be starting on Ditropan BID next week. We were given this week to practice getting comfortable with catherizing Rachel before the Ditropan begins. She is so tiny we are starting off with a 5 french foley and then we have size 6 also. The size 5 is like the size of a spaghetti noodle. Even though I have cathed adults- a wiggly baby is definetely a challenge at this point. I am confident we will get a system down and it work out okay. I am curious if she is too young to be started on a cranberry supplement as the cathing is going to put her at great risk for UTIs. We have a pediatrician visit next week so I will explore that idea with her.

One of the studies I signed Rachel up for is being done at the University of Wisconsin Milwaukee campus. It is testing both babies with SB and without SB on the use of treadmills for strength training of their legs. They have shown that both babies with and without SB will move their legs on the treadmill the same way and are researching if this could be a new treatment option for SB babies developing leg muscles. I am curious about this one- it sounds interesting- my shorthand version of the brochure does not give it any justice. I will keep everyone updated on this one. I am not sure if Rachel qualifies right now with her casts on ?????

8 weeks old and cast changes

10-6-2011

This week's images are from Monday when Rachel had her second set of casts removed and the third set applied. There was more of a noticeable difference with her clubfeet this week. We are scheduled to have a new set of casts applied every Monday for the entire month of October. I am happy to see this week's progress. She does not seem to mind the having the casts- she still kicks her legs up in the air- future Rockette dancer in the making. I continue to do CSM checks on her toes with each diaper change. I do have to agree with the other moms with kiddos getting casted for clubfeet- bring with extra clothes and wipes to clean up your little one. The dry plaster leaves a trail of dust behind - they do put a protective sheet over your little one but the dust gets everywhere. The wet plaster can get on your little one's clothes and in their diaper, on their belly and ect- good to clean off as soon as possible. For those who are not as familiar with casting- with using both fiberglass or plaster casting material the casts will get warm as the material hardens (takes less than a half hour) but afterwards will feel cold and damp until dried- usually a few hours. Also the cast saw removes the cast by vibration- it does not cut the skin- although if it is left in one place too long it can cause a burn and is noisy. Rachel usually sleeps through the cast removal and the cast spreaders seem to be about as big as she is.

Rachel had her urology testing done this morning. She had a renal ultrasound, a VCUG and urodynamics. We will not know all of the results until Tuesday when we have our first Spina Bifida clinic day. We do know from the VCUG though that there was no reflux into her kidneys and she was able to empty her bladder on her own. The results from the urodynamics will indicate her bladder pressure and if she were to need to be straight cath'd. They had to use a size 5 fr foley on her for the testing since she is so small.

We are having good results for diaper rash/open area prevention using Antimonkey Butt powder following by a layer of Antimonkey Butt cream. I have only been able to find it at Walgreen's so far. Needless to say, I bought out the shelf of it yesterday. Both are priced at $5.49 which is not too bad.