Sorry it has been a while since I posted up-dates. We've been trying to figure out what foods to give Devin to keep him regular on the other end and I figure you probable did not want those details.

Devin now has 2 bottom teeth and we have found some baby foods that he likes as well as some other "Graduate" foods he enjoys feeding himself. Of course, he would really like to be eating what we are eating.

Birth to 3 (a county service) has really been helpful in letting us know what we should be doing to encourge Devin with movement. We are trying to get him more interested in tummy time so that he figures out that he can move by rolling or "army" crawling.

We did see the Ortho doctor about 3-4 weeks ago and we go back to see her in mid-June. She is still pleased with Devin's hips but wanted us to continue with the splint with 4 hours of freedom a day. She did mention something about AFO s(ankle, foot orthics) last time but I never count on what she says until she is in the process as her plans seem to change.

Kids with Spina Bifida generally do get some kind of foot orthic and sometimes it also includes the knee and/or the hips depending on the individual child. As I understand it, orthics and/or some kind of standing device is probable the next step for Devin from an Orthopedic stand point.

8 Months and Counting!

Thanks to the family and friends who came for the small baptism celebration we had for the kids. A special Thank You to Marty who captured some truely priceless moments.

Although medically, not much has changed with Devin, he is just beginning to go through that phase that he accomplishes new things every day. His first tooth recently began to immerge. He talks and reaches for whatever he wants (often the T.V. remote!)

We are currently taking the brace off for 4 hours a day. He can get himself from the position of laying on his tummy to a sitting position. His favorite position is sitting and playing with toys.

We continue to struggle to get him to eat cereals and baby food but he loves the Baby Mum Mums the Easter Bunny brought! Along with eating new foods comes a balancing act with his bowels as we are not quite sure how things will progress in this area. Almost every child with Spina Bifida has some kind of complications with bowel and bladder but each case is a little different depending on the muscle, etc.

Spina Bifida Clinic #2

We had a Spina Bifida Clinic for Devin this last Wednesday. We mostly saw doctors who were not able to do much at the last clinic in December because he had the cast. They also did an AP Pelvic x-ray on him that day. The 2 things that came out of the clinic is that he is now eating rice cereal (but doesn't care for it much) and they are already going to start weining him out of the brace!

Although Dr. Wintersteen did not make it to the clinic because of other things that came up on her schedule, she called Friday to let us know that the x-ray showed very good bone mass development so we could start taking him out of the brace for a couple hours a day.

Since the last up-date, Birth to 3 (a state program) has started coming to our house to help us, help Devin. We have figured out some different positions for him to be in and he currently loves to sit on the floor and play with toys (middle picture from last post). The OT/PT people at Gunderson were very pleased with how he sat.

I'm not so sure about this bath thing! ...Is that really me? ...Thanks for the chair Grandma!

6 Months Old Already!

We went to see Devin's Ortho doctor Tuesday. Thanks to our wonderful Care Coordinator Nurse Kristi, we have a projected date of about 6 months for the current splint. They are very happy with his hips. They are very stable but Dr. Winterstein is hoping that the longer she can keep them stable now, the longer they will stay stable. Because of muscle imbalance in children with Spina Bifida, the hips can become unstable later. We have graduated from going to see the Ortho every 2 weeks to every 2 months (yeaaaaaaaa)! I will try to post some fun pictures in the meantime.

ILFELD Hip Abduction Splint

I took Devin to the doctor this last Tuesday. He is now in a Hip Abduction Splint. They utilized the same upper part of the harness and attached a metal bar type thing with brackets that go around his upper thigh. The cream going from his toes up is a sock I put on to protect his skin under the splint and behind the knees.

It would seem that he has more freedom as his lower leg is not actually in anything but the brackets go out just behind the knee and it does not look comfortable at all for him to bend his knee. We also had to go search for a new car seat as his legs are too far apart for the infant car seat. We were going to have to do that eventually as all of ours are expired but it just happened a little sooner and in colder weather than we were planning for.

Although I did not ask at this appointment, I believe he has about another 1 1/2 months in this devise. When he got his cast off, she indicated some kind of brace/harness for 3 months. I guess we'll find out more as that time gets closer!

Devin officially took his first bath today (more like a shower) since he was born! With the initial surgeries and the harness and casts we have only been able to give him sponge baths. The Ortho doctor gave us the O.K. to take the splint off for diaper changing and bathing.

Jump Man Devin

Devin had an Ultrasound and Orthopedic doctors appointment yesterday. The ultrasound technicians had not seen him since before his 2 spica casts and had trouble comparing ultrasounds because he has grown soo much. Once they reorientated themselves, they indicated that his hip sockets were not moving around at all (meaning they were staying in socket). This is a very good thing and the Ortho was please with this as well. As I understand it, he will have the Pavlik brace on for about another 2 months just to keep them stable.

He squirms around quite a bit while we are trying to change him. He also kicks around a lot when I take his leg out of the brace (one leg at a time) to give him a sponge bath. I have trouble getting the brace back on him because he is so busy kicking his leg out of the brace.

Make A Snowflake!

Hi Filzens!

Adoring young. This is a picture from an August 2007 trip to visit the Filzen's.

Sunday, December 30, 2007 11:03 PM

It was brought to my attention that I had not sent a picture of the Pavlik Harness. I went back and found the pre-cast Pavlik picture and am sending it along with some more current Pavlik pictures. I don't really have any new information but thought you might enjoy the pictures.