I said before that I freaked out when she was born because i saw her little feet and didn't know what was wrong and if it was fixable. It's sad to see your little one be born with all these deformities unexpected and you and your doctors not really know what it is and how to fix it. We could tell as soon as she was born that she wasn't normal. She just didn't look normal. Her little head was so long and odd shaped, it looked a little alienish. I hope to one day figure out how to post pictures on here so everyone who happens to read this and doesn't know who she is can see how she looked. The first two months we saw one to two specialists every week. We were going to Primary Children's Medical Center (PCMC) almost on the daily. It's a very wonderful hospital filled with just the best people. We saw a pediatric orthopaedic specialist for her feet. This doctor said he hadn't quite seen anything like her feet and wasn't quite sure what to do with her. So he asked us if he could experiment with her a little bit. She didn't have "true" clubbed feet so he gave her the diagnosis of high arches, but they were more extreme than just high arches. He treated her like she had clubbed feet and casted her feet in increments for three weeks. Kids with true clubbed feet I believe are casted for longer than that. Her feet looked night and day after that but instead of her feet being a complete 90degree angle, they were more straight, but the arches in her feet were still extreme. It looked like her feet were bent in half if you can imagine. I'll try hard to post pictures. The casts were made of plaster so we weren't able to get them wet so bathing her was a nightmare. She was still able to figure out how to get her feet into her mouth. They cast her knees in a 90degree position but yet she was still able to chew on her feet.....now talk about being flexible. She didn't act like it bugged her at all she just lived with it. Once they took them off she just kicked and kicked like it was the greatest thing. He then wanted us to see a neurologist to see if the muscles that turn the feet out were even working. We had to wait another 3 mo. to get in to see her and that's when we got the original diagnoses of MMD. Once we had that I think her orthopaedic doctor was more able to determine how to treat her. He then ended up just having to do surgery on one of her feet, it just wasn't relaxing or releasing. The general purpose of the casting in to get them into a neutral position and have them stay in neutral. Her right foot was able to go into neutral even though it wouldn't stay like that all the time it was easy to bring them into neutral. Her left foot wouldn't go into neutral it was stuck in the toe pointing downward position. He figured the achilles tendon was too tight and wouldn't allow her foot to release and go upward into neutral. He clipped the tendon and casted her foot so that it would heal in the correct position. It was amazing the surgery took all of 20 minutes. They gassed her for the surgery and when she was coming out of the anesthesia she vomited all over herself it was the saddest thing.....that's not important though. She then had to see ANOTHER prosthetic maker.....her first one was for her head.....and get little braces made for her feet to keep them in a 90 degree/neutral position. They're cute though they're pink and they're velcro...of course she learned how velcro works and learned how to take them off anyway. She just wanted to chew on the velcro. I bet the little hooks probably felt good on her gums, just a thought. Her feet now look 100x's better. I think once she starts walking they'll looks semi normal. I just hope she doesn't walk too funny. I bet if she has the strength she could be a great dancer.
About her head. We went in to see a plastic surgeon up at PCMC to have a consult to see what could be done for her head. We got in at the just the right time. The gave us three options. The first, least invasive was to go in endoscopically. they make a small incision at the start of the fused suture they go in with a scope and cut out the fused section and then make little triangle shaped cutouts along the side of it so the skull can grow outward and then a small incision at the end of the fused section. This option however required the use of a helmet but the healing time was 1-3 night stay. The second option was to make a zig-zag cut from ear to ear going over the top of her head peel the skin back and do the surgery that way. This option the healing time would be about a week or so and she would probably need a blood transfusion but the helmet would not be required, the results would also be immediate. The third option they don't use much anymore but they would peel the skin back take off the top part of her skull and mold it into the correct shape and then put it back on.....in a nutshell. They didn't recommend this option they said they're actually trying to phase it out. I really didn't want the helmet but I didn't want the longer healing time, the shaved head and an ugly scar. So we chose option one. They said they could only do option one between her 6 to 8th week of life. I don't remember why they only have an alotted amount of time to do that kind of surgery. I think it may have something to do with the skull forming time, but we got into surgery the following week being her 7th week. The surgeon was so sweet he came in while we were in the waiting room waiting to take her back and I started to cry. He asked why i was upset and I was upset because I didn't want them to shave her head. He laughed and said they didn't need to shave her head just a little part at the start and at the end. She had the darkest hair and it was quite long for her age and I just loved it. The surgery took about two hours which wasn't too bad. I just found it crazy my first born child going into head surgery before she was two month old. I never in my wildest dreams thought i would ever go through that. When we were in the waiting room some of the other families were talking about what their child was having done and some families seemed like this wasn't their first time there, which is sad but made my experience not seem so bad. We only had to wait about 2-3 hours it wasn't too bad. I went in to see her after she was all settled in her room. she was the saddest sight to behold. She was all drugged up she could barely keep her eyes open. She looked soooo different though. We could see an immediate change in the shape of her head it was amazing. She was still quite swollen though. She didn't need a head wrap or anything. The left the top uncovered we could see the stitches and then just put antibiotic ointment on top to keep it moist . At the bottom of her bed was a little biohazard bag and inside of it was the hair they shaved off. I laughed because i thought that was so sweet of them to save that for me....i probably cried, its what i do best. Me and Drew spent the night up there on a little couch bed that was about 3feet wide...worst nights sleep of our lives. In the morning they weren't ready to release her because her hematocrit was low. They wanted to give her a blood transfusion but the plastic surgeon wouldn't allow it, he wanted to wait a few hours and see if it would go up first. A different doctor wanted to order it but it wasn't his decision to make. The plastic surgeon was the only one who could make that call is what I understood. Luckily they redrew it and it was steadily climbing to a normal safe rate. She didn't need a transfusion. yea! They actually let us go home that afternoon. A head surgery and she only had to stay overnight...isn't that amazing!!! We got home about 5 in the afternoon. A little 7 week old baby she slept a good 12 hours straight that night! Not to mention she was on drugs, they gave us a prescription for baby percocet. She was the saddest little thing when she was all drugged up she was only on it for a few days...she's such a trooper. It was about a month before she had to get the helmet. she didn't mind it, I hated it because she sweat so bad in it and it made her head stink. We had to wash her head day and night and clean the helmet out a few times a day. I bedazzled it to make it a little more cuter. The jewels kept coming off though. She went through a total of 3 helmets and we just recently got the o.k. to leave it off for a few months to see if her head grows like it supposed to or we have to get another helmet and spend another 3 grand on it....i'll be pissed if that's the case. We've been bad parents and she hasn't worn it for the past 2 months anyway and it hasn't made much of a difference. We saw her plastic surgeon to get the okay to leave it off and he said it looks like she has the same shape head as mine....isn't that nice.
here's a not very good picture of her feet pre-surgery you can see how her left foot is pointed down. If you put pressure on the bottom and tried to make it go into a a ninety degree angle it wouldn't go. The tendon was just soooo tight.
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