She is about 20 months old now and has advanced sooo much in her abilities. It was in about January of 2012 that she first actually started to move. She was in a seated position and would move in a cartwheel like movement. We like to refer to it as "twirling". I've been told that a lot of babies that aren't quite strong upper bodywise will usually scoot on their bottoms but she found this way instead all by herself which turns out to be pretty convenient and clever. She still doesn't say any words the only thing that she does say and it sound pretty close is " hi dad". She still doesn't say her "m's" much so "mom" is almost non-existant. I'm not sure she even recognizes that I am referred to as mom.
As of April 2012 she had made much more progress......Early march we saw a spine specialist at Shriner's hospital in Utah. She has a curvature in her back that resembles kyphosis. Her OT was concerned and urged me to see a specialist to take a look at it. He said that the normal curvature is about 50% in the upper back whereas her is 60%. He said that her lower back which resembles lordosis is just compensating for the curves of her upper back. I told her OT this and she was thinking, hoping that if she strengthen her upper back muscles that it could maybe help the curves to either straighten or slow the progression. The specialist said we don't need to worry too much but that we need to bring her in every 10-12 months to keep track of how she is doing......Back to her OT, she said the only way she could think of strengthening her back muscles would be to spend more time in the four point position or to crawl. The was an amazing day. We spent just about a whole hour playing with blocks on her hands and knees and coaxing her in to getting down on her hands and knees, if she squealed we would let her get back on to her bottom. Apparently praise it was is really her ticker. She loves to be praised. When she would voluntarily get on her hands and knees and play we would just make such a big deal out of it. That is how she knows that "oh this is a good thing, this is what I should be doing". I even got her in that position and she tried to get away and ended up crawling away from me!! I was in pure shock that she did that. Now that I knew she could I pushed her and pushed her to crawl. We still make a huge deal out of it when she just spontaneously comes in the room crawling. I can tell that it is helping out tremendously with her strength. She is such an amazing girl. Just praise and praise her and she'll do anything.
Just this night I was so excited. She was playing around the couch trying to get up. I usually have to show her to steps to stand up. I put one of her knees in a 90 degree angle and she'll push on that leg to a standing position. Eventually she wanted to move from standing to crawling up on the couch. I showed her to put a knee up on the couch and she could pull herself up, of course I had to do a lot of boosting because she just doesn't have all the strength yet to pull up. Just now I saw her pull herself up into a standing position all by herself and she had one knee up on the couch. She started to whine for me to help her up the rest of the way! I was soo impressed!!! I can't possibly imagine what it next she tends to keep me guessing. We've been trying to teach her a little bit of sign language so that she can better communicate. Lately she's got the pointing thing down she points to everything. If she wants a drink or something I'm eating she'll point. She'll point at the dogs and I'll recite their names etc. The other night she held her empty sippy cup out to me and I signed the action for "more". Out of the blue we've tried this many times before she mimicked me. She obviously doesn't know what this means so I filled up her cup and gave it to her and she refused it, so I brushed her teeth and put her to bed. Every so often when she is being fussy and just not getting through to me she'll do the sign for "more". I thought it was her cup or her blanket. This night she had both her cup and blanket in front of her and she was fussing and signing it again. So i'm thinking that it means she wants to go to bed. I figure its not the right sign but at least she is communicating that she is tired and wants to go to bed.
Such an amazing little girl I am so truly impressed I love living each day to see what comes next in our little adventure together. There aren't a lot of things better than seeing your hard work pay off. What takes normal kids days to learn it'll take her weeks if not months. My 20 mo. old daughter is starting to break out of her infancy.
Friday, April 13, 2012
Tuesday, November 22, 2011
Fatigue
I went to a support group about a week ago. It's a little group up in SLC where a woman hosts a group of people and brings in a person to talk about a particular subject that the group is interested in per se. This woman, Anne, is a friend of my step mother-in-law. After this meeting I went up to her and introduced myself and Dallas and we began to chat. She had inquired if I had visited any of the online chats, which I haven't, i've browsed a little here and there and just lurked but haven't participated. She says one of the main topics of some of these chats are fatigue and if I had experienced this myself. I've never really fully recognized what i've been experienced as fatigue. To me its been normal but i've noticed the older I get the worse it gets. Apparently there really isn't much to do about it but I figure i've been living with it this long i'm used to it and it's not that big of a deal. I wish that I could take like and hour long to two hour long nap during midday and i'd be set to go. Some Saturdays when it's just go-go-go i'll sleep when Dallas sleeps and the remainder of the day is better.
Now Dallas is so funny. I can totally tell it affects her. The day after her birthday we went to 7 peaks waterpark in Provo. We got there about 11 and she hadn't had a nap that morning. She was such a trooper she lasted about until 2:30-3. By then she could hardly hold her head up. I can tell she's exhausted when i get her out of the car and she's still asleep until i lay her in her bed. That day she was asleep from 3 until 7 when I woke her up to get her something to eat and make sure she was doing alright. She lasted about half an hour and went right back to sleep. She slept until 7 the next morning when i woke her up to get her ready and take her up to her papa's house so he could watch her for the day while i was at work. He wasn't very happy when I came to pick her up. They love to play all day and he said that she was up for a total of 2 hours the entire day. I couldn't help but laugh. I had no idea the previous day would wipe her out that bad. She had actually fallen asleep on the way up to his house which is about 20 minutes away anyway. The days I go up there she's usually awake just looking out the window talking and laughing to herself. I think the fact that's she's just so little it takes more energy to fuel her and twice as long to recharge her. My sister has a little boy who is 3mo. younger and she envies how much more Dallas sleeps than her little boy. I get 12-13 hours a night out of her and she's lucky to get 6-8 out of her little boy. In a way it is nice because it allows more husband-wife time but less Dallas time when my time with her is so short anyway with me working. I just hope someday I can be a full-time mom so I can work with her, get her on a routine and be there for her. I think that that would be really good for her and for me.
Now Dallas is so funny. I can totally tell it affects her. The day after her birthday we went to 7 peaks waterpark in Provo. We got there about 11 and she hadn't had a nap that morning. She was such a trooper she lasted about until 2:30-3. By then she could hardly hold her head up. I can tell she's exhausted when i get her out of the car and she's still asleep until i lay her in her bed. That day she was asleep from 3 until 7 when I woke her up to get her something to eat and make sure she was doing alright. She lasted about half an hour and went right back to sleep. She slept until 7 the next morning when i woke her up to get her ready and take her up to her papa's house so he could watch her for the day while i was at work. He wasn't very happy when I came to pick her up. They love to play all day and he said that she was up for a total of 2 hours the entire day. I couldn't help but laugh. I had no idea the previous day would wipe her out that bad. She had actually fallen asleep on the way up to his house which is about 20 minutes away anyway. The days I go up there she's usually awake just looking out the window talking and laughing to herself. I think the fact that's she's just so little it takes more energy to fuel her and twice as long to recharge her. My sister has a little boy who is 3mo. younger and she envies how much more Dallas sleeps than her little boy. I get 12-13 hours a night out of her and she's lucky to get 6-8 out of her little boy. In a way it is nice because it allows more husband-wife time but less Dallas time when my time with her is so short anyway with me working. I just hope someday I can be a full-time mom so I can work with her, get her on a routine and be there for her. I think that that would be really good for her and for me.
Eating Troubles
We've had our troubles of eating. I still give her baby food and formula (for the nutrition she's not getting from not eating.) She likes to take the easy way out and just take a bottle its a faster full and takes less work. I had to fight her and fight her to make her eat. She is the most stubborn little girl already. I had to either make her eat real food or she would go hungry. I refused to give her a bottle. She would eat three bites and wouldn't take anymore and then whine and throw a tantrum reaching for the bottles she could see. So once she wouldn't take anymore we'd go play until she started to cry again. I knew she was still hungry. So we did it again with the food. Three bites and then the whining. We did this for a few days and finally she began to accept the food. I also had to hide the bottles so they weren't in plain sight anymore. Now I just give her a bottle before I put her to sleep just to satiate her, and help plump her up. I have found she likes the very plain and bland tasting food. She likes the meat or food with meat in it, more so the chicken. It funny how picky she can be already. My sister suggested maybe she craves the protein because she needs it to build the muscles. I think its a very valid point and could be.
She's in early intervention. They suggested maybe either her teeth hurt and that could be why she didn't eat or indigestion. My theory was when I brushed her teeth she didn't fuss so I don't think her teeth were the cause and I would just give her a bottle whenever she was hungry instead of trying to feed her, it was quicker and easier. I've learned to the easy way is probably not the best way. She does love to eat off our plates when I make dinner. I think it makes her feel more of a big girl to eat big people food, which could be a good thing.
At least I don't have to worry about her becoming obese. She won't eat if she's not hungry. I'm trying to learn from that.
She's in early intervention. They suggested maybe either her teeth hurt and that could be why she didn't eat or indigestion. My theory was when I brushed her teeth she didn't fuss so I don't think her teeth were the cause and I would just give her a bottle whenever she was hungry instead of trying to feed her, it was quicker and easier. I've learned to the easy way is probably not the best way. She does love to eat off our plates when I make dinner. I think it makes her feel more of a big girl to eat big people food, which could be a good thing.
At least I don't have to worry about her becoming obese. She won't eat if she's not hungry. I'm trying to learn from that.
The Pros.....
Obviously its not a very happy disease but there are some pros....although they're mostly for the parents and they're kind of selfish I can't quite get her point of view on these things just yet.
With the fatigue she sleeps at least 11-12 hours a night. She usually is down between 7-8 at her own request and without fail is up between 7-8 in the morning. So its definitely a pro for the parents. We get several hours at night to do whatever parents do.....even sometimes I get those several hours by myself. Being over a year old she still takes about 2 naps a day. The afternoon naps usually last 2-3 hours. So I sometimes sneak in an hour or 2, I am usually exhausted by then.
She doesn't move a whole lot either, she can't walk yet and her crawling although improving isn't very productive. I don't always have to watch her or bring her room to room with me because when I leave she's usually in the same spot, or vicinity, of where I left her.
She's so small and doesn't grow like a weed that I definitely get my money's worth out of her clothes. She's 15mo now and still can wear 6- 9-12 month clothes that she's been wearing for for the last 6 months. That is great! She's also not super stiff like a lot of normal kids she's very very flexible which makes her much more cuddly. Especially when she's tired or worn out she's very cuddly.
She's still very much a baby at this age. She's not a toddler because she doesn't toddle. Her appearance is looking more and more like a little girl but she's is still very much a baby. She can barely talk and can't walk....or stand.
Daddy and Dallas
Dallas and her Mom
These are just a few pictures of us. She just has a special little personality so easy to fall in love with. She has little bonds with all of her family members. We call her "special needs" I don't think you would even know it unless you knew her or saw her try to move. She's captured hearts and I think a lot of it is she isn't "normal" and to see her try so hard to do so many things makes it so much more of an accomplishment when she does. That is one of the best pros. Every little milestone is so special to see, to see her learning little things and wondering where she picked it up from. To see her progress is just the absolute best!!
There are con's though, of course. Because she can't talk she whines a lot, its frustrating not being able to communicate. It's also frustrating for her to not be able to move everywhere she wants to get and get everything she wants to get. I make her work for it. If she wants me to hold her I make her come to me, she hates it and will throw a tantrum but how else will she learn to move or want to learn to move.
With the fatigue she sleeps at least 11-12 hours a night. She usually is down between 7-8 at her own request and without fail is up between 7-8 in the morning. So its definitely a pro for the parents. We get several hours at night to do whatever parents do.....even sometimes I get those several hours by myself. Being over a year old she still takes about 2 naps a day. The afternoon naps usually last 2-3 hours. So I sometimes sneak in an hour or 2, I am usually exhausted by then.
She doesn't move a whole lot either, she can't walk yet and her crawling although improving isn't very productive. I don't always have to watch her or bring her room to room with me because when I leave she's usually in the same spot, or vicinity, of where I left her.
She's so small and doesn't grow like a weed that I definitely get my money's worth out of her clothes. She's 15mo now and still can wear 6- 9-12 month clothes that she's been wearing for for the last 6 months. That is great! She's also not super stiff like a lot of normal kids she's very very flexible which makes her much more cuddly. Especially when she's tired or worn out she's very cuddly.
She's still very much a baby at this age. She's not a toddler because she doesn't toddle. Her appearance is looking more and more like a little girl but she's is still very much a baby. She can barely talk and can't walk....or stand.
Dallas and her "papa"
These are just a few pictures of us. She just has a special little personality so easy to fall in love with. She has little bonds with all of her family members. We call her "special needs" I don't think you would even know it unless you knew her or saw her try to move. She's captured hearts and I think a lot of it is she isn't "normal" and to see her try so hard to do so many things makes it so much more of an accomplishment when she does. That is one of the best pros. Every little milestone is so special to see, to see her learning little things and wondering where she picked it up from. To see her progress is just the absolute best!!
There are con's though, of course. Because she can't talk she whines a lot, its frustrating not being able to communicate. It's also frustrating for her to not be able to move everywhere she wants to get and get everything she wants to get. I make her work for it. If she wants me to hold her I make her come to me, she hates it and will throw a tantrum but how else will she learn to move or want to learn to move.
Monday, November 14, 2011
Pictures.
She's in her swing which she hated but notice she's leaning to the side. She was about 5 months old and still couldn't hold herself up. She still had a hard time even holding her head up. We think the helmet probably helped strengthen her neck muscles.
 |
| She's going wheeling in the 4 runner and she loves it!! |
 |
| This is her second helmet which she got on in about January 2011. This was about that time. This is a Jenny jump up we thought might help her to weight bear. Her poor little left leg refused to go straight. Even now this is what she does when we try to get her to stand she stands on the side of her feet. |
Monday, August 22, 2011
Clubbed Feet/Craniosynostosis
I've read on a few sites about MMD that skeletal deformations can occur because of this as well as clubbed feet. I think Dallas got both. She was born with a fused skull which i put in the skeletal deformation category and clubbed feet which apparently is more common. They don't know where the fused skull came into play since it doesn't run in the genes on anyone of mine or my husbands family. It was just a freak thing. The clubbed feet could be caused they say because of the position she was in in-utero. I happen to think that could be true since she didn't move much she didn't have the opportunity to get out of the position she was in much.
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.
This is head pre-surgery. you can see how it narrows in the back how elongated it is. It was hard for her to lay on the back of her head like normal babies so she was always sleeping on her side. We tried to switch her from side to side so her head didn't flatten anymore than it should've.
here's her first helmet. Still sleeping on her side. The helmet didn't seem to bother her she eventually got used to her but they wean them into it, by keeping in on and off for 2 hours the first day then 4 hours on 1 hour off, then 8 hours then the total 23 hours on 1 hour off while she's bathed and then back on it goes. We cheated often but the helmet guy (i don't know what else to call him) said he's seen some children whose parents didn't follow through and they don't look "good". I refused to have the rest of my child's life looking inadequate because of 8 mo.'s of a helmet. It was very worth it.
Here is another not very good picture of the top of her head. She's on the right. You can see her hair is starting to grow back but the scar is all healed up and her head has widened considerably......it's amazing. She looked more and more normal everyday. If you look very closely you can see her left foot turned in also, the turning is part of the clubbed feet.
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.
Movement
It's amazing watching her move, what little movement she can do anyway. With the MMD her movement is very limited because she just doesn't have the strength to hold herself up the way babies do when they crawl. It's taker her this long...a little over a year just to be able to hold her head up when she's on all fours. The good thing about it though is she is extremely flexible. The way she'll reach for items directly in front of her is she'll be sitting with both her legs out straight in front of her and she'll fall forward, purposely, and her stomach will be touching the floor in between her straight legs and she'll turn her head in the direction of the object she's trying to reach and then if she can get it she'll walk her hands back up into the sitting position. We had to teach her a few tricks to lift herself back up when she fell over because her sitting/balancing skills aren't the best when she's on uneven ground....like a bed. She'll constantly fall over and have trouble getting back up. We had to teach her to use her hands to walk herself back up to the sitting position which she caught on pretty quickly and is getting really good at it if she can get into the position. Tummy time doesn't even exist because she's learned to roll to her side and walk herself up or if she's in the crawling position she'll do the same thing. She's only so far having trouble going from her back to sitting up. We're trying to teach her to roll onto her side to get up but her arms are always in the wrong position. She can roll to the side but one arm is always stuck behind her and she can't lift up enough to bring the arm that's behind her to the front of her. You never really think of how much strength it takes to make just the little movements. When your, or in her case her muscles are not there or just weak it's so sad to watch her struggle to make the smallest easiest movements when she can't or doesn't know how. Just watching her I can see she wants to move all over the place but is frustrated because she doesn't know how. She's starting to figure out how to turn around, which she found out all on her own. She surprised me and her papa one day finding her in a 180 degree position a few minutes after we had set her down. Now she just turns circles on her bottom. I think it's the start of her scooting. I hope within the next few months we'll see her start to scoot. I like to give her time on her knees and on her crooked little feet to practice standing to get the sensation of what it feels like and get used to the weight bearing. I think the fact that her feet are turned inward and they are still so small will make it a little more difficult. I did get her some jelly shoes that have a hard sole and that makes keeping her feet straight easier. We have braces for her feet that I don't like to put on her because it causes pressure sores in certain spots and she shouldn't have to go through that. Her neurologist said it's really only necessary at night but we're bad and we don't even do that. These braces are for her clubbed feet that she was born with and have been fixing over time.
her arms move relatively well. Her legs are very very active as well and she's pretty coordinated with them they just refuse to weight bear. She's starting to use her knees a lot more I think once she starts to use her knees more the feet will be next. We're just being patient and letting her figure things out. I don't think she'll weight bear until she actually wants to. Her physical therapist through the state says its probably the sensation of weight bearing on her feet and the sensation of feeling like she's going to fall forward that delays this. I can relate though. Like when I go snowboarding and its hard for me to go to fast because of my feet being locked in a position and feeling like i'm going to fall forward, how am i going to catch myself if i do without breaking my wrists etc. I'm a terrible snowboarder it's just getting over that sensation and having the determination.
Subscribe to:
Posts (Atom)