First school. Ayden Jane loves school. From all the reports I am getting from her teachers so far they think she is doing great. I will eventually have to ask them to give me areas of need so I can work on things but for now I am just enjoying it. Why you ask? Well, I look at it this way. As much as I love to hear she is so great, I know there must be things she struggles with. If I don't know what they are, I can not help her conquer them. I know, I know. She is just a kid... give her time... I am just not sure that applies to AJ or any other special needs child.
Now don't get me wrong. I don't think they need therapy 24/7, just that the fact that we know some things are harder sort of means they won't just magically fix themselves. I have seen it time and again with Ayden Jane. She can do everything other toddlers do, but it often takes a few more guided practices before that muscle memory (or any other memory most likely) kicks in. I know that her developmental milestones have been met at low end of normal or only mildly delayed (which is incredible), but I also watched as she was literally taught to move certain ways. I know none of my other kids needed the teaching part. They saw, they did. I wish I could go back and watch them all over again and enjoy the magic. I knew they were amazing children, but I have such a grand perspective on how amazing now.
I digress. The point is, her teachers are wonderful and sweet and everything you could imagine in preschool teachers. They see her as a sweet, beautiful, incredible creation of God. I think it is gonna be hard for them to point out any shortcoming. Maybe I will just ask them to think of 3 things AJ and I can work on together.
Now appointments. I am really getting tired of them. Yes, I am whining and I really have no right to as things are going great. Here is the list. 2 hour home visit from the school district for transition to district services. (I only want speech but you gotta go through all the hoops) Hour or so of cognitive testing at the Elementary school. IEP meeting coming up on Sept. 30. Normal PT and ST. Eyes checked. Hearing screened. Monday I have an appointment to get AJ fitted with orthodics. 3 year well baby check coming. Return to Endo and to Genetics in Oct. I am sure I am leaving a few things out! I will be glad to be officially 3 with transition and 3 year appointments behind us!
Friday, September 17, 2010
Thursday, September 16, 2010
Swimming
Of course we all know that swimming is great for everyone. It is low impact great exercise. Ayden Jane has loved the water from the beginning and we have always felt that we see benefits both in strength and, quite frankly, mood after she has been swimming.
Let me start by describing just what she does when we go swimming. She HATES to wear water wings/swimmies. So, we just let her go without them. She has become very comfortable in the water with a pool noodle. It is the best $1.50 I ever spent. Last night we went to the pool and Ayden Jane starts by jumping right in. Yep, before I even have a chance to put things down she is in the water. She hold the noodle as she jumps and pops right up. She loves it when we jump in and 'bomb' her. Shortly after she will take a hold of her noodle and swing one leg over to ride it like a horse. Once in this position she will balance, kick with her feet and paddle with her hands. She actually moves across the pool pretty well this way. Her latest trick is to 'swim' to the rope, throw her noodle over and head into the 9 ft! She then thinks it is funny to flip over her noodle like a somersault. She lets go and enjoys the weightless feeling, yes making me get the bigger work out. She usually goes wide open for 20 to 30 and then is content to play on the steps, swimming out and back without her noodle. Jumping in and swimming to me... It is just a calmer pace.
Here is what was new. When I picked up Ayden Jane from school today they were thrilled to tell me what an awesome day Ayden Jane had. She apparently was talking up a storm and over all less shy. They saw a real difference in her. Definitely have to try this experiment again. Of course, the problem is the pool will be getting cold soon!
Let me start by describing just what she does when we go swimming. She HATES to wear water wings/swimmies. So, we just let her go without them. She has become very comfortable in the water with a pool noodle. It is the best $1.50 I ever spent. Last night we went to the pool and Ayden Jane starts by jumping right in. Yep, before I even have a chance to put things down she is in the water. She hold the noodle as she jumps and pops right up. She loves it when we jump in and 'bomb' her. Shortly after she will take a hold of her noodle and swing one leg over to ride it like a horse. Once in this position she will balance, kick with her feet and paddle with her hands. She actually moves across the pool pretty well this way. Her latest trick is to 'swim' to the rope, throw her noodle over and head into the 9 ft! She then thinks it is funny to flip over her noodle like a somersault. She lets go and enjoys the weightless feeling, yes making me get the bigger work out. She usually goes wide open for 20 to 30 and then is content to play on the steps, swimming out and back without her noodle. Jumping in and swimming to me... It is just a calmer pace.
Here is what was new. When I picked up Ayden Jane from school today they were thrilled to tell me what an awesome day Ayden Jane had. She apparently was talking up a storm and over all less shy. They saw a real difference in her. Definitely have to try this experiment again. Of course, the problem is the pool will be getting cold soon!
FPWR Conference
Gary and I traveled to Bethesda MD for the FPWR conference. The drive was rough on Ayden Jane but the conference was sooo worth it. We were able to hear from a few of the incredibly intelligent researchers who are on a mission to find answers to the struggles for people with Prader Willi syndrome. Yippeee!!
For those interested in the details, I have to say Ali, over at www.divingintothewaves.com and Susan at www.hedstromfamily.org summarized it really well. I am not going to reinvent the wheel and post my notes. We may get our hands of some slide shows that we saw and I will post those if I figure out how.
The big picture of what we heard is HOPE. If not a cure for PWS, help for the many challenges. Help that may reduce the gnawing hunger. Help for behavior problems. Help for the so very common scoliosis. Help for the hypotonia they all struggle with. Help with the sleep apnea. Help with so many things.... The answers may come soon or may not come for a while, but just to know that someone is working really hard to find the answers and that it is possible that some answers are just around the corner is... well... unbelievably exciting doesn't even cover it. Impossible to put into words the feeling that there is hope to improve the future of your child when so much of their future is out of your control.
Now, if I can just raise a few hundred thousand dollars so they can get to work!
For those interested in the details, I have to say Ali, over at www.divingintothewaves.com and Susan at www.hedstromfamily.org summarized it really well. I am not going to reinvent the wheel and post my notes. We may get our hands of some slide shows that we saw and I will post those if I figure out how.
The big picture of what we heard is HOPE. If not a cure for PWS, help for the many challenges. Help that may reduce the gnawing hunger. Help for behavior problems. Help for the so very common scoliosis. Help for the hypotonia they all struggle with. Help with the sleep apnea. Help with so many things.... The answers may come soon or may not come for a while, but just to know that someone is working really hard to find the answers and that it is possible that some answers are just around the corner is... well... unbelievably exciting doesn't even cover it. Impossible to put into words the feeling that there is hope to improve the future of your child when so much of their future is out of your control.
Now, if I can just raise a few hundred thousand dollars so they can get to work!
Tuesday, September 7, 2010
What's in a Name
Some one remarked about Ayden Jane's name the other day. I think she said it was, "unusual." I'll take that as a compliment, but it did make me stop and think about her name a bit.
When we were rolling around ideas for a name for baby number 4, we were having trouble coming up with a girls name. Several names kicked around, but for whatever reason, Gary and I both liked Ayden. Sort of like as soon as we heard it we knew that was it. As for the middle name, it was actually Mckenna that first suggested Jane. It just fit so...
What we were unaware of was how unbelievably accurate a description for our little one the name would be. A quick search for the meaning of the name Ayden reveals: Little fire. (Need I say more). The name Jane: God is gracious. Wow. Our Ayden Jane could not have much more fire. She is fiery about the way she is determined to keep up with her siblings, about doing it herself!, but I would also say that the passion with which she has fun is another form of that fire. Yep. No matter what AJ is doing, it is with her whole heart. If only we could all live that way. As for Jane, well, to have held her as an unbelievably frail infant and watched the personality, strength and fire grow... Well, I guess I get to live with God's grace. We are truly blessed.
When we were rolling around ideas for a name for baby number 4, we were having trouble coming up with a girls name. Several names kicked around, but for whatever reason, Gary and I both liked Ayden. Sort of like as soon as we heard it we knew that was it. As for the middle name, it was actually Mckenna that first suggested Jane. It just fit so...
What we were unaware of was how unbelievably accurate a description for our little one the name would be. A quick search for the meaning of the name Ayden reveals: Little fire. (Need I say more). The name Jane: God is gracious. Wow. Our Ayden Jane could not have much more fire. She is fiery about the way she is determined to keep up with her siblings, about doing it herself!, but I would also say that the passion with which she has fun is another form of that fire. Yep. No matter what AJ is doing, it is with her whole heart. If only we could all live that way. As for Jane, well, to have held her as an unbelievably frail infant and watched the personality, strength and fire grow... Well, I guess I get to live with God's grace. We are truly blessed.
Monday, September 6, 2010
Just Plain Funny
So Ayden Jane, when not driving me crazy, is absolutely hilarious. Thought I would just share a couple of AJ stories.
Last night Ayden Jane asked Gary to paint her nails. She had the nail polish in hand and came halfway down the hall to him. She stopped and said no thank you and turned back. Gary and I chatted for a minute and then realized that she didn't come back. I went to our room to check on her and she was painting her own nails! I was beautiful let me tell you. I, of course, took the nail polish and told her she is not to do it herself... I went out of the room pretty quickly because Gary was heading out the door to work and I needed to tell him something. I then looked back down the hall and there was a little head peeking around the corner. She grinned and said, "I a silly goose?" Totally testing the waters to see if it was safe to come out.
Tonight, we were doing a bit of shopping with my Mom. Yep. Grandma shopping which means actually buying more than usual! Any way, early in the shopping Ayden Jane found a favorite outfit. She held onto it and hugged it the rest of the evening. She kept saying thank you and I love my new clothes... At the end, she put them up on the counter with the rest of the items. There were quite a few things so it was taking a minute. Ayden Jane piped up as plain as day, "are you done with my flower shirt yet?" She was getting quite impatient with the clerk...
Finally, we were at McDonalds the other day. AJ needed to go potty so off we went. About half way there she stops (from her usual full run) and turns to me, hold up her hand and says, "no mommy, I do it myself." Ummm. Not sure I am ready to let my two year old maneuver her way through a public bathroom just yet thank you. AJ was adamant, but luckily the door was too heavy. After a bit of negotiation I was allowed to stand inside the bathroom near the sink, but that was it. I was sort of stuck in the whole scenario because, well, if I argued too long AJ could be arguing from a puddle. She knew all along that she had a fair amount of power in this power struggle.
Last night Ayden Jane asked Gary to paint her nails. She had the nail polish in hand and came halfway down the hall to him. She stopped and said no thank you and turned back. Gary and I chatted for a minute and then realized that she didn't come back. I went to our room to check on her and she was painting her own nails! I was beautiful let me tell you. I, of course, took the nail polish and told her she is not to do it herself... I went out of the room pretty quickly because Gary was heading out the door to work and I needed to tell him something. I then looked back down the hall and there was a little head peeking around the corner. She grinned and said, "I a silly goose?" Totally testing the waters to see if it was safe to come out.
Tonight, we were doing a bit of shopping with my Mom. Yep. Grandma shopping which means actually buying more than usual! Any way, early in the shopping Ayden Jane found a favorite outfit. She held onto it and hugged it the rest of the evening. She kept saying thank you and I love my new clothes... At the end, she put them up on the counter with the rest of the items. There were quite a few things so it was taking a minute. Ayden Jane piped up as plain as day, "are you done with my flower shirt yet?" She was getting quite impatient with the clerk...
Finally, we were at McDonalds the other day. AJ needed to go potty so off we went. About half way there she stops (from her usual full run) and turns to me, hold up her hand and says, "no mommy, I do it myself." Ummm. Not sure I am ready to let my two year old maneuver her way through a public bathroom just yet thank you. AJ was adamant, but luckily the door was too heavy. After a bit of negotiation I was allowed to stand inside the bathroom near the sink, but that was it. I was sort of stuck in the whole scenario because, well, if I argued too long AJ could be arguing from a puddle. She knew all along that she had a fair amount of power in this power struggle.
Saturday, September 4, 2010
"She is so independent"
Okay, so on one hand that phrase makes me happy. On the other hand, it makes my days much more difficult than they have to be!
I have been told by many people that Ayden Jane is so independent and it is always meant as a compliment.... Sometimes I wonder if she is that way because we have always done what we can to encourage her to do things herself. Sort of like a life of therapy. I am guessing, though, that it is at least partly just the way God made her. (she is my daughter!) For the most part this is a very good quality. Sometimes, however, it is enough to drive me crazy.
For example, trying to get out the door to go... anywhere. Ayden Jane wants to choose her clothes and dress herself. I really have no concern for what matches and am pretty laid back as far as whether she is dress nicely or not. I do, however, insist that underwear go under the pants. Ayden Jane is capable of getting dressed but it is a long process, usually requiring a couple of tries on some article of clothing complete with a small tantrum over the fact that it didn't go smoothly the first time. Then there are shoes which may or may not be on the right feet. Finally, when we get to the car, she feels the need to get into her car seat herself...
I know that this is part of her age, turning 3! It is also part of the reason she is doing so great. All you have to do is tell her she can't do something and you have guaranteed it will be done! The trouble with her independence is that it is coupled with NO concept of fear. Parking lots can be frightening because she has no fear of moving vehicles. Crowds? her favorite place to practice bobbing and weaving. Water? she will jump in with no concern. Wandering off? all it takes is something to catch her eye and she will go anywhere. The only thing she reliably stays back from is strangers. At least I have that one covered.
I just hope that as her teachers continue to comment on how independent she is that they mean it as a compliment:)
I have been told by many people that Ayden Jane is so independent and it is always meant as a compliment.... Sometimes I wonder if she is that way because we have always done what we can to encourage her to do things herself. Sort of like a life of therapy. I am guessing, though, that it is at least partly just the way God made her. (she is my daughter!) For the most part this is a very good quality. Sometimes, however, it is enough to drive me crazy.
For example, trying to get out the door to go... anywhere. Ayden Jane wants to choose her clothes and dress herself. I really have no concern for what matches and am pretty laid back as far as whether she is dress nicely or not. I do, however, insist that underwear go under the pants. Ayden Jane is capable of getting dressed but it is a long process, usually requiring a couple of tries on some article of clothing complete with a small tantrum over the fact that it didn't go smoothly the first time. Then there are shoes which may or may not be on the right feet. Finally, when we get to the car, she feels the need to get into her car seat herself...
I know that this is part of her age, turning 3! It is also part of the reason she is doing so great. All you have to do is tell her she can't do something and you have guaranteed it will be done! The trouble with her independence is that it is coupled with NO concept of fear. Parking lots can be frightening because she has no fear of moving vehicles. Crowds? her favorite place to practice bobbing and weaving. Water? she will jump in with no concern. Wandering off? all it takes is something to catch her eye and she will go anywhere. The only thing she reliably stays back from is strangers. At least I have that one covered.
I just hope that as her teachers continue to comment on how independent she is that they mean it as a compliment:)
Friday, September 3, 2010
School, Stitches and PT
Let's start with school. Ayden Jane absolutely loves school. She asks in the morning, "i go my school?" A yes answer always brings big grins and excitement. She names several friends from her class and when asked what she did at school always answers, "we sing songs at school." It is so fun to pull up through the pick up line and watch her grin as she holds her teachers hand and walks down the steps. (She fought the hand holding at first). Her teachers tell me how independent she is. She apparently does not say much at school, but her vocabulary is blooming at home. She is learning so much just being in a new language rich environment. We had a parents get together last night. The director stopped to chat with us and told us how much she loves Ayden Jane's great little personality. She is a woman who loves and independent streak and so the two are two peas in a pod. I feel so blessed to have Ayden Jane is a place that already loves her to pieces and it is only a couple of weeks into the year!
On to stitches. Ayden Jane decided a few days ago to climb into her crib to get something. She managed to pop open a stitch... She came to me and said, "I need a go to the doctor." I did not catch on... Finally, I noticed the blood under her chin and on her neck. It was not too bad so we just decided to let it alone. Let's just say the scar will not be as pretty as it would have been otherwise, but it is up under her chin where no one will see it anyway.
Now for PT. I think we are finally coming off of the last wave of sensory whatever AJ goes through. She is much easier to deal with, can keep her clothes on, can focus, is not clenching every 10 seconds, is not as quick to yell, is not running into things or going so fast... is happy and more under control. Jen said she did great in PT. Jen brought back a bucket of beans that Ayden Jane used to love. She had her weighted and standing in them reaching, bending, doing matching puzzle things... Ayden Jane loved the beans. We decided maybe she needs a sort of pool of beans/rice mixture to sit in when she needs to calm down... Maybe between the trampoline on it's way, a nice bean bucket and a new weighted blanket, we will be able to ride out the next storm more smoothly.
On the flip side, language, language and cognition, cognition seem to be the results of the latest spurt. The more she can say, the more we find out what goes through that cute little head, the more we see how funny this little kid is. The sense of humor astounds me. The confidence she has regained now that she is back in control of her little body (for the most part) is a little scary though. I am sure it is the cause of her return to climbing. I have found her in her crib, scaling her dresser, on the counter, standing on her rocking bouncing horse, just don't even look at her on the bleachers at the Kayla's volleyball games, trying to walk curbs like a balance beam, standing on her rocking chair... I think you get the picture.
On to stitches. Ayden Jane decided a few days ago to climb into her crib to get something. She managed to pop open a stitch... She came to me and said, "I need a go to the doctor." I did not catch on... Finally, I noticed the blood under her chin and on her neck. It was not too bad so we just decided to let it alone. Let's just say the scar will not be as pretty as it would have been otherwise, but it is up under her chin where no one will see it anyway.
Now for PT. I think we are finally coming off of the last wave of sensory whatever AJ goes through. She is much easier to deal with, can keep her clothes on, can focus, is not clenching every 10 seconds, is not as quick to yell, is not running into things or going so fast... is happy and more under control. Jen said she did great in PT. Jen brought back a bucket of beans that Ayden Jane used to love. She had her weighted and standing in them reaching, bending, doing matching puzzle things... Ayden Jane loved the beans. We decided maybe she needs a sort of pool of beans/rice mixture to sit in when she needs to calm down... Maybe between the trampoline on it's way, a nice bean bucket and a new weighted blanket, we will be able to ride out the next storm more smoothly.
On the flip side, language, language and cognition, cognition seem to be the results of the latest spurt. The more she can say, the more we find out what goes through that cute little head, the more we see how funny this little kid is. The sense of humor astounds me. The confidence she has regained now that she is back in control of her little body (for the most part) is a little scary though. I am sure it is the cause of her return to climbing. I have found her in her crib, scaling her dresser, on the counter, standing on her rocking bouncing horse, just don't even look at her on the bleachers at the Kayla's volleyball games, trying to walk curbs like a balance beam, standing on her rocking chair... I think you get the picture.
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