We met my brother and family at the water park today. I knew Ayden Jane would love it, but I did not know how long she would last. Well, she was unbelievable! We arrived around 11:30 and Ayden Jane hit the kiddie pools and started sliding right away. She climbed up the ramps/steps and slid down over and over and over. She met a couple other dare devil little ones about her age and she had a great time. I made her wear her 'muscles' (swimmies) at first, but finally caved in to her complaining and took them off. I was impressed that she could go down the slides, plop under and get her feet under herself and upright no problem. The one pool was chest to shoulder deep and she loved bouncing all over in it. I guess her love of jumping was just shining through.
She made it all the way to 4:30 before she just could not stay awake any longer. We stopped for a snack in the shade and ... Still, that means she went for 5 hours with just a stop in the middle for a bit of chicken. She complained bitterly at that point about getting out, but I knew she would run out of fuel suddenly on me if we did not. At about 4 we headed over for a snack of almonds and by 4:30 she said, "I go my house. All done water park." At that point it was music to my ears.
Sorry about the lack of pictures, but I am sure we will head back.
Tuesday, June 29, 2010
Endo Update
Dr. Clark called with the results from Ayden Jane's lab work last week.
IGF-1 Ayden Jane 279 reference 51-303
BP3 Ayden Jane 2.2 reference .8 - 3.0
Creatine Ayden Jane 1.3 normal .9
Carnitine total Ayden Jane 95 Normal 25-69
free Ayden Jane 63 Normal 60
I did not request a B-12 level as I am sure it is quite high due to supplementing...
Although the creatine is a tad high, she is not worried. I guess that means it is close enough. The carnitine is high in total but is fine in free which is apparently the more important one as Dr. Clark feels Ayden Jane is in great shape.
Mom gets a pat on the back for 'seeing' the need to bump the gh the month or so ago. I am glad to have the lab work to back it up though.
Ayden Jane is 29 pounds 6 ounces and is 36 1/4 inches tall and is 33 months.
Supplements: (all doses are divided morning and night)
B12 - methycobalamin 2000-3000 oral daily cyanocobalamin 2000 oral daily
Vitamin - daily multivitamin, but in the process of trying new...
Creatine - 1/4 tsp. daily
Carnitine - 600 mg. daily
Fish Oil + CoQ10 - 2000 daily
Ribose - 1/4 tsp. daily
IGF-1 Ayden Jane 279 reference 51-303
BP3 Ayden Jane 2.2 reference .8 - 3.0
Creatine Ayden Jane 1.3 normal .9
Carnitine total Ayden Jane 95 Normal 25-69
free Ayden Jane 63 Normal 60
I did not request a B-12 level as I am sure it is quite high due to supplementing...
Although the creatine is a tad high, she is not worried. I guess that means it is close enough. The carnitine is high in total but is fine in free which is apparently the more important one as Dr. Clark feels Ayden Jane is in great shape.
Mom gets a pat on the back for 'seeing' the need to bump the gh the month or so ago. I am glad to have the lab work to back it up though.
Ayden Jane is 29 pounds 6 ounces and is 36 1/4 inches tall and is 33 months.
Supplements: (all doses are divided morning and night)
B12 - methycobalamin 2000-3000 oral daily cyanocobalamin 2000 oral daily
Vitamin - daily multivitamin, but in the process of trying new...
Creatine - 1/4 tsp. daily
Carnitine - 600 mg. daily
Fish Oil + CoQ10 - 2000 daily
Ribose - 1/4 tsp. daily
Sunday, June 27, 2010
Summer Fun
We have really enjoyed summer so far. It has been crazy busy and we have had nothing close to a schedule, but it has been FUN. I think we have hit the pool or beach nearly every day, head to the playground frequently, play outside when it is cool enough (heat advisories last week) and even plan to hang with cousins at the water park this week.
As far as temperature goes, it is HOT in SC this time of year. Oddly enough, Ayden Jane does not really seem too affected by the heat right now. A lot of kids with PWS seem to over heat easily and last summer we did have trouble with that. The funny thing I have noticed this spring and summer is that Ayden Jane gets cold while swimming if the water is even a bit cold. At first it was the pool. She would swim for a bit and then hit a definite, "I cold. I all done." She would shiver and take a while to warm up. The ocean was still a bit nippy, even for me so she just was not in it too much. I was surprised today when we were at the beach. Ayden Jane was in the ocean for just a bit and was really cold when she came out. She ended up playing very happily up in the warm dry sand. I walked up there with her and buried her legs for the fun of it. Ayden Jane respond with a sigh in her voice, "Oh, thank you mommy." I guess it felt like a warm blanket!
I think by the end of the week we will be potty training. I must say I am not looking forward to it. Ayden Jane is very head strong and wants to do things her way in her time... On the other hand, she now freezes and announces when she uses her diaper, "I stink. I go potty." (Usually she is just wet) She then proceeds to attempt to take off her diaper and climb on the potty. This is also followed by all of the animals or babies she is playing with needing to be 'changed' as well. Okay that I am ready to be done with. I guess it is time. Wish me luck!
As far as temperature goes, it is HOT in SC this time of year. Oddly enough, Ayden Jane does not really seem too affected by the heat right now. A lot of kids with PWS seem to over heat easily and last summer we did have trouble with that. The funny thing I have noticed this spring and summer is that Ayden Jane gets cold while swimming if the water is even a bit cold. At first it was the pool. She would swim for a bit and then hit a definite, "I cold. I all done." She would shiver and take a while to warm up. The ocean was still a bit nippy, even for me so she just was not in it too much. I was surprised today when we were at the beach. Ayden Jane was in the ocean for just a bit and was really cold when she came out. She ended up playing very happily up in the warm dry sand. I walked up there with her and buried her legs for the fun of it. Ayden Jane respond with a sigh in her voice, "Oh, thank you mommy." I guess it felt like a warm blanket!
I think by the end of the week we will be potty training. I must say I am not looking forward to it. Ayden Jane is very head strong and wants to do things her way in her time... On the other hand, she now freezes and announces when she uses her diaper, "I stink. I go potty." (Usually she is just wet) She then proceeds to attempt to take off her diaper and climb on the potty. This is also followed by all of the animals or babies she is playing with needing to be 'changed' as well. Okay that I am ready to be done with. I guess it is time. Wish me luck!
Tuesday, June 22, 2010
SENSORY INTEGRATION
Well, Ayden Jane is at it again! She is absolutely out of control, wild right now. It is like she can barely stand to be in her own skin. What does that look like? Well, let me take you back to Sunday. She was a bit loud and obnoxious at home. She seemed to bang things, trip over things, talk really loud and was even clenching her teeth. She had been at the PT's house for the evening the night before and was playing with her 3 adorable, energetic little ones so at first I joked that it was just too much therapy for one night. Later in the day, Kayla looked at me and said, "seriously Mom. Don't leave her there again." She was joking, but Ayden Janes craving for deep input by wanting to wrestle, chase and 'play catch' was driving her nuts.
I took Ayden Jane to the playground and I discovered just how wild she was. She wiped out pretty major a couple of times because she just would not slow down enough to stay under control when doing things that were a bit challenging. Then she climbed onto a platform about waist high on me, grinned and took a flying leap! I caught her in mid air and she was mad. Are you kidding me? 2 yr. olds should not be jumping from table height!
It gets worse. There are monkey bars there and a 3 rung ladder to get up to them. The rungs are far enough apart that when she is standing on the top rung she is head and shoulders taller than me. She zipped up the ladder and then jumped for the monkey bar she couldn't quite reach. Yep. I caught her again. Next time she zipped up the ladder and then tried to spin and jump off the other direction so I couldn't catch her. Luckily I am still slightly quicker. Lastly, she zipped up and then tried to push me away so she could make her leap. Crazy kid. I was done with this game so we found some other things to do and finally went home.
So it is 2 days later and only a few bruises and scrapes later. (and one tired Mom) Other interesting differences out of this, she gets REALLY irritated if you touch her lightly. She wants lots of hugs. (the best part) She gets frustrated easily. She is clingy to me. HATES the thought of a nap.
What do I see emerging? Well, we have had some perfect, clear, complete sentences. I think, however, the neuronal connections being made relate to fine motor skills. The only thing that keeps her still is to do tiny fine motor activities. Jen gave us some little beads that pop together. Last Wed. in PT she occasionally had success. Today she sat and put them all together, pulled them apart and did it all over again in a row! She is also now stringing tiny beads. She is obsessed with markers...
Well, it is usually a 2 week turn around so we will see if the pattern continues!
Just for fun. This is what I found in my kitchen after Ayden Jane was finished playing.
Monday, June 21, 2010
Mckenna and Ayden Jane
We often head to the playground at the elementary school across the street from our neighborhood. There are lots of fun things to do, but mostly Ayden Jane loves just being a big kid and doing anything Mckenna does.
Mckenna also loves to take random pictures with my phone while riding in the car. Here are a couple that just crack me up.
Mckenna also loves to take random pictures with my phone while riding in the car. Here are a couple that just crack me up.
Eyes
There has been a bit of talk lately about PWS and eye problems. I decided to have our pediatrician refer us to a local opthamologist to check her out. Today was the day and it was great. The eye Dr. started our conversation with, "wow. she doesn't look anything like the PWS patients I've seen before." I took that as a grand compliment. I do find the kids with PWS to be beautiful children, but at this point I love to hear that Ayden Jane looks like your average 2 yr. old. There I was all ready for my usual spiel on PWS. You know. First the quick over view version and then the more detailed one once you figure out if this is a Dr./person who really cares to know any more than that.
He declared her eyes straight on, which is fabulous news. He said that there may be a mild refraction, but likely the slightest he has seen in a patient with a history like hers. We return in July after a few days of drops to check on that more closely. Hopefully she will glide by that one just as easily. On to endocrinology on Wed.
He declared her eyes straight on, which is fabulous news. He said that there may be a mild refraction, but likely the slightest he has seen in a patient with a history like hers. We return in July after a few days of drops to check on that more closely. Hopefully she will glide by that one just as easily. On to endocrinology on Wed.
Saturday, June 19, 2010
Long Trips
When Ayden Jane was still in her first year or so I dreaded traveling. It was just so stressful. Too much car seat time seemed to make Ayden Jane lose the little muscle tone she was developing, keeping her from over heating in her car seat was a struggle, portable food for her was difficult, not wanting the other kids to eat stuff around her in the car was hard on them, having to pack all the supplements and foods she eats, worrying about the 'wasted' therapy time sitting in the car seat... Uggg. Just easier to stay home.
Well, staying home is not really an option with my active 'big' kids. I did manage to perfect the day trips of 2 to 3 hours away from home for soccer or doctors appointments. I found little systems that worked for us and Ayden Jane was less affected by the car seat time. Now I would say that these sorts of trips are routine.
Last weekends trip to Baltimore for my brother's wedding was definitely pushing me into new territory. I must say, BIG success. I had a great time with Ayden Jane, she slept very little in the car thanks to the undivided attention of Grandma and seemed to return to PI unaffected by the whole thing. One thing that has made it easier is that I now only 'do' supplements morning and night and if she misses a dose she seems not to be phased by it. That takes lots of pressure off. The other thing is that new places, sights and sounds do not seem to 'shut her down' as they used to. When younger, it seemed like she just could not process all the newness and still have movement and personality... let alone language. This weekend I think she did great! She was right at home in the hotel, loved the boats and things in the inner harbor, played a little in the fountain, made fast friends with David and Daniel and generally just was not thrown by the whole experience. Not that I am planning to travel across country any time soon, but it is nice to feel confident that I could do it if I felt like it!
Well, staying home is not really an option with my active 'big' kids. I did manage to perfect the day trips of 2 to 3 hours away from home for soccer or doctors appointments. I found little systems that worked for us and Ayden Jane was less affected by the car seat time. Now I would say that these sorts of trips are routine.
Last weekends trip to Baltimore for my brother's wedding was definitely pushing me into new territory. I must say, BIG success. I had a great time with Ayden Jane, she slept very little in the car thanks to the undivided attention of Grandma and seemed to return to PI unaffected by the whole thing. One thing that has made it easier is that I now only 'do' supplements morning and night and if she misses a dose she seems not to be phased by it. That takes lots of pressure off. The other thing is that new places, sights and sounds do not seem to 'shut her down' as they used to. When younger, it seemed like she just could not process all the newness and still have movement and personality... let alone language. This weekend I think she did great! She was right at home in the hotel, loved the boats and things in the inner harbor, played a little in the fountain, made fast friends with David and Daniel and generally just was not thrown by the whole experience. Not that I am planning to travel across country any time soon, but it is nice to feel confident that I could do it if I felt like it!
Friday, June 18, 2010
Flexibility (the emotional/schedule kind)
Now honestly, this word flexibility sort of scares me. Not being flexible, the thought that I would have a child that might not be. As I listen to older parents speak about their kiddos, I often hear about the anxiety and resulting behavior problems that come with change or uncertainty. The best solution to such things is, of course, structure, routine and schedules. Now I could live with such things just fine if our world operated that way. I tend to like to be able to plan, enjoy a sense of order and can even appreciate a land of color coded labels. However, I chose not to marry a structured person (which has been great for me) and we just have too many kids at differing stages of life for Ayden Jane to have a structured world. I attempt to start each day with a plan, but usually by lunch time the plan is barely recognizable. (Especially in summer!)
So how does Ayden Jane do with this? So far she has been awesome. She has learned to live a life on the go. We generally give her the job of announcing when it is time to leave and hear her use her authoritative tone to say, "Mckenna, time to go. Let's go Mckenna." (insert any name and it works. She has no problem even bossing Gary and I) With that she is more than willing to head out the door. When we arrive at our destination, she will frequently check to be sure every one is accounted for. The kids find it funny that she is constantly making sure they did not get lost somewhere. Often when the kids are not home, she will say things like, "Noah at soccer." or "Kayla workin'" You know you are in with Ayden Jane when she is expecting you to report your wear abouts.
We have learned that you don't tell Ayden Jane something that you know she will want to do if you cannot deliver. I have to admit, though, that she is no worse about this than Kayla was when she was little. Only difference was that Kayla would be sad, sad, sad but Ayden Jane does more of a sad, sad, mad, mad, mad.
I guess it all comes back to the question. Is it PWS or just being two.
So how does Ayden Jane do with this? So far she has been awesome. She has learned to live a life on the go. We generally give her the job of announcing when it is time to leave and hear her use her authoritative tone to say, "Mckenna, time to go. Let's go Mckenna." (insert any name and it works. She has no problem even bossing Gary and I) With that she is more than willing to head out the door. When we arrive at our destination, she will frequently check to be sure every one is accounted for. The kids find it funny that she is constantly making sure they did not get lost somewhere. Often when the kids are not home, she will say things like, "Noah at soccer." or "Kayla workin'" You know you are in with Ayden Jane when she is expecting you to report your wear abouts.
We have learned that you don't tell Ayden Jane something that you know she will want to do if you cannot deliver. I have to admit, though, that she is no worse about this than Kayla was when she was little. Only difference was that Kayla would be sad, sad, sad but Ayden Jane does more of a sad, sad, mad, mad, mad.
I guess it all comes back to the question. Is it PWS or just being two.
Monday, June 14, 2010
Visit with Friends
Ayden Jane and David having a great play date.
I found myself in the Baltimore area this past weekend for my brothers wedding. After a looong drive Friday, Cyndi volunteered to let Ayden Jane burn off some steam at their home on Sat. morning. It was a great time. Ayden Jane now lists David and Daniel among her friends and asked this morning to go to David's house. Hard to explain to her that it would require about 9 hours of driving! We jumped on the trampoline and Ayden Jane and David both climbed in the ball. We walked a bit and saw the horses in the back yard. Very cool. (Ayden Jane ate the carrot she was given to feed the horse, but I think the horse got plenty.)
Ayden Jane discovered a scooter she can work by herself and despite a few crashes did a great job with it.
Other than the conference last year, it was the first time Ayden Jane and I got together with another PWS family. It was great. No stress here! Hard to explain, just relaxing and comfortable. Thanks Olivacz family!
I found myself in the Baltimore area this past weekend for my brothers wedding. After a looong drive Friday, Cyndi volunteered to let Ayden Jane burn off some steam at their home on Sat. morning. It was a great time. Ayden Jane now lists David and Daniel among her friends and asked this morning to go to David's house. Hard to explain to her that it would require about 9 hours of driving! We jumped on the trampoline and Ayden Jane and David both climbed in the ball. We walked a bit and saw the horses in the back yard. Very cool. (Ayden Jane ate the carrot she was given to feed the horse, but I think the horse got plenty.)
Ayden Jane discovered a scooter she can work by herself and despite a few crashes did a great job with it.
Other than the conference last year, it was the first time Ayden Jane and I got together with another PWS family. It was great. No stress here! Hard to explain, just relaxing and comfortable. Thanks Olivacz family!
Thursday, June 10, 2010
Abs looking better, but what about those hips?
I am heading out of town tomorrow morning for my brother's wedding and I haven't even started to pack but I just had to do a quick update.
PT this week was great. Jen definitely feels that Ayden Jane is getting stronger and is very impressed with the ab work. The belly does not poke out so much and AJ is getting pretty good at sit ups on the exercise ball. I am not sure I could do them! I think the bump in gh has really settled in. I did ask her though about the way that AJ is bringing her knees together when she is bending ready to jump, and even some when running. Looks like a bit of hip weakness is back and she is slightly rotating when she does these things. It just looks to me like a 'less athletic' stance. You know, running a bit like your legs aren't quite under control. Now, to just maintain the abs and strengthen the hips at the same time. We shall see.
On the speech front, I think there have been some noteworthy changes. One example was in the car the other day. Ayden Jane saw a scrape on Mckenna's chin and said, "Mckenna have a owy on you chin. Does it hurt?" That second sentence is the one that is new. AJ has become conversational and asks questions... Of course, only when she is in the mood, but it is wonderful to know she CAN...
Lastly, food. Lately Ayden Jane has been putting off eating until she is completely unreasonable. I know this sounds nuts, but today she ate about 1 of her 2 scrambled eggs and the bit of applesauce I gave her to get the supplements down for breakfast. Then she did eat some almonds and tomato for snack at school about 11. She did not eat a THING until 3:30 after that and even at that I had to cave and give her a piece of dark chocolate to even get her to think about food. Finally, after I demanded she eat a hard boiled egg white if she wanted to go swimming she got into the swing of things. She followed up the egg with some chicken salad and off to the pool we went. I managed to get some avacado in her with supplements before bed. The problem with this is that she becomes a whiny, unreasonable grouch when this happens. I try really hard not to fall for the, just give her something... routine. Usually, I can get away with giving her some fruit to get her going, but recently she will just eat the blueberries and say all done. Grrrrr. I know, enjoy it now. Soon enough...
PT this week was great. Jen definitely feels that Ayden Jane is getting stronger and is very impressed with the ab work. The belly does not poke out so much and AJ is getting pretty good at sit ups on the exercise ball. I am not sure I could do them! I think the bump in gh has really settled in. I did ask her though about the way that AJ is bringing her knees together when she is bending ready to jump, and even some when running. Looks like a bit of hip weakness is back and she is slightly rotating when she does these things. It just looks to me like a 'less athletic' stance. You know, running a bit like your legs aren't quite under control. Now, to just maintain the abs and strengthen the hips at the same time. We shall see.
On the speech front, I think there have been some noteworthy changes. One example was in the car the other day. Ayden Jane saw a scrape on Mckenna's chin and said, "Mckenna have a owy on you chin. Does it hurt?" That second sentence is the one that is new. AJ has become conversational and asks questions... Of course, only when she is in the mood, but it is wonderful to know she CAN...
Lastly, food. Lately Ayden Jane has been putting off eating until she is completely unreasonable. I know this sounds nuts, but today she ate about 1 of her 2 scrambled eggs and the bit of applesauce I gave her to get the supplements down for breakfast. Then she did eat some almonds and tomato for snack at school about 11. She did not eat a THING until 3:30 after that and even at that I had to cave and give her a piece of dark chocolate to even get her to think about food. Finally, after I demanded she eat a hard boiled egg white if she wanted to go swimming she got into the swing of things. She followed up the egg with some chicken salad and off to the pool we went. I managed to get some avacado in her with supplements before bed. The problem with this is that she becomes a whiny, unreasonable grouch when this happens. I try really hard not to fall for the, just give her something... routine. Usually, I can get away with giving her some fruit to get her going, but recently she will just eat the blueberries and say all done. Grrrrr. I know, enjoy it now. Soon enough...
Sunday, June 6, 2010
You Might be a PWS Parent if...
(Stolen from divingintothewaves.com. A great window into another family dealing with PWS. Check it out if you love cute kids. Ali's are irresistible)
Another PWS mom friend posted this question on her Facebook wall and tons of other PWS parents pitched in to fill in the blank. The answers were all true and hilarious and sad at the same time. I know some of them won't make sense if you are not familiar with all the ins and outs of the syndrome, but here it is anyway - a great window!
You Know You're a PWS Mom/Dad If...
-you are driving with one kid in the car and you wonder which therapy you are going to.
-you occasionally carry things like vegetables and tofu with you to add to restaurant meals.
-you are actually excited when your baby cries over something or wakes you up in the middle of the night!
-your child has had so many x-rays,ultrasounds and MRI's you wonder if they will develop superpowers.
-toys aren't just toys anymore. You look at them as "what will this teach my child to do?-you critique every parent's use of food with their children.
-you defend growth hormone and hate athletes for giving it a bad rap.
-it kills you to see babies younger than your own doing more things.
-you've tried some kind of supplement in the hopes it will help.
-you don't mind waiting an extra 20 minutes to get out the door so your child can work on fine motor skills dressing herself.
-you can count calories in your sleep.
-you cheer your toddler on for climbing the stadium steps and forget to watch your teen who is actually playing.
-you talk about your kids therapy like every kid has it and get odd looks from your friends.
-you 'accidentally' drop your child's toy on the floor over and over again when he picks it up and gives it to you to work in some PT with bending and squatting...
-you dread your child's birthday party because you know he will be begging every adult for another piece of cake when you're not looking!
-you hate holidays because they all involve massive amounts of food.
-you use an inflatable pool float inside for prop sitting, crawling position, and who knows what else.
-you let your baby pull your hair because you're just glad they're reaching for something.
-you consider pureeing peas and "icing" steamed broccoli with it for a first birthday cake (lol)...
-you treat each milestone like an Olympic gold medal.
-you consider putting a giant sticker on their shirt that says "Please don't feed me anything, my mommy will kill you" when sending them to church daycare.
-you want to slap the next person that says "my, she's fed well" or "look at those chubby cheeks" even though she's in the 50th % for weight.
-you walk into the hospital and all the staff call your child by their first name before you even make it to the reception desk.
-the first thing you always buy when you arrive in a new country on vacation is a scale.
-you jump when the oven timer goes off because it sounds like the apnea monitor alarm.
-you still giggle sometimes when he cries because you remember a time when he never cried at all & you actually wanted to hear it.
-you have more Facebook friends who are also PWS parents than friends from school/work.
-you want to eliminate gumball machines from the face of the earth. And have healthier food options available everywhere. Let's start with schools for instance, is that so hard???
-you stand in the pantry with the light off to snack on chips! lol-you get out the camera when they have figured out how to climb onto the dining room table.
-you are encouraging them to jump on their bed, while your friends are telling their kids to stop.
-you don't think it's a compliment when someone tells you, "He's such a quiet little boy".
-you prepare for an overnite every time you go to the E.R.
-you know which restaurants serve steamed veggies.
-you check out "healthy recipes" on the web.... and end up thinking, who are they kidding, this isn't healthy enough!
-you start guessing the portions of your food on your plate..hmm, that looks like about 1/2 cup, or I had around 1200 calories today.
-you give your child their HGH injection and stop feeling super bad for doing it knowing it's for their benefit.
-you actually got excited when they threw their first tantrum because they were just being a typical 2 year old. Then quickly thought about the endless tantrums to come....
-you second guess everything - is this age appropriate behavior or PWS?
-are amazed if they vomit.
-you dread telling them about a fun event too early, because they will talk and talk and talk about it to no end. Really wears me out :0) but at least she can talk now:)
-you dread going to the grocery store because it's a 2 hour event after you read all the labels
-*you* start suddenly gaining weight for no apparent reason and you think, Ah, I must be in stage 2A. :\
-you tell them at every doctor's visit that their baseline body temp really IS that low and then they take the kid's temp and say, "oh, he must be cold." Ugh!
Another PWS mom friend posted this question on her Facebook wall and tons of other PWS parents pitched in to fill in the blank. The answers were all true and hilarious and sad at the same time. I know some of them won't make sense if you are not familiar with all the ins and outs of the syndrome, but here it is anyway - a great window!
You Know You're a PWS Mom/Dad If...
-you are driving with one kid in the car and you wonder which therapy you are going to.
-you occasionally carry things like vegetables and tofu with you to add to restaurant meals.
-you are actually excited when your baby cries over something or wakes you up in the middle of the night!
-your child has had so many x-rays,ultrasounds and MRI's you wonder if they will develop superpowers.
-toys aren't just toys anymore. You look at them as "what will this teach my child to do?-you critique every parent's use of food with their children.
-you defend growth hormone and hate athletes for giving it a bad rap.
-it kills you to see babies younger than your own doing more things.
-you've tried some kind of supplement in the hopes it will help.
-you don't mind waiting an extra 20 minutes to get out the door so your child can work on fine motor skills dressing herself.
-you can count calories in your sleep.
-you cheer your toddler on for climbing the stadium steps and forget to watch your teen who is actually playing.
-you talk about your kids therapy like every kid has it and get odd looks from your friends.
-you 'accidentally' drop your child's toy on the floor over and over again when he picks it up and gives it to you to work in some PT with bending and squatting...
-you dread your child's birthday party because you know he will be begging every adult for another piece of cake when you're not looking!
-you hate holidays because they all involve massive amounts of food.
-you use an inflatable pool float inside for prop sitting, crawling position, and who knows what else.
-you let your baby pull your hair because you're just glad they're reaching for something.
-you consider pureeing peas and "icing" steamed broccoli with it for a first birthday cake (lol)...
-you treat each milestone like an Olympic gold medal.
-you consider putting a giant sticker on their shirt that says "Please don't feed me anything, my mommy will kill you" when sending them to church daycare.
-you want to slap the next person that says "my, she's fed well" or "look at those chubby cheeks" even though she's in the 50th % for weight.
-you walk into the hospital and all the staff call your child by their first name before you even make it to the reception desk.
-the first thing you always buy when you arrive in a new country on vacation is a scale.
-you jump when the oven timer goes off because it sounds like the apnea monitor alarm.
-you still giggle sometimes when he cries because you remember a time when he never cried at all & you actually wanted to hear it.
-you have more Facebook friends who are also PWS parents than friends from school/work.
-you want to eliminate gumball machines from the face of the earth. And have healthier food options available everywhere. Let's start with schools for instance, is that so hard???
-you stand in the pantry with the light off to snack on chips! lol-you get out the camera when they have figured out how to climb onto the dining room table.
-you are encouraging them to jump on their bed, while your friends are telling their kids to stop.
-you don't think it's a compliment when someone tells you, "He's such a quiet little boy".
-you prepare for an overnite every time you go to the E.R.
-you know which restaurants serve steamed veggies.
-you check out "healthy recipes" on the web.... and end up thinking, who are they kidding, this isn't healthy enough!
-you start guessing the portions of your food on your plate..hmm, that looks like about 1/2 cup, or I had around 1200 calories today.
-you give your child their HGH injection and stop feeling super bad for doing it knowing it's for their benefit.
-you actually got excited when they threw their first tantrum because they were just being a typical 2 year old. Then quickly thought about the endless tantrums to come....
-you second guess everything - is this age appropriate behavior or PWS?
-are amazed if they vomit.
-you dread telling them about a fun event too early, because they will talk and talk and talk about it to no end. Really wears me out :0) but at least she can talk now:)
-you dread going to the grocery store because it's a 2 hour event after you read all the labels
-*you* start suddenly gaining weight for no apparent reason and you think, Ah, I must be in stage 2A. :\
-you tell them at every doctor's visit that their baseline body temp really IS that low and then they take the kid's temp and say, "oh, he must be cold." Ugh!
Saturday, June 5, 2010
PWS Glasses
I am not referring to glasses for my child with PWS, I am eluding to how, as a parent, I feel I am always looking at Ayden Jane through 'PWS glasses.' I have no idea if this will make sense, but on the off chance it does, here goes.
We are blessed by how great Ayden Jane is doing. Not that she would be less of a blessing to our family if she were not, just that so far, she seems less affected by many of the things that come with PWS. We have so much to be thankful for. We have not done anything more than any other parent of a child with PWS, it just seems that the help is working. She has learned to do so many things and really can do most anything that typical kids her age can do. It may take a bit more time but she is willing to work at anything and there is little she has not been able to conquer. So you would think that I would just live on cloud nine, count my blessings and go on my merry way. You would think...
I find, instead, that I often struggle with looking at everything Ayden Jane does 'through PWS glasses'. By that I mean if she doesn't eat enough of the things I know will help her be strong and grow I worry. If she wants two bites more than what I thought she would eat I am sure food seeking has started. When she gets tired I don't give her credit for the fact that sometimes 2 yr. olds get tired, I try to sort through the host of things that might be off.... When we go places I am on alert looking for possible food issues and forget to enjoy the day. If she wakes up at night I wonder if sleep disturbances are coming. When she throws a tantrum or gets whiny I am sure it is PWS behavior problems. If anything is off socially my brain screams autism...
I have got to learn to take those glasses off. Sometimes when your 2 a tantrum is just a tantrum, being tired is just having played hard, waking up at night is normal (like my son did forever), getting into a pantry is just being mischievous, saying words improperly is funny and normal and whining is just trying to get our way.
We just work so hard to get where we are, it feels like one 'mistake' could change everything. Yes, I know that is not logical. I know that it took hundreds of little things to get where we are and no one thing will unravel it all. On the other hand I also know that this is a battle, no, a war with many battles to fight. So how do you find rest from the fight. How do I teach Ayden Jane to fight this thing, but also find rest. I want her to know that she is first and foremost Ayden Jane a goofy, sweet, amazing miracle of a kid. I just love her and want to give her the best possible start so she can let all that she is shine through.
Relax. Find Balance. Work hard but remember to take off the glasses and enjoy. It's a plan anyway.
We are blessed by how great Ayden Jane is doing. Not that she would be less of a blessing to our family if she were not, just that so far, she seems less affected by many of the things that come with PWS. We have so much to be thankful for. We have not done anything more than any other parent of a child with PWS, it just seems that the help is working. She has learned to do so many things and really can do most anything that typical kids her age can do. It may take a bit more time but she is willing to work at anything and there is little she has not been able to conquer. So you would think that I would just live on cloud nine, count my blessings and go on my merry way. You would think...
I find, instead, that I often struggle with looking at everything Ayden Jane does 'through PWS glasses'. By that I mean if she doesn't eat enough of the things I know will help her be strong and grow I worry. If she wants two bites more than what I thought she would eat I am sure food seeking has started. When she gets tired I don't give her credit for the fact that sometimes 2 yr. olds get tired, I try to sort through the host of things that might be off.... When we go places I am on alert looking for possible food issues and forget to enjoy the day. If she wakes up at night I wonder if sleep disturbances are coming. When she throws a tantrum or gets whiny I am sure it is PWS behavior problems. If anything is off socially my brain screams autism...
I have got to learn to take those glasses off. Sometimes when your 2 a tantrum is just a tantrum, being tired is just having played hard, waking up at night is normal (like my son did forever), getting into a pantry is just being mischievous, saying words improperly is funny and normal and whining is just trying to get our way.
We just work so hard to get where we are, it feels like one 'mistake' could change everything. Yes, I know that is not logical. I know that it took hundreds of little things to get where we are and no one thing will unravel it all. On the other hand I also know that this is a battle, no, a war with many battles to fight. So how do you find rest from the fight. How do I teach Ayden Jane to fight this thing, but also find rest. I want her to know that she is first and foremost Ayden Jane a goofy, sweet, amazing miracle of a kid. I just love her and want to give her the best possible start so she can let all that she is shine through.
Relax. Find Balance. Work hard but remember to take off the glasses and enjoy. It's a plan anyway.
Friday, June 4, 2010
UGG, AJ really does have PWS
Well, this was one of those mornings that PWS just slammed into me like a truck. It started as usual. Yesterday was just an easy day. Ayden Jane is looking great after the bump in gh. I can't explain what that means, just that she looks proportioned and lean and even a bit muscular. She had a great day yesterday on all fronts. She climbed and played like any active toddler at the playground. She talked Noah's and my ears off on a long drive to soccer training. She didn't finish her meals and never asked for food.
This morning I woke up about 7 to some odd noises. It seems Gary did not put up the baby gate across the hall before he went to bed. The pantry door must not have been shut tight either as the knob sticks and Ayden Jane cannot open it by herself yet. I found Ayden Jane in the living room. I also found a box of carnation instant breakfast on the sofa with the packages pulled out and 'squished' but not opened. A box of poptarts on the table. The packages were pulled out and scissors were lying next to them. (Yes, we do still have poptarts in the house) A jar of peanut butter was on the floor of the kitchen unopened with a bottle of maple syrup. A box which has 'stuff' in it that was on the pantry floor was also drug around the corner into the living room.
That all said, Ayden Jane did not actually eat anything, but it was not for lack of trying. I was surprised by her effort as the drawer where the scissors are kept was still open and is in the other room from where the poptarts and scissors lay. Also, I think she chose those things to go after, not because they are things she is not allowed, but just because they are what she could reach. (yes, I will be rearranging the cupboard today) Funny thing is, I cleaned it all up and then made breakfast. Ayden Jane didn't even finish it!!
On one hand I think her seeking was less about the actual food and more about getting into a closet that she normally cannot. I have no doubt, though, had she been able to open those packages she would have eaten her fill.
It is odd how she wakes up and is so 'independent'. She has no fear of the dark quiet house before the sun rises. She doesn't need to come find one of us... She is even quiet in her play. With the gate up, she plays in her room until Mckenna hears her and tells her to go find Mom. Then she comes in with us and reads a book or falls back to sleep. (this is for mornings when she wakes at 5 or so) Lots of mornings she sleeps sound until 7 or 8 and we are all up and about when she wakes. 2 of my other 3 kids were ones that often ended up in bed with us at those early morning hours... 4, 5 or 6. It is different though. They came stumbling in still sleepy and looking for cuddles. Ayden Jane wakes up rarin' to go looking for activity.
Now, to relax and enjoy those great days and still remember that PWS lurks at every corner. I guess routine is our friend. We have only had AJ sleeping in the other room a week or so and the baby gate routine is not yet ingrained. I just hate when PWS rears its ugly head like that. I just want to squeeze AJ and tell her I am so sorry she has to fight this thing. I know she is giving it all she has and I pray for the answers to come through research SOON! All these little kids with PWS I have met are so sweet. There is something about them that makes you just want to squish 'em and cheer for them.
This morning I woke up about 7 to some odd noises. It seems Gary did not put up the baby gate across the hall before he went to bed. The pantry door must not have been shut tight either as the knob sticks and Ayden Jane cannot open it by herself yet. I found Ayden Jane in the living room. I also found a box of carnation instant breakfast on the sofa with the packages pulled out and 'squished' but not opened. A box of poptarts on the table. The packages were pulled out and scissors were lying next to them. (Yes, we do still have poptarts in the house) A jar of peanut butter was on the floor of the kitchen unopened with a bottle of maple syrup. A box which has 'stuff' in it that was on the pantry floor was also drug around the corner into the living room.
That all said, Ayden Jane did not actually eat anything, but it was not for lack of trying. I was surprised by her effort as the drawer where the scissors are kept was still open and is in the other room from where the poptarts and scissors lay. Also, I think she chose those things to go after, not because they are things she is not allowed, but just because they are what she could reach. (yes, I will be rearranging the cupboard today) Funny thing is, I cleaned it all up and then made breakfast. Ayden Jane didn't even finish it!!
On one hand I think her seeking was less about the actual food and more about getting into a closet that she normally cannot. I have no doubt, though, had she been able to open those packages she would have eaten her fill.
It is odd how she wakes up and is so 'independent'. She has no fear of the dark quiet house before the sun rises. She doesn't need to come find one of us... She is even quiet in her play. With the gate up, she plays in her room until Mckenna hears her and tells her to go find Mom. Then she comes in with us and reads a book or falls back to sleep. (this is for mornings when she wakes at 5 or so) Lots of mornings she sleeps sound until 7 or 8 and we are all up and about when she wakes. 2 of my other 3 kids were ones that often ended up in bed with us at those early morning hours... 4, 5 or 6. It is different though. They came stumbling in still sleepy and looking for cuddles. Ayden Jane wakes up rarin' to go looking for activity.
Now, to relax and enjoy those great days and still remember that PWS lurks at every corner. I guess routine is our friend. We have only had AJ sleeping in the other room a week or so and the baby gate routine is not yet ingrained. I just hate when PWS rears its ugly head like that. I just want to squeeze AJ and tell her I am so sorry she has to fight this thing. I know she is giving it all she has and I pray for the answers to come through research SOON! All these little kids with PWS I have met are so sweet. There is something about them that makes you just want to squish 'em and cheer for them.
Wednesday, June 2, 2010
Eyes
Well, the pws board has once again been my source of information. I asked about what to watch for in kids with PWS regarding eyes. The answer came back, strabismus. I sort of knew that strabismus had something to do with a crossing eye, but that was about it. Now I know that there is also something called pseudostrabismus where it looks a bit as if one or both eyes are turned in, but there is actually no strabismus. How can this be? How can you tell the difference? Check out this website and it should become clear. (No I did not find this, a wise friend did all the leg work, but I don't think she would mind my sharing. )http://www.health.state.mn.us/divs/fh/mch/webcourse/vision/pseudostrabismus.cfm
For now I think that Ayden Jane has a touch of the pseudostrabismus, but I am still taking her to see the eye doc and let him decide. I will shine a light in her eyes a bit over the next week or so and snap some pictures if I find anything a miss to share.
For now I think that Ayden Jane has a touch of the pseudostrabismus, but I am still taking her to see the eye doc and let him decide. I will shine a light in her eyes a bit over the next week or so and snap some pictures if I find anything a miss to share.
Tuesday, June 1, 2010
Updates and Growing Up
We are about a week into the increase in gh and the addition of iron. So far, Ayden Jane has actually been sleeping more which I think is odd. Both gh and iron should theoretically give her more energy... I am just chalking it up to growing and playing hard for now. The other odd thing going on is that Ayden Jane has been THIRSTY. In the past, she would occasionally ask for a drink, but usually I would have to just keep one in front of her. She would drink her almond milk or water... but it would take a loooong time. She showed no signs of dehydration so I left it at that. This week? She has been demanding liquid and has downed 8 oz. of liquid in no time flat! I think more than double her liquid intake is notable. The only other thing different, is that Mckenna has been giving her pistachios frequently. I am going to have her cool it on the nuts and see if it is just the salt. If things don't settle after that, I will need to investigate further. grrr.
The other big news is that Ayden Jane has moved out of our room. We have not left her with us due to any concerns for her, just because we really don't have any place else to put her. Mckenna has bunk beds and we knew that AJ would be moving in, but we wanted to wait until Mckenna was done with school. Today was the day. Mckenna and I cleaned her room and moved Mckenna to the top bunk. Now that may sound like a quick thing to do, but Mckenna sleeps with her collection of stuff animals (mostly webkinz) and lets say it was like moving the animal shelter and zoo combined. After she was satisfied that all the animals were happy in thier new homes, Mckenna set up Ayden Jane's bed. It was very sweet. Mckenna has been waiting for this and is very happy to have a room mate. Those two are quite a pair. Hard to believe there are 6 1/2 years between them.
Now due to the possibility of night wanderings on Ayden Jane's part, we are putting up a baby gate across the hallway. I was a big sleep walker as was Kayla, our oldest. (just ask her how she broke her arm!) I figure between that and PWS there could be some night time action. The gate will make it so AJ can get across the hall to Gary and I, but not out to the living room and kitchen. She will often just get up and play quietly from naps... so we don't want to take any chances. We have been really lucky with AJ so far because she sleeps through the night and does not wake up too early in the am. Both are not always true of kids with PWS.
On the Momma side of it all, she was starting to look pretty big in her crib, but she looks really little in her 'big girl bed'. I guess there really aren't any more babies in the house. I even hear I will one day miss stepping on tiny little toys in my bare feet!
The other big news is that Ayden Jane has moved out of our room. We have not left her with us due to any concerns for her, just because we really don't have any place else to put her. Mckenna has bunk beds and we knew that AJ would be moving in, but we wanted to wait until Mckenna was done with school. Today was the day. Mckenna and I cleaned her room and moved Mckenna to the top bunk. Now that may sound like a quick thing to do, but Mckenna sleeps with her collection of stuff animals (mostly webkinz) and lets say it was like moving the animal shelter and zoo combined. After she was satisfied that all the animals were happy in thier new homes, Mckenna set up Ayden Jane's bed. It was very sweet. Mckenna has been waiting for this and is very happy to have a room mate. Those two are quite a pair. Hard to believe there are 6 1/2 years between them.
Now due to the possibility of night wanderings on Ayden Jane's part, we are putting up a baby gate across the hallway. I was a big sleep walker as was Kayla, our oldest. (just ask her how she broke her arm!) I figure between that and PWS there could be some night time action. The gate will make it so AJ can get across the hall to Gary and I, but not out to the living room and kitchen. She will often just get up and play quietly from naps... so we don't want to take any chances. We have been really lucky with AJ so far because she sleeps through the night and does not wake up too early in the am. Both are not always true of kids with PWS.
On the Momma side of it all, she was starting to look pretty big in her crib, but she looks really little in her 'big girl bed'. I guess there really aren't any more babies in the house. I even hear I will one day miss stepping on tiny little toys in my bare feet!
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