Sunday, February 27, 2011

Activity + Busy = Happy AJ

I have decided that for Ayden Jane the busier the better. The busier our days are, the more energy Ayden Jane seems to find.

The weather is turning to spring here and it is beautiful! As a result we are outside a lot and spring sports abound. Ayden Jane had school every day this week and something every night this week. That includes playground time at the soccer fields where Mckenna practices (story in a minute) horse back riding for AJ, 2 High School soccer games for Noah and a school program for Mckenna that Ayden Jane wiggled non stop through.

So what exactly does she do during these family activities? First up Mckenna's practice. It is a bit of a drive and Mckenna practices from 5:30 to 7:15 two nights a week. Yep, nearly 2 hours. The best thing is that there is a great playground there. It has several slides, lots of bars to climb, swings... (I will try to remember to take pictures one of these nights). Ayden Jane can make her way up all the ladders and bars by herself and other than one really steep, fast slide, she is pretty safe. Not that I stop her from the fast slide, it just makes me nervous. The faster the better as far as Ayden Jane is concerned! So at the last practice I was talking to a friend watching Mckenna and took my eye off Ayden Jane who was crawling through a tunnel... Next thing I know I hear a familiar voice calling Momma, Momma. I turned and sure enough, it was AJ. She had climbed the ladder to the monkey bars. You know, the type that you hang and go across. Climbing the ladder was not new, but hanging from the first bar with no hope of getting her feet back to the starting point was. I ran over and started to get her down. She yelled, "not down, just help me go across." I would say that she plays hard about 45 min. Then we have a snack of nuts or something. She will venture back out for another 20 min. or so til Mckenna is done. It is like an added hour to hour and a half of therapy 2 times per week!

Noah's High School games are a bit different. Obviously there is not a playground. For the most part of the nearly 2 hr game she will run up and down the handicapped ramp and climb the bleachers. We were there Friday night for a late game and she was still running around at 9:30 when the game ended. There are some other younger siblings that she plays with, but mostly she just enjoys being outside and running free.

Sat. we took the drive to Charleston for Mckenna's soccer games (2 of them). She was amazing. Any 3 year old would have the right to get fussy during a full day on the side lines not to mention the night she had before. She just made an adventure out of it. One field had some small bleachers so off she went to climb. The other field had woods on 3 sides so AJ "played in the woods". There was a small path and she went about 3 feet deep into the woods but thought she was deep in the black forest. She found sticks and dug in the dirt. She thought it was great. She also kicked balls with the other kids and played with her silly bands. Not a complaint from her all day.

Here we are at Sunday. She was great at church and I figured we'd get a big nap out of her today for sure. Nope. She was outside having so much fun with Mckenna and the neighbor boy on the trampoline I just didn't have the heart to make her come in. At 5 she asked to take a nap, but I took her to the playground instead. Too late to nap, too early for bed! She has mastered a unique slide where you wrap your legs around the outside, lean back and hope for the best. It starts higher than I can reach, but I was instructed by AJ to, "go away" and let her do it all by herself. I had to make her leave the playground at6:30. Here is hoping it won't all catch up to her tomorrow at school! Oh, or at the soccer field tomorrow night... here we go again.

Thursday, February 24, 2011

Put It Up High Mommy

Ayden Jane is very much trying to understand the whole food thing. She knows that there are things she does not eat because they are not good for her. She knows that she does not drink things with sugar. She tries to accept it, but since she really cannot understand the whys it is hard.

Lately I find that if something she should not have is left out, the loaf of bread after someone made a sandwich, a box of cereal... she will look at me and ask me to put it up high. She is curious and tempted to eat it. I am not sure that it is a whole lot different than any 3 yr. old would be with an open bag of cookies laid out before them, but it is interesting to see her 'tempted.' She recognizes that it is wrong and that she has a powerful desire to do it anyway.

Now what happens if I am not standing there? She eats it. As soon as she sees me she stops and hands it to me with a panicked look saying, put it up high please. At first, I have not really punished her for this as it is a tricky thing. I don't want to force her into hiding if she finds food she shouldn't be eating. We just talked about asking before we eat things.... not that what she ate was so wrong. She has gone into the cupboard a couple of times, but honestly they have been times I have been slack and the kid was hungry! She is so independent and wants to do everything herself, and it carries over into food as well.

It will be interesting to see how I work all this out. When Noah was little he ate constantly. So much so that I started the day by making an extra bowl of food he could eat snacks from during the day. It had pb&j sandwiches, fruit, pretzels... It was really just to save me from fixing things or having to say yes or no to choices 9000 times a day. I am thinking summer may have some form of this with AJ. Not that a PWS kid needs to have constant food at her disposal, but to have a designated 'bowl' to choose snacks out of at appropriate times may offer her independence and safety. I don't know, just rambling.

We are all doing our best to stay one step ahead of this thing!

Tuesday, February 22, 2011

Ayden Jane absolutely loves to be on the go. Now, whether this is a personality trait or a learned behavior I may never know. We are no doubt a busy family. I am fairly high energy (okay, I trained for a marathon...), Noah is definitely high energy, Mckenna goes pretty well non stop and Kayla is a different busy, but cannot stand to have nothing to do. Result? Days like today.

Ayden Jane had speech before school, then school 'til 12 with a 1/2 hour music class after school. We came home for lunch and her first question was if we could go out and bounce before we eat lunch. We did, then again after lunch. Finally, she took her nap. (Pretty much 1 hour on the dot each day.) After nap we had a snack and went to horses. We returned in time to pick up Mckenna, grab some nuts and an egg to take to the High School for Noah's soccer game. We got home about 8:30 and headed to bed.

Tomorrow? Yep. Nearly as busy and Ayden Jane thrives on it!

Sunday, February 20, 2011

Marathon Mission Accomplished

Well, it was nearly 1 1/2 years in the making, but I can now officially say I finished the Myrtle Beach Marathon!

As for the nitty gritty of the running for those that are interested, I finished in 4 hrs. and 35 min. The first 20 miles went well. I was on a great pace. Then my legs and my mind started wondering why I ever thought of running a marathon! Honestly, I had a great training program and I did the best I could with it. Balancing the amount of time it takes to train for a marathon and a house full of kids meant that there were times the training just couldn't be done. Also, one of the things I really liked about the program was that it included biking into the training. I have had a couple of knee surgeries in the past and biking always makes the knee feel better than running. Problem was that I had no access to a stationary bike and the nasty winter made outdoor biking difficult. In the end, I did plenty to finish which was the point of doing it at all, but the competitive nature in me has to ask the question, what could I do it in if I trained better? Luckily, Ayden Jane has a bit of that competitive nature (ya think?) and naturally strives to do more. Unrelated to fundraising, I am thinking I will keep running and plan to work on running a good, fast half marathon before heading back to the full.

Gary and all the kids were there to cheer me on. I was so happy to see them. In many ways this journey has been primarily mine. By journey, I include the daily care of AJ, the late night research of things that might help, the dosing of supplements, the nightly injections, the dietary decisions, the daily therapy, the doctors visits, the insurance phone calls, the explanations everywhere we go, the fundraising, the running.... But, I could not have done it without them. They always seem to show up when I need them most, just like being there at mile 25. When I just cannot be a jungle gym any more, Kayla shows up and takes over. When AJ is bored with me and still needs to work on therapy, Mckenna shows up and finds crazy ways to get Ayden Jane to do 15 more. When I need to go run Noah takes Ayden Jane outside and swings her and bounces with her and wrestles with her. On nights when Gary is home, even though he is exhausted from work, he takes over bedtime routines. They all do countless more things daily to put Ayden Jane's needs first.

Today is the day after. It has all sunk in a bit, but I am sure it will take time to get there all the way. The biggest thing for me right now is relief. Ayden Jane is doing unbelievably well, my out front, constant PWS talking, fundraising.... days are ready to be put to rest. Even this morning when we attended a new church, I felt less compelled to shout from my mountain top about PWS. I know that must sound crazy. It felt a bit crazy, but it also felt great. Not that I want to deny Ayden Jane's and our families challenge with PWS, just that it doesn't seem like the first thing new people need to know about us. I guess I am just trying to find a good balance. Running the marathon, raising funds, advocating, sharing our PWS lives with everyone was the right choice. It was a necessary part of dealing with it all. I guess, it just drug on sort of long with the Marathon being cancelled last year. I am ready for Ayden Jane to just be Ayden Jane, not the our kid with PWS.

Okay, so I think this post has been in circles and has gone on long enough. I hope it made a little sense, and if not, maybe it will as I sort it all out myself in the coming months.

Friday, February 18, 2011

Marathon Eve

Gary, Ayden Jane and I went to the runners expo today to pick up my race stuff. It was a lot of fun just being around all the running stuff. I think it is actually going to happen! Ayden Jane was adorable and so she came out with a flashing ring, silly bands and a stuffed cow all for free. Gary bought me a 26.2 window sticker and another one that says "26.2 miles what could go wrong?" I told him I love them, but I am not putting them on the car until tomorrow when it is official!

I swing back and forth between thinking I will do great and convincing myself that crawling across the finish line is enough. Guess we will see tomorrow!

Thursday, February 17, 2011

39 Hours

The marathon is starting in 39 hrs. Okay, so maybe I am getting a little nervous. Mostly I have just been keeping busy with other things since this week has been mostly rest from running before the big day. I even gave the dog a haircut today to keep myself occupied!

Ayden Jane has had a fun week. Monday was Valentines, then the playground where Mckenna practices soccer. Tue. was ST, school with 30 min. music class after, horse back riding and home to house full of teens working on a project. Wed. was school, trampoline time and back to the playground in the evening. Tonight (thurs.) we are off to Noah's varsity soccer game. I know it sounds crazy, but that is just normal life here at the Gulley house. Ayden Jane LOVES the busy life. In fact, when I pick her up from school the first question is usually, where we going mom? Her least favorite answer is home, unless of course, Mckenna and her friends are there!

Finally, I am overwhelmed with the support I have received for the marathon. I mean, Ayden Jane is sweet and we do soooo need the research dollars, but it still amazes me that people with no real stake in this whole PWS thing shell out the cash. Even more amazing is that they do so with an attitude of such grace. Like they are thrilled with the opportunity to give.

No way I am coming up short Sat. morning. All 26.2, one way or another.

Tuesday, February 15, 2011

So Much to Say so Little Time

It seems that these days things I want to write down come up all day long. When I have two minutes to sit down I can't remember any of them! I will try to hit a few, but I will apologize in advance for the way this will bounce around.

First up, Valentines Day. I have to say that St. Peter's Preschool has been so great to Ayden Jane. The staff totally gets and appreciates her and the parents go out of their way to include her; even though I have not ever asked them to!! Ayden Jane had a few pieces of candy in her bag at the end of the day, but she also had play doh, a book, a pencil, a heart shaped slinky, stickers and some beads and string! I would say they are some creative parents!!

On the food front, Ayden Jane has become very aware that there are things she cannot eat. Now, this is not shocking, just that she really wants to understand.... For now the standard line is that "different people need different food to be healthy. Just like some friends cannot eat nuts, you cannot eat things with sugar and flour in them." The other food thing she has done lately is interesting. She will see bread or something she knows she cannot have and will ask me to put it up high. I think it is pretty amazing that she already knows when she feels tempted and wants me to put it out of reach. Not to say that when I am not around she wouldn't just take a bite first!

Marathon: It is just days away. I am excited as the weather looks great! I feel like I should be nervous, I know I was last year! I think, though, I am just so ready to do this thing that I'm not. It has been a year and a half in the making and I am so ready to move on! To have the marathon under my belt. Will there be more of them? That will likely depend on how Sat. goes.

Some things Ayden Jane has done lately to crack us up? Hmmm. This morning she was playing with her baby waiting for time to head to school. I left her in the living room and went to the bedroom to change clothes. It seemed really quiet so I went out to check on her and couldn't find her anywhere. I grabbed some shoes to slip my feet into to look outside and she popped through the door. I asked her what she was doing out there and she answered, "my car not cooperating. I want it to take me and baby to school." Apparently she did not feel the need for me to drive her, she was going to take her little Fred Flintstone type car and make the trip herself! Crazy kid.

Sunday, February 13, 2011

Spring, Could It Be True?

Yesterday was a great day. The sort of day so typical in our lives that it was great. Mckenna had 2 soccer games in Charleston. One at 10 am and one at 3:45 pm. We left of the fields about 8 and Mckenna was great reading books and playing with Ayden Jane the whole way there. While she played her game, Ayden Jane ate some almonds and played with her babies. AJ was so good and just ran around in the fairly warm morning sunshine. Perfect.

I was not sure what to do between games, but Mckenna wanted to eat. We found a Chik fil A and they were having a Valentines party inside. Score! There was a lady making balloon animals and there was a big craft table with all the supplies for home made Valentines. Both girls had a great time so after a looooong lunch it was back to the fields.

Gary came and met us for the second game. Ayden Jane climbed all over him and the picnic tables and benches and, well, anything she could find. She wanted me to play soccer with her and kick the ball back and forth. Let's just say I don't think she is a budding star. I do love the enthusiasm though!

Mckenna played all of both games since they did not have any subs for the game and she loved it. She played awesome and it is always a bonus when you win. They won both games. Mckenna is the only girl on the team and she is doing great. I ask her from time to time if she minds being the only girl and she just answers, "I'd rather play with the boys. I know one day I will have to switch, but I don't really want to." Go get 'em. Mostly, she is just a happy 9 year old kid who wants nothing to do with the 'girl drama'. I am definitely proud of that!

And if a beautiful soccer filled spring day with a happy side line preschooler was not enough. Ayden Jane learned to chew gum yesterday. Wooo Hoooo!!! One less thing to say no to. She was pretty hilarious though. It seemed like every 30 seconds she wanted to show me the gum was still in her mouth so we could sing and dance and celebrate like fools. I will leave you with the picture of us on the crowded sideline, celebrating gum chewing every 30 seconds.

Friday, February 11, 2011

Marathon Thoughts

One week from today will be marathon eve. The snowing out of last years marathon left me with such an unfinished feeling when the date past. It was strange... Now I feel like I have been preparing for this marathon for a year and a half! I have been mentally I guess, although I took quite a bit of time off from the running after last years non marathon.

I know that running a marathon does not solve anything for Ayden Jane, but there is something about setting out to do this and raise funds that just needs completing. Sort of like last year was a cop out. Like people donated money for the run but there was no run. Do they really care that there was no run? Do they want their money back? Of course not. Somehow though, I just need to cross that finish line to make us all square.

I wonder how I will feel after the marathon is over this year. Will I decide to never run another step? Will I be hooked forever? Will I somehow feel like I helped FPWR and really did something to improve AJ's life and the lives of all the other little ones I have fallen for over the past couple years? Or, will I again just have the, "Now what?" feeling.

Either way, the marathon will be behind me, funds will have been raised, I will have completed what I started out to do and I will be exhausted!

Thursday, February 10, 2011

Return to Soccer Season

The signs are all around. Cleats in the hallway, dirty soccer socks in the laundry, smelly soccer bags... It is also a sign of spring! Or so I tell myself. Around here spring soccer includes Mckenna playing club (games on weekends), Noah playing High School Varsity, Kayla 'managing/student trainering' for the boys teams since there is no volleyball to play and Gary coaching High School JV. Me? Hmmm. I believe it is my job to make sure every body can find what they need, have full bellies, get to the games... on time, and ENJOY. Generally, the weather will get warm and hanging out on the soccer field is a great way to wait for the ocean to warm up.

So, what about Ayden Jane? As I watch my other 3 enjoy the game, I wonder whether Ayden Jane will play. Will she want to? Will she have the ability to enjoy it if she does want to? If not, what niche will be hers? What 'side line' will I be on in 5 or 10 years? Now, these questions would be asked whether Ayden Jane had PWS or not, it just clouds the picture. There is a part of me that sees AJ as capable of anything. I mostly listen to that part because she has shown it would be wrong to sell her short! I guess, for me, the difference isn't so much wondering what niche she will find, but it is that dark little cloud that still follows us asking will she find a niche. I did not really have that thought at all with my others. I knew they were bright, athletic, good kids. Not too much musical or artistic talent, but really enough to carry them through that also if they had chosen. It wasn't a question of will they find their 'thing' in life (or if one would exist), it was just a matter of which one they would choose.

So for now? Ayden Jane will hang out on the soccer sideline with me, enjoying the fresh air and bleacher climbing. She has fun cheering on her big brother and sister and generally just being outside. She occasionally kicks a ball with me and she is definitely a left footer like her sisters! I just hope it gets warm quickly!

Sunday, February 6, 2011


So, a lot of big events happened last week along side of the mundane. First up, we were approved for coverage for gh! Now, this is a huge deal and a bit complicated. The concern started last fall when Gary switched jobs. He had an offer that was just too good to pass up, with the one drawback that the insurance coverage excluded gh... grrrr. We knew this and had been putting off full time employment there and hanging on to his old job until we finally just decided it was time. We were not sure how appeals... would go, but we couldn't find out until we actually were heading down that road. So, in Oct. we received a 3 month supply from our old insurance and took the leap. Gary's new insurance was going to change with the new year, January, so we just held out. January came, the new hospital system changed prescription drug providers! Woo hoo! Now we live in SC, our benefits company is in CA and our specialty pharmacy which actually fills our prescription is in NC. Somehow we managed to get all of them and our endocrinologist to coordinate all the proper paperwork though the course of Jan. and Tue. we received word that her gh is covered!!! Huge financial relief for us.

Then on Wed., Noah was driving with Gary. (Noah has his permit) The 1992 Toyota Camry finally decided it had had enough. The transmission went and we had to decide it's future. Now, what most of you don't know is that we also owned a Nissan Quest (definitely terminal) with 220,000+ miles. Neither of those cars have a drivers windows that work (both stuck down) or heat or air conditioning or... Gary has driven them without complaint for a long time. We were blessed to get grandma's old car which is in great shape, but he wanted the kids to be safe so they got that one. Soooo on Thurs, with the black cloud of a gh money pit gone we bought Gary a car.

Now, we did not start the day expecting to come home with a car. Gary figured he would just drive the Quest for a bit until we decided what to do but figured it was worth a look because the Quest could blow any day. Amazing, but the perfect car was there waiting. I know, that sounds ridiculous, but Gary had been looking, well, more like dreaming for a while so he was very up on what was out there. He went in with a price range (we have a great friend who has been supportive outside of the car dealership through AJ's.... life) and said show me what you have. He came home with a 2007 Ford Edge. It is by far the nicest car he has ever driven and he loves it. I love the fact that he commutes 50 miles each way through 'unpopulated' areas and I no longer have to worry about him. I don't panic when he calls me on the drive there or home, thinking the big breakdown has come. He gets home without his legs cramping from the long night on his feet and then the crammed ride home...

I had no idea the relief I would feel having the vehicle situation settled. It is stressful to be constantly worried about which car would leave who stranded where and what cash would need to be poured into the money pit to keep it running.

Friday, February 4, 2011

Preschool, Iron and Stuff

I was volunteering at Ayden Jane's school today. It is so adorable just to hang around and watch those cute little ones! It is fun to see Ayden Jane fit in so well and be so happy. Mrs. E pulled me aside for a moment to tell me what a great week or so Ayden Jane has had. I love it.

It definitely coincides with the addition of the new form of iron. I have looked at the dosage... of the iron she is getting in the new form and the dose she gets in her multivitamin. I am really beginning to think that it is less to do with total iron and more to do with form of iron. I sort of threw that question to one of our medical people and I believe the form definitely effects the absorption. So I (who, again, am just a mom) believe that Ayden Jane has just not been able to effectively absorb the iron in the multi, so is sort of not really getting that iron. The new form is obviously absorbed from the dramatic reaction. It is like AJ has been iron deficient even though she has been getting plenty of dietary iron. Just not a form she can use properly. This crazy syndrome is definitely more than enough to drive me crazy some times.

On other news, the marathon training is going well. I cannot believe it is only 2 weeks away!!!

As for the rest of the family, spring is beginning to come to life. For us that means soccer season and lots of out door play! Noah is playing for the varsity High School Team, Gary is coaching the JV team, Mckenna is back to her club soccer and Kayla decided to just hang around and help manage all of the above instead of playing. She also has her eye on the ocean temps. and waves and has plans to hit the waves with her wet suit as soon as possible and as often as possible. Can't believe that she is going off to college next year!

Tuesday, February 1, 2011

Endocrinology galore

Ayden Jane and I went to our "local" endocrinologist today. I put local in quotes because it is still a two hour drive, but totally worth it! Dr. Miller in FL is also her endocrinologist, but we do not see her too often. Mostly I keep her up on Ayden Jane's height and weight, recent lab work...and she is amazing at answering any questions I might have along the way.

The trip is never fun for Ayden Jane. Two hour drive, sit in Dr. office, chat with Dr., two hour drive. Uggg. So, what were the results? I would say that we are in good shape. Ayden Jane is 38 5/8 inches. (3' 2 5/8") and 35 pounds. The height is great as she has been gradually climbing in her percentile for growth. She is up to about 60th now. Kayla and Noah were 95 th and above growing up and Mckenna is our 80th percentile or so kid. I think AJ is just trying to be one of the gang.

Weight was a bit elevated at 35 pounds(70th percentile), but she pretty much ate and drank her way there and was not interested in going potty. I know it sound crazy, but she can hold volumes when the mood strikes. Also it has been a long cold winter and there is just not much to do inside here. I am really looking forward to seeing what she can do this summer in the pool, on the beach, on the playground... Also, if you could see and feel her, you would notice muscle mass. Yep, she is a kid with PWS, but she has some good muscle, at least in her legs. I am even having a hard time giving shots in her legs because they are too dense and the needle cannot dispense all the meds. I end up losing more than the usual drop or two. Belly? Not a chance, there is nothing there. Poor little rear end.

On the iron front, Dr. Miller explained quite a bit to me as to why I am seeing the effects that I am seeing. It is nice to know I am not completely crazy! Anyway, she also cautioned that blood levels need to be checked because iron is something that can be over done. We agreed that since I am seeing her in April (2 months) it is okay to continue for now, but she will check it in April. I am going to also back it off a bit for the couple of months and see if I can get the same results. Maybe a 1/4 tablet per day.