Thursday, December 30, 2010
Wednesday, December 29, 2010
Monday, December 27, 2010
Saturday, December 25, 2010
Thursday, December 23, 2010
Sunday, December 19, 2010
Tuesday, December 14, 2010
Monday, December 13, 2010
Wednesday, December 8, 2010
Tuesday, December 7, 2010
Sunday, December 5, 2010
Friday, December 3, 2010
Wednesday, December 1, 2010
Next physical therapy: Jen was much happier with Ayden Jane's posture this week. (I have been too) Although the tape on her legs only lasted a couple of days, the benefits seemed to last longer. Ayden Jane had turned on the tone and pretty much kept it on. So Jen's plan was to not tape her this week and see how things went with our up coming trip... Part way into therapy, however, Ayden Jane asked her, "Jen, you brought you tape?" Jen told her she thought it was in her car and asked her through a series of questions if she wanted the tape on her and where. Ayden Jane was asking for tape on her legs. I believe this is a bit odd as Jen was surprised she would ask to be taped. Ayden Jane does seem to have a good ability to tell in her own way what she needs though. After taped, she again played with her balance a bit and gave Jen a laugh. Then she proceed to do a great job in therapy. I think my favorite was when Ayden Jane again became LOUD like she did after last weeks tape and Jen was able to witness and get a good laugh out of the tapes side effects.
So the plan for the trip this weekend is that we will leave about 12. I will take Ayden Jane to the park, bounce on our trampoline, go swimming... whatever works that morning to wear her out and be sure she is as 'on' as possible. Then she should nap at some point on the trip. About 2 1/2 to 3 hours in we will stop and stretch our legs... Then on to the last hour of the trip. We will be on a soccer field for about 2 1/2 hours so I will be sure to bring a few things for her to do. We will get dinner before heading back and it should be her bedtime by the time we are on the road again. Sunday we will know if car seat time is a major problem or if it was just the quantity and timing of the last trip that caused the problem.
Finally, school: Another student in Ayden Jane's class had a birthday this week. It came with cupcakes... for the kids. I had put some grain free mini muffins in the freezer that Ayden Jane calls cupcakes and told the teachers to give her 2 in place of whatever 'treat' was brought. I hear it went great. So far so good on that front. I have found the easiest place for problems to occur is in the liquids. I am not sure what to do about that, but I may end up sending in some almond milk too. Ayden Jane just does not really like water, okay she barely tolerates it without 'spiking' it. It is amazing how little of something I can put in it and she will be thrilled. Trying to get the teachers to understand that AJ can drink water with a dash of juice, not watered down juice. I guess I should send in a Tbs. and tell them she can have this much juice in her water. Hmmm. Just might try that!
Friday, November 26, 2010
Thursday, November 25, 2010
Wednesday, November 24, 2010
Tuesday, November 23, 2010
Sunday, November 21, 2010
Wednesday, November 17, 2010
Tuesday, November 16, 2010
Sunday, November 14, 2010
Friday, November 12, 2010
Now on to the not so cute. Ayden Jane definitely has some behavior issues. Mostly, they center around her ability to suddenly freak out when things don't go her way or she want something and the answer is no. The one that drives Gary the craziest is when you attempt to help her and she screams as though injured or at least insulted. No this is not entirely surprising as she is 3. I guess what is odd with AJ is how quickly she reacts this way. For the most part, I try not to appease the panic, but to tell her I cannot understand what she wants when she talks like that. Or to calm down and use big girl words. Or just plain, stop whining and tell Mommy what you need. She is capable of doing it now for the most part. She will still push beyond this (and cause Gary to nearly flip) but I think she is at a point where she can really understand and learn to control herself. Not sure how to make the leap from getting her to calm down and talk to us to catching herself and using words first. I think that battle is one that will have to come down the road just a little bit.
It reminds me of when the older kids were little and they never remembered to say please without prompting. Example: Mom, I want an apple. Me: How do you ask? Kid: Please can I have an apple? Me: yes. I moved to this: Mom, I want a snack. Me: you did not use your manners. Go play and try it again in a little while remembering to ask right the first time. 5 min. later, Kid: (amazingly) Mom, may I please have a snack
It is not the same thing, but I think the same concept will need to be applied. For now, I am in the prompting phase. It is all AJ can handle. Hopefully, she will 'prompt' herself, but if not I will have to figure out how to crank it up a notch to help her learn to do so. (It will greatly improve Gary's sanity)
Wednesday, November 10, 2010
Tuesday, November 9, 2010
Ayden Jane was absolutely hilarious tonight, but my heart cannot stop thinking about this. Ayden Jane's antics can be the topic of tomorrow.
Baby boy "Luke" born September 7, 2010
Born full-term at 39.5 weeks
6 lbs 4 ozs
Baby Luke was diagnosed with Prader-Willi syndrome. He was discharged from the hospital on October 25th, and is with a temporary care family. He is being fed by a g-tube and is doing very well. A , occupational therapist, and physical therapist have been working with him weekly. Both birth parents continue to express a strong interest in making an adoption plan for Luke.
Birth parents are educated professionals. Birth mom received excellent adoptive family residing anywhere in the USA. Their number one concern is that an adoptive family will have a great deal of knowledge about Prader-Willi syndrome and be ready to offer a structured environment in a loving home to their son with full understanding of challenges the child may face. Birthparents are not requesting an .of this planned pregnancy. No history of alcohol or drug usage. The birthparents are willing to consider an
Please let us know as soon as possible if you would like to be considered asfor this little boy.
Leslie Wright, MSW
Birth Parent Counselor
Family Resource Center
Monday, November 8, 2010
Saturday, November 6, 2010
Thursday, November 4, 2010
Wednesday, November 3, 2010
Tuesday, November 2, 2010
So, what did we do? Divide and conquer. We decided that Ayden Jane was just too young to really understand the whole trick or treating thing and we had another option so we went with it. Mckenna wanted to trick or treat with friends so she and Gary did that.
Let's first talk costume. AJ wanted no part of the costume. Her sister Mckenna was all decked out in her costume as a can of bug spray, but AJ was not interested in dressing up. I am sure it is the result of her latest little sensory spurt as she is back to asking for tags to be cut out, if clothes are itchy before putting them on, complaining and yet obsessed of all things texture... She decided she wanted Kayla to paint butterfly's on her cheeks and was thrilled with that so we were all happy.
AJ, Kayla and I went to a fall festival which was basically loads of bouncy houses, slides and obstacle courses. Hmmm. I'd say it was basically the choice of therapy over candy. Good choice. Anyway, AJ had a blast and especially loved the long caterpillar looking tunnels. She went over and over. Honestly I think she probably took 50 turns on the slides, tunnels, jumpy houses... by the time the night was over. The candy is given out in a little bag at the end at a separate area that I never even saw. Great fun with no worries! As a treat on the way home we went through McDonald's and got 'apples and nuts'. Otherwise known as the fruit and walnut salad. AJ does not eat the yogurt, but the apples, grapes and walnuts are a big treat to her. Perfect evening.
Not sure what the future will bring, but I foresee trick or treating a bit but using the Halloween Fairy or Great Pumpkin trick. Let her choose a cupful of treats to keep but putting the rest out on the porch to be replaced by a present. I think I would have gone for that myself as a kid! I know Mckenna will go for it with us if needed. I would likely amend it a bit as well and have things like dark chocolate almonds that she loves, but I am more comfortable with as part of her cup of treats.
Monday, November 1, 2010
We are also in the process of putting up a good climbing rope in the back yard. You know, the kind from gym class when we were kids. Of course, my luck, AJ will get up the rope and decide to just let go to get down! Okay, let me rephrase. We we are also putting up a short climbing rope in the back yard. I think a gymnastics class would be perfect for her at this point, but it is just not really an option. for us right now so we are attempting to bring a bit of gymnastics to her.
On Saturday I took Noah to his soccer games a few hours away and, drum roll please, left AJ here in Pawleys Island. Yep, we are pretty sure it is the longest I have left AJ in her 3 year life. It was nice to just go with Noah. No extra clothes, just in case, no coolers with food for the day, no toys to entertain or therapize in the car... Just Noah and me. (Yes, I missed her) So by noon I received a phone call from Gary filling me in on their morning. Ayden Jane and Mckenna were 'helping' Gary work in the yard and do some laundry. Apparently, Ayden Jane decided to take over the laundry herself. She slipped off and by the time Gary caught up with her she had opened the laundry soap and poured it into the cup (and all over the floor) and promptly put it in the dryer. Hey, she couldn't reach the washing machine! Luckily there were some towels in it at the time so no real harm done. Of course, Gary's progress came to a screeching halt. He took care of that little episode and resumed yard work. They were filling up his van with a load for the dump (yes, we take our trash to the dump ourselves, no garbage man) and of course the girls were again 'helping.' Ayden Jane was happy as can be when Gary noticed her hands were white. Yep. He was throwing away an old can of paint that was, apparently, not completely empty. She was so proud of herself for how well she painted the back seat! Not to worry, the car is awaiting it's own trip to the junk yard as it is terminal and has 260,000 plus miles on it.
Yep, all that and it was still before noon!! Well, they are good examples of why Kayla calls her ninja child. She can silently get into more trouble than you can imagine!
Thursday, October 28, 2010
Tuesday, October 26, 2010
Thursday, October 21, 2010
Do Ayden Jane's abilities to talk and run and jump and be, well, 'typical' 3 mean that I am blessed? Or maybe I should ask, would I be any less blessed if Ayden Jane were not talking and running and jumping? What is the meaning of blessed? Is it when things turn out well?
Here is what dictionary.com has to say on the matter.
1. consecrated; sacred; holy; sanctified:
2. worthy of adoration, reverence, or worship
3. divinely or supremely favored; fortunate
4. blissfully happy or contented
5. bringing happiness and thankfulness
Let's see. I am pretty sure option 1 does not apply! Or maybe it does in the sense that we are all created as such in God's eyes, but our skills certainly have nothing to do with it. Option 2 makes me uncomfortable as sometimes I feel like there is a bit of feeling like I have done something special that makes all of this happen. Now, I am all for Ayden Jane's success causing others to see God as worthy of adoration, reverence and worship. Option 3? Hmmm. Quite the conflict. I do feel fortunate that AJ is so capable, but at the same time is it fortunate that she has PWS? How does that make us supremely favored? Because we have less struggle with a genetic disorder? Option 4. I will say that there is a part of Ayden Jane that is blissfully happy and content. She has also made all of us learn a lot about contentment and what really matters. This has definitely led to some blissfully happy moments. Finally, option 5. Wow. Bringing happiness and thankfulness. Obviously, we are blessed.
So, are we "blessed that Ayden Jane is doing so well?" Yes, but not so much because of what she is doing or not doing, but because she is a blessing. Just like for all of our kids. They are not blessings dependent upon what they do or do not do well. We are divinely favored to be the parents of holy creations of a God who is worthy of adoration and we are thankful for the happiness they bring. Yep. We are truly blessed!
Wednesday, October 20, 2010
Watching the show carefully:
Investigating the pumpkins:
Tuesday, October 19, 2010
BUT we are healing. I sleep at night without worrying. Mckenna is so much less fearful. Noah has grown into a fine young man, is doing great in school and making great choices, Kayla is completing a tremendous 4 years of high school as a student, athlete and friend and has a fantastic future on the horizon. Ayden Jane is, well, your basic 3 year old. A feat I was afraid to dream of when she was tiny. Gary is working at a new job which he loves and is so happy and relaxed. Our house is filled with laughter and we enjoy our crazy family. We like to hang out together and we cheer each other on. There is nothing better as a mom than to watch all your kids truly enjoy one another, support one another... love one another.
So, what about the running? I am ready. I want to do it. Yep. I WANT to do it. It is okay to run because I just want to, not because I need to. We will see how it goes since I signed up a long time ago for a half marathon this coming Sunday. YIKES! It will be okay because now my heart is in it. I will run it as a celebration. I will count my blessing for 13 miles. Wish me luck!