Friday, November 23, 2012

Maybe One Day

I hope this comes out right, but as a disclaimer I want to say that this is in no way intended to sound angry.

I have heard 3 times in the past week alone, "God gave Ayden Jane to you because He knew you were just the right person..." or something like that.  Now, it is always meant as a compliment or at least a heart felt observation or something.  It is intended to be encouraging and supportive of the challenges we have overcome along side Ayden Jane.

I have heard such comments for so many years now and with so much time to mull it over, I believe this.  God chose our family from the beginning.  He knew that Gary and I would be blessed with 4 kids.  I do not believe that He ever intended for AJ to have PWS, but things happen.  Just like I don't believe that God chooses for people to have cancer or diabetes or Alzheimer's or any other such thing, but we live in an imperfect world. Would you say God chose your wife to have cancer because you are a good husband and you can help her through it?  God can use these awful things to bring about joys we would never be able to comprehend otherwise.  He can reveal Himself in marvelous ways in these circumstances if we allow Him to do so.

I was not chosen as AJ's mom because I am somehow special or better prepared or equipped.  If there were any logic to that then all special needs kids would be born to families who are somehow more capable than other families.  PWS, autism, down's... none of them care what the financial or educational status of the parent is.  Some families are able to withstand the strain of raising special needs kids some crumble under the added strain.  I am thrilled to say that we have withstood and in some ways become stronger as a family thanks to Ayden Jane having PWS.  We have been blessed by extended family and friends that have propped us up with prayer, encouragement and even finances when we just couldn't go it alone.

Honestly, I mostly struggle with anger that Ayden Jane has PWS.  So, often times this sentiment makes me angry.  Sort of like the reward of being a good parent with the first 3 is that our fourth has PWS.  I know, I know that is not what is meant when people say that God chose us...  I think the meaning is more along the lines that AJ is blessed to be in a family that is willing to work so hard for her.  In all honesty, watching your child struggle to do things that they should naturally, watching them daily manage a chronic life long disorder and all the while knowing that any day they may begin to feel hunger every minute of every day just makes me feel angry, not 'chosen' or blessed.  These are things I cannot fix so I often feel incapable... What parent feels adequate when their child has needs you cannot meet?

So what would I say to a friend whose child is born with PWS?  It sucks that baby has PWS but I promise you I am here for whatever you need. Then just listen.  We need to pour forth.  As the sting subsides:  I know it is rough and that neither you nor little one signed up for this but you are doing amazing.  Little One brings joy in ways I didn't know existed.  I hope you are as blessed by him as he is blessed by how much you love him.  If you don't feel that way today it's okay.  Some days you will and some days you won't.  It is a long sometimes lonely road raising a special needs kiddo but if you are able to take a moment to look around you will see God in many new ways.  You will learn what is important in life.

I hope that the day will come when I don't get angry that Ayden Jane has PWS.  That I don't get angry watching her struggle.  That I don't feel bitter about how hard it has been on our other kids.  That I stop wondering what AJ would be like without PWS.  Maybe, one day, I will be thankful for PWS.  

Monday, November 19, 2012

Pharma NAC

While at the conference we heard Dr. Miller talk about a supplement for low glutathione levels.  Yea, I have no clue what a glutathione level is either but apparently it is sort of important.  It is linked to obsessive/compulsive behaviors like hair pulling and skin picking in PWS.  I guess they have had some luck with it in helping to treat addictions as well.  Now, we are very happy that we do not deal with any of those things with Ayden Jane.

We also heard, however, that it is a supplement that is used in people with cystic fibrosis because it is somehow linked to inflammation of the airway.  It is also known to loosen and break up the gunk that resides in that tract.  All things that I would have paid dearly for last winter when Ayden Jane was such a mess. Because it helps immune function and respiratory system, it can break the cycle of repeated bacterial infection.  Again, where was this stuff last winter???

Ayden Jane just finished day 3.  So far I'd say I am hopeful.  When we returned from the conference Ayden Jane was a very gooey mess.  I am pretty sure that the cats at Mrs. J's were the culprits for clogging her all up, but her poor drainage ability was basically letting it all just sit there.  I'd say she has blown her nose successfully better than I ever remember since we started this stuff on day 1.  She is nearly silent when sleeping.  (Not that she snores a ton, but she definitely did when clogged up.)

I also think that there is an increase in her energy.  The first night she was up until 11 pm!!  Day 2 was marked by a long, involved wrestling session and the going-so-fast-she-kept-crashing-everything routine.  Day 3 she skipped a nap and kept energy going.  She is also choosing to more or less skip lunch!  The best part of that is she is doing so without the big lull in activity that has always come after being active a while and sort of running out of fuel.

Way too soon to say what part/if the Pharma NAC is responsible for the changes, but my gut says that it is, at the very least, reducing the inflammation in her sinuses and calming her immune system.  Sort of giving her a fighting chance of clearing things out.  In the process there may be a bit better respiration going on as it is just way easier to breathe!  I also think it is responsible for quieter sleep.  Even though AJ does not deal with it, I wonder if it would help with obstructive sleep apnea?  (google search shows a bit of hope it might)

Sunday, November 18, 2012

Dr. V and Scoliosis

I have been round and round in my head about what to do with Ayden Jane and the scoliosis.  I was almost able to talk myself out of making the grueling trip to Philadelphia to see Dr. VanBosse because, well it's a grueling trip and AJ looks good on the outside.

After listening to Dr. V. at the conference, however, I know I want to take AJ to him.  He was very convincing in his knowledge of PWS.  Imagine, not having to feel the concern of whether or not the decisions made are the best way to treat a child with PWS.  Ayden Jane looks and acts nearly completely like a typical child so I think sometimes I must sound like a crazy person reminding them that she really is different on the inside.

He brought up several other common concerns in people with PWS.  Ayden Jane will get the complete once over and we will be able to determine a treatment plan for the scoliosis with all the best info.  Basically, her curve was measured at 23 degrees in Sept.  If it has progressed at ALL we will be looking at some sort of intervention.  It could be in the form of a brace or a cast.  Either way, we will have a plan and be moving forward.

As for the trip, we decided we will drive up (12 hrs) on Wed. and take Thurs. to play.  Thinking we may check out the zoo or the Please Touch Museum depending on the weather.  I just feel like AJ will need a day to wiggle so she can do her best on Friday.  Our appointment is at 9:15 but we were told to be prepared to be there all day.  Since we are checking on AJ's orthotics, have questions about her right leg and it's desire to internally rotate plus the scoliosis... I want AJ to be ready.  Then we will just head back and drive into the night Friday night.  At least that way AJ will hopefully sleep and not talk for 12 consecutive hours!

Thursday, November 15, 2012


This post has nothing to do with PWS, but it is something that is so touching my heart and our family...

Yesterday, the 4th father of one of my kids friends passed away.  Four great, strong marriages.  Four couples who were best friends and loved being close families.  Four families that have now felt a similar loss. One I cannot comprehend.  Three of them in the past year alone.

All of the children were that indeed, still children.  Ages 3, 10, 11 and 11.

I know that PWS has made our families journey tougher than average, but I cannot imagine raising any of the kids without Gary.  It would be the loss of my best friend, my rock, some days - my sanity.  It would be the loss of 1/2 of who my kids are and 1/2 of their compass for who they will become. I can't imagine handling the challenges or for that matter, not having him there to share the joys.

My kids are keenly aware that life ends.  It has not struck them personally yet as they still have all 4 grandparents... but they have walked this road with their friends.

So, if you have a minute, say a prayer for these families.  For the amazing women who are moving forward the best they know how.  For young children who have to grow up a bit quicker than they should.  For those of us who want to support them, may we know how to truly be helpful.

Wednesday, November 14, 2012

FPWR Conference - The Home Front

Noah did an awesome job of taking care of his little sisters so we could head out to the conference.  I have heard a few stories that show he is a bit of a genius when it comes to managing life with Ayden Jane.  Here's one example:

Ayden Jane was sooooo excited that Noah was going to take her to Harby's  (Arby's)  When we travel for soccer it is Noah's favorite place therefore AJ likes it too.  While they were there Ayden Jane was so excited about it being Noah day.and having gone to basketball practice with him... that she was rather distracted.   Apparently when they were eating she was taking FOREVER and Noah was ready to move on.  Ayden Jane did not want to hear about taking the rest of her apples in the car...  What is one to do?  It's not worth a melt down to force this issue.  So,  Noah was messing with his phone and told Ayden Jane that Tucker texted him and really wanted them to come home fast and give him a treat.  Ummm.  Tucker is the dog.  Ayden Jane loves Tucker and it is her job to feed, water and treat him.  She bought it in a flash!  Now, I'm not saying lying to his little sister should be a consistent habit, but I think the genius of the maneuver out weighs the method.

The morning after Noah day, Ayden Jane was off to Mrs. J's house.  All reports were good and that AJ had a great time and was really easy on Sat.  One problem was sleeping,  Well, more like lack of sleeping...  Apparently AJ woke up at 1 AM and went in and asked Mrs. J, "what time can I get up."  J told her 6.  Back she went at 2 AM and said, "Is it 6 yet?" Repeat pretty much every hour to half hour until 6...  Somehow Ayden Jane hung in there though and made it through church and a soccer game (playground time) and had a great time.  I am so thankful for people like Mrs. J who willingly take on the challenge of Ayden Jane...

Noah put Ayden Jane to bed on Sunday night and we returned before she woke up.  It was so very cute Monday morning how excited she was to see us :) 

Tuesday, November 13, 2012

FPWR Conference

I have recovered from the trip and feel like daily I remember more and more details of what we heard.  The information was amazing and my brain has not been stretched like that in a while.  I just don't hear a whole lot of neuro biology or genetics at preschool.  If you want to read some great notes from the conference, just check out diving into the waves.  Ali took great notes.

It was great to catch up with old friends and make new ones.  What has struck me most about the experience this year is how different my perspective was.  The first conference we attended was when Ayden Jane was 1.  She had been diagnosed not long before and we still had so much to learn!  We were still coming to grips with what parenting Ayden Jane would be like long term.  We had our big long list of scary things that were supposed to come along with PWS.  We weren't sure how people could manage and have families and jobs...

I remember watching the families with older kids and looking at them and thinking that they seemed okay.  Even happy.  They figured it out.  Also the kids each had their own challenges, but none of them had to deal with ALL the possible challenges.  I was pretty sure I could handle that.

We went back the following year and learned a lot as well.  We still felt like much the newbies in the grand scheme of things.  We had a great time seeing many of the same folks at conference # 2 and reuniting.

Well, 3 years has passed since we made it to a conference.  I am no longer 'scared' by the possible challenges on the horizon.  I have heard about them all.  We have become one of the families that is happy and intact and has 'figured it out'.  I don't mean figured out PWS, but have found how to continue on with full, happy lives with a side note of  PWS.  We spent little time with old friends and instead enjoyed making new friends. We were renewed with hope as we listened to intelligent, passionate and compassionate scientists discuss the work they are doing to brighten future of our child.  The research has advanced incredibly since that first conference.  So much more is understood which has led to a crazy number of new ideas to explore.

So what stands in the way of Ayden Jane's future?  Well, nothing really.  Her future is bright because she is an amazing person.  However, at this point her future will likely come with some pretty big obstacles and struggles.  Prader Willi Syndrome is a part of her every minute from the moment she was born to end of her days.  I think that is where it is hard for me.  I hate the thought that my amazing child will carry a daily battle with PWS all the days of her life.  The research ongoing and funded by FPWR is providing incredible hope that one day Ayden Jane's daily battle may simply be a skirmish.  That will be the day our prayers are answered.

Thursday, November 8, 2012

One More Day!!!

Yes, in one more day Gary and I will be checking out of Pawleys Island and heading north to the FPWR conference.  You heard that right!  Both Gary AND I will be leaving with NO, that's ZERO children.

Sadly, I cannot remember the last time that Gary and I spent a night at home childless let alone EVER went out of state childless since Kayla was born.  (yep, 19 years!)  You'd think that I was heading to Hawaii or something, but getting to head off to the conference is jackpot enough for us.

Now, prepping to pull off this very feat is a bit challenging.  The plan is for Noah to take care of the girls Friday/Friday night then pass AJ off to the infamous Mrs. J (Ayden Jane's preschool teacher from last year.  I told you St. Peter's is awesome!!) for Sat. and much of Sun.  Then Noah will pick her up, bring her back home for the evening and put her to bed here.

Okay, that is the basics of the logistics.  Then there is packing food for Ayden Jane, supplements (deciding which ones do deal with) training Noah to handle her shot and just general AJ stuff.  You'd think I would be nervous, but Noah is totally up for the challenge and Mrs. J knows AJ well.  We are just gonna plan our best and head out!

Thursday, November 1, 2012

Happy Halloween

Another Halloween down.  I have never really been a big fan of Halloween but it definitely can be a source of stress when you add in PWS.  Ayden Jane, however, proved to be amazing.  She loved trick or treating and went for a good long time walking/running from house to house.  She collected quite a haul!

After she was tired of all the walking we returned to a friends house and she enjoyed the costumes that came to the door and REALLY enjoyed playing with our friends dog.  Not once did AJ ask for a piece of candy or anything else to eat for that matter.  It was pretty amazing.

She was exhausted at the end of it all and went to bed.  In the morning all her candy was taken by "the Great Pumpkin"  (or as she sometimes called him, Mr. Pumpkin) and a wrapped package lay waiting.  Ayden Jane got a really cool new toy called a pogo jumper.  She bounced all day long today and even took it to the volleyball game tonight.  She bounced her way around the gym and just knew it was the greatest way to cheer.

This kid cracks me up.


As most of you know, we have a total of 4 children.  To some people this seems like a LOT of kids.  I have to be honest that it doesn't seem like such a large number to me (although on a bad day, I have been known to think otherwise).

It is just fascinating to see the similarities and differences between the kids.  It is awesome to watch them together and enjoy watching them grow.  I wish sometimes we could just scoop them all up and head off on a secluded vacation and just enjoy them and hang out as a family.

The real point of this post though, is our unique situation of having kids at such different stages.  On one hand, it is really cool to be able to see 'the whole picture' all at once.  I know, it's not like we really have the WHOLE picture, we don't have infants or adult kids with grand kids or anything...  But we do span preschool to college!  That's plenty.

It has given me great perspective with the younger ones. I remember my first time through preschool and how huge and important things seemed.  Now they seem important in different ways and I look more for ways to enjoy them.  That is partly because Ayden Jane is different and I just jump up and down with joy for achievements that place her as average, but still... As Mckenna is on the edge of heading toward middle and high school and those years of pressure I hope to help her have great perspective on what is important.  Simply put, God.  She has talent galore, brilliance, beauty and a sweet spirit.  The key to finding her way and  and growing up happily is to know God and allow Him to guide the use of such talent.  It is so easy to get caught up in our kids talents and abilities, but for our family, staying rooted in faith makes them confident, content kids. When they begin to trust in their own abilities it begins to get rocky...

I don't say this as a parent who has already done everything right.  (like there are any of those!)  But being able to look back and see what has worked and where we went off course.  All the rocky patches are rooted in finding value in what the kids could DO not who they ARE.  Often times because they found their own value based on their accomplishments and then discovered that sometimes others were smarter, faster, stronger, more talented...  Then what?  It is easy to do this as parent as well.  We are proud of their successes and sometimes it seems like that is why we love them or are proud of them.

The best 2 solutions possible for this pitfall are experience and Ayden Jane.  Experience, because we learn from mistakes...  Ayden Jane because we all love Ayden Jane for who she is.  We admire her determination and know she is valuable.  I mean know beyond a shadow of a doubt that she is awesome and has a purpose.  She sucks in all the positive vibe and is just happy to be who she is.

Yep.  If I could go back and do it all over again with my other 3, I would do my best to build them up and cheer on their every tiny step.  I'd drop everything and tell them how awesome they are for no reason at all other than because God made them just like they are with unique, amazing personalities and gifts.

Good night all.  I have some kids to find ..