Friday, December 23, 2011

One Year

One year ago today our lives shifted again as Annalise was diagnosed with Unspecified Leukodystrophy.  Although Annalise has lost many of her previously acquired skills over the year, I am so thankful that she is still able to sing!

video


Today this year has been a much better day.  We are enjoying a day of respite at the Ryan House.  Our good friends, the Hauer family came by today and played with us for a while here.  It was so great to see them again!  They are such amazing people!

Thursday, December 22, 2011

11 Things I've Learned Since Becoming a Special Needs Parent

I came across this post early this morning after being up multiple times throughout the night with our two special children.  These are all feelings I feel or have felt throughout the last 3 years.  She really hit the nail on the head with this one!  There is so much guilt, love, anger, frustration, uncertainty, and incredible joy that I feel throughout our journey.  I'm glad I am not the only one who feels this way and that someone had the ability to share.  Excellent post!

Friday, November 11, 2011

Roll With the Punches!

Happy Veteran's Day!  I am so thankful today and everyday for those who give so much so that we can live the way that we do and enjoy the freedoms that we have.

I'm so sorry that it has been so long since I have posted an update.  It has not been for lack of desire, but rather lack of time!  Here are just a few of the things that have been happening here the past couple of weeks.

*Fall break, which was great!  I love having my kids home from school.
*John had multiple work trips throughout the month.
*Bryce got strep throat
*Bryce and Annalise had croup
*Sick respite workers.
*All the kids had dentist appointments...no cavities...hooray!
*Bryce got a new stander (I'll have to add pictures once I get some)
*Orthopedic appointment for Bryce where we found out his right hip is at the same place it was before and    the left hip has actually improved!  That was great news.
*IEP meeting to discuss where Bryce is at now and our plans for Kindergarten.  These are always hard.  It's not that they tell me anything I don't already know, but it is always tough to hear that he is still obviously regressing.  I did find out he has some definite favorites out of his teachers and aides in the classroom!
*Had a good cry that afternoon on the way to Phoenix for Annalise's swallow study.  No aspiration was detected!
*Appointments with GI and nutritionists for Bryce and Annalise and found that both of them have lost weight...not the direction they are suppose to be going!  Dr. McOmber enjoyed giving me a bad time about green smoothies, but was pleased that I have been able to get rid of the Miralax, by giving some of this to Bryce through his tube!
*Neurology appointment for the kids.  Nothing new.  Multiple doctors still looking for a deletion or something.
*Annalise got a new wheelchair/stroller.  I'll have to show pictures of this later as well as pictures of Bryce's new hand splints.
*Multiple appointments for the older boys including dermatologist for a growth next to Jacob's eye, developmental pediatrician, and counseling.
*Sold the Big Red Fire Truck
*Rear air in the bus stopped working...back to the shop.
*School book fair, art fair, and reward trip.
*90 day reviews
*Therapies, therapies, and more therapies
*Then just as I thought I had a day without anything scheduled, I got a call from my oldest son's school and was told that he had just fallen while playing a jump rope game at recess.

He ended up having broken both bones in his wrist.
*Change of weather which feels great, but has brought on muscle pain, tears, and restless nights for both Bryce and Annalise. (which leads to a sleep deprived, grumpy mom)
*Halloween trip to Ryan House...super fun.  I just love that place.  I got to meet Ryan's parents who are super great people.



(This was the best picture I could get of her with her costume on.)


*And trunk or treat at the church.  She would not even wear her costume that night.  She sure had fun racing around the parking lot in her walker though.  At one point when I said let's go say trick or treat and get you some candy, she replied with, "no trick-or-treat, I walking!"  So we just walked most of the night.  She was so happy.  It made me smile!  The picture above was the only one I got of the night. Sorry boys!

So, that takes us through the end of October and into November.   I also received news last night that a friend and former room mate passed away leaving a wonderful husband (who is a long time friend of mine) and six young children.  My heart aches for Tom and his family and I pray that they will be comforted.

Tomorrow morning Jacob, William, and I have Cub Scout Day Camp and then we are heading to William's to ride the Polar Express.  We are really looking forward to a little trip away!

I have been asked multiple times throughout these crazy weeks how I do it.  And I guess I'm just like everyone else.  We all just have to roll with the punches that are thrown our way!


Sunday, November 6, 2011

Random Photos of Cute Kids!

Life has been insane the past couple of weeks.  In fact, I got on here to blog today and found this post that I started almost a month ago and never finished.  It is just a bunch of random photos of Annalise and Bryce that I have taken over the past few months.  Soon, I will get on and catch you up on all that is happening, but for now...enjoy some random pictures of two of the cutest kids around!

Bryce's smiles just beg for a picture to be taken. 

Before Annalise got her own little walker, we would help her use Bryce's gait trainer.  It is a little too heavy for her to use alone, so her new one is perfect for her now, but this was fun while she waited.

It is often very hard to get a good, smiling picture of Annalise so even though it is blurry, I love this picture.  This is when we were in the hospital waiting to get her lumbar puncture.  We were playing with bubbles.

I came home one day and found Annalise with these beautiful braids in her hair.  Her physical therapist, Tess, had braided her hair while she was stretching her.  It was so cute.  

Annalise decided that she wanted to go swimming and decided to put her own swimming suit on.  This is how William found her.

This was at the Ryan House.  I set this on her tray and she started to say a prayer.

Soon she opened her arms and said The End!

Another cute smile

Here are Bryce and Annalise wearing some Leukodystrophy Awareness shirts I had made for them.  Another LD mom that I have met on facebook designed these shirts.  You can find a link to her awareness store here  


She may not be able to get around too well, but that doesn't mean that Annalise won't find a way to get to what she wants.  Here she is enjoying a cup of peanut butter that was left open on the floor during conference weekend.


Morning hair!

More pictures of the kids sporting their LD shirts.








Annalise is a two year old through and through.  During her therapies we sometimes have to get creative.  Her PT, Tess, discovered that if she puts the socks on Anna's hands first, then Anna is much more willing to let her put them and her braces on her feet before working.  Tess is amazing with both of our little ones!

I think she is doing Patty Cake here.




Here is the one and only time (so far) that I have been able to braid Annalise's hair.  It is very rare that she sits still long enough to have much done with her hair.  I just love her hair though.  It has gotten so long and is so pretty.


These are a few shots that I got one day after picking Bryce up from the bus.  I was trying to get one  good shot of both of them looking at me, but as you will see, it never quite happened, although they are cute anyway!


This is Bryce's annoyed face.  He is happy most of the time, but he will definitely let you know when he is done!



Saturday, October 15, 2011

From Van to Bus


The time has come to sell our beautiful, big red fire truck.  We have only owned it for about 1 and a half years, but a lot has happened in that time.  We bought it and then had the wheelchair lift installed so that we could get Bryce in and out easier and so that he could have the support of his wheelchair even as we drove.  It took a bit to get used to the bright red color, and the fact that everywhere I went someone recognized me or would stare and wondered about this huge, red van.  However, it didn't take long for me to really like this van.  It gets great gas mileage for the size that it is and it is amazingly easy to drive.  I love this van!

However, like I said, a lot has happened in the past year and a half.  Last summer we realized that the rear air was not strong enough to keep the back of the van cool in this summer Arizona heat.  Since Bryce's body has trouble regulating temprature, that is a real problem.  We planned to put in a stronger, roof top air conditioning unit before the following summer.  But, before that time came, Annalise began having trouble and we soon realized that before long, we would need a vehicle that would hold two wheelchairs instead of just one.  

So, we began to look at our options.  As we did, we found that our options were very limited!  We began to look into mini buses.  One guy that John talked with in April said that he knew just what our family needed and then came out to show us this lovely Turtle Top Bus.
I do love that this bus had two seats up front.  That would be nice.




The turtle top really was a nice bus and the boys instantly loved it and thought we should buy this one immediately.  There were just a couple of problems with that though.  First, this one was not wheelchair accessible and we really didn't want to have another lift installed...if possible.  And, a new bus like this would cost us around $75,000!  Just a bit out of our price range!  

So, although we had decided that we would need to go with a "mini bus" (a name I find quite misleading), we knew that we still had some searching to do.   I'll spare you all the details of  the following months of searching, but finally we found one that was within our price range.  It was a 2006 and looked really nice.  The only problem was that it was not running at the time.  Minor detail ;)  Anyway, since it cost less than we had budgeted for, we bought it for $3500 and had it towed to the shop.  Just $600 later, we brought the bus home.  We were so happy that we had gotten such a great deal.  However, one week later, it once again would not start and it was towed back to the shop.  A few weeks and $8000 later, the bus finally came home...hopefully to stay!


Jacob and Spencer checking out the lift

Annalise liked the lift as well



It seats 13 in the back or the seats fold up and there is room for 5 wheelchair!

Bryce's first impression was NOT a good one!  He was terrified of it.  He has gotten used to it now and seems to be fine when we travel in it.


The signs throughout the bus crack me up.



The wonderful air conditioner!  My favorite part of the whole bus.


It is large and will take some getting used to, but hopefully it will work for what we need.  I will continue to search for a bus that is a bit smaller and still meets our needs, but for now, this is our new family vehicle.


When I realized what we were going to have to drive, I knew that I needed something smaller to drive when I didn't have all the kids with me.  I just couldn't see driving the bus every time I ran out to get some milk!  We looked and found a nice 2000 Jetta that should do the trick.  What we went through to get that is a whole other story for another time, but it is a nice little car.  We named it the Green Smoothie!
.


It does get dirty quickly, but the boys love washing a nice small car!


So, now that the bus is out of the shop, we cleaned up the van and have listed it on ebay motors.  As much as we will miss it, we hope it sells quickly and goes to a good family who will come to love it as much as we did.  And then we can move on to the next phase of our life.  
Good-bye to our Big Red Fire Truck!