Sunday, November 24, 2013

Noah's Dream House

Bookmark and Share
The Engineering Department at CU Boulder is building the ultimate playhouse for both Noah and his little brother.  Really the first of it's kind - a playhouse that incorporates play features a typical child and a child who has special needs so that they can play alongside each other.  The lower portion will be "Noah's Cave"  the upper portion "Luke's Loft."  I had a chance to see pieces of the project and I'm just in awe of the talent and time that these college students have invested in this project.  I never would have thought about half of what they have done to make this playhouse extra special.  It has always been a dream of mine to have a play area that both boys could enjoy and that would assist them in playing together - this kind of goes beyond the dream. 

The playhouse is rather large - 7 feet wide by 12 feet long and around 7.5 feet tall.  So it will be much like having a shed in our basement.  The dimensions of the the playhouse were really driven from the desire to be able to have Noah's wheelchair be able to fit through all doorways and have an adult attendant with him be able to actually stand comfortably in the playhouse.   The students have broken up the project in several teams.  One teams is handling a rock climing wall and slide for Luke, another the exterior, another for interior painting and decor, sconce lighting, paper rocks that look so real,  an airplane that will fly overhead, LED lights that Noah can control with an adaptive switch, sensory lights that recognize Noah's movement, a mailbox that will sing his favorite song when you open it, a matching shapes game that will offer light rewards if you get choices correct, and a stand for his IPad so that he can pull up and play with it in a wheelchair.  The house will also have soft sensory flooring for Noah to lay on.   We are so excited to see it all put together when it is done and then built in our basement early December.  I think the boys will just love it. 
One wall of the Playhouse

Interior Walls of the playhouse (yet to be decorated w/Jungle Theme)

Future Rock Wall

Flying Airplanes for the top of the playhouse

LED lights activated by adaptive switch

Luke's Loft and Noah's Cave

Noah's sleeping continues to be a challenge.  We still can't seem to find the true root of the additional sleep disturbances that he is experiencing.  He's just restless, but his brother is the same way, so it could just be typical toddler sleep patterning.   We weren't sure if Noah was cold in the night, so we've bumped up the heat quite a bit and are dreading our Xcel electricity bill when it arrives.  I know it's going to blow us away, and we don't qualify for LEAP financial assistance.  Noah may always lack being able to safely sleep with a blanket and he cannot move in sleeps sacks and could be susceptible to pressure sores if he was unable to move himself as much as he currently can - and even then often times we need to reposition him - especially if he gets stuck up against the side of a bed wall.  

The Christmas tree went up yesterday.  Noah is celebrating.  This is definitely his time of year.  We still have to put up his Christmas train, which I sure his little brother will attempt to place off track, before Noah has an opportunity to derail it.  Just hoping this train continues to make it another year.  It sure gets a lot of Noah abuse with Noah rolling into it and swatting it around.  But it is one of his favorite things to do.  It's hard to believe that it's almost December - and soon to be Noah's 5th birthday.  Although time seems to fly, it never travels faster than one day at a time.


Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

Monday, November 18, 2013

Counting Blessings

Bookmark and Share

Yesterday I had the rare treat of getting to go to lunch with two other special needs moms. We had a long lunch spending a couple hours discussing all topics relating to our children - comparing notes about therapies, Medicaid denials, nursing, respite, diets, medications, doctors... lots of topics that most parents don't have to think twice about.  As we spent the afternoon together having lunch and walking the local mall we discussed how unpopular we are as special needs parents with government agencies, public school systems, doctors that don't listen, nurses that steal drugs, respite care providers gone bad, medicaid denials gone both good and bad and the fight that follows, therapists that road block you from pursuing avenues that would improve your child's quality of life.  And the most well seasoned mom out of the three of us, said the most powerful thing today.  Turn your tears into re-directed energy.  Think about how you can make that person or group that is causing you to cry to have a very bad day.  Sweet revenge in a sense with comes finding a way around them.   So what you tell me no... I will find someone that says yes... that says yes to helping my child with open arms.  In our time together I realized that the three of us in our own individual ways are some of the strongest, and most powerful advocates you could ever begin to imagine.  We have fierce drives and incredible profound love, that makes us so powerful even on the hardest of days.  We are like the energizer bunny... we keep going and going and going for our children.   You can try to knock us down, but we'll get up each and every time and figure out how to advocate for the needs of our children.  Inevitably I feel sorry for those who think they'll stand in our way.  Eventually you will lose.  The odds are not in your favor.  We have a fire like no other.  God made us fighters to go the distance. 

Yesterday I drafted the strongest appeals letter I could write for Noah's most recent Medicaid denial, a pediatric crawling device - deemed "Not a medical necessity" even after being recommended by a physician and a therapist.  Now I wait for my telephone hearing before and Administrative Judge to battle it out and attempt to convince them to overturn their decision and fund it.   And this of course won't be the last denial I'll have to fight.  Sadly, it is common - more common that it should be.  I think Medicaid and other agencies are rather relying on the hope that we'll give up, accept the denial, put our tail between our legs and go away.   But we don't know how to turn our backs on helping our children.  So we become soldiers of one.  Battling for every need that they have.  Exhausting at times, but we keep marching forward.

We got a very beautiful invitation for Thanksgiving this year.  We received a flyer in the mail, inviting special needs family in our community to a restaurant for Thanksgiving dinner, for no charge and no tip.  And they were also inviting 12 of your family members to attend with you.  Yes doesn't it sound unreal?  It did to me too.  I think must have read it at least five times, then had to sit down and read it a couple more!   I've never seen or heard anything like it before.  And what a gift.  You can only begin to imagine how challenging the holidays can be with a child who has special needs.  I loved cooking Thanksgiving dinners and had done so pretty much every year since my parents divorced when I was 19.  I remember trying to cook my first Thanksgiving dinner after Noah's birth - it was so difficult.  Noah was tremendously distraught in his early years, he screamed, cried almost twenty-four hours a day.  I bounced him endlessly on exercise balls, turned up every stereo to try to find something that would soothe him even for 30 seconds... I cried more tears that first year than I had done in my whole life.  I was so lost, so tired, so beside myself with grief and trying to accept my new life in the role of a special needs mom.  Thanksgiving to me was a way that I could prove that I was able to juggle both a very challenged child and cooking.  Although many hands were offered for help, I declined wanting to conquer the goal - a turkey dinner with all the trimmings and me serving my family around the table.   I did it.  But it was far from easy, and looking back on it, not sure how I did it, and I wouldn't want to try it again.  It inevitably has grown easier since then, since Noah is now older and able to self-soothe to a large degree.  But it does take extra work, that other households don't necessarily have to balance while preparing a large meal.   So this year, we decided to take up this wonderful offer by Zolo Southwestern Grill and accept their kindness and amazing offer to have them prepare our Thanksgiving dinner this year.  Noah and family will be dinning out.  And I'm excited - thrilled actually to be surrounded by other special needs families - we are a group of people in the community that never fail to count our blessings. 


Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

Monday, November 11, 2013

Paint the Pony

Bookmark and Share
Noah has been doing so well at hippotherapy and continues to make huge strides with his head, neck and trunk control.  He can now look both directions that he's traveling in, and hold his head up for long periods of time.  It is truly amazing how far he has come.  One of the best and likely most expensive therapies that he does.   We were so excited to see pictures of Noah for Colorado Therapeutic Riding Center's Paint the Pony Brochure!  He looks truly sweet on his horse in his pictures.  We are so proud of our little cowboy.  His hippotherapy therapist also made these great shoes for Noah.  They have wooden platforms glued on the bottom of the soles of his shoes.  Noah walks with assistance after he gets off his horse and this helps him firmly plant his feet one foot after another.  The are very effective and what a great fix to help him walk better. 

Noah's shoes with platform wood bottoms for walking

Samson, Noah's service dog left to Utah several weeks ago to finish basic obedience and skilled training.  We received some rather sad news last week that Samson, has failed the program.  Our family grew very attached to Samson through the last year of his life, and as a result Noah's grandmother has decided to adopt Samson into her home so that we'll still be able to visit and see him periodically.  We hope to hear soon about the next plans to replace a service dog for Noah. 

The change of seasons, or maybe even the time change itself continues to present night time challenges for us.  We are always up in the night to assist Noah, but it never fails that either the change of seasons or time changes seems to spark even more late night trips to Noah's room to help him.   It's always a trick to guess what he needs - hungry, too cold, too hot, too restless, getting sick... doesn't like the sheets we put on, the room isn't dark enough... trouble shooting at 1am isn't really a bowl of cherries but we continue to try each and every night.  I really wish that Noah could safely sleep with blankets like other children, but he has so much movement that he wraps himself up in them and they pose the risk of suffocation, he won't sleep in a toddler sleeping bag because it's too bulky and prevents him from flipping over.  They make an anti-suffocation pillow (of course that is also made and shipped from the UK) but as far as I know I haven't been able hunt a anti-suffocation  safe blanket.  Noah's has also experienced difficulties recently his fleece PJ's with footed feet seem to be driving him crazy.  I can't tell if it's the closed in feet, the zipper all the way up, the feel of the fabric, or that they aren't form fitting that is sending him to the moon.  So he's sleeping in day clothes with socks and that seems to be working better.  

Chris and I are also struggling with our aches and pains.  One might think - really how hard can it be to carry an almost five year old child around? - He's still fairly little - but you have to consider we have to carry him everywhere.   Transferring in and out of a bath, to bed, on the floor, to his feeder chair, in and out of car seats, and wheelchairs and strollers, we also run him around because we are his legs and his arms...  Chris has severe back issues, and I seem to be feeling it like a bunch of pinched nerves in my legs, feet, arms and lower back - and of course we're again parents, in our late 30's - things aren't going to get any easier for us as we get older.  We joke that we'll have to hire some young strong person to help us lift Noah place to place someday.  It's the things that most people don't even think much about when they see a family like ours. The physical strain is as real as the emotional and financial strain.  Collectively it all wears you down, little by little.  And we just continue to pray for God to give us lots of strength and good health so we can keep being Noah's ability to be mobile in all ways that he can be.

“You never know how strong you are... until being strong is the only choice you have." Cayla Mills


Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.