Lugnuts, Mosquito Bites and Peacefulness

The weekend after we got Jackson’s diagnosis Kevin and I headed to the mountains.  I feel most peaceful and happy when I am out in the middle of nowhere, in a forest, surrounded by mountains, and everywhere I look is awesome beauty.  So when we got the worst news of our lives we just stopped everything and went to the mountains.  That sense of peace and beauty helped us so much that we decided that would be our priority that summer/fall.  We didn’t care about all the housework or projects that needed to be finished, we went hiking every weekend with our son in search of the peace we so needed in our hearts.  Unfortunately, last summer those projects were looming and had to be completed so we weren’t able to get out in the mountains that much.  Now that we are home from our vacation and summer has arrived we have again spent our weekends working on house projects.  Until a couple of weeks ago that is.

Jackson and I were shopping at Target one day when I walked down the camping gear aisle by accident.  As we passed down the aisle Jackson became very animated and he started wiggling and laughing.  I stopped to try and figure out what he was doing and noticed he was looking at the tents.  That was when it hit me – the kid wants to go camping!  It was some kind of sign!  When we got home I told Kevin that Jackson wanted to go camping next weekend.  Kevin said “Let’s go!”  So last weekend after a great deal of packing (why do kids require so much stuff?) and precision loading of the car (there was not one inch of space left) we left early Saturday morning for Montana.  We are lucky to be only a couple of hours away from the beautiful state of Montana.  We got to Trout Creek campground by lunch time, set up the tent, unpacked all our gear, had some food and hit the road again to go hiking.  The trail to the hike, Heart Lake, was about 16 miles past our campsite on a dirt road.  The day was beautiful, warm with a light breeze, and blue skies.  Jackson was also beautiful.  Smiling, making happy sounds, and laughing all 3 miles to Heart Lake.  We spent a little time at the lake letting Jackson roll around and eating a snack and then we headed back to the car.  Again Jackson did amazing on the hike out, not a cry or unhappy sound.  Considering that he hadn’t had a nap all day and had been on the move pretty consistently we were pretty impressed.  It was about 6 p.m. when we got to our car and we were all ready for dinner and Jackson was ready for bed!  As we started driving back to camp I noticed the car was driving weird so I got out to check the tires.  Sure enough we had a flat tire.  I mildly started to freak out.  We got out the donut tire and lug nut wrench to change the tire.  This is when we discovered the lug nut wrench did not fit the lug nuts.  Which meant we were 16 miles away from camp, 23 miles from the nearest town, on a dirt road, at 6:30 p.m., with a hungry, tired baby, and no way to change our tire.  Oh and no cell phone service.  This was also around the time I began to freak out.  We were there for about 5 minutes when a woman (kind of a socially awkward woman) drove by in an old van.  I flagged her down and asked for help.  She actually sat there for about 2 minutes looking away from me and thought about it before saying she would see if she had any tools that would help.  She didn’t.  At this point Kevin suggested I take Jackson and ask her for a ride back to our campground.  I did not want to go with the woman!  But I had to for Jackson’s sake.  She agreed to take us to our campground, and after a very long, weird ride we got to our campground where I told the hosts (a retired couple from Spokane) what had happened and the man jumped in his truck with his tools and went to help Kevin.  Meanwhile I got Jackson back to our campground just in time for him to finally have an “I’m hungry and exhausted” breakdown.  I put him on my sleeping bag in the tent while I frantically made Mac n’ Cheese on the camp stove outside.  Unbeknownst to me, Jackson wasn’t alone in the tent.  When I went in to get him to feed him he had about 4 areas on his cute little face where mosquitoes had had their own dinner.  His forehead had one spot that looked like 3 big bites and it was already swollen (and it stayed swollen for a couple of days until I finally put some Cortizone cream on it).  I felt horrible.  My poor baby.  I am sure this is not what he was thinking when he saw the tents in Target!  I managed to get him fed and put to bed.  Needless to say he slept very soundly through the night.  Kevin made it back to camp in time for some dinner but left shortly after that to head to town to see if he could find us a new tire.  Which amazingly on a Saturday night around 8 p.m. in a small Montana town (Superior) he did manage to find us a new tire and have it mounted.  The guy even threw in a 4 prong lug wrench!  At the end of the day we had a new $200 tire, a mosquito bitten kid, stressed out Mommy, and a triumphant Daddy who took care of his family.  And as Jackson slept, Mommy and Daddy ate cookies and played a game of cribbage, which Mommy won.  Despite the unwanted adventure, it all worked out and we had a great weekend out in the fresh air!

Seriously?

A couple of months ago I found out that since Jackson is 3 and still in diapers he qualifies for free diapers under Medicaid.  What a deal!  After numerous phone calls to the pediatrician, Molina (who every time I talked to them gave me a different story about how to get the diapers), and a medical supply company (Norco), I finally figured out how to get them.  So last week I go to pick them up and I am happy because they are the same kind of diapers Jackson has always worn (Huggies).  However, the guy at Norco tells me that Molina may not cover the cost of them because they are “high end” and we may have to get the generic kind.  I’m a little bummed but I figure we will cross that road when we get there.  I just don’t want Jackson in some cheap diapers that will give him a rash.  He hands me the receipt and I am on my way.  When I get home I take out the receipt to file it and as I am walking to my desk I look at it real quick and almost walk into a wall.  I couldn’t believe it!  The medical supply company charged Molina $179.04 for a month’s worth of diapers!  Jackson doesn’t pee or poop that much!  For those of you not diaper knowledgeable let me explain.  I buy Jackson a box of 176 diapers at Costco about once a month.  That box costs me about $40.  I got 162 diapers from Norco for $179.04.  So Norco is charging the insurance company 4.5 times more for 14 less diapers.  Unbelievable!  And people think there is nothing wrong with our insurance industry.  Just charge the insurance companies the fair market price so people’s premiums will go down and give the lower and middle class who can’t afford health insurance a chance to afford it.  Some days I just get so discouraged living in America.  We may be the land of the free but we have also become the land of gross negligence.  I can feel a full tirade coming on so I am going to stop writing.  For now we have some free diapers and that is something!

Bed!

As most of you know I have been fighting Molina Healthcare to get Jackson a bed that will accommodate his special needs.  The bed I was looking at was called a SleepSafe bed.  Molina first denied it saying that we didn’t prove it was a safer option than a hospital bed.  So I had all Jackson’s doctors and some therapists write letters detailing why the SleepSafe bed was the best option (no gaps between the mattress and sides where he could get trapped and suffocate, 4 solid sides that would contain him when/if he had a seizure, twin sized so it would give him appropriate room to grow, etc.).  The documentation and evidence I sent to Molina to appeal their decision was overwhelming in that Jackson needed a specialized bed.  Molina then denied the appeal, despite the letters and supporting documentation, saying essentially “Whoops! What we meant to say was we don’t buy beds.”  Now if they had just said that in the first place I would have been like “Okay, what do we do now, how do we get Jackson a bed?”  But they didn’t, and instead they just pissed me off.  [Quick lesson:  Don’t piss off mothers of special needs kids unless you are prepared for the wrath of a Category 5 Hurricane and the preparation, storm and aftermath that accompany it].  So this week I called the Office of Administrative Hearings and requested a hearing in opposition to the denial.  I have an attorney over in Seattle at the Justice Project who has agreed to take Jackson’s case.  It’s not so much about getting the bed anymore as it is the way we have been treated.  Jackson has a medical condition (Epilepsy) that requires certain accommodations.  It’s ridiculous that we have to fight so hard to get a little boy a bed that he would be safe in.  Even if we lose I will feel like we have won.  Jackson’s voice will be heard by a Judge and we will send them a message that it is not okay to put families through this just because our kids have different, special needs.  It’s not okay to make the people who need help the most grovel, beg and plead for the things they medically need.  But meanwhile…..

A friend of mine found a friend of her Dad’s to make Jackson a bed.  This truly special man’s name is Dwight.  Last week Dwight delivered Jackson’s new bed to us and boy oh boy is it beautiful!  It has all the safety components of the SleepSafe bed but it is just so much more special because it was made especially for Jackson.  Every time I put Jackson in his bed I feel so thankful that Dwight was willing and able to make the bed for us.  No longer do I wake up in the middle of night and hear Jackson fussing because his leg or arm is stuck in the crib slats.  I know he is safe and comfortable.  It is so cute when I go in to get him and he has his little face smooshed against the plexiglass with a big smile on his face.  Plus his bed is just so cool.  I got in it myself one night and had Kevin shut the door and it was like being in a really cool fort (I kind of want one of my own now).  I’ll never be able to thank Dwight enough for making Jackson’s bed, I just hope he realizes how much his act of kindness means to my family. 

Dwight making the bed is just another example of how much Jackson has brought into our lives and how he touches others.  He has shown us that there are strangers out in the world who will take their time, effort and energy to do kind things for others with seemingly no reward.  Without Jackson I would have never met Dwight or even known about him.  Now I am thankful for him every time I walk into Jackson’s room.  And once again I am thankful for Jackson and his effortless ability to teach me lessons I didn’t even know I needed to learn.   

Home

After 25 days of vacation we are finally home!  I missed home but there's nothing like visiting friends and family.  Between Kevin's full fledged family reunion in Florida and my mini-family reunion in Denver, I saw family members I hadn't seen in 15 years and got to meet many new family member additions.  As always I was a little nervous about seeing and meeting people and how they would react to Jackson.  And as usual I had nothing to worry about.  Our family members show us nothing but support and love for Jackson.  They were all so excited to see and meet him and we must have answered a hundred questions about him (which I loved, who doesn't love talking about their kid!).  One of my favorite instances was with my family in Denver.  Jackson was rolling around in the grass at my uncle's house while we sat by visiting.  My cousin Tanya's husband Kevin (yes we both married Kevin's) got down in the grass and was playing with Jackson.  Jackson was laughing and having a grand old time.  Then Kevin asked if Jackson liked water.  You see the other little kiddos were all playing in the cooled down hot tub, all of them except Jackson.  When I said he did, Kevin ran and got a swimsuit on and got in the hot tub with Jackson, who had a blast being around the other kids.  It's little things like that that really touch my heart.  I barely know Kevin but after that I will be eternally grateful to him for his kind heart towards Jackson.  Thank you Kevin! 

Our vacation allowed us some time to work on a couple of Jackson projects.  The first one was working on getting Jackson to hold a sippy cup without handles.  Jackson needs to start working on holding things better with his hands and his hands are getting big enough to hold a cup.  So Operation Goodbye Sippy Cups commenced once we arrived in Florida.  After a couple weeks I can say we have a fairly decent success rate.  He is able to hold a cup and drink from it but not when it is full, the full weight is a little too much for him.  But once he drinks about half of the contents then he is able to pick it up and drink.  So we will keep working on it.  My next goal is drinking out of a straw!

The other project was one that Jackson's speech therapist assigned.  She gave us this device that is a large button that you can record words into.  The purpose is to use this button as a way for Jackson to communicate.  He hits the button and it "speaks" for him.  The word we were using was "more".  We were using the button mostly for eating.  During feeding Jackson would hit the button which would say "more" and we would give him a bite.  The first time Jackson's speech therapist used this with him he hit the button 14 out of 20 times.  Let's just say he got the button down fast.  Too fast!  Here is what would happen - he would hit the button, at a normal pace I would spoon up some food to feed him, it would be to slow for his level of patience so he would start hitting the button over and over.  MORE! MORE! MORE!  Honestly, after a week I was sick of that freaking button!  But I was impressed by how quickly he caught on.  We see the speech therapist next Wednesday and hopefully we can get a new word assignment.  In the meantime I am thinking of recording my own message into the button.  It will say something to the effect of “Mommy needs a spa day!”