My First Picture Video

 

 

It was so much fun to make this little video.  I came across this song on some FB page and it is like it is coming from my mouth!!!!!!!

 

It's called He's My Son by Mark Schultz.

 

 

Jaylee's Seattle Trip

When we left Seattle earlier this month, Grandma and Grandpa treated Jaylee to an extra week of vacation.  She told everyone about it before we left and while we were there... everyone!

They all went to church "with Audrey" on Sunday then went to "Tommy's" to play.  On Monday, Grandma and Jaylee hit the fabric store to start making dresses for her American Girl Doll.  We got a lot of texts from Jaylee on Monday!!!  Audrey joined them for dinner at Red Robin and then slept over that night.



On Tuesday, the 3 girls went to breakfast, lunch and a pedicure... before Jaylee got to spend the night at Audrey's.  Jaylee, Audrey adn Aubrey became quite good friends!!

On Wednesday, Jaylee found herself in downtown Seattle with Rebecca, Gma, Tommy, Audrey and audrey's cousin.  They got scammed out of parking $ on their way to King Tut. She really enjoyed the museum and even brought us all home a little gift!!  She says that everything there was real... except for Tut himself... I think the tickets should have been a lot chaper than!!!

On Thursday, she joined Audrey and her othere cousin on a trip to Wild Waves Water Park.

http://wildwaves.com/

She LOVED it!

Friday was her real last day there and all Gma, Rebecca, Maria, Jaylee & Audrey went shopping before a going-away-ice cream party at Gma's house.  Jaylee and Adurey bought matching shirts and three-way BFF neclaces... BEAUTIFUL YOUNG LADIES!!

She got to see Brian and James' kids one last time before heading 3,000 miles back home. I think she had fun...

She admitted to Gma that she was slightly nervous for her flight home, but she lucked out and ended up on a plane with 3 other Unaccompanied Minors!  They all hung out on the plane and played Nintendo DS.  Jason was in Baltimore to pick her up at the gate.  Jennibelle organized a Welcome Home Party...

(Preflight)

Jenni's party...

pix to come

CHOP questions

1. DI?
2. GFR?
3. sternum/abd muscles... ?pseudo PBS?
4. start transplant testing
5. diet restrictions?
6. What does BUN 26/19 mean?
7. how does failure happen... how high do labs go, when does he feel bad, when start dialysis?

Appeal for CHOP



August 12, 2012

To the Medical Management Team of Geisinger Health Plan (GHP), 

My name is Jennifer Stringham and I am writing to you on behalf of my husband and myself regarding your decision to deny a second opinion appointment at Children’s Hospital of Philadelphia (CHOP) for our son Jackson Stringham. Jackson sees a Nephrologist (Dr. Muchant) and a Urologist (Dr. Sumfest) at Geisinger Medical Center (GMC) for his urological issues - Chronic Kidney Disease Stage 2, Salt-Wasting Nephropathy, Nephrogenic Diabetes Insipidus, frequent Urinary Tract Infections (UTIs), Bilateral Hydronephrosis with Megaureters, Thick-Wall Bladder, Post Urethral Valves, recurrent Urethral strictures, a reconstructed urethra, a repaired Hypospadia with Chordee, and a reversed Vesicostomy. These Drs. have chosen a “sit and wait” approach to Jackson’s care that my husband and I are not comfortable taking in regard to our son’s health and future. Jackson has had 14 UTIs in his 17 months of life, and each infection has the potential to further injure his already fragile kidneys - a fact that we have been repeatedly reminded of over the past year. Our Pediatrician (Dr.Cook) has encouraged us to seek another opinion at CHOP while Jackson’s kidneys are still functioning in an effort to avoid a costly and life changing transplant in the future. When Dr. Cook’s office requested the CHOP approval last week, we were at a family reunion in Seattle, unaware of your 2-day rule. We missed 2 calls from a GHP nurse (Lisa) requesting our rationale as to why we feel that CHOP will best serve our son. I left a message for Dr. Cook to contact your team directly regarding the denial, but she is unfortunately on vacation. I spoke with a GHP representative (Rhonda) who took my verbal request for an appeal, but she called later in the week informing me that I had to write the appeal personally and mail it. I hope this appeal touches upon your concerns and fully demonstrates why it is medically necessary for Jackson to be seen at CHOP.         

                 Last December we requested a second opinion, as we lacked faith in the decisions made for Jackson's care at GMC. We were denied the opportunity to go to CHOP, a leading pediatric medical center in our home state, but were granted a second opinion with a participating provider, Dr. Gearhart at Johns Hopkins Hospital in Baltimore, MD. It was a nonproductive nightmare of an experience and we never actually received the second opinion we were seeking. Jackson’s records were received by Dr. Gearhart’s staff prior to our appointment, but when we arrived Dr. Gearhart insisted that he was unaware that our records had been sent ahead of time. He demanded that he would need to review the records before he could formulate a plan of care - despite the fact that as a registered nurse, I was able to give him a detailed verbal medical history. After listening to just part of Jackson's story, he told me that Jackson was “much more complicated than a simple hypospadia” and once again insisted he must look at Jackson’s records. Dr. Gearhart further berated me because a VCUG was never ordered for Jackson. He said that he would order a VCUG to be done and would call me within a week to give me his medical opinion. I never heard from him again. I left two unreturned messages with his personal secretary. His department's scheduler had trouble ordering the VCUG for insurance reasons. She called the next day to say she was still working on it and would call again with a date and time. I never heard from her again either. Needless to say, I am not remotely satisfied with the care my son received at the Johns Hopkins Urology Department, as they have fully demonstrated through their lack of preparation for our appointment, curt bedside manner, and inability to follow through with their own recommendations, that the health and medical well-being of my son is not their priority.

                   At the time of our Johns Hopkins visit, Jackson had been stable for a number of weeks - infection free and appropriately growing. However in February, he began acquiring UTIs every 20 days. He stopped growing, lost interest in table foods, and was eventually diagnosed with Failure to Thrive. As a result, his treatment team consists of a Gastroenterologist, a Nutritionist, and an Occupational Therapist. He survives on 3 cans of Pediasure per day. His Urologist was finally able to get him back to the OR in July to resect another Post Urethral Valve and scar tissue. Jackson's creatinine is now up to 0.5 and his last BUN was 26. These higher levels show that with these infections, more damage is being done to his kidneys. Last year Dr. Muchant at Geisinger told us that a transplant may not be in his future; however in June, this same doctor told us that a transplant is inevitable without a full explanation as to why this view has changed.

We have been to CHOP previously for in-utero testing, and had a positive experience. Our Pediatrician personally recommends the Nephrologists and Urologists at CHOP. Initially, we were pursuing a nephrology second opinion only; however when the Nephrologist at CHOP (Dr. Meyers) reviewed Jackson’s records, his office called and informed us that he would like to see Jackson as soon as possible and would also strongly encourage him to have an appointment with urology. It already seems that Dr.  Meyers is more concerned for Jackson's health than the doctors at both Geisinger Medical Center and Johns Hopkins Hospital! Though Jackson’s current doctors are accessible via email, they are quite difficult to converse with and often dismiss our concerns without providing answers to our questions. We also had a harrowing experience with his Urologist at Geisinger, Dr. Sumfest, in March of 2011. We took Jackson to see him for multiple complaints: white discharge from his vesicostomy, mottling, and decreased eating. After only meeting with us for five minutes, Dr. Sumfest dismissed our concerns as being over-reactive parents. Four days later Jackson was in an intensive care unit fighting for his life from a UTI and sepsis. Furthermore, we have been given contradicting information and prognoses on Jackson’s health and need for further procedures from his team at Geisinger. It is a very difficult task to raise and support a child with many health problems, and it has become even more difficult when we, as Jackson’s parents, have to doubt the recommendations of the very doctors who hold his life in their hands as a result of their own conflicting actions and words. 

Given the above information, I implore you to reconsider Jackson’s need to visit CHOP, where doctors have already shown concern for his situation. As a parent, I am bound by the love for my son to pursue any avenue that may improve his quality of life, prevent readmission to inpatient hospitalization and save his kidney and urologic function. With a thorough medical evaluation and second opinion, my husband and I will feel more confident in moving forward with Jackson's treatment. If the doctors at CHOP provide a novel plan of care, new options may be available for his future, as we fight to keep Jackson’s kidneys working for as long as possible and attempt to avoid a transplant.

My husband and I thank you for taking the time to read this and for your consideration in allowing Jackson a chance to visit CHOP for the second opinion that he deserves. We have tentative appointments scheduled for September 5, 2012. Without this visit, each new UTI is a chance for his kidneys to incur more damage and potentially brings him closer to daily medications, blood pressure issues, dialysis or a transplant and a life of immunosuppressive drug therapies. These interventions are costly and life changing. If there is any chance to avoid this future for our son, we must explore it now before it is too late. 

Please do not hesitate to contact me if I can provide you with further information that will aid in your decision.  

Sincerely,

  

                                                                                                717-615-5100

                                                                                                jennstringham@msn.com

                                                                                                322 W Woods Dr. Lititz, PA 17543

***I wish I had looked on GHPs website before mailing this, I would've mentioned the $63,297.17 Sepsis bill from March of 2011!!*** 

Lee Family Reunion

Lee Family Reunion in Seattle August 2012

***So, there's hundreds of pics in this post BUT if anyone has anymore pics they'd like to share with me, I'd be very grateful!!***

Where do I begin??  I guess chronologically...  Each time we spend with the Stringhams is better than the last and I truely believe that it will be hard to beat it next time.  There is never any fighting, arguing or boredom.  Everyone gets along, there's lots to do with lots of people, the kids adore each other and pick up like the are together every day, and it is always so... ENJOYABLE.

We left BWI on Friday, July 27th.  Here's Jennibelle walking the cat walk while Jason parked the car...

(Notice, she still has one large and one baby front tooth.)

The flight was uneventful.  We all slept most of the way! We arrived at midnght and hung with Gpa and Gma for a little while before we headed to bed.  We are lucky that Jackson is so adaptive!!! 

Saturday was Ryan's Baptism.  I hope they know how much it means to us that they scheduled it for a time that we could be a part of it!!  Then, all 29 of us headed back to Gma's for a pizza party...

I thought this pic of the ladies was pretty... Jamie, Amy and Maria.

And then, the men...

Pigging out and then nailing the kids with water balloons...

Guess who lost?!?! Oh Jenni!!!

Where there is Maria and Jason, there is laughter...

We're trying to get her to move to PA!!

Our attempt at a cousins picture... I'm sure Becca got a much better picture!

Ethan, Tommy, Audrey, Jaylee, Ryan, Jenna, Jennibelle, David, Blake, Catie, Emily, Bryden, Brody, Allie, Matthew and Jackson.

I think Ryan liked his BB gun gift!  He is a GREAT shooter!!

Jackson spent all of his time outdoors either pushing this baby stroller or jumping on the trampoline.

All the kids got along real well... Ethan kept to himself, the next older 3 hung together most, the middle guys/gals hung out, Allie spent all her time on Jamie's lap, and Jackson made his rounds to everyone - and everyone was so great with him!! 

 Jenna was quite the hula hooper!!! And Ethan was quite the tree climber!!!

The party lasted well into the night.

Sunday we had a relaxing morning and then went to church with Gma and Gpa. We came home to a delicious roast dinner and then we all met up at a park for family photos - can you believe that I forgot my good camera?!?  Good thing I had my new fancy phone, though the pictures from it are not fancy :( 

Piano time in the morning:

And then Wilderness Park for pictures...

I am SO EXCITED to see the pictures from Becca!!!

But, we probably should have taken the picture before the kids played freeze tag.

 Jennibelle was on a (successful) mission to befriend Allie this week!!

She even got a few laughs out of her!

 The boys hanging out one of the HUGE tree stumps.

 Jenni and the love of her life!

Monday we spent the day with most of the family on the Puget Sound. The Kidds had some Kidd-family things to take care of.  The water was very cold, but our feet/ankles quickly adapted and we had a great day!!

I have tons of "favorite pics" from this day!!! We took over most of the beach!!!

Jackson took a liking to Aunt Amy!

Jennibelle and her finds... she even brought home a sand dollar.

Jaylee eatting sea weed!!

Jenni and Blake on their own part of the beach!

Knee height freezing water.

Jaylee and Tommy -  I asked them to get together and smile for a pic and this is what I got!



It was the only time Catie talked to me this trip... she sat and talked my ear off for 10 mins.

Jackson and Jason heading up stream.

Brett, Jenni and Blake on their adventures.

Jason joined on their last adventure and lost his smart phone in the woods.  We had to drive back and keep calling it to find it... Thank goodness we did!!

Burrying Tommy.

Jackson got bored of watching the men skip stones and stomped off angrily!

FYI... James was the winner.

And yes, his shirt says "Mommy's New Man"

Beautiful!

We then all headed back to Gma and Gpa's for Taco dinner and more play time!! 

Even though it's super blurry, I LOVE this picture of Jenni and Jenna...

Tuesday, Jason and I got to leave the kids at home and head to downtown Seattle to celebrate our ten year anniversary.  I sure did get lucky finding him!!! 

Up top of the Space Needle. Beautiful clear day! (but we couldn't see Mt Raineer.)

 

He is such a dork!!!!

 Though I am no better... I wanted to remember that it was our "10" year.

The helicoptor that "almost" hit us!

To eat, or not to eat... the flower decoration.

You can dress us up but...

We even shopped at a downtown Target... 3 stories high with escalators just for your cart!!!

Jason finally found Jenni the Monster High Doll he's been searching for!!  He is so cute!

We stopped at Pikes Place and walked to the water front. On the way, we found the Gum Wall... Yummy!

I have a pic of us down here 10.5 years ago on the day he prosposed to me.  I'll have to scan it in here later...

 Jason taking pics of dead animal heads hanging in an arcade...
 because he knew Jackson would love it...
Reason 12,375,899 I love him!!!

The kid's first Mariner's Game!!
And they won!!

 Nose Bleeds!! But, we could see it ALL!! And we each got a free Tshirt too!
The entire family went... we took up 2 rows!!

 Jaylee and Audrey don't look like twins anymore... but they are both beautiful!

Jason at the Mariner's with his son... priceless!

Jenni's shirt was a little big!!

The cutest couple ever! Eric and Maria.

So many kids did cute things throughout the game...
Jackson believed that the stadium was constantly cheering for him.
The older kids danced and danced trying to get on the big screen...
They got up there once, but Becca was the only one to see it.

Jenni is so much fun... what a goof ball!

Here is Allie looking through the binoculars backwards at Emily, rather than the game.

Jackson & Matthew" took" Jason and Brian out to the hallways around the 4th inning.  The rest of the kids made it to inning 8 before we packed up and headed to the play area.

Wednesday was not much slower... The girls spent the morning shopping with me b/c they each saved up money to blow on this trip.  Jenni quickly found a Seahawks football that she liked, but we had to drive around for over 2 hours before we found a Seahawks pillow pet for Jaylee!!  The Jason, Brian and Gpa babysitted so that the women could take Maria out for a bday lunch (Panera Bread). 

Then we headed to Brian's apt complex to the indoor pool.  Funny how people in Seattle like to swim when it's over 70'.  Brrrrr....

Jaylee was inspired by the Olympic swimmers...

Jennibelle was very proud to swim from one end to the other without any help!!

Though most nights ended with us wathing the Olympics with Gma and Gpa, Weds night we watched How to Train Your Dragon in James' and Jamie's backyard.  So neat!!!!

Thursday was finally the day to head to the Ranch for the Lee family reunion.  We had all been so excited to go... we've heard many many stories of all the fun!!

When it was time to go, however, my wallet was no where to be found.  It should have been in my backpack. We checked my bag a FOUR times, and spent an hour searching high and low... even through the garbage.  Then we stopped and Jason said a prayer. I know it sounds silly... a wallet is such a trivial thing to pray for, but the next time we looked into my backpack, they were laying right there on top!! 

We stopped at Snoqualmie Falls on the way and I am SO glad that we did!!

Mt Raineer was in site on our drive again that day and no matter how many times I have seen it, it blows my mind by how big and beautiful it is!!! Absolutely breathtaking... and so were the falls, even with it being under construction!  The kids had no idea what they were in for and were stunned by how big it is... 268 feet (100 feet higher than Niagara!) 

 BTW... I am afraid of heights, so why did I spend my 5 year anniversary on top of Niagara and my 10 year anniversary on top of The Space Needle?!?) 

Because of contruction, we were not allowed to hike down to the water.  Jason remembers (as a child)  climbing the large rock down to the left of the falls.

And then we were back on the road... to Ensign Ranch.

Somewhere right over the top of the mountain!!

The best cherries Jason has ever had...

The kids jumped right into the games when we got there (around 2pm)...

Jenni and Jenni...

The girls could not wait to meet Great Grandma.

You'd be surprised how much fun playing Clean-the-house is!

Gpa was nice enough to watch the "Neigh Neighs" with Jackson.

Catching grasshoppers!

Teepee with Indians

 Uncle Eric's Jeep was a BIG hit with the kids!

The bigger-than-life water slide!

Uncle Brian and Aunt Amy.

 Jaylee and her inner tube.

Jaylee

 Jenni and Blake

Inside, we played shuffle board, fooseball, and board/card games.
Jenni, Emily, Jamie and Ryan.


Jenni, Audrey & Jenna.

Apples to Apples.

We tried to play bad mitton outside, but the wind made it comically difficult.

Family Home Meeting...

Jaylee got up to sing with the kids even though she didn't know the song.

She was very into everything about this trip!!

"Oh, I wish I had known that I was going to sing tonight!" - Great Grandma

The meeting was  a refresher on Great Grandpa Lee's Patriarichal Blessing.

We served breakfast on Friday...

Scrambled eggs, tator tots, sausage, toast, cereal and fruit.

Almost everyone helped!!

After breakfast, it was FINALLY time for Jackson to ride his neigh-neigh!!!

His excitement was obvious through his squeals and hugs!!

UNTIL HE GOT ON THE HORSE!!!

He hated it!

It may have been b/c of the helmet though.

Oncce he was helmet-free and in daddy's arms, he was delighted about the niegh-neighs again!

Jenni really enjoyed her horse ride for 10 mins.  Then her bum was too sore to cont.

Then we girls headed back to the slip n slide while Jason went shooting with the boys.

I got Jackson to go down with me 3 times, but was too nervous to do a fourth.

It was FUN!! Plus, I had my zoomier camera so I got some fun shots!

Go Jennibelle!

Jaylee + Audrey = best cousins!

Are we sure this is a good idea??

Brian with Matthew. 

Eric.

Jenni skiddaddling across the top.
I just think that she is adorable!

The "middle kids" wading in the foot pool.

Jenni's battle wounds.

Drying off...

"Ok Becca... just act natural, like I'm not taking your picture!"

Then it was the "big kids" turn to ride the horses!

I have to admit, I was quite nervous after the video we had to watch!!

The ride was 45 minutes long... across the creek, up and down some hills, over a few miles through the woods, and back.  My bottom was sore for days!!!  It was a great experience though!  My horse's name was Angel... and she did great!!

Jaylee.

Jaylee & Audrey survived!!

Audrey and her horse

Ethan enjoyed himself too!

Jason, Jason Kidd, Tommy and Eric went with us also. But we weren't allowed to take any picss until we had gotten off of our horse :(

After a few arts and crafts and an hour or so of wading through old family pics, it was time to hit the road... again!  As we were packing up the cabin, Jackson sat on our porch yelling "Neigh-neigh, neigh-neigh!!"  "Yes Jackson, there are Neigh-neighs right out in the pasture."  OOPS.... He was letting us know that 2 horses had gotten out and were 10 feet from him... boy was he excited!!!!  Then the missionaries came running and decided to feed the horses right in front of our cabin so all the kids could enjoy it!  What great memories!

our cabin porch

our view

Jaylee lost a tooth while there... a very bloody molar!

And we were on our way home from (quite possible) the last Lee Family Reunion ever.

I am soooo thankful that we were able to attend this!!!!

Saturday was our last day in Seattle... this vacation went WAY TOO FAST!!!!

We relaxed and Gma and Gpas in the morning, doing reunion laundry and looking at more old pics of Jason.  Then we dropped the kids off at the Mendenhalls so that we could meet up with Bosshart for lunch. 

Guess who's getting married!!!!!!!!

They act like it hasn't been 3 years since they saw each other last!!

Jaylee and Tommy's lemonade stand.

Even the creapy stalker couldn't hurt their business... they made $20 in 2.5 hours!

(No, Jason is not the creapy stalker... he was on the other sid eof the road STARING).

We threw ourselves a Going-Away-Sundae party at Gma and Gpa's that night!

And we all got to hang out... one last time... sniff, sniff!!

The girls were truley exhausted by Sat night.  They sat and watched TV with thier cousins after ice cream.  Jackson liked having the trampoline to himself.  After we packed, it was alraedy 1 am and we head to leave by 5am.  The tooth fairy even had time to come for Jennibelle (Jaylee didn't put her tooth under herpillow yet... weirdo, she does this every time!!)  Jaylee seemed a little nervous about us leaving her behind... she even ended up in our bed sometime before 5am.  And then we were off...

I HATE LEAVING!!!  I wish we were rich and could all live on a tropical island, or atleast rich enough to fly to Seattle twice a year!  We're so lucky that we have such a loving family that we get to see as often as we can!!  Jennibelle was really upset about leaving Jaylee... she even teared a few times.  Jackson was a little upset too... he kept calling for her, and kept looking out the plane window screaming her name!!!  The last hour of the flight was terrifying as we steered through thunder storms, but luckily it did not delay ourlanding, and the drive home was pretty dry!!!

We're excited for Jaylee to come home on Sat... we've gotten texts from her quite frequently today!!