Monday, April 27

Children's for Opthamology

Today was Tommy's Opthamology visit at Children's. One of the few clinics we haven't been at yet. Aunt Debbie had passed along her sit and stand stroller and it seems to work well for us.

We found the sibling room! Never knew this was here. You need to be 3 yrs thru 11 yrs to stay by yourself while your parent goes to a clinic with your brother/sister. But Liam and I played here while Daddy and Tommy did most of the eye exams. Once the doctor was ready to talk about next steps with us, daddy came and got us.

This was one great play room! MUCH better than entertaining in the lobby reception areas. Liam LOVED the painting area.

And in one of the hallways we noticed our friend from here Dylan Gillig! You lil' cutie! We can still remember our first doc at Children's telling us two years ago (what a foggy period that was) to find the Gillig's and Howard's when we returned to B'ham. Their children had similar heart repairs to Tommy's. And we are thankful they were placed in our path!

The best news from Opthamology is that Tommy can see just fine for a two year old. His tear ducs are clogged so they will do a procedure to place little drains in them to allow the tears and gunk to drain. At the same time that he is sedated for that process, Audiology will place the ear tubes (second set). I hope this is just a day procedure, maybe someone who has done clogged tear ducs can let me know.

On the way back to Bellingham from Seattle we stopped at my parents home and admired their beautiful garden (my dad LOVES garlic) and their new chicks. Yes, Tommy's hands were scrubbed after visiting the chick roost.

Sunday, April 26

Opening day of fishing

Sometimes, I'm just not sure what my parents are thinking. We have a perfectly warm home, nice safe yard, comfy beds..... but nope we need to leave all that and go camping.
I generally had a great time. But on occasion, I let it be known that I missed my bed, my routine, my 'stuff.

My cousin Madison had a great time. She showed me how to play with all kinds of toys.

Daddy taught Liam how to fish.
And I perched on mom's hip while she showed me how to hold the fishing rod. But I'm too smart for her, I didn't want anything to do with that thing.

Mom had MUCH better ideas with a slide!

Back at home on Sunday afternoon my brother and I decided to vacum and mow the lawn at the same time. Mom thought it was funny.

I ran around on the trampoline with Liam. Our hair got all electrified. Liam can jump now! It looks really cool but I'm fine just running around.

A few of our tulips are looking pretty.

And last but not least, this is what mommy found when she heard Liam 'talking' to himself during a nap. She thought he was just mumbling and putting himself to sleep. But then she hear him say "uh-oh" on the baby monitor. And this is what she found. He had long armed reached a package of diaper wipes off his dresser and emptied it.

Taking action: Strengthening services and support for Children with Special Health Care Needs in Whatcom County

I barely survived the Future Search conference. Three days totally nearly 20 hours of conference time. And one episode of anxiety where I pretty much stayed in the bathroom and cried for ten minutes. But that is just a general overview, here are the specifics:

The conference involved approximately 80 people from the entire system locally. DSHS, each of the school districts, WWU, Businesses, Health dept, WCEL, parents, teens w/ special healthcare needs, doctors, nurses, therapists and many others.

We self-managed our work. We used dialogue, not problem solving as the main tool. We took responsibility for our perceptions and actions. We honored our differences rather than having to reconcile them. When some people agreed and others don't, that is a reality to live with, not a problem to be solved. We found common ground.

The first day involved a few different tasks, but one in particular was a mind mapping excercise (I'll add pictures to this later next week) which I can summarize by the top few system challenges that most of us feel (can I hear an AMEN!):
51 commented that there was a "disconnect with services that led to gaps or duplication"
45 commented that there isn't enough funding for capacity in the system (too few slt's, ot's, pt's in early intervention)
33 said there wasn't enough funding specifically in education (IEP's, etc)
23 said the bureaucracy was inpenetrable
21 felt a lack of social supports

We as parents have to go to one place to get one type of service, and then back to our home to get another type of service (if we have a 3yr old or under), and then go to Seattle Children's to get yet another type of service, and over to our primary pediatrician to get other services, and then drive up to WWU to get hearing and/or speech services, etc. No task is simple. The driving is endless. And let's not talk about the forms, paperwork, retelling our history. Maybe it's because Tommy is medically complicated. Maybe it's because we want the best for our kids. Maybe it's because each of us wants the best for all kids.

The tasks were different for each day, some involved looking into the past and focusing on the present to discuss trends effecting our system to care for children with special healthcare needs. We were in our stakeholder groups for many tasks (I participated in the family stakeholder group). Some of our tasks were performed in our 'mixed' groups which meant one family member, one member from govt, one from healthcare profession, one from business, etc.

My favorite task was when our 'mixed group' performed a skit of what our 'ideal' system would look like. It was a brick and mortar type version of Children's Village of Yakima. With over twenty services under one roof.

On the last day, as a large group of approximately eighty people, we didn't agree that the system change would 'look' like a Children's Village of Yakima, we did agree that the virtual type systems to put into place would create a similar 'umbrella' of services. No wrong phone number. One entry door into the system with what some participants termed a 'system navigator' or a coach who was always with you through all the eligibility/paperwork/etc from 0 thru 21 year old services.

I have been a mom for almost 16 years. I have been in mgmt of non-profits for over twenty. This conference stretched my skill set from both! Made me uncomfortable. Made me extremely happy and proud of each of my four kids. Made me cry. Made me feel empowered to make a difference. In the end, my specific tasks are in supporting our local Parent to Parent so they can expand and deepen their services. And to looking at ways to provide mini-respite to parents (not me myself, but rather local systems like existing childcare ctrs, or creation of a babysitting co-op for cshcn). I often reflect that Promise, our childcare center, is the example for others in caring for kids with special healthcare needs.

I really enjoyed the other parents at the conference. Many were in groups of business or ed. But in our Family Stakeholder group, a big shout out to Julee, Faith, Shari, Bill, Kathy, Karlene and Christine.

Now, here is the best part. The next meeting is Thursday June 11, 009. And you are invited. Yep, you. 11:30am - 2pm at St Luke's Community Health Education Ctr (3333 Squalicum Pkwy). The stakeholder groups from the Future Search Conference will report on what we have accomplished and hear what others have done. And we will all shape the plans for the future with each of you interested newcomers. Please come. If you are reading this, you are more than qualified and invited, and we need YOU!

Tuesday, April 21

Searching for a future

Tomorrow thru Friday I will be participating in our local "Children with Special Healthcare needs" future search. I was asked to attend as a mom of a child with special healthcare needs. What is Future Search? That was my first question too!

Here is a definition that I found:
Future search is a PLANNING MEETING that helps people transform their capability for action very quickly. The meeting is task-focused. It brings together up to 80 people in one room.

Future search brings people from all walks of life into the same conversation - those with resources, expertise, formal authority and need. They meet for 16 hours spread across three days.

People tell stories about their past, present and desired future. Through dialogue they discover their common ground. Only then do they make concrete action plans.

The meeting design has been tested in many cultures for the past 50 years. It relies on mutual learning among stakeholders as a catalyst for voluntary action and follow-up. People devise new forms of cooperation that continue for months or years.

In our local area we are hoping to create a new system for caring for Children with Special Healthcare needs. Many decisions that we have struggled with as a family involve our local hospital not being able to meet our medical needs and making the continued choices for care at Seattle Children's.

A memorable moment was early last year Tommy was admitted to our local hospital for RSV/Pneumonia and on the first day of our 10 day admission (which by the way is the average hospital admission stay for a child with Ds and RSV) the nursing staff informed us that they didn't stock Gtube supplies. One extremely kind (Shari) person at our local healthcare supplier drove our supplies to the hospital. But imagine our disbelief when the nursing staff said their hospital didn't believe that it was their job to care for Children w/Special healthcare needs. Only sick kids was their job. Those 'other' kids go to Children's Hospital. It was one of the many moments that I wanted to be involved in local system changes.

Perhaps our new local healthcare system will looks more like Children's Village in Yakma, Wa (really cool place). On site child care for siblings while we attend to OT, PT or Speech all within the same building. Orthotic fitting, gtube supplies, etc together in one place? Perhaps it looks much different. I'm excited to participate in the next few days and will post more about my experience. Change. Long overdue change. And Tommy's lifetime will be better for it.

Saturday, April 18

Our new swingset

3 steps to fun (by Tommy)

First, have your big brother help you up the slide... and remember to use your tongue for balance.

Step 2, get a tight grip at the top.... cause you aren't sure if you are going backward or forward.

Step 3, fly down the slide. Oh yeah. I'm lovin' that thing.

ps Thanks Daddy for spending the time to put our new swingset together and being patient when you realized they set the wrong parts to half of it.

Wednesday, April 8

What works for us Wednesday

At the end of the day what works for us is sitting down to dinner together as a family. Yes it's loud and messy but we are together talking about the day, planning for the next, regrouping as a team.

There are easy and inexpensive, simple $5 dinner ideas that could feed a family of four.

And my all time favorite crockpot cooking site makes family dinners relatively thoughtless but yummy!

On our little farm we grow veggies, peaches, blueberries and apples. We freeze or can them which saves money. We grow poultry which turns into many yummy chicken dinners and fresh eggs. We share goat's milk and are learning to make goat cheeses. We raised organic pork and are still enjoying ham dinners and bacon. And we purchase portions of beef with a neighbor (so we can get better prices) which is raised by a farmer near by (it is so lean we need to spray a pan so it doesn't stick). We have sustainable farming practices and enjoy sitting down to a meal at the end of the day as a family. Sharing simple and nutritous foods. Catching up with one another. Family dinners work for us.

Thursday, April 2

Follow up to yesterday

Within 10 minutes of posting yesterday's letter, I received a call from UHC and the 'nurse' wanted to discuss "management of medical care for Tommy". I place nurse in quotes because I think she is purely in an administrative role. I only recognize a nurse as a nurse if she gloves up and asks how she can help Tommy, and ALL of those nurses do a fantastic job. The 'nurse' that phoned yesterday with questions was purely an administrator of our child's file.

Pure coincidence that they phoned, but I felt empowered (shy grin). We spoke for well over an hour and she was kind while I tried to feed and diaper the twins during that time and answer the questions that UHC wanted answers to.

This is not related to the appeal or denials at all. It is in my mind, related to UHC wanting to screen/limit upcoming procedures for Tommy. Again grrr. But we spoke about his moderate mitral valve leak and need 'someday' for repeat heart surgery. We spoke about the upcoming sedated eye exam and placing another set of ear tubes. We spoke about our 'mental health' as parents and primary caregivers and when she asked me those questions, I was frank and honest with my answers, this is difficult. We get no respite (outside of our wonderful Promise childcare and family visiting). We get no help. We are a two parent working family trying to meet four kids' needs and adding Tommy's additional medical issues is at times difficult emotionally to juggle all. We are like hundreds of thousands of working families with the added stress of a child with special healthcare needs..... battling an insurance company for the bare minimums.

I'm not complaining but I answered the list of questions that UHC had with my heart. The 'nurse' said a follow up call will happen in a month to discuss further needs for Tommy. I saw no help from this phone call at all. Again, I think care coordination and the 'nurses' that periodically call us are screening us for possibile reduction of services. Grrr.

Does anyone else out there receive calls like this regarding their childrens medical service management?

Wednesday, April 1

What works for us Wednesday

We recently learned that our medical insurance denied Tommy's speech therapy service request. Grrrr. When I had called the company few weeks back and was glad to hear they had approved our request for speech therapy...... I was overjoyed. That turned to extreme frustration when I learned they had altered the request to a single visit evaluation. Once the evaluation was done, then they issued a denial for our 40 visit request. Grrr.

Today, we filed an appeal to the decision. And that is "What Works for us Wednesday". I'm not sure if my point to this post is to show you how to write an appeal. Or if this post is meant to publicly state that UHC denies speech therapy services to children with Down syndrome. Or perhaps this post is simply meant to let UHC the "letter is in the mail" as they so nicely let me know when they refused to talk about it further. Hey, UHC, the letter is in the mail. And it will be graciously signed by our loving team members, SLP's and Doctors alike. Grrr.

April 1, 2009

United Healthcare (UHC)
Reference #1918125424

We received your letter dated March 16, 2009 and are disappointed with United Healthcare’s (UHC) determination that CPT#92507 is not a covered benefit under this medical insurance plan.

As quoted in your denial, treatment of speech, language, voice, communication is not a covered benefit. “UHC will pay benefits for speech therapy only to restore or rehabilitate any speech loss or impairment caused by an injury or illness or otherwise authorized by UHC.”

We are now requesting appeal to this decision.

As background, Thomas is a 27 month old very active toddler. He has Downs Syndrome and Hirschsprung’s disease. He also a Gtube for receiving approximately 24 ounces of milk or other thin liquids during the day.

It is imperative that we receive approval for him to receive speech and feeding therapies. These therapy sessions will be every other week for one hour each. The therapist is at Connections SLP and is trained in how to teach Thomas to drink from a cup and straw. This will be done to wean him off of his Gtube feedings. And yes, Thomas does have Down syndrome, and he will be able to speak someday thru these types of therapy sessions.

Currently, UHC is paying for Thomas’ Gtube supplies. This includes numerous feeding bags monthly, connector tubing which is replaced weekly, a continuous drip Infinity feeding pump, syringes, split gauze pads, bolus feed syringes, and the Gtubes themselves which are replaced quarterly. It is hard for our family to understand why you would decide to continue to pay thousands of dollars for Gtube supplies and deny our request for the much smaller cost of feeding/speech therapy. Please work with our family toward eliminating Thomas’ Gtube. Feeding therapies will be cost effective for both of us.

You have already denied the reimbursement of “ThickIt” a thickener that we purchase at the pharmacy to thicken Thomas’ thin liquids and keep his swallow safe. We are now paying out of pocket for something that Thomas needs to prevent aspiration. We are hoping that you will see the benefit of keeping Thomas safe from aspirating by providing feeding & speech therapy services.

You have already denied the reimbursement of “Prevacid Solutabs” for the reflux he gets from having a Gtube. Our family is confused as to why you believe a 27 month of toddler who doesn’t have a safe swallow could intake an oral capsule from the sheet you kindly forwarded to us of less expensive medications. Please work with our family and approve the feeding and speech therapy sessions so that someday Thomas can take the approved oral medications that you will reimburse.

You have already denied the reimbursement of compounded “Lansoprazole” which is for the reflux he gets from having a Gtube. Although you agreed with us on that appeal, you set the copay at $40. The pharmacy charges us $39.99 every 7-10 days that we get that prescription refilled. This has continued for approximately 130 weeks. We continue to be discouraged by the path of denials from UHC. We encourage you to work with us on approving the feeding and speech therapy sessions so Thomas can someday be weaned from the Gtube.

Please understand that we are not asking you for more than the minimum we believe our insurance company should help with medical for Thomas. Please review the denial for speech/feeding therapies to Connections. We hope that you will work with us while we work with Thomas toward total oral feedings and discontinue his Gtube.

We appreciate the time and effort you have taken to review this request. We are always available for your representatives to ask more questions.


Colin and Sandi McMillan

Tommy Adventures