Friday, February 27

Gap exception

The Gap exception for speech thru our primary insurance was APPROVED! At all 40 visits for the remainder of the year for Liam and another entire 40 visits for Tommy. HUGE, wonderful good news. We are thankful! This private speech place should be just what the boys need.

Wednesday, February 25

What works for us Wednesday

Understanding insurance benefits is no small feat. But when you have children with medical needs and developmental delays, it's an understatement to say that you need to read your benefits. You need to know how to 'work them' to your advantage. Many insurance companies post their benefits online and also allow you to read EOB's thru the internet (explanation of benefits) which greatly help ease reviewing ALL the claims.

We recently added speech therapy services thru a private SLP center (connections) once week on top of the speech and feeding therapies that we also receive from the 0-3 yrs program. Since we have three forms of insurance now, we learned a new rule.... since medicaid is our third form of insurance for Tommy they will only pay on claims that our primary insurance feels are allowable. And that is where our problem started, this private SLP was not in contract with our primary insurance.... no one was going to pay for speech therapy to them. So, we have spent the better part of two weeks stuck in a process called filing a "Gap Exception".

We asked for 40 visits for Liam for speech and the same for Tommy for the remainder of the year to this private SLP. Which would get us to the date that we start preschool. (Whether that is with the school district special education preschool or through a private Christian school we still haven't decided, an important question though as Wa State discriminates against providing State paid therapies (OT, PT, Speech) at a religious school, big bummer and is greatly influencing our decision). But back to the story, the Gap Exception has been filed and now the waiting game.

What worked for us in this process of adding a new service is to know our benefits and to "prime" our pediatrician that they may be asked by our insurance (and he was) about the 'need' to access speech therapies. A few simple phone calls ahead of time saved delays later. With a diagnosis like Down syndrome for Tommy (and Hirschsprung's disease).... and Liam having apraxia of speech I would have thought it a simple approval and no need for a pediatrician's involvement. And also to work through our care coordination department in our insurance company on getting all of the correct forms filed. Daily pestering phone calls to the insurance company due no good, but bring this mommy GREAT JOY.

Fingers crossed we get half of what we asked for. Which in the world of DD services is a high expectation...... unfortunately.

Saturday, February 21

We are sensational toddlers

But you knew that we were sensational toddlers already, right?
"Sensational toddlers" is actually a therapy that we added. We go once a week for about 1 1/2 hours. We sing in circle time (mommy tries to sign most of the words to me), we paint, we get sticky with different feeling things, we play in oatmeal or rice... you get the idea. Sensory. And lots of it. This week we got to play in ultrasound gel that was colored and we got to wipe it around on a giant board. The therapists and mommy try to work in lots of words and signs too. Hopefully mommy and daddy can keep up with this new group therapy!

Wednesday, February 18

What works for us Wednesday

I wish I had a photo for today's "What works for us" because it was hilarious. Home haircuts for the youngest boys. Nate would NEVER let me cut his hair. But Tommy and Liam were up for it. So, we purchased a WAHL home haircutter and we somehow made it through cutting both boys hair with minimal tears. The haircutter cost $19.99. We already saved $10 over going to Hairmasters :) That works for us. If you have young boys, I highly recommend this time and money saver.

Sunday, February 15

Singing and balloons

Today we ate lunch with friends and we sang happy birthday to a real sweet friend of mine. We even let pink balloons go into the sky!
We wished Chelsey Ebert happy birthday. She is in heaven now after winning her battle with cancer at 15 years young. I just loved that girl so much. A couple times we were at Children's Hospital at the same time and I always liked sitting on her bed or just talking to her in a hallway. Her smile, bright eyes and big heart are missed. I sent a smooch to heaven for my friend! xoxo

Lots of watery fun

Daddy and mommy and all four of us kids enjoyed the Great Wolf Lodge this weekend. Three hour drive away but worth it. Lots of water! It was 84 degrees inside the waterpark, totally indoors and was so much fun. The fort in this picture was four stories of kid friendly activities. Most of the park is accessible with a wheelchair, mommy saw two kiddos in wheelchairs enjoying the water too.

Although Hannah and Nate didn't slow down long enough for a picture, they enjoyed every slide MANY times. There is a teen center with activities after the slides close in the evenings.

Mommy and Nate went down one of the slides together and Nate got mommy so bad with warning her there was a 30 foot drop..... here it comes mom, hold on.... we are going to drop down 30 feet.... (seriously she thought she was going over an edge).

Sometimes I needed a little break away from all the noise. But I mostly just LOVED splashing in the water.

There are fountains inside some of the walking areas and I just plopped myself down and played with all those lil' sprinklers.

Mommy kept me in a swimming top so my Gtube was nice and tucked away.

Liam ran everywhere. He loved looking at all the different water areas.

Great trip if you love spending time with your family, don't want to do dishes and are tired of the winter cold weather.

Wednesday, February 11

What works for us Wednesday

We just finished a new box of stuff from the library. It was called the "water" theme kit. It definitely works for us, because it is a FREE activity!

There are so many of these preschool theme kits at the library. Mommy posted about this awhile back but thought a picture of a theme kit might be helpful. She also warns other parents to look inside the theme kit before you take it home. We are still 'young' two year olds.... so small parts in puzzles wouldn't work for us and some of the kits have small things. We have enjoyed kits on transportation, animals, friends.... and now water!

Mom put a picture here so you could see all the cool books we read about water. We got to see a new Kipper dvd all about water. We sang songs about water. We played with felt board that was a pond and had a duck on it. We even learned the sign for water. Hmmm, I think mommy and daddy have something planned for this weekend about 'water'. Stay tuned for some 'splashy' pictures! Until then.... go to the library and check out one of these theme kits, it works for us!

Tuesday, February 10

Mommy's first group talk

Mommy was given the opportunity to share our story of referral and use of Whatcom Center for Early Learning, to a church in Bellingham that funds this wonderful early intervention center.

She cried through her entire prepared speech! Yep, the whole thing. She is glad Miss Julie was there to be her usual incredible supportive and encouraging self. Here is what she had tried to say if any of you are interested:

Our story begins with a prenatal diagnosis of one of our twins having some type of a ‘trisomy chromosomal abnormality’ at week 20 of our pregnancy. This wasn’t something that had occurred before in our families, so we were confused. Not wanting to have any invasive testing, we opted to monitor our baby along with his healthy twin brother thru frequent ultrasound pictures. We were told that he probably had trisomy 13 or 18 and may only live a few hours. We prepared our hearts for the worse.

The boys were born at 37 weeks at St Joseph hospital. Tommy was twin A and after he was born was placed immediately on my chest and we fell in love! Liam was twin B and was born a footling breech. He was whisked away to oxygen and didn’t get that immediate mommy love. With only two Tylenols for pain relief I was happy my last childbirth labor was done!
Liam was on oxygen for most of the first day and was our greatest concern. But Tommy soon showed worrisome signs. Dr McGuiness sat on my bed to tell my husband, me and our families that Tommy probably had Down syndrome. Although we were thankful that we would have a longer lifetime with him, we knew that this diagnosis was difficult.

Tommy spent over a third of his first year of life at Children’s Hospital in Seattle. He was diagnosed with Hirschsprung’s disease which affects the motility in intestines. He lost one third of his colon to try and improve his efforts to poop. He also had open heart surgery at 6 months old to correct an AV canal. He had a hernia surgically repaired and had a Gtube placed for feedings. We have been in and out of hospitals many times over the two years. Local doctors have termed Tommy ‘medically complex’. He is on permanent pulmonary care and many daily medications. But besides all of his ‘care’ he is one sweet, smiley, loving, little boy. And his twin brother Liam is one active, happy, caring little boy.

Time passed after our surgeries with Tommy slowed down. We were contacted by the Opportunity Council to see if we were interested in services. Weeks turned to months and then we were notified that WCEL had space for us after being on a wait list.

As parents to four kids we have realized that education when they are very young is so important. But nowhere is such a responsibility for education more important, more heavy on our hearts, more involved than with a child that has a disability. Add onto that immense parental responsibility the feelings of guilt over the disability, anger, tiredness and confusion. We were not ‘together’ parents when our son was referred to WCEL. We were financially, emotionally and physically broken.

We weren’t down for long though. “Start early, get help and take charge” soon became our chant. When we first began at WCEL we were given an outstanding feeding therapist who came to our home once every other week. Then we added the parent-child therapeutic playgroups on Mondays. We enjoy many parent support sessions which include topics of communication with doctors and preschool transitions. We benefit from the coordination of family resources and are always asked what our family needs include. Our FRC has emotionally supported one tired mommy more than either of us would ever share! We then added occupational therapy thru WCEL in our home once every other week for Tommy and he began walking before his second birthday. After Liam was evaluated to have a speech delay, he began speech therapy sessions in our home every other week. The twins love their therapy sessions. The therapists have lots of games and make learning so much fun for the boys. They teach us as parents how to approach teaching our boys. Everyone at WCEL is encouraging. No one has a single answer or cure, rather they have paths, coordinated ideas, team approaches to teaching us as parents and our boys.

We recently added Sensational Toddlers therapeutic group therapy on Wednesdays to encourage Liam and Tommy’s sensory exploration. A great angle to get at speech and become more familiar with Liam’s senses.

“Parent to parent” informally has been a huge help to us also. We have learned so much from each parent. Tommy is more similar medically to children that have different diagnoses than Ds. So the chance to talk to a mom of a boy that has a Gtube before Tommy had his placed was so comforting. The opportunity to go to P2P swimming event and have a teenager with a Gtube show us how not to worry in the water was great. The chance to talk to a mom of a child on permanent pulmonary care and learn that an asthma inhaler for daycare is a portable solution to a nebulizer treatment was so beneficial to Tommy and us. Our teenagers benefited from the Super Sitter course offered through P2P and their skills have been a huge help in our family.
We have accessed every service at WCEL. And have been so humbled by their encouragement and positive attitudes. The blue house is amazing!

Looking back, we have been able to continue through these painful trials because we can stand strong in faith. It isn’t always easy. Some days we are homesick for our old lives before the twins and how easy each day was.

In the bible, it is Peter’s letter that becomes a survival manual for all who live in shattered dreams. Peter promises that trials are only temporary. Peter’s words urge us to live in confidence, patience and hope that come to all who place their care in God.
1 Peter 4:12-19.

We wouldn’t trade any of our four kids for anything. Each day is precious and we realize how fragile life is. We are enjoying the lifetimes we are given.

Sunday, February 8

Prayers of love and support

There is something that many of us as mothers to kids with 'special needs' share. It happens often with all mothers, love for our children. But when you parent a child with special needs, especially kids that have shorter lifetimes, that love and support is so incredibly strong. And I believe there are so many families locally that would like to reach out to two specific whatcom county families that need to be kept in our prayers. This has been heavy on my heart for weeks. Drop them a line of supportive words on their websites. Include them in your prayer or meditation for the day (whatever works for you). I know that we are some powerfully loving mommas and can definitely offer love to these two families.

The first is a family that I had posted awhile back about, the Brooks family in Lynden. Their sweet identical twin girls (Haley and Avery) are battling a mitochondrial disorder. This makes the girls function at a severely delayed age of 3 months (they are just over a year now). This family has faced all odds of adversity. Recently, Stephanie who is an amazing mom, was attacked in their home by a stranger. She was in the process of mending and healing her body and we just learned that the twins have been readmitted to Children's Hospital. I just shake my head in disbelief that this family has so many trials. Please pray that their girls' pain is well managed. They are fed thru ng tubes and we know that some of you reading this can share in the difficult memories of what ng tube feedings bring. Please keep them in your thoughts for their financial situation is dismal and they need a supportive community.

The second family is Kyle Rogers' family in Bellingham, an amazing and handsome eight year old boy that ended his battle with cancer yesterday. This brave fighter is an inspiration to our family and has changed our lives forever.

I'm sure these two families would agree, whatever you are doing right now.... it's not important. Stop folding the laundry, don't do the dishes, turn the 'puter off.... hug your kids and do something memorable with them! Life is short and fragile. Make the most of it.

What works for us

This week we met our speech therapist at Elizabeth Park and we had such a fun session with her. We highly recommend meeting at a park or some other place that you normally go to. Meeting at home gets so boring!
Liam loved to 'talk' into the covered slide where his voice sounded SO BIG. He signed more and please and said somthing like 'up'. As for me? I ran everywhere. I went down the slide. I walked up the stairs. I ran on the sidewalk. No time for talking!

Sunday, February 1

Tommy's G-tube change

Daddy changed Tommy's G-tube to a new one. The old one was a few months old and kinda leaky and yukky. Daddy tried to make the whole change out go smoothly with minimal ouchi-ness. But Tommy and mommy cried thru the whole thing. It was less than 3 minutes long. Whew! Done.

Tommy Adventures