Sunday, February 27, 2011

Sister Sunday

After 29 long days, Lauren finally gets to meet her baby brother.  It was love at first sight!
I often write about Evan on this blog, but it really is about our family.  A huge part of our family is big sister LAUREN! She is an amazing big sister.  She has loved Evan from the moment she first laid eyes on him.  When he was born, the hospital was not allowing kids into the hospital due to the flu season, so she had to wait 29 long days to meet her baby brother. 

I LOVE the way she makes him laugh, really the way she makes all of us laugh.  I am so proud of her for her protective nature of her brother.  He couldn't be more lucky to have her for a big sister!!


Christmas 2009

Easter 2010

Lauren giving Evan a push his first time ever in a swing

Evans 1st birthday! October 9, 2010

Christmas 2010

Thursday, February 24, 2011

Mission to Medicaid

Earlier this week we had a Medicaid home visit to get Evan approved for the Medicaid Disability Waiver.  In the state of Colorado, in order to get disability Medicaid it is quite a process.  First you have to apply for Social Security Disability Insurance, even if you know you are going to get denied, as we did because of your income.  You have to have that denial before you can proceed in applying for the Medicaid.  Once you apply for the Medicaid they come out to do a home visit to assure that your child is truly disabled.  After the home visit, if you qualify, than you are put on a waiting list to actually get the Medicaid.  A 3 to 5 year waiting list... 

Colorado only has 1300 spots available for disabled kids at any given time.  We were told that right now we are approximately number 400 something on the waiting list.  So once you are on the waiting list you wait for a child to:

1. Get better
2. Turn 18
3. Die

I can only hope that a ton of kids get better or turn 18, and quickly...

It's a funny thing that they sent someone out to observe my sons disability.  The woman came and asked a ton of questions about Evan. After she left and I was replaying the scene in my head, I realized that a lot of my answers were, not embellished, but maybe dramatized.  I don't usually do this.  I often find myself telling people that his needs are just part of our day to day routine, that he is strong and can overcome his challenges.  I realized I did this though because I really wanted him to get approved.  We have great health insurance, but it costs us a lot of money out of pocket.  Also, sadly, there are things that we can't get for Evan through our regular insurance which we able to receive through Medicaid, and receive them for free. 

Now, we wait.  

Sunday, February 20, 2011

Mostly Calm

Things around here have been fairly uneventful and mostly calm since coming home from the hospital 2 weeks ago, except one false alarm.  On Thursday I got a call from daycare saying that when they cathed him a lot of blood came out of the catheter.  I immediately assumed it was a bad UTI, so I called the doctor for an appointment that afternoon.  When I got to daycare to observe for myself what they had gotten out of his cath, it was an alarming amount of blood,  I thought it seemed a bit too much to be a UTI.  When we got to the doctor they cathed him again to try to send a urine sample to screen for a UTI, but they also just got blood.  They sent us for blood work to assure there was no internal bleeding somewhere and the pediatrician called our Urologist.  The blood test came back normal and they were unable to detect anything in the urine sample because it was pure blood.  .  The doctor came back to us and told us they thought maybe the catheter that had been used had an uncut sharp edge that made a cut somewhere inside his bladder, more than likely near his prostate because that is a very vascular area.  He had a Foley catheter put in so that we would not have to continue inserting catheters and aggravating the injured area.  He gets that taken out tomorrow.

While waiting for all this information I got on Facebook to the Spina Bifida Group and asked if anyone had ever experienced this.  As always, my fellow SB family was right there with reassuring information and prayers.  Other people had gone through this and it helped calm my nerves that nothing serious was going on. 

Other than this happening he seems to be doing really well.  We had a follow up with the GI doctor last Monday and he was only down 1 ounce since we left the hospital.  This is the least amount of weight he has lost between visits for a while.  He is still not eating the way he was before the hospitalization, but he is getting there. 

Tomorrow is the start of a new phase for Evan as he starts Speech Therapy.  As of now, he babbles and the only resemblance of a word that he can say is "dada" although I'm not sure he really understands that it has meaning.  I am so excited for him to start talking and being able to communicate with us.  I am so looking forward to hearing the sweet word "mama" from him. 

Thursday, February 10, 2011

In the News

It's been almost a week since we have been home from the hospital.  Evan is doing amazing,  You would never know he had 2 surgeries just 8 days ago.  On Monday, I took him to the pediatrician for a follow up from our hospital stay only to find out that now he has an ear infection, so we had to start him on antibiotics.   This kid can truly not catch a break.  It took him a few days to get his appetite back but we are hoping that this surgery will be the answer.
Earlier this week I got word that our insurance company has finally approved a wheelchair for him.  He has a chair that is on loan, but it's too big and one his size will be easier for him to maneuver.  I am excited for him to have the opportunity to truly be mobile. It is hard to watch him observe everyone around him moving and see in his eyes how badly he wants to do the same.

This has been a craze of talk about the new study released regarding prenatal surgery for kids diagnosed with Spina Bifida.  A lot of other moms are questioning themselves and the decisions they made regarding being involved with it, as am I.  I never got a ton of information on the study other than the basics.  I knew with just the basics that as much benefit as it may have on Evan, there were risks.  Risks for him, for me and for our family as a whole. I worried about what it would do to Lauren for me to be gone for such a chunk of time.  I worried about how we would pay the bills if I couldn't work.  I worried I could lose the baby in my belly who I already loved so dearly.  It wasn't the right thing for us.  I must admit there is that small question in the back of my mind how differently he would be physically if we pursued it more, but in the end, it's his personality that makes him so amazing.  Even if he will never be a football star, or a famous track runner, even if he never runs at all, he is ours and he is perfect.

Monday, February 7, 2011

Give Love

This post came from a fellow SB mom, Joanna!  It seems so appropriate for Valentines Day and really any day which  you are lucky enough to love or be loved!!

Give Love

Because it's February.
Because I just decorated my house in pink and red hearts.
Because Valentines are not just for couples...but friends, mommies, daddies, siblings, classmates and neighbors.
Because everybody needs love. And not the romantic comedy, butterflies in your stomach, plucking petals off daisies kind of love.

They need the "I'm yours forever" kind of love.
The "we can do this together" kind of love.
The "can't stop starring at you" kind of love.
The "I'm always there for you" kind of love.
The "I can't keep myself from smiling around you" kind of love.
The "I promise to make time to laugh with you" kind of love.
The "everything you say is so important to me" kind of love.
The " I couldn't be prouder of you in this moment" kind of love.
The love that lifts you up....
Squeezes you tight...
Makes even hard times feel alright..
The love that teaches you all that you need to know...
And gives you support you need to grow...
The undeniable you were made for me...
And together we make a family...
What's mine is yours...
I treasure each kiss...
And everyone deserves to feel like this...
Kind of Love.

Because real love is something that cannot be bought - only shared. We need it from the time we are born - and those of us who having loving families know that NOTHING could have replaced that. The love of family - the love I was given as a child - made me who I am today. It teaches us how to love the rest of our lives. It can never be truly expressed in the form of greeting cards, chocolates, flowers, or jewelry. Those sweet tokens and gestures give momentary happiness - it's the feeling love behind them that really means anything at all. So with that in mind, and in the spirit of this holiday of love - I would like to propose the perfect gift for your loved ones.
Give the gift of Love itself.
Give Love.
You can bring joy and love not only to those who hold your heart -
but to child who needs your help.
Give Love.
By helping one little boy come home to the family who is waiting to give him this kind of love. The kind of love every single one of these children pictured above are given every day.
The kind of love so many of us are blessed to have.
The kind of love he deserves.
Give Love.
Shea's story is a remarkable one - and it is only just beginning. He now has a family ready for him - and Shea is WAITING to come home. His family is actively completing the adoption process - eager to give Shea the love, support and care only a family can give. The only thing we can do to help them bring Shea home as soon as possible is to GIVE.
Give what you have.
$5, $25, $50
It's not the size of the gift, but the size of the heart behind it.
It is so costly to adopt internationally - so much so that many people say "we can't afford that" or "it's just not possible for us". But this family has given everything they have not once, not twice, but 3 TIMES (read their blog - they are an amazing family)and is making that leap of faith to make Shea a part of their family - but they need help raising the last bits.
(And in adoption language, "bits" = $9,000!)
They need our HELP!

As a friend so honestly reminded me " Let's face it ... we all spend/waste $$$ on this every year. The chocolate is gone...the flowers die... and all you have is a distant memory of the token(s) you invested in."

How much more meaningful - how much more noble - how much more true to what love is all about - to give that money instead to this family - to this little boy -
to bring him home - to give him Love.
So help share the love...with Shea. :)

Isn't that the most adorable Valentine ever?!
It's message is simple - it's purpose sincere.
Make a donation (even just $5!) in the name of a friend or loved one - to Shea's Adoption Grant (through the chipin on the right hand margin of this page) or visit his family's blog and donate through their chipin (it all goes to his account.) Then print out these adorable Shea Valentines (see Donation Gift Cards for the printable link) and give them to your sweetie, your sister, your mother, your friend - and see their faces light up at the sweet face on the card.

I can't think of a sweeter, kinder, more beautiful way to Give Love.
Can you?

Tuesday, February 1, 2011

A Really Hard Day

Today has been a hard day. A really hard day. I don't know why but it seems like just when I've gotten it all together and feel like I have a little control over Evans' health, thinks get turned upside down.  Up until now I have been handling this hospitalization well, taking it in stride.  Today, that all changed. 

During this entire hospitalization I have been meeting with a multitude of doctors discussing Evans upcoming surgery.  I expressed to the doctors, more than once, my desire to get this done during this hospitalization.  I felt like we were all on the same page and moving in that direction.  We had to get clearance from many different doctors due to his recent respiratory infection.  I had the go ahead from our hospitalist, gastrointerologist, neurosurgeon, surgeon and pulmonalogist.  They were waiting to decide exactly when to do surgery until we had the swallow study done, which occurred this morning. 

Around 2:00 the hospitalist resident came in and told me as soon as we got the ok from the anesthesiologist the surgeons would give us a surgery time.  She came back an hour later and said that anesthesia got the ok, so the surgeon put us on his schedule....for February 9th.  I'm not sure what the rationale was behind that date.  I can't imagine that we are going to sit in the hospital for 7 more days when Evan is healthy and wait... Unfortunately, when I asked to speak with the surgeon, I was only able to talk with his resident.  I expressed my concerns/frustrations to her about waiting.  If we were to go home, Evan would return to daycare and which leads to more exposure to germs.  He could and probably would be in the same respiratory distress that he is now.  I explained that I have a young daughter at home who's live has been turned upside down and misses her mom and brother and to send us home for 7 days then admit us again for at least 3 days, really is a roller coaster for her.  I tried to reason with her about the financial aspect.  We are here, we will be responsible for our $500 copay and if we come back in 7 days, I will be required to pay an additional $500 copay.  Her response to me was that I could keep talking, but there was nothing she could do, there was absolutely no open time in any of the operating rooms until then. 

The next few hours were very emotional, angering, and inappropriate.  The hospitalist resident came and sat with me and made phone calls and fought for what she felt was the right thing to do, to get this surgery done now and not later.  She was yelled at by the surgeon, and continued to stand up for herself and for Evan.  When the door was shut she sat down and shed tears with me because she felt like she should be able to do more, but felt she was powerless because she is just a resident.  She is going to be an AMAZING doctor.

After all this I was informed at 9:00 pm that surgery is tomorrow at 7:30 am.  I will be alone because Jeff has to get Lauren to school and with this short of notice it's too late to make any arrangement.  I will send him into surgery hoping  that I am making the right decision.,  I fear that if we don't do this, he will get another cold, aspirate and we could end up right back in this situation.  That terrifies me.  This time we were lucky and I got him to the doctor in time.  What if I miss the signs the next time and it's too late.  Being a parent is so hard.  Being a parent of a sick child is even harder.  You have to advocate for your child when they have no voice.  I will always fight for my kids. 

I need prayers for strength for me and even more prayers that Evan will do well in surgery and he will finally start to heal. 

Tomorrow has to be a better day...