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Archive for April, 2012

Fight for Baby Houston

A few weeks ago, my incredibly thoughtful aunt contacted me about a baby boy for whose life she has been fighting to save in any way she can. The boy’s name is Houston, and he was born on November 18, 2011 with a condition called Total Anomalous Pulmonary Venous Return (TAPVR).

Within 24 hours of his birth, Houston was life-flighted to Hershey Medical Center for his first open heart surgery. He has endured three surgeries in his short life, in an effort to correct the issue in his veins. However, the treatement Houston needed was beyond what could be given at Hershey. Houston’s potentially life-saving treatment was/is at Children’s Hospital of Boston. However, Houston is on Medicaid through Gateway Health Plan, a company that refused to pay for Houston’s transfer to Boston, or for the treatment. As such, Houston was released to his home last week, for the purpose of spending his potential last days with his family. One doctor is saying that Houston likely has 3 weeks to live. Another doctor says it is very possible Houston could beat the odds and survive this.

The family is still exploring the option of getting Houston to Boston. There is a chance the treatment in Boston could still be done and could save this sweet boy. The Boston hospital may take Houston on as a compassionate case. I do not know more details than that at this point.

What I do know is that Houston’s Medicaid company has done nothing but make Houston’s battle for life more difficult. They have refused to pay for the surgery that could save him. They refused to pay for a medical crib for his home, which he so desperately needed. And now, they are refusing the nursing care he needs. The family and nurses are fighting to get this for him as we speak. If anyone has a moment and would be willing to send a message to the Chief Medical Officer of Gateway Health Plan on Houston’s behalf, please let me know, and I will get you the contact information. I will be sending such an email myself.

Houston also needs prayers. Lots of them. In addition, Houston’s family has been faced with blow after blow in their efforts to take care of this sweet boy. His father has lost his job. He has been in an automobile accident. And they are struggling to get back on their feet. If anyone has any donations of clothes, gift cards, food, or even monetary donations, they are being collected on his behalf, and I will get anyone who asks the contact info for this family. I am sure they would also welcome cards or messages of support. The knowledge of a thought or a prayer can make a world of difference.

If you would like to follow Baby Houston’s story, you can do so via this Facebook page: http://www.facebook.com/#!/pages/Houston-Schwartz/289588334427909.

Below is the letter I sent to the CMO.

“Dr. M:

I am emailing you on behalf of Baby Houston Schwartz.  I know you are, by now, aware of his situation as my aunt, SK, has contacted you on three separate occasions to plead with you to give this sweet baby boy the help he so desperately needs and deserves.

I understand that many of the things Houston needs in order to maximize his odds of survival have been rejected due to lack of your company’s willingness to pay for them.  The transfer to Boston and medical treatment that could have very well been the key to this boy’s survival was rejected.  A medical crib that would have given his family easy access to the equipment that he must have was rejected.  And now, 24/7 nursing care is being rejected for this sweet little baby boy.  I am begging you to reconsider. 

I have been informed that Houston is a fighter.  He has surprised his doctors and nurses over and over again.  One doctor even says there is a chance he will survive this.  Should this baby not be equipped with the appropriate medical tools to accompany him into the battle for his life?  A battle that he could very well win? 

As a parent who knows what it is like to watch her baby take her final breath in her arms, I am begging you to not let this family face the same.  Not without giving him every opportunity to live.  I understand that regardless of anything that is done to help this baby boy, his life’s purpose may be fulfilled in a short time.  However, don’t let this family live out their lives, haunted by the “what ifs” and the “if onlys”.  If Houston must leave this world behind him, let it be with the knowledge that everything that could have possibly been done was done.  And in that process, it is more than a little bit possible that his life could be saved. 

Houston’s life deserves to be considered beyond the parameters of cost/benefit analysis.  Houston is a child.  He is a son.  A grandson.  A brother.  One that is very loved and wanted. 

What if he were your son?”

============

Edited to add the following:

If anyone would like to send anything (cards, words of encouragement, clothing, gift cards for food, anything!) to Baby Houston’s family, you can do so at the following address:

UPS Store # 644
Box 505
2536 Eastern Blvd.
York Pa 17402

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Loss

I have heard a lot of stories of loss lately, and my heart is breaking for the families who are standing at the beginning of the path which seemingly leads to nothing but darkness. I have been there, and would never wish it on anyone. I know what it’s like to be pinned to the floor by grief. To feel a sharp stab of pain with every inward breath. To feel as though my very soul has been sucked away, leaving an empty, robotic clone of me behind.

I have not forgotten those days. The days that left me feeling as though emotional healing was unattainable. When I didn’t even want to recover, because I thought the pain was my link to the baby I kissed goodbye before barely having a chance to say hello.

I wish I could tell them, it does get better. That they will always miss their children, and nothing will ever fill the gap left behind by a child moving from this life to the next. But life DOES have a way of blunting the sharpness and slowing down the frequency of the blows. That it is possible to feel joy, true joy, after wading through the deepest sorrow imaginable. That a person can be happy again.

The first milestone is the ability to wear a smile on the outside, even when painfully raw on the inside. At first, even that is impossible. But, bit by bit, a person begins to interact with the outside world again. To go buy groceries without fear of crumpling into a sobbing heap in the middle of the store. Eventually, the smile feels sincere. And then, one day, a laugh. A laugh that feels foreign from lack of use. But it is still a laugh. Then laughter that comes more freely. Slowly, pieces of the person who existed before being rendered unrecognizable by grief begin to emerge. All but the one piece. THE missing piece. But it becomes manageable. And manageable turns into the ability to live life fully, even when someone’s absence is ever-present. That never fully goes away. What could have been will always be present in a mother’s mind, easily triggered by both the predictable and the unexpected.

The heart can heal, mostly. But the heart doesn’t forget. And the innermost core of a person who has experienced deep loss will always remain tender.

And so, for those who are new to this way of life, my heart goes out to them. My heart aches for them.

And my heart still aches for my own sweet girl.

It always will.

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15 month checkup

Liam had his 15 month  checkup last Thursday, on April 12.  He weighed in at 21 lbs 4 oz  and was 31.75″ long.  This puts him around the 10th percentile for weight (I thought the pediatrician said he was at the 5th, but our paper says 10th) and the 75th percentile for height.  His head was between the 10th and 25th percentiles.  He remains my long and lean little man!  He looks very healthy – you would never look at him and think he isn’t getting enough to eat.  He is definitely thin, but he isn’t wasting away either.  He is absolutely perfect.  🙂

He got 3 shots at this visit and, for the very first time, he did not run a fever afterwards! He hasn’t even been fussy, so I’m thrilled about that.

His next checkup is at 18 months, and he won’t be due for any shots at that one, thankfully.

On a developmental level, Liam is learning the purpose of more and more objects all the time.  It is fun to watch him analyze something, and then attempt to use it in the manner in which it is intended.  He knows what to do with a toothbrush.  I have already mentioned that he knows how to use a remote control – he has known that for months.  He scribbles on paper with crayons.  He combs his hair.  I know there are many more examples I’m not remembering at the moment.  It seemed that last year the biggest focus was on motor skill development.  This year, it seems he is learning so much more abuot the world around him and how to operate in it.

I want to share a couple videos.  I am sorry they are sideways – I can’t figure out how to change that.  I took them with my phone, and for some reason it always makes both pictures and videos that way!

 This first one is of him blowing kisses. 

and the next one is of him driving his new Cozy Coupe!

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Catchup time again…

Warning:  this post is all over the place!  It is hard to make catchup posts flow smoothly, because there is so much to share!

I can’t believe I have let almost 2 months go by without updating!  That is definitely a record!  I want to do better, I do!  However, life has been incredibly busy and full of conflicting demands on my time.  Unfortunately, this blog is one of the things I have let slip!  I am going to try to do better, and I think it will get easier as Liam gets older.  But for now, we are in the peak of the crazy toddler stage!  And, as anyone who has ever parented a toddler can vouch, it’s…well it’s crazy!!!  Fun, but crazy.  🙂 

Liam is doing great.  He has completely recovered from mono, and is running around all over the place.  He loves the outdoors.  In fact, if he is upset, a trip outside instantly calms him.  I have been taking him out on nightly stroller rides, and he is really enjoying that. 

In addition to the few words he says, he constantly speaks this super cute “guda guda” jibberish.    I have recorded it on my phone, but haven’t gotten a video yet.  I need to get on that before he stops! 

He shakes his head both “yes” and “no” and knows what they mean.  He mostly uses the “no” head shake  – “yes” is newer to him.  But, if I offer him something to eat he doesn’t want, he’ll shake his head “no”.  Or, if he takes a bite (or drink) of something that doesn’t appeal to him, he’ll start shaking his head.    He also does it if he hears someone say the word “no”.  I DO have that on video – I will have to share it soon!

He is such a sweet boy – he smiles and laughs all the time, and he always has time to stop and give us love.  He also freely shares his hugs with just about anyone, which is always a big hit!  I am glad he is still a snuggle bug – I have had so many parents of toddlers tell me their babies don’t have time for such things!  But all that sweetness doesn’t keep him from throwing fits or from being a mischievious little boy!  I usually try to react to the fits, other than to divert his attention or pick him up to calm him.   They can be frustrating, especially in the middle of a store or restaurant, but I know they won’t last forever. 

In addition to making us smile, making our hearts melt, and admittedly, making us want to pull our hair out sometimes, Liam also is quite good at making us laugh with the cute little things he does.  A few weeks ago, we were out shopping with Liam’s Great-Grandma Mohr and Great-Aunt Cindy, and we went into Gymboree to look at some potential Easter outfits.  We kept handing him hats, because I was trying to find one he would keep on his head.  Nathan pulled a baseball cap off the shelf and handed it to him, he looked at it, and said “dada”.  He knows exactly who wears those kinds of hats!

He is also very smart.  I have this speaker dock for my iPod and phone at home, and it came with a remote that I never use.  I may have used it once or twice since I had it.  Well, Liam loves to play with remotes, and so the other day, I handed him that one to play with as a replacement for the tv remote I had just taken from him.  He took it, walked into the room where my speaker dock is located, and started pointing the remote at it!  I was amazed.  He also knows how to turn the tv off and on with the tv remote.  He is our tech savvy little man!

In March, we went on vacation to Emerald Isle, NC.  We rented a house right on the beach, and it was wonderful!  It was beautiful, quiet, and just an overall relaxing trip.  Liam did great on the flight both to AND from NC – he slept the entire plane ride!  I was so grateful for that – he had meltdowns at the airport, and I was worried he was going to be a difficult passenger.  I think there was too much to see at the airport, and he wanted to get down and explore it!  I walked him around a little, and that seemed to help.

While we were in NC, we got to spend some time with my amazing friend Lori & her sweet boy Luke!  We went to the aquarium with them one day, and the boys had such a great time walking around and looking at all of the different sea creatures!  And then another day, Lori and Luke came out to the rental house and we let the boys play on the beach.  They dug in the sand, ate the sand, and watched the seagulls.   (As a side note, please send Lori & her family some prayers.  I don’t want to say why without first asking her permission, but they could use them right now.)

Here are some pictures from our trip:

This past week-end, as everone knows, was Easter.  On Saturday, Liam had a great time doing an Easter egg hunt with his cousins Ella and Nolan.  Here are some pictures from that day.

We also visited Madelyn’s grave.  We took her some flowers for Easter, and I thought about how much I miss her, and how much I wish she could be a bigger part of our holiday traditions than graveside flowers.  Some days, losing her seems so fresh.  Other days, it feels like another lifetime.  But I always miss her, and always wish she could experience life with us.

And then, here are some pictures of him in his new Easter outfit.   He got some new books, llama plush toy (we love the Llama Llama books at our house – I’m thinking 2nd birthday party theme!), some yogurt melts, puffs, a new sippy cup, and even a little bit of candy. 

I know I’m missing some things, but I at least covered the big things, I think!  I’ll try not to let 2 months go by next time.  In fact, today is his 15 month checkup, so I’ll be sure to update after that!

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